I wrote an entire diary in one section so this is long. It is a tribute to my dear mother and her battle with Glioblastoma Multiforme, which took her from us on November 10, 2007. I have read several others blogs and know how important it was for me to see how others have dealt with this devastating disease... some differences, many commonalities.
I want to share her story with others - Even though its only one person's experience, I hope it is informative and in some way helpful to others - as others' stories have been to me. I wish strength, peace and love to everyone who is battling GBM.
It’s now been 16 days since my mom died but after reading other people’s stories, I decided I wanted to write Mimi’s story so I could always remember exactly what happened. I did keep a diary of sorts. Mainly notes to myself so I could keep all the nursing and medicine instructions straight but started to include other information, like who had visited, stuff like that. But my memory seems to be very poor lately, I can’t remember details, which I think is due not only to the stress but also due to my thyroid, which was giving me trouble for months before mommy got sick. Despite losing a LOT of hair, thank God I was able to keep that stupid condition under control enough, so I could stay with her and care for her as I wanted and needed to.
I started to notice a change in my mom over the summer, actually sometime during the spring, maybe late spring. She was a little more tired, a little more distant, a little less talkative, a little less initiative. This occurred slowly at first, almost imperceptible; but then it grew a little more and more until I thought that maybe I had said something to her that hurt her feelings and she was annoyed with me, so she was staying away or she wasn’t calling me as much as she always had – though that wouldn’t have been like her at all. I honestly couldn’t remember what I might have said or what it would be; but I know I had been short with her at times, when she asked questions that seemed really far out. I can’t think of anything specific right now; but my brothers, John, my girls, or Poppy would all know what I meant. Every once in a while, and it seemed to be happening with a little more frequency, Mimi would come out with some doozey of a question and I’d be like, “Mom, what! What are you talking about?” and then I’d think to myself, she’s just saying these kind of things for attention. I’d catch myself becoming more and more impatient with answering her what seemed like sometimes ridiculous questions and then I’d feel bad, and I’d call her later and apologize if I had been short with her and tell her I wasn’t feeling well, I was really tired – all the same excuses. I look back on it now and I wonder, “was this all about her tumor? Had it already started to affect her thinking ability?”
Mimi had always had her “mimi” way about her but during this time period, it was definitely much more noticeable. I had even started to chalk it off to her age and that maybe she was just starting to get senile. The other thing I noticed in addition to her fatigue and her sometimes crazy questions was that she constantly had a headache…in fact, that had been going on for a very long time, for maybe a year Mom would talk about how she almost never didn’t have a headache at some level. I remember complaining and being very annoyed that the doctors couldn’t, or rather wouldn’t, give her better pain relief. I deeply resented her being told that was all the pain pills she could get cause they didn’t want her to get “addicted”. What incredible bullshit, obviously from people that never suffered from chronic headaches.
So sometime in the spring of 2007, I really noticed this progression in Mimi’s changes – constant pain, increasingly debilitating fatigue and her sometimes outlandish comments and questions. We have all been racked with self doubts as to why didn’t we pick up better on these symptoms, why didn’t we do something earlier; but I honestly can say that would have been very tricky. My mom had suffered from chronic headaches her entire life, we thought these increases in constant headaches was probably due to her increasing tolerance she was developing to her headache medicine. Her increasing fatigue levels? She had been diagnosed with Multiple Sclerosis since 1992 – fatigue was a constant issue for her because of that awful disease…so we thought that her MS was getting worse – plus she was 73 years old, just the general aging process was going to catch up to her. All these health issues that she had had for years masked her tumor symptoms from us for many months; so while I am sad that we didn’t do something earlier, on the other hand, I am realistic enough to know that we’re not super human and that our thought processes were logical. There was no other reason to suspect anything other than her known health problems for the deterioration she had experienced during this timeframe.
Then in June 2007, Dad took Mimi to see her neurologist, who had been treating her for MS for over a decade, and nothing came out of that check up. Mimi must have communicated how she was doing and nothing extraordinary must have stood out during that exam because the only thing that came out of that exam was that they were going to stop some meds she had been taking to help her not have to urinate so often, so she could sleep better during the night., that medicine was giving her some gastrointestinal problems. They were also trying to cut her back on the amount of Tylenol she was taking and closely manage her prescribed pain meds at the time, which was a codeine-Tylenol product. The poor lady lived by and for the 4 hour intervals when she could take her next pain meds since they weren’t helping her enough. So the outcome was that she continue to manage her pain meds so that they could work more “effectively” and her neurologist would see her again at her next regularly scheduled time, later in the fall, October I think.
During this time, she was very fatigued and had continual headaches. The other symptom she developed was a very raspy voice – like laryngitis. It was very hard to hear her over the phone. We thought allergies at first, then we just weren’t sure – but no fever, no soreness….just very soft, raspy voice.
During the summer, I would call her to check on her and we’d still do little things together, little shopping trips or the like. Nothing big, though I was trying to figure out how we could plan something for a trip with her, Poppy and me to go see Michelle’s (my daughter) apartment in Philly – I was planning to do this in late September, when the crowds were less at the visitor sites and it was cooler. I talked to Mimi and Chellie both about how we’d do this and what we’d do (Independence Hall, the City Tavern again for dinner and also definitely visit Valley Forge). I even brought back brochures and maps from when I vacationed at Chellie’s new apartment for a week in June. I showed Mimi all the pictures I took on my phone of Valley Forge and Chelle’s apartment and we talked with fun anticipation of our trip this fall.
But she was noticeably fatigued during the summer…everything seemed to take a big toll out of her and she’d need days to literally sleep all day and rest up. She listened to Kyle’s (her grandson) ball games, in front of the fan on scorching summer days, even though I’d invite her to come down to my place, at least during the day where it was so much cooler and more comfortable for her. She didn’t come down due to her fatigue. I can’t imagine how uncomfortable she must have been, sweating it out in that front room, laid out in pain from her headaches and exhausted with fatigue. That is one of my biggest regrets, that I should have taken the initiative to get my parents an air conditioner so that at least she could have been a little more comfortable. But I didn’t and now its too late.
There were a couple of things that really made her happy this summer and which will I treasure in my heart as I remember her. In July, she and Poppy went to Cape Cod for several days to watch Kyle play baseball. They were going to stay on the Mass mainland; but I was able to help them find an even less expensive option just a few miles from Chatham at a little family run hotel, so they were close to their grandson and the team’s games.
They had a wonderful time, watching Kyle play, talking to other parent’s and grandparents’ about their kids, going out to eat with Kyle. Mimi even got special acknowledgement over the loudspeaker (and so also on the radio public broadcast of the game) for the chocolate chip cookies she baked from scratch for her boy and his teammates. Kyle got her a t-shirt and a bracelet that she cherished and wore constantly, including wearing it in the hospital later on. She was buried wearing her beloved Chatham A’s baseball bracelet. This was a perfect trip for her, she got to see her grandson play ball, got to be a grandma and fuss over him and brag a little about him, and she got some acknowledgement herself. I’m so very thankful for this.
In late summer, Mimi got just a little bit down because she thought she might have been bypassed for possibly a younger person to judge at the New York State Fair, something she loved to do and which she had been asked to do in the past. Then, in early August, she got a letter from the New York State Fair inviting her to judge the Adult/Open class needlepoint and handwork competition. She had done this for years and thoroughly enjoyed a chance to look at the beautiful handwork of others. Mimi was an excellent judge – very knowledgeable, very particular, but very fair. She was so tickled that she was still wanted and needed by the Fair Association and she drove herself in mid August all the way to Syracuse (an hour drive), judged all day long and drove herself home again. We all marvel in retrospect how she was able to do this given that the tumor must have been enormous in her head already at that point. This was another gift we were all given – that day, it was a perfect upstate NY summer day, she had a wonderful time and enjoyed herself very much. Her only comment to me afterwards was that she thought next year, that maybe it would be too much for her to drive all by herself and I assured her that one of us - me, John, or Dad, would make sure we got her there…not to worry about driving anymore. I’m so very thankful for this opportunity for her.
The other gift that I will treasure from this time was that John and I were able to give Mimi and Dad a lovely dinner to celebrate their 52nd wedding anniversary on August 20th. I took care of everything and went the extra mile to make it extra special for them– linens, candles, music and a great meal of pork roast which she loved. I made everything including a dessert – for once she didn’t have to bring anything as she always did. We had a lovely dinner and she seemed a little more energetic than she had been…though John still thought she was not as engaged in conversation, I agreed but she seemed better than I had seen her in prior weeks, so I was happy she had a good time. We gave them both gifts of t-shirts from Thomas Jefferson University, since this was Chellies’ new college and a tradition for them to have something from each of their grandkids schools. It was a really nice evening and she enjoyed herself. I am so thankful I made it special because, as it turned out, it was the last meal I prepared for her in my house.
She had other good times in August and September – going to Reva’s (her granddaughter) tennis matches; a day at the NYS Fair with Ed, Joan (brother and sister in law) and Dad; working on a fall sewing class for the Cooperative Extension; SECO’s (my brother and sister in law’s company) barbeque; and going to her friends, the Crandall’s, 50th wedding anniversary party; going to her Retired Teacher’s Association luncheon at the Silo Restaurant. Again, we marvel at how she was able to go to these events given how far her illness had progressed….though none of us knew about that bombshell yet.
In addition to the other symptoms I mentioned, she was acting more disoriented. Daily activities were taking her longer – she’d spend long periods in the bathroom getting ready; she spoke less and seemed more reserved, more of an observer, rather than participant, in the family discussions. We started to realize over these late summer weeks that she was getting progressively worse, and we were getting progressively more worried. In fact, by late August/early September, her symptoms had progressed to the point where she no longer seemed like she had much if any of her personality left…she was childlike and kind of a shell…confused and just observing the world around her. We weren’t sure how much was getting in and she relied heavily on just interjecting yes’s and no’s into conversations rather than holding a conversation of her own. Still, at this point, our thinking was that this was another recurrence of her MS, possibly Alzheimer’s. We had no idea what was still in store for all of us.
By early September, Dad and I agreed it was time to get her back to her neurologist and we made an appointment for September 18th in Cooperstown. I asked Dad whether he wanted me to go with him to see the neurologist and he enthusiastically asked me to go – he said he would really appreciate the help at this point. I also found out that she was having more trouble with incontinence – both urine and in some cases, bowel movements.
About a week before her appointment, September 8, she was helping my dad in the kitchen make some banana bread to give to Jesi (my other daughter), who was coming home for a quick visit after visiting her friends at Cornell. Mom could no longer cook for herself – so Dad was making the meals and now making the baked goods too. She would just sit at the table and talk him through it. This was another big change…but she just didn’t have the energy.
September 15 2007, Dad, Mom and I attended calling hours for the son of one of Mimi’s and my good friends, who had died. I had to help Mommy get ready, she seemed lost and required repeated direction to help her. When we were in the funeral home, Mom seemed to recognize Ippie and Dan as well as Louise, but others, she did not. She seemed lost, just listening mostly, spent an inordinate amount of time in the bathroom again (over an half hour) and when she finally emerged, wandered back into the funeral area after we had agreed we were leaving. What should have taken us 5 minutes to complete, took us about 45 minutes to finally get outside. Louise also noticed her one ankle was very swollen. When I asked Mommy about it later on, she said she had fallen a couple of times, once in the kitchen and again in her front room. However, her facts were mixed up – Dad explained she had not fallen in her front room but rather the bed had come apart while she was in it. She did not fall out; but she did bounce on the mattress when the bed frame fell apart in one spot. What had actually happened to her ankle was that she had fallen on the prior weekend when she was helping my dad in the kitchen making that banana bread for Jesi. Mimi was getting up from her chair and her leg gave out under her and she went down very hard. She had a bruise on her head and arm, and most apparently on her leg, a scrape that never healed all the way before she died. That’s what the swelling was due to and we were sure to mention this to her doctor when we saw him in a few days. By now I was really worried and knew something was seriously wrong but I had no idea what it would turn out to be. I was still thinking Alzheimers.
September 18, 2007, Dad and I took Mimi to her Neurologist. I arrived at their house well over an hour early to help get her around and ready. She was unable to focus, seemed lost and I had to keep guiding her on what to do to get ready – she was very agreeable. In fact, she would agree to anything suggested (this was something we noticed over the last several weeks as another symptom). My dad would get a little irritated because she would take so long and “yes” him on what she was doing and then still not do it. We got her into the car, she seemed pretty mobile, and somewhat “herself” but again, still reserved. What was interesting that day was that I was actually able to talk to her a little more, interactively, where she understood and responded to what we were discussing – small things, like what my kids were doing, or what was going on at 4H but still a better, more true conversation than I had been able to have over the prior couple of weeks.
Although my father and I BOTH accompanied my mom into the examination room (not done in years) and we both tried to explain the level of our alarm, Mom did very well at her routine exam questions and tests. The doctor even cracked a couple of jokes with her and she smirked in response– giving off a very deceptive appearance that she was “normal”. My mom was a very smart lady, she was a survivor and a fighter – she knew how to get along in situations and in hindsight we have figured out that she was very capable of compensating at times for her increased confusion, and difficulty she was having in expressing herself. Since we all are so close and communicate so frequently within our family, she was able to get by a long time with small comments since basically we all knew what she liked and didn’t like and I think in retrospect we actually enabled her by “filling in the blanks”. This is not a criticism of any of us, myself included, but rather an observation of how the events unfolded and continued. The doctor ended our relatively brief session with ordering tests with an ENT doctor and an MRI but that wasn’t going to occur until towards the end of the following week. I thought that was too long but didn’t know what else to do so I went along with it.
September 19th – Poppy took Mimi to her NYS Retired Teacher’s Association Luncheon at the Silo Restaurant. He said he explained to the ladies there that Mimi wasn’t feeling well and to keep an eye on her but she attended the luncheon and seemed to have a good time. He waited for her in the car until the event was over. We were all really glad that she had to chance to go. She seemed to have a good time.
September 20 - Thursday - I took the day off from work to go and pick up Chellie from college in Philadelphia while John (my husband) went shopping at Cabelas in Hamburg PA. While I was driving down to get her after I dropped John off, I called home to check on mom. I spoke to her a little bit but she was very confused again, she didn’t understand what we were talking about and I remember distinctly crying after I got off the phone with her, thinking to myself that “I’ve lost my mom”…I called Chellie and told her about the conversation and said that while Mimi is “there” she’s not really herself at all anymore…she’s like a shell of herself. We were both very sad and cried. I picked Chelle up in Philly, got John and we returned home.
Around 4 p.m. Chelle and I went up to Mimi’s house to check on and visit with her. It was very hot that day. I found her propped on her bed in the front room, in her street clothes, laying almost completely flat with a glass of water that had a straw in it. She looked like a rag doll and when she tried to sip her water, it caused her to choke and cough. Sarah (her granddaughter) was there with her, sitting on the couch. I was very upset to see my Mom like this – she was in pain from her bad headache and it was very hot in the room. I got her up and helped her over to her easy chair, put the fan on her which cooled her down and got her fresh water.
Poppy apparently needed more of his prescription medicine and had to go to Walmart – they were originally planning to go to Reva’s tennis match that afternoon but Mimi was so bad that they decided she should stay home. Poppy got his meds and then went over to the match and saw my brother Gerry and sister in law, Terri there; who learned from Dad that mom’s legs were not doing well, particularly her right leg. When Poppy described how badly she was doing that day, they immediately called their daughter, Sarah, to come over from their house down the road to stay with Mom so she wasn’t alone. Mimi’s right side was giving her real trouble, including her right leg which couldn’t even support her earlier that day. When I helped her move, it was weak but she was able to use it.
Poppy came home around 6 p.m., Sarah went home, and we talked about how poorly Mimi seemed to be doing. Chelle and I stayed with Mom until late into the night. Mom was unable to finish her sentences, she was unable to really hold a conversation (lost, dazed, confused). Dad fixed her some supper including mashed potatoes and corn and we got her to the table around 9 p.m. for her dinner. Mom struggled to eat, she kept putting her hands inadvertently into her food, she had trouble holding her fork, her hand shook terribly and she would just sit there for minutes, very still, like she was trying to figure out or remember what she was doing. I finally helped her finish some of her meal by feeding her myself …it took her an hour and a half to eat dinner that night.
Dad and I talked and I said we had to do something right away, we could not wait until next week’s scheduled MRI appointment. I wanted to do something the next day – get her right into the hospital. At that point, we were thinking Bassett in Cooperstown (where her Neurologist is) at first; but I said I would call Gerry in the morning to see what he thought, and then I would come back and we would take her to the ER the next morning. I went home that night very upset and very concerned - we were thinking Mom had suffered a stroke to explain the confusion and her loss of motor skills and right side weakness. I told John about everything and then started crying – “what was I thinking”, “why hadn’t we just taken her right then to the ER”…we knew how important it was to get immediate help if someone has had a stroke, “what the hell is wrong with me ….to delay getting Mommy into medical help.” I just thought that Mimi seemed so tired and I just wanted to give her a chance to rest before we took her into the hospital. I guess in all honesty, I was exhausted as well, still struggling with my own health issues that have been dogging me over the spring and summer.
September 21st Friday – Chelle and I went up early to Mimi’s and Poppy’s house – around 7:30 am. Before I left, I called Gerry from my house and said “we have a real problem with Mom.” He and I talked about the events of the day before and I said I was taking her to the ER that morning. He totally agreed; by the time I got up to Mimi’s house, he also came over and we changed our plans to go to the Stroke Center at University Hospital in Syracuse based on suggestion from Terri, who thought that would be the best place to take her first thing.
So we got Mimi dressed, which took a long time due to her slowness and needing help just moving around. We left the house around 10 a.m. finally, Dad, Mom, Chelle and me – arriving at Upstate Medical Emergency Room at 11:00 a.m. Friday morning. Dad went and got her a wheelchair and I wheeled her in while Dad parked their car. This ER had heavy security screening, metal detectors, multiple armed Security guards screening everyone coming into the ER – it was weird but I knew I was in downtown Syracuse. We got Mimi to the medical receptionist and I told her I thought Mom had had a stroke, she lost the use of her right leg and arm and had trouble speaking. They immediately called back for a bed and told us to take her back there right away, which we did, wheeling her into the back of an enormous square block of ER beds separated by curtains. They were getting a bed ready for her and Dad came in and was immediately met by the Admissions person who needed Mom’s insurance information. Mimi seemed in good spirits, just watching the buzz going on around her and eventually we were able to get her into a bed and the ER doctor did his initial review, ordered tests. Orderlies and nurses brought her in and out a couple of times, while Poppy, Chelle and I anxiously waited. I remember thinking to myself, “okay, we got her here, we’ll get some help now and it will all be okay”.
After a little while, the ER doctor came in, a good looking, dark haired young man in his mid 30’s – a good mixture of intelligence, strength, immediacy, with compassion, and a good ability to quickly judge his patients. I got the impression he’d pretty much “seen it all” at that point. He came in, with a serious but sensitive demeanor and told us that, yes, she has either had a stroke or "something", because she had a mass or shadow on her Xray and he was going to call in some other neurologists to take a look. I’m not overly alarmed at this point because this is exactly what I had expected to hear. “its okay, we’ve got her here now, they will give her some help and she’ll be okay”.
We then had a pair of doctors from Neurology – a middle aged oriental and a young Phillipino med student. They examined Mom and asked her a lot of questions. I knew my father was not thrilled cause of his feelings about foreign doctors; and this doctor did have a pretty heavy accent so I helped Mommy understand his questions so she could answer the best she could. Mimi handled them fairly well, had some trouble knowing current information (what President, what day, month it was) but could answer other questions like when she was born and the names of her children/husband. She continued to have trouble finishing her sentences – she would get to just about the last 2 words or so, so we could all figure it out pretty well and help her. Sometimes the doctor didn’t want us to finish the sentence for her. She struggled a lot of the time to finish her sentences now (the last few days) and she would look at me with an expression of “can you help me” so I would help her by guessing what she wanted to say until we finished her sentences.
Anyway, the Neurologist left and after a while, came back – he informed us again that Mom had a "mass" in her Xray which could be a stroke or a tumor and that he was going to turn her over to the Neuro-Surgery group this time and another doctor would be seeing us. Meanwhile the original ER doctor continued to come several times just to check on us, over which time, several hours had passed. I should have known by the ER doctors’ behavior and expression – you could tell he knew something was wrong.
Chelle, Poppy and I just stayed with Mimi and talked to her, tried to keep her comfortable, sometimes she would nod off cause she had been up for a long time and it had been a strenuous day already, but we still were in the ER. Eventually, a different doctor came, an East Indian doctor – who went through all the same exams again and the same kind of tests and questions. Same thing again, “hold out your arms, touch your nose, hold on to my hands and squeeze as hard as you can, no, squeeze as hard as you can, lift your leg while I push down on it, lift the other one, more of the same questions, do you know where you are, what the date is, who is the President, look at these pictures and tell me what the people are doing.” I helped Mimi understand his questioning through his accent and she did the same as before – answering some, not able to answer others. She didn’t really react to anything emotionally; but she did say her head did hurt at times.
This doctor was called away several times by his beeper and by now we had been there in the ER for 5 or 6 hours. We had been told that she will be admitted into the hospital and she will need more tests, MRI’s and CAT scans and then we’d know more….so I’m still saying, “okay, that’s what I expected and since she’s seeing a doctor from Neuro Surgery, she’s probably going to have to have surgery but that’s okay and they’ll fix whatever the problem is and she’ll have to recover but it will be okay, no problem…Mommy’s in good overall health otherwise”. Finally, the Neuro-surgery doctor returned and confirmed the same thing – your mom will be admitted, she has a mass in her brain as indicated in her Xray (he wasn’t using the word stroke anymore but it still didn’t really sink in - TUMOR) “she’ll need to have more tests done over the next day or so and then we’ll know more from that.”
So while we were waiting for a room, I decided to go outside to call my husband John and tell him what little we knew. Then, I went back inside and called my brother Jeff inside the waiting area of the ER. That was a little harder, I got hold of his wife, Jody. They were at a baseball game. I asked her to get him for me, and then started to tell him that Mommy was being admitted to the hospital; but couldn’t finish the conversation, emotion rising up and choking me - to the point I couldn’t talk, only high pitched cries came out and I handed the phone to Chellie to talk to her uncle. “We brought Mimi to the ER this morning and she is going to be admitted into the hospital, we don’t’ know anything yet, she’s doing okay”
I got my composure enough so I could feebly get my words out and finished the conversation with Dellie (my brother’s nickname). He said he was going to get his stuff organized and was going to try to leave to come up first thing the next morning, so he could be here by Saturday night. We agreed to talk again later. I was mad at myself, “why did I have do that and scare him that way, I didn’t want to alarm him” – “why can’t I ever seem to control my emotions, damn it.” Chelle handled it well, she is strong, she holds things in well. I recover my composure and we go back in to be with Mimi.
Finally, we get word that a room is ready for Mom and we move her up to the 7th Floor – Neuro Surgery unit, 7B exactly, which is the “ladies” side. She is in a room by a sink with 3 other women, right outside the main nurse’s station on the floor. This is a good location in my mind, she’ll be close to the nurses. I find out Mom is receiving some kind of new pain medicine, stronger than her Vicodin, plus she can have Morphine if her headaches are bad. She starts with the Vicodin, which seemed to work in the ER but sometimes not, and I’m grateful she gets the Morphine too and it helps her – no headache. This is something new, she hasn’t not had a headache for a very, very long time. This is a big relief. I’m so grateful. Mommy seems very content, but she’s hungry. She hasn’t been able to eat since breakfast, and the nursing staff still doesn’t want her to eat because she has to have more tests, and she can’t have food yet. We meet her nurse for the night shift, a very personable lady, she seems eastern European, but very nice, very compassionate. I’m comforted to know someone like her will be looking over my mom overnight.
We get Mommy settled. The hospital staff keep saying they’re going to do more tests tonight. We are all very tired, its been a very long day for her and for us. The strange thing is that we’re not overly worried, we’re still holding to our mantra that Mommy’s in the best place she needs to be and she will now get the help she needs. Dad is still thinking it’s something related to a stroke; but realizes too in a way that it’s a mass because of what the doctors have told us so far. None of us is using the word tumor yet – it doesn’t really occur to us. She’s where she needs to be to get the best help and we tuck her in, tell her we love her and we will see her tomorrow morning early. She seems okay and ready to rest. I don’t remember much of this night going home – only vaguely that we get Poppy’s car and head home. I drive because I’m worried Dad’s too tired. We agree to meet early in the morning and head up so we can be there by 8:00-8:30 a.m.
9/22/07 - The next morning when we arrive we find out Mommy still hasn’t been able to eat due to more testing – MRI’s or CAT Scans – she can’t have food in her stomach. She’s hungry; but as is so typical of Mimi, she’s in a good mood, always happy to see her family. Eventually she finishes that last round of tests, and she gets cleared to eat for lunch. By now she’s been on Decadron for about 12 -15 hours and she is starting to feel the effects of that and the fact that she hasn’t eaten for 24 hours. She is very hungry and eats ravenously. She is still having difficulty holding her utensils so I have to help her eat. I am cutting and feeding her lunch as fast as I can and, believe me, its not fast enough. Mom’s pointing to the next thing she wants and I move as fast as I can.
I feel glad that she’s so hungry. To me, it’s a good sign, she has an appetite and we’re conditioned to believe that appetites are a sign of good health. This is a good moment, we’re together and she’s eating and we’re all talking, Chelle, Poppy, Mimi and I. I phone and talk to Jeff, he’s on his way up and should be here by 8:00 pm. that night. I let Mimi know, her boy is on his way up to see her. She wants to know when is Jesi coming home. She doesn’t remember Jesi was at her house a weekend ago; I try to explain that Jesi has to work and couldn’t come up to see her this weekend but that she would be back up soon.
What is interesting is that Mimi can hear so exceptionally well. She can hear conversations going on the other side of the room, she knows what her roommates are in there for, and even what the nurses are saying in the hallway outside her room. It was amazing. We don’t’ know why this was; but Mom was remarkably alert to conversations and could hear exceptionally well. This continued throughout the remainder of her life.
Chelle has to go back to Philly today, so we spend time talking to Mimi and looking at her room setup. She has bumpers on both sides of her bed that I’ve never seen before. I learn that those are for in case she has a seizure. I’m still confused as to why she would have a seizure, not yet fully understanding this is strictly a tumor and what the implications of that are. Nor do I have any idea as to the size or location of her tumor, so I’m thinking this is precautionary. I understand Mom’s getting meds for her headaches and they seem to be working. At least that when she takes them, they actually work (Vicodin and if needed also Morphine – and at this point she seems to need both). When they wear off, she still has pain. So as soon as the meds start to wear off, I am right on top of the dosage timing and stay after the nurses, hounding them to make sure she gets her meds on time. I feel like Shirley MacLaine in “Terms of Endearment”, just without the hysterics. How prophetic, though…if I had only known how close to the truth that would actually turn out to be. I am still in my “La La Land” and just completely focused on the moment, on Mommy’s pain relief, which has bugged me for so long. I have never believed my Mom couldn’t get better pain relief and have always resented the fact that she didn’t get better help there. I really hold that against her doctors, even today.
Around noon, I take Chellie to the Syracuse bus station and while we wait, I realize I need to tell Jesi what’s going on. I haven’t done it yet; but I dread it. I know how sensitive Jesi is. I call Jesi and she answers. I start to try to tell her about her grandma; but break down again (the same as the day before with my brother) and once again, hand the phone to Chellie. “We took Mimi to the hospital yesterday and she was admitted. We’re still waiting more tests to be completed which are going to take a day or so more and then we’ll know better what exactly is going on with her.”
I guess the emotions of the last days and weeks have caught up to me and I know how sensitive my daughter Jesi is and I can’t seem to help myself. I feel like I’m having an out of body experience. I walk around the bus station and look at all the people going about their business and I’m crying, tears in my eyes and scared…how can it be like this, I am so upset about my mom, my mom is sick and everyone here are just doing their thing…its surreal. I feel like I’m in a Salvador Dali painting. Time is weird. After several minutes, I get back on the phone with Jesi and we talk a little more…she’s crying, we’re all scared, and eventually we say goodbye, with me assuring her I will let her know as soon as I know anything more.
Its time for Chelle to go. Chelle gets on the bus, it was a sad goodbye, I hate to see her leave, I don’t want her to go. She is such a comfort to me and her grandparents. Of all the grandchildren, my girls are the closest to their grandma. My mom was also their second mother, they lived with her over a year while I commuted all week long to CT for my job, and then, when I remarried, John and I built a house 1 mile down the road from her. My girls spent childhood from about 5 years old until they went to college, seeing Mimi nearly every day and doing things with her all the time. Every thing they were involved in, Mimi was also very involved. She loved them and they loved her – it was an exceptional relationship not many kids get the lucky chance to enjoy in their lifetimes.
The whole time we were in the hospital, Chellie was talking to Mimi about what this medical term or technique meant and what this or that was in the hospital, how to rub her legs properly for circulation, how to move her the best way in the bed. Her nursing training was already coming through and I think Mimi kind of enjoyed that and I know it was both helpful and comforting to me as well. I worry how will my girls be able to handle all this, focus on their work, they have struggles of their own. I don’t want Mimi’s illness to overwhelm them but there’s no way around it.
I went back to the hospital around 1p.m. and in a little while Dr. Carter, who heads up the Neuro-Surgery Unit at University Hospital, came by and met us outside Mimi’s room. It was a very short conversation, basically reiterating that they had performed one of the main tests but he still needed to get the other one done or he had to still review the test results. My dad and I are standing in a busy hospital hallway and lots people are talking and walking by and its hard to hear anything the Doctor is saying, never mind concentrate on what’s being said.
Dr. Carter says it’s a tumor, no evidence of stroke, probably cancerous, we need to finish the testing before he can give us more information. I remember repeating back to him what he said to me to make sure I had it…that it sunk in… "it’s a tumor and she’ll probably need surgery?" I know he acknowledged my question but I cant’ really remember much more of our conversation. I heard it; but it didn’t stick. Dr. Carter was tall, slender, appeared very intelligent and was kindly; but business like in his demeanor. At this point, he went in to see mom and said hello, looked her over I guess and then basically said, the same…she had a tumor, that was what was causing her problems and that he needed more tests to be done for more information and then we would all talk some more. Mom looked at him and agreed, seemingly concurring but not really reacting and no questions. This was consistent with how she had been for the last several weeks – just listened and seemed to generally agree, kind of like it wasn’t really registering or if it was, no reaction or only a subtle positive reaction. Dr. Carter said he would get back in touch with us shortly and left.
I remember Dad and I just kind of being stunned. A cold pit starting to grow in the bottom of my stomach; but I’m still more focused on the idea that there would be a “surgical solution”. I was worried about, for Mimi’s sake, what would surgery be like for my tiny little 73 year old mother, on the frail side, weakened by years of headaches and MS. I said to Dad that I had guessed I realized it was something like that (a tumor) and not just a stroke, when the ER people turned us over to a Neuro-Surgery physician, instead of just a neurologist.
At some point, he and I went back in to be with Mom and kept up our supportive demeanor, talking to her, talking to the other nice families in the room, some of whom were going home. The little old lady kitty corner from Mom, had had brain surgery and was ready to return home…she wore a baby pink Nike football knit cap to cover her head since her hair was very short from being shaved for the surgery. She was going home with her husband but she had been looking out for Mom and making suggestions from across the room – this kind of food was good, do that to make yourself more comfortable, etc etc….more vocal and outgoing, but in a protective “been there, done that” kind of way. Well meaning.
The other family across from us, their mom had already battled one brain tumor and now had another. That lady was getting radiation therapy and then would be going home. Her daughters were working on hospice arrangements – one trying to watch the elderly father and the other watching over the mother’s care in the hospital. Their mom understood her diagnosis and, as a result, she was also suffering from depression. She did not want to leave the hospital, fearing/knowing the outcome…this was her comfort zone. I could see the deep sadness in that lady’s eyes every time I looked at her. A good family, loving daughters, they all seemed to share that “knowing” look when they talked to me and my father.
For some reason I was not in Mom’s room when a call came in at the Nurses Station from Dr. Carter later that afternoon. I must have stepped out for coffee or to use the bathroom, but Dad was on the phone at the Nurse’s station when I walked up next to him. He was very serious but still talking to the Doctor and taking notes. I looked down at his notes on the paper – “large tumor, frontal lobe, 4-6 weeks, surgery: 8-10 months.” I stared at the notes. I stared at the words…
“What the hell? What…what do you mean 4-6 weeks, what do you mean 8-10 months…what the hell is that supposed to mean?” I knew what it meant the minute I read it; but that didn’t matter, it just wouldn't register…it was a complete disbelief, I wouldn’t allow it to register. Dad got off the phone and started crying and explaining it to me. I couldn’t’ believe it. I couldn’t tell you the specifics of what happened at this point - I only know that we were in the hallway and it was busy and the nurses were working all around us, busy going here and there, hospital staff, patients and family members going by and Dad and I standing there trying to take measure of the shock and my Mom just inside the door unaware of the crushing blow that she had just been dealt. Like in the movies when they fast motion everything around the main characters, and the main characters are in slow motion but everything is blurring and then just on the other side of the wall, a sweet little person, watching TV or listening to her roommates or just resting, innocently unaware or incapable of understanding, just living in the moment, one of the relatively few moments she will have left in her lifetime…apparently significantly shorter than any of us could ever have imagined, even just 15 minutes earlier. I do recall the feeling I had at that point…. I described later. I felt like a grown man had just taken a baseball bat, wound up all the way and hit me full force in the stomach.
Sometime shortly afterwards, my Dad still by the nurses desk I think, I was walking down the hallway and Gerry, Terri, Reva, Sarah and her fiancé Andy were walking towards me. Gerry was in front and he seemed glad to see me, “Hi, Weanie…” (my childhood nickname). I just remember that I couldn’t’ even speak, I just started crying, I walked up to him, put my head down on his chest and he put his arms around me and I just broke down and cried. He became alarmed and started asking, “What, what is it? What’s wrong? What is it…?”
All I can think is “what the hell is wrong with me, that its just cruel to scare people this way, get yourself under control, stop crying”…but I could only sob out, “she has a tumor……...its cancerous…..….she only has about a month…” Gerry was completely shocked, “What? What? Is that what the doctor said?”
We were all stunned, everyone was in shock and we’re all standing in the middle of the hallway, other lives buzzing around us until it occurs to us to move out of the way and the only place we can find is in by the elevators…there’s a small waiting area by the elevator bank with about 3 chairs on either side of the area. We all go into this area, disbelief, fear, shock, questions, what the hell?.....this isn’t what anyone expected. I can’t recall much of the specifics of this conversation..…just everyone’s shock, the disbelief, my nieces crying, my father crying, my brother and his wife are crying and I’m crying. We go through everything the doctor said with Gerry and Terri and, eventually, we get ourselves together, try to recompose ourselves so we can go in and be with Mommy, which we do.
At some point in here I call John; but I drove today so I’ve got the car. He says he will get Radley or Dave to bring him up, he calls me back, Dave and Sharon are going to drive him to the hospital for me…he should be there in about an hour. Meanwhile, Jeff is on his way up from North Carolina, having left that morning, he keeps calling to check in. Jeff calls again now that we’ve heard this news but I don’t want to tell him anything. I can’t tell him this news while he’s driving, I’m afraid he would be too upset and have an accident himself. So, I tell him no word yet, we’re still just waiting to hear, keep coming, Mimi is looking forward to seeing you…he says he’ll check in again when he gets close.
John arrives, which is good. I’m so lucky to have him, he is a rock for me, always strong and level when we’re in crisis mode. Mimi is resting, taking a nap, so we all go down to the cafeteria as a group. We have to tell Jeff when he gets there; but we don’t want to spring it on him (the way I did a little while earlier to Gerry). We talk about finding a place where we can pull him aside and talk privately together as a family. We’re still in disbelief this is happening. Gerry talks about how he felt sure it was a stroke and that she would have to maybe have some stuff done but it was all manageable, like what our Grandpa Reit (Mom’s father) had (he had some mini strokes) – Gerry said he had no anticipation of this and was totally unprepared. I think we all felt the same way. We’re worried about how to tell Jeff. We want to talk more to the doctor, find out what the options are, more about treatments, probabilities, percentages, experimental treatments. We sit as a small little huddled group in the hospital cafeteria, intermittently breaking down between periods of disbelief and shock.
Jeff arrives, still not knowing, and I go to meet him outside the hospital lobby with Dad and John. It’s a warm night, actually it was a beautiful, warm late summer day that has turned into a nice evening. Jeff is tired but happy to be there. We hug and bring him inside. The rest of the family all hug and kiss hello and then we tell him that we’re going to meet first before we go up to see Mimi. We take him into the chapel room on the first floor just off the lobby.
He is concerned, probably sensing bad news. Dad tells him the news, what we know at that point, and he chokes up and cries. We all talk through his questions and what we know. We agree that for now, we’re not going to say anything more to Mom until we have talked to the doctor again and better understand her options. It takes us an hour to get ourselves back together, so we can go spend some time with Mom. She’s happy to see Jeff, but is still a little out of it – like she’s not really in touch with reality. Its strange - her beloved Jeff is finally there; but Mom still gets easily distracted by the TV and by others conversations in the room. After an hour or so, we get her settled in for the night. Mommy’s tired and we’re all exhausted. Its been a long terrible day. Jeff takes Dad home, Gerry and his family leave, and John takes me home. It’s a sad drive – I cry on the way home. We go the short cut through DeRuyter, everything looks sad to me …we talk and neither of us can believe this is happening and go over the facts again.
Sunday, September 23, 2007- I ride up with Jeff and Dad in the morning, Mom is hungry and I help her eat. Sometimes her food is still there when I arrive and I think she still has too much trouble feeding herself so she doesn’t eat while its warm. We find out where the kitchen is on this floor and Jeff warms her food, gets her some nice coffee which she likes – warm, but not too hot. Jeff learns how to make it just right…her sense of taste and feeling is very, very sensitive…it can’t be anything more than lukewarm or its too hot and hurts her.
During this time, Mimi is very sensitive to touch, everything bothers her, especially the IV’s, she constantly itches them and pulls at the tape, she wants them out and asks one hundred times during this week to have them taken out ,even though we tell her over and over again she needs them for her medicines. It doesn’t matter, she is fixated on them, they irritate her and she is constantly after them. I help her eat because she can’t handle her utensils on her own. We learn that she is taking Decadron (steroids) the max dosage and anti-seizure medications; but, it’s the steroids that make her hungry and she wants to eat everything they give her. Over this week, I urge my brother and father to get up here as early as possible, so I can make sure she gets her breakfast. I also talk to the nurses to make sure someone is there in the morning to help Mom eat.
The nurses in this Neuro Unit are truly wonderful – very professional but also sincerely caring and compassionate. I’ve never come across a group of people who are so consistently excellent across the board – in fact, everyone here is excellent….from the cleaning lady, to food service staff, to the transport staff and the nurses, all of them are great. This is totally not what I have experienced in the past, there’s always “someone” who’s just doing their job…but these people are great and I thank God for this. I need to know truly good people are taking care of my mother. My mom is such a nice little person, who never complains (especially now, she never says anything negative, never complains… except for those darn IV’s that bother her and she wants them out J). Mom has always been such a good person her entire life; but she could also easily be bowled over by some obnoxious person…Especially now, Mimi deserves respectful and compassionate care and she is receiving it…I’m so thankful.
We know that Gerry is going to meet us later in the afternoon and we arrange to meet with Dr. Carter so we’re all together and he can explain everything to us. The next day or so are perhaps the worst days I’ve ever experienced, even worse than finding out about her tumor and prognosis and perhaps on par with actually losing Mimi later on.
Dr. Carter meets with me, Dad, Gerry and Jeff in a conference room at the end of the hall where mom’s room is. He explains her clinical diagnosis as far as he can tell from the non-invasive testing that they have conducted so far which has included X-rays, MRI’s and CAT Scans. She has a tumor the size of a fist, located in her left frontal lobe, with tentacle like growths stretching into 2/3 of her brain. The location and pressure of the growing tumor are what’s causing her symptoms: weakness or loss of use of right side leg and arm, confusion/disorientation, memory loss, her weakness and laryngitis of her voice. The tumor is impacting her normal brain cells and killing them through pressure and invasion of their space. Relieving the pressure will relieve some of her symptoms; but this is temporary. The effects of the steroids will eventually wear off and the symptoms will return. The kind of tumor is a very aggressive cancer. He can surgically remove the main tumor; but there is no way to get the rest of the growth out and therefore, no way to remove all of the cancer cells. Surgery will only give her a little more time, approximately 8-10 months. He cannot give us a 100% positive diagnosis that this is glioblastoma multiforme without doing a biopsy.
Gerry asks him to give us his professional opinion on the “odds” of what this is. Dr. Carter says he’s 99% sure its this kind of cancer. My brother asks, “What is the other 1%?” and Doctor Carter responds, “An infection, or something that we’ve never heard of or yet discovered, which means that we’d be guessing as how to treat it”. We ask him to tell us again what the prognosis is given the alternatives. Dr. Carter says, “as she is now, about 4 -6 weeks….chemo or radiation only would make little to no difference….with radiation and chemo, it may add a week or two to her life….removal of the main tumor, with follow on radiation and chemotherapy, she’d have 8-10 months…give or take.” “What is the chemo like, would it make her sick?” “The chemo used today is a lot less toxic than what’s been used in the past, but every person is different as to how they react.” “How does radiation and chemo work?” “Chemo is in pill form today and radiation would have to be done over a series of weeks here at the Neurology/Oncology center through the hospital.” “So that would mean making Mom travel an hour each way every day for a period of weeks, and radiation makes you tired, as a side effect.”
We ask about how the surgery would go. Dr. Carter says, “we’d have to do a biopsy, which removes a piece of her skull bone and extract some of the cells of the tumor with a a long needle….we can remove the main tumor or as much as we can of it at the same time or we can go back in later and do that surgery separately”…our choice….”the surgery is not very painful, because there aren’t a lot of nerve endings in the brain area so its described as not that painful of a surgery, and recovery time, depending on outcome is generally about 3 weeks.; however, in your mother’s case, her tumor is so large that this is a highly risky surgery, due to its size and location, there is a very good chance she might not survive the surgery, or she might survive but be much worse than she is now, not regain consciousness, or be paralyzed, incapable of speech, severely impacted by the surgery…only a small percentage chance, about 30%, that she would come through the surgery no worse than she is now; however, no matter what she won’t be the person she was before….what damage that’s been done is irreversible. The medications will relieve some of her symptoms but we won’t be able to get her back again as the person she was.”
“What does she understand at this point, what is she capable of understanding?” Dr. Carter responds, “Because of the location of the tumor, your mother is no longer able to make complex decisions or have complex thought. She is obviously a very bright lady and she has been able to compensate for some time giving the appearance of being a part of conversations but she doesn’t understand things the way we do now or the way she used to.” We tell him, “We don’t want her to be depressed from this information and we have a health care proxy with her husband and daughter, how do we communicate this with her?” Dr. Carter, “I will let her know her situation and evaluate whether she show any signs that she is able to process this information in a complex way, if it appears she is able to, then we can reconvene and discuss her treatment plan again.”
We’re all crying at different points but the doctor is patient, though business-like, in his demeanor. I don’t feel rushed, nor that he’s trying to avoid this difficult and emotional conversation. I think he empathizes from a distance…..I imagine it would be too draining for him to get too close to people in this situation. I ask him, “Can we control her pain? I just don’t want her to be in pain anymore.” Dr. Carter assures us that we can manage her pain very effectively, she shouldn’t have any more pain. The realization of this irony, something that has been so terrible for her for so many years will now, finally, be managed at the worst possible time for her medically, causes me to break down and I put my head on the table and start sobbing, thanking God that at least she won’t have to suffer her terrible headaches finally any longer.
My brother Jeff is crying and saying, “I don’t’ want anyone cutting into her head. I think we should just bring her home and make her comfortable”.…he just can’t take the idea of any one cutting into her head. My brother Gerry keeps questioning the doctor on the percentages and that 1% - what could that be? Is there a chance still for that? Gerry’s holding on very hard to that 1%, he is crying and he insists its important for him to hold out for that miracle. I understand and respect him for his hope…I wish I could hope for a miracle; but I don’t believe in miracles, so I can’t.
Gerry asks about this kind of tumor, if we had brought her in earlier, 6 months earlier for example, would it have made a difference in saving or prolonging her life. Dr. Carter tells us that it would have not made any difference, the ultimate outcome and overall timing would be the same. This kind of tumor and cancer grows very rapidly. Once even one of these kinds of cancer cells gets into your brain, there is really nothing that can be done other than what we discussed. He indicated (with some of his own apparent frustration) to us that there have not been any real advances or improvements in the treatment of this cancer in the last 50 years. Gerry feels somewhat “better” to know that we didn’t miss something that could have actually made a difference; but he’s also a little skeptical that the doctor is just “saying that to help us as her family through this at this difficult point”, “What good would it do to say anything different, it wouldn’t change matters and it would only tear us up.”
Poppy asks the doctor what we can expect as this progresses, what kind of death can we expect. The doctor explains that the steroids will help her for a while but eventually the effects will begin to fade, that she will start to lose the use of her right side again, she will have increasing trouble speaking, and eventually she will start sleeping a lot more, until she will just sleep until she passes. We all start crying again; but we are grateful at least to hear this will be a relatively peaceful death. Is that some kind of consolation? I guess so. At this point, none of us wants to tempt fate with questions of what kind of bullshit this whole situation is, because we realize that we just want her to be peaceful and any rage or anger we might be feeling isn’t the important thing right now. We finish our questions with the doctor and ask him for time to think about everything. He reassured us to take whatever time we need, there is no hurry and he would be available whenever we needed him to answer our questions. We thanked him again for everything he was doing and he left us alone in the conference room.
I found myself mentally skipping through the scenarios. Considering the biopsy surgery, I don’t want to do the biopsy because there is a risk associated with it and there’s really no point to it in my opinion. The doctors’ know exactly what this is…they’re not unsure at all, they just have to say a 1% chance because they don’t have the physical evidence of the tumor but they know, they know exactly.
So to me, there is no point to the biopsy. I’m thinking about the general main tumor removal surgery, taking the chance so that maybe we can have her for almost another year…that sounds like a good idea. But then I’m not really thinking about all the awful possibilities, like that she could die on the operating table that day and we’d have no more time with her at all, or she could come out paralyzed or on a breathing machine like a vegetable for another 8-10 months, just to have that horrible thing grow back and kill her anyhow. I’m flopping all over the place. I keep thinking radiation won’t work, it would be too much for her physically to come up here everyday, she doesn’t have the strength for this. Chemo only maybe? No that isn’t going to buy her any time at all (1-2 weeks is all the doctor said)….but am I cutting her life short by not even trying? I am racked with doubts.
We all discussed the statistics and prognoses over and over, again and again, and finally, it occurs to me and I say to the rest of them, I’m not sure this is fair to Mimi…its not fair that we’re making this decision that’s going to affect her life in the most final way possible. She’s not on life support, she’s not unconscious, we can go down the hall and hold a conversation with her right now if we wanted. My brother and father can’t stand the idea of her being depressed and sad if she were to hear her prognosis, that is very upsetting to everyone; but I keep thinking, its not about us and what we want. I didn’t feel right that we were making that call. If it were me, I’d want to know exactly what was going on and make my own decision. I felt we were being unfair to her, as painful as that might be to all of us. We discussed the fact that the doctor doesn’t think she can make those kind of complex decisions, or even process the information; but how do we know for sure…she has surprised us with little things, little hints of recognition and thought process over the last day and its gratifying but alarming…is the Doctor sure? We are so unsure ourselves.
We’re exhausted, we’re numb, we’re in despair, nothing is a good choice, every option is horrible. This is a nightmare. This is the worst kind of nightmare, because we have to make a decision for another human being, a decision that is going to end her life one way or another, a human being we have loved and cherished our entire lives and we can’t even talk to her about it, and she’s awake and able to be talked with.
Its like a giant mind game, someone is really screwing with our reality. Its not like she’s a person on life support, who’s unconscious and she’ll never going to wake up again, and there’s no way they will live any longer once the machines are turned off. This goes way, way, way beyond that. We all agree, right now we just need to think it through some more, we have to weigh it all individually and then get together again as a family. We all agree, from this point on, total honesty with each other, total openness on what we’re thinking, no penalties (this is Gerry making this proposal), we are all in this together as a family. We brush off our tears, take a collective deep breath, put on our smiles, and go back to stay with her some more. She’s so happy to see us all and gives us her little smile.
I can’t imagine this giant evil thing growing in my sweet mother’s little head; how can that be possible, how can there be that much room, I’m so sorry Mommy, this is so unfair. These are the thoughts racing through my head; but, I refuse to show any signs in front of her. I want her to feel nothing but comfort and security and love from me and her family members.
We all agree, no breakdowns in front of her, step outside, don’t talk about anything bad in front of her, step outside, keep it positive, let’s do everything we can to make her happy. So I rub her legs and hold her hand and we watch TV together, and Jeff fixes her coffee every time she wants it and Dad gets her extra rolls and butter with her meals and I am on top of those nurses to make sure she gets her pain killer every time she even thinks her head might start to hurt before her next regularly scheduled medication. I bring her sweets, ice cream, candy and cakes, and flowers and many of her favorite pictures from off her refrigerator at home, pictures of all her grandkids, of all the things she’s made and her dogs and horses and I post them all around her room so she can see them anytime.
Her various family members come to visit her several times and she receives all kinds of cards and flowers from her friends. Her Reverend comes to visit her and the visitors make her happy. Overall, she seems to be quietly happy (so typical for my Mom), though she’d still like to get rid of the catheter and of course that darn IV which itches and aches and hurts her arm, she explains to me again and again. I reassure her that I wish I could do something about the IV; but I can’t - she needs to have that for her medicine and, once again, Mimi agrees, at least for now, until the next time she thinks about it.
Mimi likes the leg wraps that fill with hot air and massage her legs…she keeps asking about them and likes having them on….they feel good. She eats like a Longshoreman and eventually, later in the week, she regains enough strength that she is able to now feed herself and meals are looked forward to…the hospital food is actually very good and she really enjoys herself. One especially thoughtful nurse, Laurie Sargent, initiates a bed location change for Mom after one of her roommates leaves, and Mimi moves over to the window side of the room, so she can look outdoors and its beautiful outside, beautiful fall days filled with sunshine…its been an especially warm and lovely September.
Mimi has two very nice young people assigned to help her with physical therapy, to get her out of bed and help her walk around…she does excellent, every day a little longer, a little further, a little more independent, a little stronger. She likes this attention, everyone is very kindly and respectful to her. There is no way that I can possibly express how much I appreciate that. Do they know what a wonderful person this lady is, how kind and giving she has been to so many others throughout her whole life? It is only fair that she should receive the same care and consideration at this time. I am so very thankful for this.
About a day or so after my brothers, sister in law, father and I all met with Dr. Carter in the conference room, after a lot of soul searching and tearful discussion, we reached the conclusion as a family that the most humane and best thing we could do for Mommy was to bring her back to her home and make her as comfortable as possible, help her to enjoy as many of the things she loves as she could, and let her live out her remaining days surrounded by the people and things she loved with the best physical condition as she could muster given her medications for as long as possible. The other options would only negatively impact or reduce her remaining quality of life and we thought the best we could do for Mimi is give her the most of quality for the time she had remaining. Prolong her life instead of prolong her death.
One evening during that week after we had made that decision, Dad, Jeff and I had spent the day with Mom at the hospital and we expected Gerry to arrive sometime after his work during the evening. We were all sitting around her bed and each of us was reading a different section of the newspaper when Gerry walked in. It was one of those pleasant memories, together as a family, doing a family activity like we always did. Gerry was particularly pleased and humored by it, gently laughing at the sight of us, especially after he checked what section Mommy was reading and it was the Financial section, and he kidded her about whether she was checking on her “investments.” My mom was not known for being a financial wizard.
Afterwards, he commented to me how nice that scene was and how it made him think that he didn’t want this time in the hospital to end because, at least while she was still there, it was kind of like a bubble in time. If we could just hold on to this time, we wouldn’t have to take the next step. To take the next step was to mark the beginning of the end and that was going to be very hard for him. If we could just stop time, hold on to what we had now, we could enjoy this, this would be enough for each of us for a long time. I knew exactly what he meant. Kind of like that old Jim Croce song, “if I could save time in a bottle, the first thing that I’d like to do, is to save every day till eternity passes away, just to spend them with you.” I’ve always loved that song…sure has a lot more meaning for me now.
If I could make days last forever
If words could make wishes come true
I'd save every day like a treasure and then,
Again, I would spend them with you.
Jim Croce, you were a genius.
So we met again as a family with Dr. Carter and told him our collective decision. We wanted to bring Mom home; how do we go about making that happen. He said that he would initiate the discharge orders through his department and we would coordinate that with our local Hospice program. We asked him whether he would be our hospice doctor but he was a little evasive about that…I understood him to say no, but others in the room, including Dad thought that he agreed to do it. Anyhow, it turned out, he did not act as her hospice doctor.
We talked with the doctor again about my concern regarding not reviewing directly with Mimi in detail her situation and her options. We asked Dr. Carter, if it were his wife or mother, how would he handle it as far as going into a deep level of detail and he said no, he would not. He reiterated he did not believe, due to the large size and damage caused by the tumor, that she was capable of understanding her situation nor was no longer able to process the complexity of her medical options. But, he said, he would go in with her after we had finished and talk with her again. He would couch his words appropriately and if he found in any way that she demonstrated any higher level of understanding or she questioned him in a manner that indicated such, we would reconvene as a family again and revisit our decision and treatment plan.
We agreed to this and we all go in with him down the hall to meet with Mimi. We gather around her bed - Poppi, then Dr. Carter, then Gerry, then Jeff, and then me beside her on her left side. Its nighttime now and her room is darkened. Dr. Carter explains, “Charlotte, as I told you before, you have a brain tumor and its not something we can successfully operate on. We can treat your symptoms and help make you comfortable. You can go home soon and I will see you in a few weeks in clinic. Do you have any questions?” Gerry and Jeff in particular are leaning in so far over and so closely to hear and see her response, that they almost look like they will topple over onto her.
Mom nodded her head in seeming understanding and she turned and asked Poppy, “what do you think?” and Poppy said, “We all have confidence in Dr. Carter and his assessment and think this is the right thing to do”. She turns and asks again, “Do you agree with this?” and Dad starts to answer again but Mimi cuts him off, “I’ve heard from you, now I want to hear from the rest of them.” and she turns to me to see what I will say. I am caught a little off guard, not having expected her to ask me but I answer her, “I think Dr. Carter is an excellent doctor and trust his opinion and I agree” Mommy then follows with Gerry and then Jeff…everyone answers her affirmatively. She asks another generic question but I can’t remember what it was. My head is spinning at this point, I think it has something to do with Dr. Derringer and his being aware of her being there and would he get her records, which she was assured he was aware and would get her records as well. Okay then, she agreed. That seemed to be that. I felt like I’d been holding my breath; and what felt so monumental a moment in time was now over and I was reluctant to start breathing again. Surreal.
Nothing in her responses prompt Dr. Carter to change his mind about her ability to handle complex information, particularly because she didn’t raise any other questions so he indicates we’ll be in touch over the next day and he says his goodbyes to everyone. No questions from Mimi about is this cancer? Nothing from her like, “How will this affect me, what is my prognosis, will this get worse, how long will this go on?” None of the questions that we all agreed we would have asked in our present state of mental ability. But also, to me, nothing to indicate that she didn’t understand, maybe she just chose not to deal with it, maybe she just decided to turn her trust over to us. I’m not sure and this uncertainty continues to haunt me afterwards. I had to keep going back to the thought that if she were capable of understanding or if she had wanted to know more, she would have asked….if she wanted to actively participate in this decision, she wouldn’t have turned it over to us so completely and finally. She never asked us any questions again in any way related to this topic. So I figured, if she were capable and she had wanted to, she would have. This is how I have reconciled myself to the idea of our making this life ending decision for her.
I had to work with the Social Worker and then the hospital Case Worker. Perhaps the Case Worker is the one person that I didn’t really like and didn’t relate to well throughout this whole journey…she was abrupt and cold. I don’t give a damn why or what caused this woman to act that way….why should I? …this is MY mother and SHE’s going to die in a month. I’m not going to have her at holidays anymore or to watch my girls with me do something special or go on trips with anymore, or do our little sewing projects together… anyone who’s not nice to me right now can go pound salt. I'm thinking to myself, "Don’t give me any attitude, believe me, I could rip you apart with one verbal tirade. I'm not the nice "little lady", like my mother , especially when it impacts people I care about. "
But I have to work with this person, so I am polite and businesslike. I end up having to follow up with her as to the steps to get mom home. I make the point that I don’t want anyone to use the word “hospice” around my mother, which gets a raised eyebrow from the Case Worker. The next thing I know, I’m in a conference room with the Social Worker. I get it now, something must be “off” with me and my family if we are avoiding the word hospice…so I’m careful to explain what we are doing and why, I know I’m being “evaluated”…that kind of pisses me off, I don’t care what they think; but I’m smart and know I need to get around these judgemental people, so I’m careful what I say and we get through this interview. All I want from them is their information and to get my mom home. I make arrangements for the Social Worker to meet again with me, Dad and Jeff the next afternoon.
Thursday, 9/27/07 – we meet and go through the same process of information, some progress is made on arrangements but in reality, we just need to get our doctor to release mom and our Hospice to be ready to take her on. Here is an area where the families often have to take matters into their own hands….releasing patients and setting up home care is not something a lot of hospitals are good at (something I find out first hand and from talking to other people who know about healthcare).
My advice, talk to your Hospice or Home health care providers about everything they provide, make a list of what you need to get ready, make a step by step list to get all the logistics in order and provide yourself a reasonable timeframe. The last thing you need to do is bring your sick, loved one home and you don’t have everything you need, right down to clothes, bedding, food, supplies. That just means frenzied running around, more stress on you and you’re already stressed and most importantly, not the best, smoothest care for your loved one. One person be in charge of making the list; but take advantage of friends and other family members getting everything ready – having them help with cleaning, shopping, room set up. You will have your hands full just getting your loved one out of the hospital – its very draining on them physically and possibly emotionally (not in our case since Mimi didn’t understand) so save as much energy as you can for all involved.
After that interview with the Social Worker , the pressure was starting to build. Jeff was pushing to get Mommy home on Saturday so she would be home before he had to leave to go back to his home in NC on Sunday. I understand his well-meaning thoughts; but he was emotional and I didn't think he was being realistic about what it took to get everything ready, the coordination of care, make sure we had everything we needed to care for Mommy – it took me two good days of phone calls and coordination just to get everyone to do their part so Mimi could come home. And this was on top of the worst last couple of days of my life. I was physically and emotionally exhausted in dealing with Mommy’s diagnosis, and in dealing with everyone’s individual emotions and issues, and my brother and father were pushing to get Mimi home – typical of them with the attitude that “everything will come together”.
But the bottom line question is who was going to make all the details happen…this was more serious than a simple homecoming. We couldn’t just let things fall where they may, I needed to know that everything we needed or at least anticipated with some forethought was prepared for her ahead of time, as I knew I would be the main person taking care of her. She was very sick and everything had to be ready to take good care of her. My advice for other people, don’t rush this part – its too hard on everyone. Take your time, get things in order, try to get some rest, cause once you bring your loved one home, you are 100% involved after that.
I was scared, not that I wouldn’t be mentally be able to take care of her, but I was worried about my heart condition and physical readiness…I was tired already and I know how my body and heart reacts to that. In the conference room, after the Social Worker left, many details were not yet worked out and I knew that local Hospice would not be available until Monday, Jeff and Dad continued in a frenzy of planning details of the cart before the horse. I became overwhelmed and felt myself getting upset. I suggested that we just stop discussing this right now because we were getting tired and Dad argued back to me. This just set me off, I said I needed a break and got up and walked directly out of the room, and slammed the door in frustration.
That was stupid. Once again, what the hell is wrong with me!?! I’m furious at them for pushing; but I should have handled that better. I didn’t need to lose my temper; but, damn it, I’m the one who’s going to be the main caregiver for her. Jeff is leaving in a day and Dad isn’t capable of handling this kind of responsibility on his own. I go out to another section of the same floor, around a corner from the big elevator bank and find a place to “hide” and sit down. I call John and am crying, explain the whole thing, I’m pissed and exhausted, and he offers to come up – “yes, please”…. I need him, I need my rock, the one person besides my mom who understands me, I’m falling apart and I’m afraid of how long I can last. John’s on his way up and I calm down. I go back and I see both my father and brother sitting there but there’s a wedge, the proverbial 800 lb. gorrilla in the room. I’m still pissed…I can’t look at them very well, but I go in to be with Mommy and her presence cheers me up….funny how she can always do that.
All week long, I haven’t told my girls. I’ve dreaded it ….I don’t know what to do, I promised them I would keep them informed. Every day I talk to them, all week long I kept saying, “we’re waiting for more tests to come in, we don’t’ know anything yet.”
Earlier in the week, on that first Monday, Jesi called me at the hospital. I’m still shattered from just learning about my mom’s situation the day before, and Jesi calls me about 10 in the morning. She’s supposed to be at work, but she’s crying, she’s gone home, she had a bad panic attack and couldn’t get into work, she’s very upset with herself, “what the hell is wrong with me” she asks, I reassure her, “there’s nothing “wrong” with you, don’t beat yourself up for having panic attacks, you are who you are, you’re not doing it on purpose, if you could control it you would, no one wants to suffer through those, don’t be so hard on yourself, just try to relax, its okay honey, its going to be okay…just rest and sleep, you’ll feel better….call in sick and try again tomorrow….just try to relax. Call me later honey.”
Sitting alone on a guerney, in the Neuro Unit hallway, I’m trying to figure out my mom’s death and my daughter’s life…I feel stretched; but I need to be there for my family…they need me and, more so, its important to me - I need to be there for them. But now the whole week has gone by and the time has come – I can put it off no longer.
I need to tell both my daughters…so I’ve decided I will tell them on Friday. Chellie doesn’t have any classes and I will talk to Jesi after work, so they both have some time before classes or work starts again. I go outside, it’s a beautiful sunny day, gorgeous September. I love September, the warm air but not humid, trees tinging with colors, Upstate NY, there’s no place prettier in this country at this time of year. It strikes me as odd that some things can be so beautiful at the same time things are so terrible.
Anyhow, I dial Michelle but don’t get her. So I go inside the lobby, find a comfortable chair in the lobby waiting area just inside the door, and try her again. I get her, I have lunch napkins in hand already for this, and I tell her I need to talk to her about her Mimi. She knows by my tone and the lead in, its not good news. I explain the tumor and prognosis as the tears rush down my face. I turn my back so the visitors and staff walking by so they can’t see me. Chelle is crying and asking a few questions… I apologize but say I couldn’t tell her before Thursday, she had a test and I knew she needed to do well on it. She understood, but asked if she could get off the phone now, she needed to go outside for a walk. I tell her I haven’t told her sister yet but I would as soon as Jesi got out from work. We agree to talk again later. I wipe my face and blow my nose, go back upstairs to be with Mimi and resume my happy face.
About 5:30, I go back downstairs to the lobby and call Jesi. Once again, I feel like I have a lead brick in my stomach. She’s home and answers her phone. I ask her who is there in the apartment with her…Vinnie is there and I think her friend Joe and Pablo too. Good, she’s not alone…my guts hurt. I begin my explanation and we both cry through the questions and answers. We talk for a while and then we agree to talk again later. Her friends are there to comfort her and I know she has all weekend to try to get herself together before having to go back to work. I’m just praying she doesn’t have more panic attacks with this kind of stress. Nothing I can do…so I go back upstairs to be with Mimi and resume my happy face.
It may be hard for others to understand how close me, my girls and their grandmother are. We have been through a lot together, good and bad, following a rough divorce, we lived together for years, we did almost ever activity together as a group. Mimi is not only my best friend, she is each of my girls confident and surrogate mother. I am 45 years old and think I am a little better prepared to deal with this than they are – I worry about my sensitive girls. They haven’t had any real exposure to death, nevermind one of the most important people in their lives.
My sister in law, Jody, and my three nephews arrive. I notice they have grown a lot….they are very serious when they come in. They visit their grandmother, but I don’t go in with them…too many people I feel overpower Mommy and they need time to be with her…so I wait in the conference room. When I do decide to go in, I see the boys have been crying – I hope she hasn’t noticed. Mom never asks why did the boys come all the way up from NC when they should be in school…perhaps she thinks its simply because she’s in the hospital, perhaps she doesn’t think it through at all.
If there was a bright side to this sad story, its how my brothers and I, our whole family pulled together so sincerely and so wholely. I am so grateful and so happy about that. Mommy would have been very happy too if she knew and realized how much. I talked to my brother Gerry and felt closer to him more in these 7 weeks than I had in over a decade. I witnessed true love and compassion from my sister in law Terri that I never knew existed for my mother…how deeply that moved me. My mom’s illness brought my family close together like we have never been before – all the children at an equal level of respect. Truly a blessing.
Friday is a busy day, because the Hospice equipment company deliver the hospital bed, air mattress, commode chair, wheelchair, bed tray table and walker. Dad stays home to wait for the delivery and make sure everything gets set up right. He sets up the bed in the front room in front of the picture window facing the TV, close to the bathroom, easy chair, with windows to look outside. I ask Terri and Jody to help me by getting some things we’re going to need: twin sheet sets, large wipes, depends underwear and some groceries for everyone too. These are essentials and it’s a big help.
Mommy gets her catheter and IV’s out and that makes her really happy; but I need the nurses to show me, how to bathe a bed ridden person, to change her bedding with her in the bed, and to change her underwear. I call them underwear to help her preserve a little of her dignity and not call them diapers. Dignity is important for people at this time – privacy becomes very limited, they can become very dependent for the most mundane and basic bodily needs, so I feel its important to make sure your loved one knows of your love, support and respect – dignity being one way to demonstrate that.
September 29 – Dad, Jeff and I ride up together in Jeff’s car to get Mimi. Jeff is anxious to get there early and get Mom out as soon as possible. Eventually, we finalize all her discharge paperwork, still waiting clarification on the prescription from the attending physician, and Jeff is hoping to have her out and home in the morning. I’m not confident of that…I know logistics take a long time, to get everything processed and it turns out I am right. It would be nice if people listened to me a little more. I get Mommy breakfast and bathed, dressed in street clothes. Still waiting to get her medications filled, lunchtime comes, but no discharge yet. I follow up and am told its coming. Mom eats lunch and is getting a little tired I think. She’s all packed up and the car is packed with her stuff. By early afternoon, we’re ready to go finally, we get the discharge instructions, and Mommy is in her wheelchair and off we go to meet Jeff in his car in the front of the hospital. It is another beautiful sunny day, this entire terrible week has been gorgeous weather, which seems at such odds with how we are all feeling.
This is it, we’re on our way home. I’m numb and tired; but Mimi is doing pretty well, she seems happy to be out of the hospital and enjoying the car ride, in the sunshine, it’s a beautiful day again, a little cool breeze but very nice. It’s a pleasant drive home and we manuever the wheelchair to pick her up and move her into the house, we get her dressed and settled into bed. Check her medications…I discuss with Dad how to set up a schedule based on what the hospital instructed us and he makes one by hand. I work on setting up her room with a staging area of all her supplies on her library table…by putting on a plastic tablecloth to protect the table but it’s a perfect spot. A good thing to have for caretakers…a staging table right near her bed…where I keep all her underwear, lotions, adult wipes, extra chuks, deoderant, comb, anything that I need to help care for her.
We found that we had to work with the hospital Social Worker and the Case Manager to coordinate mom’s discharge and that had to be coordinated with the Attending Physician (Dr. Carter or his staff) and the hospice nurse from our county. Since University Hospital is located in Onondaga County, the staff there did not have experience working with our county’s hospice but after a lot of phone calls and following up, I pulled together the necessary people and coordinated the discharge. It seemed confused, not a smooth process at all and I got the impression that this definitely isn’t the road most frequently followed or at least the hospital hadn’t put a lot of effort developing as smooth a process for hospice discharge as other medical discharges.
We’re all glad Mimi’s is home, almost everyone from the immediate family is there. Jeff’s boys, Gerry’s girls. My girls are the only ones missing; but they had been there just two weeks ago for Jesi and 1 week ago for Chellie. I had planned with them to have them come up the following weekend. I was worried about the number of people, too many people would tire Mommy out. Mommy was hungry and she ate, Dad and I created a handwritten checklist to keep track of her medications by day and time. We all sat around and talked with her but then it started to get late, like around 10. Mommy was tired so I had everyone go out into the kitchen and off to bed so she could get some sleep.
I was determined at the beginning of her homecoming that I didn’t want to leave her side. I was going to stay with her throughout the entire hopsice time, so I packed a little bag of my stuff earlier that evening which I brought back. I was going to sleep in with Mommy on the extra bed in the front room. Dad would sleep on the couch in the Library until Jeff and his family left and then he could sleep in the bedroom upstairs.
I was so exhausted that I quickly dropped off around 10:30, listening to Mommy sleep, breathing rhythmically next to me in her hospital bed. Sometime around midnight, I woke up again and my heart was racing. Not good for me…with my heart condition, I usually am around 45 bpm. I knew I was over tired, so I just laid there, trying to relax and telling myself that I was resting even if I wasn’t sleeping….trying every conceivable position to help myself get back to sleep and not wake Mommy up. Finally by 2:30 a.m., I started to get scared. I wasn’t sleeping, I was getting more tired and my heart wouldn’t stop racing…what am I going to do if I have a real problem, the last thing everyone needs to worry about is me collapsing or having to be rushed off to the hospital…but I’m scared cause I know this is not good at all. Finally at 3:00 a.m. I call John at home and ask him to come pick me up. We talk about whether to go to the ER but it’s a long drive to St. Josephs and then I’d have to wait around in the emergency room, only getting more tired…so we decided to try to have me just go to sleep at home and see if that helped…which we did. I woke Dad and told him I needed to go home, couldn’t sleep and was exhausted. He agreed and would watch Mommy. I felt terrible, like I’d let her down already. I didn’t know what else to do, I knew I wouldn’t be any good to her if I didn’t take care of myself.
Sunday, 9/30 - I slept for a few hours, around 4 a.m. until a little after 7 a.m. and then asked John to call Jeff before he left with his family and find out how Mimi was doing. I didn’t want them to come down to say goodbye, I was too exhausted and I didn’t want to make a big deal out of this either…so John just said I was really tired. Mimi was okay, Gerry and family came over and were going to take her outside by the pond and spend time with her, which they did and they had a lovely day. I went up to see her in the late morning, and I could see she was good. I checked on her medications. But, I couldn’t stay. I still didn’t feel right and went home and slept more, back up again to see her in the evening, spend time with her, check and give her her meds and then back home again. I got my heart rate eventually back down to normal, but still exhausted beyond belief.
That night I prayed to God, “Please, please give me the strength. Please God allow me the strength to be able to take care of her.” I had to be back up there with her Monday morning, when the Hospice nurse and social worker came. After this, I decided that I would have to sleep at home overnight from now on, just to make sure I would get the rest I needed so I could take care of her during the day. My days ended up being that I would arrive at her house around 6 - 8 a.m. and not leave until around 10 or 11 p.m. That way I felt I only missed the overnights, when she was sleeping for the most part and did not require any medications, unless it was for pain.
Monday, 10/1 – Karen Delmonico was Mimi’s RN and Sara Bliss was her local social worker. Very nice people. Gerry and Terri already knew Karen and said she was excellent, so we already knew we had a good person to take care of Mom. Sara was very pleasant but young. They arrived around 10 and we met with them in the kitchen, where we would conference every time. Mommy was in the front room and we could have some privacy – though I constantly and repeatedly had to remind everyone else, my brothers and father included, to keep their voices down. Mimi still had unbelieveable hearing and could easily hear what was said in the kitchen, a full two rooms away from where she was in the front of the house.
During this first visit, we find out what the deal is, how Hospice will work with us to take care of Mommy. Main focus is pain and symptom management. Karen, the RN, will come once a week or as needed to assess how Mommy is doing physically. We can reach her during business hours, and after hours, we can contact the 24 hour On Call nurse, so we always have access to medical support 24/7. We’re still trying to settle who will be Mimi’s Hospice Doctor…Carter first, then Derringer, then Brereton. Dr. Warner is the Hospice Medical Director and works collaboratively with whomever will be Mimi’s primary doctor, but also acts as backup if that person is not available. Dr. Warner is available 24 hours.
Karen explains how all of the prescriptons work – 100% coverage under the Medicare Hospice benefits…thank God we don’t have to worry about this and I don’t have to worry about Dad doling out pain pills because they are on a budget. We arrange to have all prescriptions filled out of Walmart in Norwich, Mom and Dad’s pharmacy. We also find out that an LPN, Shelly Harrington, will start on Tuesday, will come every day during the week and primarily take care of Mommy’s hygiene as well as keep track of her medically. Shelly comes every week day around 9:30 and is there for about an hour…she bathes mom, puts lotion on her, changes her clothes, changes her bedding, washes her hair every other day, brushes her teeth, and keeps Mommy’s supplies filled.
Karen tells us about the other services – Social worker, Spiritual Care Coordinator which we decline because of Mommy’s relationship with her church in Sherburne and Reverend Kelly, as well as Volunteer Care available to help us – companionship or coverage to help us if we need to go out.
No reflection on our Hospice at all (they are outstanding), but I have my own problem with “strangers”, no matter how wonderful, taking care of my mom so I am not interested. We have me, John, Dad, Gerry, Terri, Andy and Sarah at various times and levels of involvement. In two weeks, Jeff was going to come up and work out of my house and be with Mommy during the evenings/weekends - I thought we had enough people. We agree to start Mommy on Vicodin as her pain killer, 1-2 no sooner than every 4 hours, can also be taken with Tylenol plus her other meds: Decodron (sterioid) was the max dose Karen explained, this was what was shrinking the swelling in her brain so that Mom regained some of her personality and a lot of her function, speaking, walking; but, since it’s the max dosage, there isn’t any more we can give her. Once it wears off , that will be it, we can’t hold back the side effects of the swelling after that point. She warns us that the positive effects of this medication can disappear quickly, so Karen encourages us to enjoy this time with her as much as possible. Karen explains what she is going to talk to Mommy about and that she will be open but careful in her approach, because we explain that we don’t know how much Mommy understands the extent or prognosis of her illness or knows what’s really happening with her. Karen says, in her experience in Hospice, most people know, even if its innately. And most people will talk to the RN about their illness even if they won’t talk to their own families, since many times, they don’t want to make their families upset.
Karen then goes in to see Mommy privately and apparently Karen tells us later that as soon as she closes the door to the front room for privacy, Mimi starts asking her questions that leads Karen to believe that Mimi understands. Mimi wants Karen to be sure to share with us (her family) what she knows. Mom wants to know what is going to happen to her and Karen explains to us later that Mommy “has fear, fearful of the unknown and what is happening next”. This is very upsetting to everyone but especially my brothers. This is exactly what we didn’t want for her and didn’t think she would experience based on what the doctor had said. Her BP is good at 112/68, lungs are clear, heart rate is good, right leg is weaker than left. Karen suggests a baby monitor so we can hear Mommy for when we’re in the other rooms of the house and if she needs us. This is an excellent suggestion. I immediately go to Walmart and get a monitor and several new pajamas for Mommy to wear…its hot and she needs some cooler clothes to change into. All of her wash is on the dining room table and after Dad washes the wash, we decide to just fold it and sort it on that table so, once again, its readily accessible to all of us.
Gerry comes over almost every morning and fixes Mommy a special breakfast – we are all enjoying this time together…breakfasts with Gerry as the “special chef”. We bring her out to the kitchen table, she’s eating like a horse which makes us happy because it seems so positive. At first Mommy uses the walker to get over to the bathroom to use the toilet…this lasts a couple of days but it soon becomes too tiring for her. She is now wearing pullup Depends and they work pretty well and are relatively comfortable. When she first came home from the hospital we were using disposable pants with side tapes, but I ran out them over the weekend so we had Depends…but I cut them open cause I thought it was easier for me to change them on Mom when she was lying down…and I used surgical tape to tape them but it didn’t hold. I think to myself, what a stupid thing for me to do and uncomfortable for Mommy. But I’m inexperienced. That was only the first night and by the next day, we had figured out to use the pull up depends because it was easy to get them off and one while she would sit on the toilet.
After it got to be too much for her to walk all the way over to the bathroom in the front room, which took less than a week, we put the commode chair next to her bed and that worked well…one of us could help Mommy to the edge of the bed, let her rest and regain her strength and then she’d hold on to us and we’d help lift her up and move her over to the commode chair. This worked well for the first couple of weeks, though after the first two weeks or so, it got more and more difficult for her to use her own strength to get up. It took too much out of her, and we had to lift her ourselves more and more, until we couldn’t do it any longer with just one person. It took two people, my brothers or John to actually lift Mommy and then I would pull her pants down and then they would place her on the commode chair and then in reverse to get her back into bed. This became very tiring for her so eventually we only did it when she needed to have a BM and I would just change her in bed…still using the pull up Depends and then eventually, towards the last weeks, she couldn’t lift her bottom anymore, so we changed over the the underwear that Hospice provided which had side tapes.
I think the key point here is to be sensitive to how much of the physcial exertion took out of her and we needed to adjust our care methods so best help her maintain as much of her strength as possible. Karen calls back later that afternoon regarding Dr. Carter. She was not able to reach him until after 4 p.m. but she promises to call us back tomorrow and assures us that she will be back the following Monday if there are no other issues.
10/2 – Karen calls. Dr. Carter will not serve as Mom’s hospice doctor (I didn’t think so), but Dr. Derringer readily agrees. If we needed a stronger pain killer, we would go to Percocette. In fact, Karen and I decided to change to Percocette this week because 1 Perc = 2 Vicodin and I could give 2 Percs if needed so Mommy would get double the pain medication. All I want is for Mommy to be painfree – that is one of my most important objectives. Karen also tells us that we could discontinue the Fosomax, Iron and Calcium pills that Mommy had been taking prior to getting sick. Karen points out there was no longer any need to continue with those meds. I tell Dad about what Karen advises and he starts to cry, saying this is just another sign of what’s to come. Karen is going to call the prescription in that day and we could pick up and switch anytime.
10/3 - Reverend Kelly comes out for a visit. We ask him to reach out to Reverend Roger and he tells us that based on our previous wishes, he has not said anything yet to the Church congregation. At this point, we agree that is what we want for the time being. Reverend Kelly tells us that he wants to bring Communion for us on Monday, which Dad and I agree will be good. Blanche Gilbert and Arietta call – they would like to visit. Steve calls, he would like to visit next Saturday. I talk to my brothers and Dad and say I will keep track of and control the visitors. Again, I’m trying to balance what is nice for Mommy to have company to look forward to but, at the same time, I didn’t want anyone saying anything inappropriate and I didn’t want it to be too much for her, tire her out. Therefore, I would control who and when people would come. I realize I am taking over the management of everything. However, my father and brothers agree, because I am closest to her; but, I couldn’t have it any other way. This is my best friend and mother – I am her only daughter. I promised her years ago that I would take care of her when she needed me. It was in another context, but it certainly applied now. No one else was going to fill this role but me.
10/4 – Pam Simmonds called, would like to come over next week, bring over a knitting project. Mommy really liked that idea, she was looking forward to seeing Pam. I asked her to call first, just to make sure Mommy was up for it and that it wasn’t going to overlap with others (again worrying that visitors not overwhelm and tire Mommy). I asked Pam to relay the same message to the rest of the chorus – word was getting out Mimi was sick. Many were asking about her and were missing her. Pam said that Red Raville had told her about Mommy last night. I don’t know how Red knew what was going on. Arietta and Ozzie came over at 11 – it was a pleasant visit for about an hour..they brought yellow Asters and small yellow tomatoes from their garden…less acidic so easy on the stomach. Mommy really liked them so she snacked on them the rest of the week until they ran out. When Arietta and Ozzie found out how much she liked them, they gave her a whole grocery bag full of them.
Judy from Hospice called regarding whether we wanted volunteer services. I talked to her that we were good for now. I asked who the people were and was told they try to get them close by for convenience. Judy mentioned a local person and once again I find myself just not liking the idea of strangers taking care of my mom at this time of her illness, I thanked her but declined…though I did find out that a professional massage therapist and business associate of mine, Deb Foster, was part of the program. I ended up having Debbie come out to give Mommy massages for an hour – Mommy loved them. We ended up having 4 Massage sessions for her over this timeframe. By the 5th one scheduled, Mommy was too tired to have anyone over, so she didn’t get a massage later on, but she really liked having Debbie over. She said the massages really helped her back and arm which hurt her, probably from laying in bed so much. I think over time, her muscles just ached and I know towards the end, it just hurt her to be rolled over onto her side or even helped out of bed.
Karen called, she would be off the next day but she assured me that all of the other nurses were briefed on Mommy’s situation and any one of them could help us if we needed. I talked to her about how I was administering the meds and that I was pretty much keeping up with Mom’s pain during the day; but she was sleeping pretty well over night (even though she would get up at least once during the night during this time, she wasn’t asking for pain meds then) so that, by morning, a lot of time had elapsed so Mimi might have a headache in the morning. Karen suggested that I give Mom a pain killer before bed, even if she didn’t ask for it.
Karen had advised us that Mommy might have trouble communicating her headaches, especially down the road and we needed to watch out for that now. Karen also advised us that we needed to be careful of how much we asked questions. Too many questions might be overwhelming and confusing. Mommy might also have difficulties answering them and/or she might have trouble even recognizing she had a headache and telling us. Karen said we needed to carefully watch her body language, facial grimaces, just generally make decisions for her, we can’t rely on questions and answers –though this was extremely difficult to do and even to the end, I caught myself asking her multiple questions and then kicking myself mentally. Reminding myself that I wasn’t making it easier for Mom by presenting her with so many options. It was my job to take care of her and simplify things for her. That really required thought and discipline for all of us.
I suggested to Karen that maybe I should try to spread Mommy’s steriods around the clock more instead of 8, 12, 4 and 8 and then a long stretch over night. She agreed, this would be good. Steriods required food intake with them, but that wasn’t a problem at that point. Mommy especially liked her rice or chocolate/banana puddings or Terri’s homemade applesauce with sugar added. Karen also said that Dr. Derringer had recommended we also eliminate Lipitor. However, I didn’t want to do that yet because I didn’t know how to explain that to Mommy. She understood when I explained to her that we needed to eliminate the Calcium, Fosomax and Iron because they would constipate her and she didn’t really need to take them “for now”; but, to eliminate Lipitor – that seemed like it would appear odd to her and alarm her. Karen agreed.
During the first two weeks, Dad was giving Mommy her steroids and early morning meds to her before I arrived in the morning because she was getting up around 5 or 6 to go to the bathroom. The next thing I know, he stopped giving her the Lipitor the next morning. I was not happy, I thought the whole point we all agreed on was the protect her from this kind of alarming or upsetting stuff if she didn’t ask us or it wasn’t specifically required. Oh well, it ended up she never asked about it. I’ll never know whether she “knew” and didn’t want to ask. This aspect of her illness was one of the most difficult to deal with…what did she know and what didn’t she…was she capable of understanding or was she not?
10/5 – Today Mom starts to say she has a little sore throat. We start giving her some throat lozenges. I tell Shelly when she comes and she says we need to watch her for Thrush, which isvery common with steriods. A yeast infection which produces a white coating on the tongue and throat or perinatal area. Yogurt at least once a day will help. If it is Thrush, there is also a mouthwash that will help. We immediately get yogurt, and Mom enjoys eating it as her appetite is so great.
Gary and Donna call, they want to come over on Monday around 10 or 11. We had a good week this week in general…one of the days, I asked Mimi if she wanted to go for a car ride, look at the leaves, and go “spy” on the Amish…she thought that was funny. So one afternoon, after her nap, she got up around 3 p.m., I took care of her meds, got her dressed, Dad and I got her in the wheelchair and carried her down the steps. I pulled the car around, the grass was deep so it was hard for her to move her feet through it. I helped get her into the car and we were finally ready to go. It was exhausting…but I was happy, we slowly moved down the driveway and turned right north up the road.
But Mommy is clearly tired, all that activity of getting up and down, dressed, bathroom, out to the car, was a strain. By the time I got to Walstrom’s driveway, I asked her if her head hurt and she said yes, so I turned around and ran back inside the house, got her some pain killers, water and pudding, ran back out to the car and helped her take the pain killers. Did she still want to go? Yes, so we slowly drive down the road, she takes her pain meds and pudding. We drive west on 80 towards Otselic and I’m watching her. She just seems too tired, so we talk about going up Texas Hill instead of all the way over to where the Amish live. She agrees to this and we drive up through the back hills, looking at the trees, its beautiful outside and we have a nice drive. We get to a remote spot in the woods and Mimi notices a wasps’ nest hanging in the tree. She is so observant; even with this tumor, she sees excellently. She continues to amaze me. But she seems really tired again and wants to head back home. We come out on Foster Road and I drive back home…we never got even close to the Amish, and were only gone about 30 minutes total.
I think to myself about back to when Jeff was talking about all the things we should make sure that Mimi get to do: go to Church, go to Cornell, go for drives, go out to the pond, and I said told him, “some of those things maybe, but I didn’t think she could do anything beyond just around her home”. Jeff was so idealistic and well-meaning; which I attribute to his sadness and compassion; but , I was worried about the balance of doing things and not pushing her too far, which might make her medical condition progress negatively for her. It was a delicate balance I would watch and worry about the entire time she was sick. We got her home and back in bed and I continued to worry about the strain, hoping I hadn’t pushed her too far today.
Friday was the night both my girls were set to come up. I was so tired and trying to save my strength and also not have another heart racing episode like the last weekend, so I arranged for our friend, Josh, to pick Chellie up from the Binghamton Bus station. Her bus was supposed to come in around 10 p.m.. Jesi was going to get in around 5 or so and catch another bus up to Norwich so I could pick her up there around 7.
I was looking forward to this since it was going to be easy on me to only have to travel into Norwich. Unfortunately, Jesi’s bus got delayed in Scranton due to construction on 81 and her bus was over an hour and a half late getting in to Binghamton . She missed her connection and was stuck down there. After several frustrating phone calls to the bus lines, I finally told her I would come to Binghamton and get her, we’d get something to eat and then wait for Chelle’s bus. I called Josh and told him I didn’t need him to pick Chelle up and he said he would still do it if I needed.
I talk to Mimi and Poppy and tell them what’s up and that I have to leave to get the girls…Dad reassures me that he can take care of Mommy and that we will see them in the morning. Mimi is happy that my girls are coming up to see her. She has been asking about them all the time, and she doesn’t seem to remember that they are far away and that Jesi works and Chellie has school and clinicals so they can’t just come up like they still lived just down the road.
I pull up to the bus station and see Jesi sitting outside. It’s the first time I see her since Mommy was diagnosed and we brought her home from the hospital. I start crying. We hug and get into the car, talk about what we should do. We call Chelle,who thinks her bus is going to be late too and she is going to miss her Scranton-Binghamton connection. We decide to go to Scranton and get her from there, so I ended up driving all the way to Scranton to get Chelle and we get home around 1 a.m. Surprisingly I get a second wind, perhaps its the company of my beloved daughters that gives me strength; but I feel fine. I’m tired when we get home but not exhausted. Nothing is easy but we’re together for now and we’re thankful for that.
My cousin, Lisa is coming on Monday but is calling first. Karen called us about Mom’s sore throat…she orders the mouthwash..1 tsp. 4 X’s a day, swish & swallow for 10 days. We start that treatment right away . Mom’s throat has really been bothering her and the applesauce, yogurt and throat lozenges aren’t doing enough to help her. She complains about the sore throat; but I can’t tell if it that that hurts her or whether it’s a headache or both. This is hard but Karen and I agree, use the painkillers to help any kind of pain.
10/6 - We have a good Saturday together with Mommy and the girls. I rented the Sound of Music, one of Mommy’s favorites and we all watch it together and we enjoy it very much. It’s a warm day, which makes the front room really hot, so I open all the window and pull the drapes. The breeze blows and moves the curtains and we put on the fan to bring a little more cool air for Mommy…she gets hot and sweaty so I bathe her. It’s the first full weekend that I’m on my own taking care of her, changing her bedding and taking care of all her hygiene needs, brushing, cleaning her dentures, in addition to her medications. I’ve never cleaned dentures before. I have to ask Mommy what to do – brush them like teeth, put in the denture adhesive.
I’m glad to do anything to make her feel more comfortable. We stay with Mommy until its time for her bed. We get her ready for be and then go home, watch TV for awhile, and then bed for me, the girls stay up for a while downstairs. Jesi sleeps on the chair in the Bar and Chelle sleeps in her old bedroom. They don’t want to mess up my upstairs since I’ve got Colgate Parent’s weekend coming at my Bed & Breakfast. John and I have agreed we won’t take any more reservations but the local college is having a big weekend and these parents booked their rooms over a year ago so we feel obligated to keep the B&B open for this weekend.
10/7 – Sunday, we spend the morning and early afternoon with Mommy, the girls and I - and it comes time when I have to take them back to Scranton to catch their buses. They have to say goodbye, this is the last time they will see her alive again and they realize this. Its very, very hard for them both – Chellie says goodbye and has to take a long walk by the pond…she is having a lot of trouble being around her Grandma, trouble being at her house. Its hard on her as she was probably closest of all the grandchildren to her Mimi. Jesi says good bye; but can’t help starting to cry in front of her. Mimi seems a little upset by this, maybe preoccupied. Jesi goes out to the pond with her sister and I watch them from the kitchen window. I’m very sad, I worry about my girls and how they will deal with all this. Mommy and I say goodbye and I tell her that I will see her later on that evening when I get back. I drive the girls back down to Scranton to the bus station, we cry and talk about everything, they get their buses.
I get back to Mimi and stay with her for the evening, meds, get her ready for bed. Mommy asks me why was Jesi crying (so she did notice her crying) and I tell her its because Jesi’s sad that her grandmother is sick and she didn’t want to leave her, she wanted to stay. Mommy seems to accept this answer. I never know what to say…is it too much or too little. Should I say more? I don’t know so I just leave it open ended and wait and see if Mimi will ask me more. She doesn’t.
10/8 - Karen comes to visit – she tells us to watch Mommy for seizures – they can be small (staring) to large, full body shaking. What should we do? Mainly keep her form hurting herself, keep her safe. Call the 24 hour nurse, there’s not a lot that can be done…we need to watch her for constipation, her pain may increase so we need to watch that. Next level of pain meds is Oxey sp? 12 hour med –then morphine. She reminds us again that she might not be able to articulate her pain, can’t answer or may say the wrong words (says no, but means yes) this is true for anything we ask her, so we need to watch her nonverbal signs and we need to make decisions for her. Checked Mommy, definitely thrush.
Reverend Kelly visited later that afternoon and we had communion together at the kitchen table – Mommy, Rev Kelly, me and Dad. We prayed.
10/9 – Called Deb Foster, thought Mimi would like a massage, we have it set up for Weds. 3:30. Good friends, Carol and Louise, visit at 11, they bring another friend of Mimi's Della…and LOADS of food, & a card from the 4H picnic. Little 4H kids sign the card; but have no idea what they are signing and so they write about how “they like the picnic” messages and Mommy keeps asking me, “what does that mean?” We read the stuff people write together and she likes to hear from them; but the little kids messages confuse her. So I explain that they are just signing a card, and they are at a picnic so that’s what they write about…she asks me several times whenever we look at the card.
I put all her cards and flowers around the room, on top of the TV cabinet and on the chest and bookcase next to her bed so she can see them..but there comes so many, that after a while, I just make a pile of the cards. Dad and I open and read each card before we bring them in to make sure they are all okay…only two or so of them come in with messages that were inappropriate and we screen those out, stuff about “fighting the cancer” and she doesn’t need to see stuff like that……pretty much all the rest are fine and Mimi enjoys getting her cards and letters.
Shelly suggests rinsing Mom’s mouth 2 – 3 x’s daily with warm water and salt. This seems to help her a little, her throat seems a little better in the afternoon. Terri and Reva stop by at dinner, they brought ham, potatoes and cake from Jake and Jan. It was really tasty, Mommy enjoyed it a lot as did Poppy. Its nice she has no restrictions on what she can eat so I want to make sure she eats anything and everything that appeals to her.
10/10 – Mommy was awake when I arrived today at 8:15. She complained of an ache/discomfort in the back of her head. This is the second time she mentioned it like this. I gave her (1) Percocette. She seems more tired today, could be due to the pain. My cousin, Steve will possibly visit on Saturday. Jeff is coming back on Monday and Happy and Donna (my aunt and uncle) are supposed to visit too.
10/11 – Shelly asked me to call Karen, Mom’s throat still hurts and she’s concerned about it after this many days. Perhaps a different medicine, I called and left a message at 9:48 a.m.. Karen returned the call at 12:51 and suggested we wait until Monday and give the meds a little longer chance to work, continue with the current meds.
10/12 – Shelly mentioned that she thought Mommy was much weaker than she had been when Shelly first started. (its been 11 days). She emphasized again that rest is important. Called Deb for another back massage at 3 today. I am going to give Mommy (1) Percocette with her morning meds as well as at night automatically – she is complaining of pain/discomfort in the back of her head. Trying to manage her pain is scary for me. I so much don’t want to make any mistakes or delays. Its hard to know what’s the right thing to do, when and how much to make sure she’s comfortable. Staying on top of Mimi’s medications is a very high priority for me. My neice, Reva, has prepared a typed up chart of her meds and timing, a very well laid out format so we can track what she’s taken and when and ensure all her daily required medication needs have been taken. It is excellent and I highly recommend this approach to others. The Med Chart has really helped with keeping all her information organized so we can make sure that nothing gets mixed up…particularly her steriods, but also her seizure meds and pain killers.
Everything and timing is so important and I don’t want to screw up even once. And the tricky part is also that Mimi never complains….never. You have to ask her how she is doing and she will respond; but - you have to ask, she won’t initiate….so if you don’t ask, she could be suffering. Maybe this is because she’s dealt with chronic pain for so long, or she’s just so strong and stoic or maybe she is no longer able to recognize it and articulate it. I don’t know; but I do know she is incredibly STOIC, and strong, one of the strongest fighters I have ever known, even though she is such a tiny little person. Just one of the many things I love and admire about her so much.
10/13 – Steve comes to visit with his two children – Mike and Nika. We had a very nice visit, the children had a lot of fun on the farm and were really well behaved in the house around Mom. Mom’s legs are weaker. She decided to eat supper in bed tonight, I think the visit tired her out.
10/14 – Mommy is weaker still in the legs, on her right side overall weak and showing signs again of agreeing with whatever is suggested. I need to, we all need to, keep focused on making sure our questions are open ended so she can answer with what SHE wants, as long as she is able to. This is the tricky part, is she able to really say what she wants? I think so…in my opinion and in knowing my mom so well, I do think so. We just need to be patient and take our time, give her a chance to do so.
10/15 – Karen visits and this time, she asks me to come into the front room when she is there to examine Mommy. Before this, we let them have privacy – just Mimi and the RN so they could talk openly, so Mommy didn’t worry about what she said in front of any of us family members. But now Karen says Mom is showing signs of increasing weakness and is having a hard time answering questions, finding her words and her short term memory is more affected than long term. I tell her I noticed the same. I have been pretty good at helping Mimi find alternative words or giving her a chance, give her time…don’t rush an answer, let her find the other words. If Mommy seems like she’s struggling and getting frustrated, then I try to finish the sentence for her. I am pretty good at knowing what she wants to say; but not always.
For the most part, Mommy and I are able to communicate with each other pretty well; but that’s not true for Karen, so she’s asked me to come in with her from now on to make sure everything is covered and answered appropriately.
Mommy still has her thrush; but it is better. Karen is going to call Dr. Derringer and order new medication. Shelly is out sick today. Happy, Donna, Ed and Joan visit and its a long day because we don’t get a chance to nap in the afternoon. Sarah visited later in the day and Jeff returned for two weeks. He arrived at 8 pm and when he got there, Mommy was still distracted by the TV and kept looking at it even though Jeff was talking to her by her bedside. This was one of the indications to me of her not really being herself. She would never have been distracted from her son under normal circumstances.
Jeff told Mimi earlier that he was bringing her a present, a necklace, so Mimi was perked up at the thought of that. She loved getting presents and she was always so gracious at receiving them. You knew she loved getting them, she never said, “oh you shouldn’t have” but rather graciously accepted them, sincerely pleased at whatever it was. Well, anyhow, Jeff said not to get too excited, it wasn’t anything “big”…so when he arrived that night, he gave her the “Roy” necklace…a little plastic square that lights up in a blue glow in the dark kind of light, that has a plastic chain and two magnetic batteries where it attaches in the back, this creates the charge for the light. The necklace read “late night with Roy”, which stood for the UNC Basketball coach. Jeff and Jody had visited Kyle at college that weekend and they went to the basketball game where this was handed out. Mimi loved it, she had me put it on her a LOT during this time. She showed it to her visitors and even had it on for her pictures with her friends. We all just started calling it, “Roy”…..”Where’s Roy?”…. “We need to put Roy on”… just kind of a cute little memory.
10/16 – Keep Keppra (seizure med) at 12 hour intervals, that’s important. New Thrush meds started last night. Reverend Kelly is coming by this afternoon. Mommy asked me to cut her hair. So after Shelly washed it, I got her in her wheelchair and I trimmed her hair, which I enjoyed doing very much. I think she always feels so much better when her hair wasn’t tickling the back of her neck. I’m the last one to cut my mom’s hair…I’m the last one to give her manicures, I gave her three during the time she was sick. She liked having it done and then I would massage her hands with lotion. We talked about how much I loved getting my hands manicured too, because of the hand massage you always get at the end.
Gerry and Terri bring us Chinese food that evening…it was the first time Mommy tried Crab Rangoons. She didn’t get up and come into the table for dinner, she ate in bed.. In fact, I don’t think she was awake when Terri and Reva came with the food, so we ate in the kitchen and Mommy had some later.
Shelly mentioned to Karen about Mommy’s distended abdomen. I confirmed that Mom continued to have good urine output and no complaints of pain or discomfort…could be all the food she was eating and the steroids had caused some weight gain. Karen doesn’t think its anything to worry about; but we will all continue to monitor. Karen is off Friday; but others will cover. Reverend Kelly moves his visit to Weds. Nancy and John plan to visit Thursday and Ed, Joan, Maria plan to visit Friday. All these visits are nice for Mommy as long as everyone is quiet. They sincerely love and care about my dad and mom and mean well. They have hearts of gold so I try to be patient. I am tired beyond belief, so my patience is very, very low and I’m not a patient person to begin with.
My number one priority is my Mom – no one else even comes close to mattering (except my girls) so I am only looking out for what’s best for her. To me, its black and white, no questions asked, period. My attitude about this has caused some tension, particularly with my father, who sometimes doesn’t see things the same way I do. He complains about her chewing her pills, why can’t she just swallow them, he’ll say, its “easy”. I say, maybe its not so easy, we don’t know if she’s having trouble swallowing and maybe chewing is easier for her. I think to myself what the hell difference does it make?, she’s dying, why can’t she take her pills however she wants to for Christ’s sake!!?? I am very much on the edge, I know.
He complains about her watching Law and Order, a show he hates, but one she has always enjoyed for years. Every night he teases and complains about Law and Order and I think, this lady is going to die in a few months or less, let’s just let her watch whatever she wants. I think to myself, "can’t we ALL just put aside our own needs for a short time and let EVERYTHING revolve around her? What is so hard about that?…its just a stupid TV show, who cares!!!" My bitterness at the whole situation grows.
It was very hard not only managing my Mom’s illness and care; but also deflecting and protecting her from others who meant well, but didn’t show what I felt was appropriate common sense or reality. It was balancing act for someone like me, who is more of a bulldozer when it comes to something important for someone I love so dearly. But I knew everyone else was also having a terrible time, like I was, and we all love her so much, and I knew that it was important to keep things as calm and peaceful as possible for her sake. So I worked very hard at keeping my mouth shut and tending to my business.
Tuesday, 10/16 – Jeff and I took Mimi out for a car ride. When she got up from her nap, I got her dressed, into the wheelchair. Jeff and Dad carried her out the front door and down the 3 steps to the car and then Jeff helped her into the car. She was getting so weak that she really needed someone to literally lift her up and down. She could somewhat balance herself once she was up on her feet, but you could not let her go and she could not lift or seat herself. Our trip went around the hill, over the Lehmer road, back around my B&B, and over to Gerry and Terri’s house. Dad insisted that Jeff drive the car up to the construction area - a 6 foot wide car through Terri’s landscaping and bushes where there was a 4 foot opening but he insisted it would work and it would be okay. I said no, it wouldn’t fit and it would scratch the car and ruin Terri’s plantings. Thank God Jeff immediately agreed it wouldn’t work. In general, the car ride was nice for her.
However, just doing that little bit was very fatiguing for her. She slept for three hours afterwards and this was after her earlier 3 hour lunchtime nap. She slept from 6-9 and I had to wake her for her medications. She stayed up for another 2 hours and then slept straight through to 6:30 a.m. She was sleeping more and more now, no longer waking in the middle of the night so much and she was sleeping when Shelly arrived in the morning, so we would have to wake her for her meds and Shelly.
This also meant that she was soaking wet in the morning. Mommy had been almost completely incontinent at this point, 100% for urine and so so for BM. She could control them mostly but not completely, which was no problem for me. I didn’t mind at all; but it made her uncomfortable being wet and we were worried about the effect on her skin, which had been doing really well. She only developed one bed sore on her elbow, which Shelly immediately took care of with special “second skin” ointment and it got better after a short while.
10/17 – I called Karen and asked her to meet with all of us, Gerry, Jeff, Dad and I. We wanted another clinical assessment. Dad had been into Walmart and saw the Pharmacists there, who had known both of Mom and Dad for many years. The Pharmacist suggested this religious group out of Afton who would come out and pray for Mom to get better, a prayer miracle. Dad got their information and wanted to talk to us kids about this. I immediately don’t want to do this. Jeff was skeptical but was open enough to talk about it and listen to what the others might have to say about it. Gerry seemed open minded and at least initially that anything that could help and maybe bring on a miracle was worth it. Dad was also open minded about trying it…willing to try for a miracle.
I voiced my opinion. I tell them I don’t’ believe that strangers praying for my Mom is going to get God to intervene and do a miracle for Mimi. If God chooses to intervene, he will. Plus Mom belongs to her own church, and all those people were praying for her already. Why would God listen to one group of people over others. I didn’t want strangers coming to see Mom and alarming or upsetting her. Wasn’t that the initial, fundamental objective when we decided to bring her home? Mommy wasn’t religious that way. She loved her church and her Reverend; but she was not outwardly a religious person. It was private and subdued for her. This approach was totally not her. I was 100% against it.
We agreed that we would talk to Reverend Kelly about it or at least that was Dad’s suggestion and we went along with it. But before Reverend came, we decided not to talk to Reverend about it because we had changed our minds enough and we didn’t want to insult our Reverend either. Though I don’t think he would have been insulted, he is too good of a person. Anyhow, it never came up, Dad didn’t mention it the next time Reverend was there.
We did arrange for Karen to come out the next day so we could find out whether there was anything else we could do to better fight this. Was there chemo or anything else we could do? Clearly, these were the second guesses of desperate people, who are caught in this slow moving world, clinging to anything that might help prolong the life of someone they love so dearly. Jake, Jan and Revererend all visit that afternoon. Teresa Jensen and Antoinette Perkins visited in the evening. Mommy was able to see everyone; but we kept it relatively short to minimize her fatigue.
10/18- Karen came out to the house and we all met with her – Dad, Jeff, Gerry and I. We wanted a clinical checkpoint now that it had been about 4 weeks since she had been diagnosed. We ask what to expect. Karen tells us that Mom will gradually sleep more, eat less, continue to weaken, including cognitive ability. “What about pain killers if she’s asleep?” She tells us they can be delivered via alternative methods – patch, suppository, orally as a tiny dropper of liquid and she doesn’t even need to be awake because it absorbs into her cheek. “What about IV’s?” There are no IV’s through this program. The body just shuts down. At some point, there is no food or water intake, usually, typically the patient lasts about one week at that point. “Do they feel pain?” No, this is the body’s natural way. She explains they are not thirsty the way you and I, who are healthy, would be. That seems strange and hard for me to get my head around; but I accept it too…because it also kind of makes sense. When you don’t feel well, you’re not hungry, so you don’t feel hungry, same kind of idea.
My brothers are very worried that she will be in that state for a long time. Gerry asks whats the longest time someone has lasted under these circumstances, and Karen said she knew a man who lasted like that for 3 weeks. The boys really don’t want that to happen. I’m just kind of taking all of this information in. If its going to happen that way, there’s nothing we can do; but make her comfortable, whether we want it or not for her to be like that. I just accept it as a real possibility. Gerry is worried that Mom will set some kind of record here. She is such a fighter and her heart is strong, he’s worried she will last a long time.
Then we talk about alternatives again. We talk about chemo mostly, what could that do to help her and Karen says it wouldn’t really make a difference. Pretty much the same news as what we were told in the hospital. Without radiation, which we all agree isn’t going to work, chemo would only buy her 1-2 weeks. As far as radiation, Mommy couldn’t possibly withstand the trip up and back to Syracuse every day, never mind the effects of radiation. She just doesn’t have the strength at this point to endure that…so without radiation, or with radiation and chemo, it was only going to maybe buy Mimi a couple of weeks. And the additional meds could make her really sick.
Karen urges us to go back to our original objective, to give her the best, most comfortable, peaceful time for her last days and weeks, to surround her with love. Karen tells us that she has never seen anyone respond to steroids as well and as for as long as Mommy has and she urges us also to enjoy this time. We have been given the gift of time to spend with her and we should continue to focus on that goal, which we were achieving so well. I have said this same thing to myself a thousand times – thanking God for this time to spend with her. Karen said we were doing one of the best jobs that she has ever seen in how we are taking care of her. We all agreed that was our objective and that we were probably just needing to reasure ourselves that we are doing and have done everything we can to help Mimi out the most possible ways.
Karen also said that she is certain that Mimi knows – at least at some level, that she is not going to get better and that she is “waiting for us” to accept this. Karen says Mom knows or senses that we are struggling and she may want to discuss her death and dying with us, when she senses we are ready. The boys talk about that it would be very difficult for them to talk to her about it. I say and have said before, that I will readily talk to her about it or anything she wants to talk about. I will be sensitive to any time that I think she is trying to approach it with me. In fact, I think she has tried on a couple of occassions, like that one time when we were alone and she asked me, “What do you think of all this?” It just came out of the blue and I was a little caught off guard. So I answered her that we were doing everything we could to take good care of her and make sure she was okay. It was a vague answer; mostly because I wasn’t sure where she was going with the question. But I told Karen I would be able to talk to her about her dying if and when Mommy initiated it. Karen said it was important for Mom to know that we were going to be okay, so we needed to be sure to somehow communicate that to her at the right time. We didn’t need to force anything; but just be sensitive to any opportunity or time she might want to try to talk about it. I assured her I would be.
She said that if we had any regrets or anything we wanted to clear up with her, that we should take the opportunity while she is able to converse with us to do so. The only thing that worried me about this idea was that I didn’t want anyone to do a huge Mea Culpa with Mimi, just to make themselves feel better and less guilty. In my opinion, Mom didn’t need that pain or burden so I said just that to my father and brothers. I think everyone got my point.
October 21 – Jeff, Dad and I took Mimi out to the pond in her wheelchair. It was another unbelieveably beautiful day. Though the air was getting cooler, the sun was gorgeous. So after her nap, I got her changed, dressed, bundled up into her wheelchair and Jeff and Dad took her out, carried her down the steps and Jeff wheeled her over to the pond with her big red dog close in tow. I took my camera and took lots of pictures. She looked so cute in her little toboggan. Mimi didn’t look so sick to me anymore. She even gave me the “thumbs up” in one shot. I picked some purple wild asters and gave them to her. Was that the last time I gave my mom flowers while she was alive? I think so…she loved wildflowers. I also took a bunch of pictures of the last couple of weeks of all the work that Gerry was doing on his addition because Mimi couldn’t go over to look at it anymore. I would load them on my computer and then show her, which she seemed to like. She was very interested in how they were coming along with their new addition; plus I took a lot of pictures of her own house and the surrounding property. She loved her home so much too. In looking back at the photos, you can see how tired Dad looked in them. Little did we know what was in store for us that night.
October 22 - Sometime around 2 a.m. the phone rang. It was Jeff. We needed to come up and take care of Mommy right away. Dad was sick and Gerry, Terri and Jeff were rushing him to the hospital. John answered the phone and Jeff just said we needed to come up right away. John and I grabbed our clothes and flew up there. Gerry and Terri were there and already had Dad in Mom’s wheelchair. He was conscious; but not aware of his surroundings. Jeff quickly explained. Dad had another one of his seizures. Jeff was sleeping in the reclining chair and Dad had gone over and got into the extra bed in the front room.
Later Jeff was awoken by noise from the bedframe bouncing up and down on the wood floors. Dad was convulsing and not breathing, stiff as a board. Jeff couldn’t roll him over to his side, but he managed somehow. Dad was choking on mucus, so Jeff instinctually did the right thing…roll him on his side to clear his passageways. Dad was having a Grand Mal seizure. Mimi woke up and asked if she could help. Jeff called Gerry and Terri. It was a miracle that they even heard the phone in the middle of the night; but they did. They got Dad awake, up and into the wheelchair by the time we arrived. They left and John and I stayed with Mommy until she fell back to sleep. John and I went into the Library and fell asleep on the couch and me on the floor for a few hours, until they came home from the hospital a little after 7 a.m.
Dad was admitted again (same thing happened a year ago) and they would go back down to the hospital; but they needed to get cleaned up for their own work and get Reva to school. Jeff told me he had never been so scared in all his life. I felt bad for him but THANK GOD he was there. What would have happened if he wasn’t? Dad having a seizure and Mommy all alone with him. Would he have died? Would she have tried to get out of bed to call someone for help? Its too stressful to even contemplate. We were just “lucky”. Gerry started saying, this is too much, how much more can we take as a family, and I thought, let’s not ask that question, let’s not tempt fate because I am sure it can get a lot worse than this.
10/22 - Karen and Sarah visit us. Karen checks Mom and determines her right side is weaker still. But her heart rate and BP are good. Karen suggests that I use nighttime pads in her underwear to soak up the extra urine, it will help keep her more comfortable. So I do that from now on and it generally works. In an effort to help out since Jeff and I were doing the bulk of care around the house, Gerry offered to make some calls about the funeral services, because Jeff was concerned we needed to start making plans. However, Gerry was so busy trying to keep his business going, and I had taken off from work almost completely (I did some work, kept up on some administrative things online but very minimal) so I had time, especially now that Mimi was sleeping longer and more frequently. So, after talking to Gerry and offering to help out with this, I started by calling Reverend Kelly and getting preliminary information on how this works. This was my first time ever being involved with planning a funeral so I knew nothing.
But also, this was so hard, so very hard. Here my mother was lying two rooms away sleeping and I am making calls to figure out how we’re going to handle her funeral arrangements. It was breaking my heart but it had to be done. We needed to know and plan; but it made me feel bad, like somehow in a weird way, I was giving up on her or letting her down. It doesn’t make any sense, I know, its all emotion; but a lot of things don’t make sense when you’re dealing with a loved one’s death. Talked to Reverend and he filled me in with what he knew, though this was somewhat new for him since he had just taken over our church less than a year ago.
Then I called Dave Tedesco, the Funeral Director at Burgess in Sherburne. Dad had mentioned he wanted her to have a funeral at her church and probably her services through Burgess’ since she was so tied to the Sherburne community. I thought that made sense, so I talked to him first and he was very helpful. Jeff is running in to the hospital to visit Dad, so I am alone making these calls. Karen and Sarah visit Dad in the hospital as well. Its kind of funny. They literally find him because they can hear him talking down the hall. He is well known for being loud and VERY talkative and that is how they locate his room.
10/24 – After a couple of days, we finally get Dad moved up to St. Joseph’s hospital. Dr. Brereton did not find a stroke and they are unsure of what happened to cause the seizures. We learn he has a blockage in his other carotid artery, we think he’s going to need surgery and he’ll be recuperating. We’re anxious to get him home as soon as possible because of the stress of being away from Mommy at this time. Every day is valuable and its very hard on him and her to be apart from each other. Mommy asked me, where is Dad, so I explain it to her and she says, “he should be here, he should be helping take care of me”. I assure her he will be back as soon as he can and not to worry. I can’t tell whether she’s concerned or annoyed at his absence, probably a little of both. But I dial him at both hospitals so he can talk to her and they speak every day over the phone.
10/26 – Dad comes home. Jeff gets him home from the hospital; however, there confusion about his meds and how we’re going to track his blood sugar. He’s now been diagnosed as a Type II diabetic but the doctors were only focusing on the seizures - no one is addressing the Diabetes at the hospital. So I call his local doctor and their recommendation is, “if something goes wrong, bring him to the ER.” I said, “Do you realize what we’re going through right now (with Mom in hospice)?” And the nurse realized and said yes. I told her we can’t afford to have him get sick again and have to take him to the ER, so she got ahold of the Dr. again and they left me a glucose test kit at the front desk of the hospital. They were going home for the weekend. Feeling more than a little helpless, I asked, “What do I look for? And the nurse said, “anything over 200, take him to the ER”.
Next, I called the attending physician who released him from St. Joes’ and she said, test him twice a day, and anything over 300, take him to the ER. Two very different answers so I decided to go with the second one. Dad’s blood sugar was all over the place and it took us some time to adjust his diet, like stop drinking cranberry juice, and get a handle on what is okay to eat. Unbelievably, we got next to no information from the hospital as part of his discharge. Now my brothers and I were managing Dad and his new meds and new tests and Mommy with her medicines and her care. It was a lot.
10/27 - Jeff has to go back home to NC over this weekend. He plans on being gone for one week and then returning; but he has to take care of some things at home, so he leaves. Gerry is going to stay over night with Dad and Mom during this time. Terri also is going to stay with him so they all work out who will sleep where – Gerry and Terri on the bed, Dad on the couch or reclining chair.
10/28 – Brandon, Shane and Aunt Jean come to visit. They are there for quite a while, only a short time with Mommy because she needs to sleep so we go out to the kitchen and have a nice dinner. They leave around 8 p.m. and Gerry and Terri come over for their first overnight.
10/29 – Karen comes for her Monday checkup. Mom’s BP is good, lungs are clear. Mom was up Sunday night (BM) and Monday 6:15 a.m. (BM) She had a good alert day. Shelly said Mom may need to get a catheter sometime. Use prune juice to make sure she continues to have BM’s. Karen said do so as needed, see how it goes. Mommy is having more trouble getting out of bed. Shelly advises us to be very careful lifting Mommy out of bed. Because of her condition, her bones are very brittle and can literally break by just being lifted and/or she can easily pull a muscle, so we have to be very careful. Now its getting harder to get Mommy onto her commode chair, but she still wants to go to the bathroom on it. Plus she will get up and sit on the pot, and we’ll cover her up and she’ll sit up and we’ll all gather and talk…sometimes she’ll even eat her breakfast on the pot while she’s up and trying to go to the bathroom. It feels better for her back and muscles to get out of bed, so we try very hard to try to get her out of bed. Maybe once a day now, just to help this part for her.
Shelly teaches us how to lift Mom now using a towel as a sling under her legs and set her on the commode chair. This is actually much easier on Mommy, safer and easier on the person doing the heavy lifting because it now takes two people to lift her (two of the men, so it has to be Jeff, Gerry and/or John – Dad is restricted from lifting). To make things easier and less fatiguing for Mimi, Shelly recommends using pads for her to urinate if she doesn’t feel like getting out of bed to go to the bathroom.
Carol, Louise, Della and Keith come up and bring literally coolers and baskets of food with them for us. I am overwhelmed with their generosity and I break down and cry as they are leaving after their visit. That was last week. Today they are visiting again (with more food) but the reason is a surprise birthday party for Carol. Mimi is in on the surprise,which was Louise’s idea. Louise is so thoughtful. We have a surprise cake, icecream and presents for Carol, who is truly surpirsed and happy. We all sing happy birthday to Carol, and the ladies all pose for a picture with Mommy. Josh, John and Sarah also show up during the party and they get cake and ice cream too.
10/30 – Mommy is more tired today. She did not get out of bed at all. Reverend Kelly is coming over tomorrow (Weds around 4 p.m.). Overall her spirits are good, she’s just a little more tired. John’s uncle and family friend, Buster, stopped in for a surprise visit, he stayed for about an hour. Nancy, Joan and Ed are planning on visiting on Thursday.
10/31 – Mommy is up from 3:00 pm. to 1:20 a.m this morning. Sometimes she sleeps all day and other times, like this, she seems to stay up for long stretches. Terri had to finally turn off the TV to get Mimi to go to sleep. In the morning, I went and got Mommy some of my little pumpkins that grew from left over seeds that were discarded in a horse pasture the prior year. I picked about 6 and Mimi told me what she wanted and I decorated their little faces for Halloween. Later that afternoon, we tried the new technique for lifting her today with the towel. It was Gerry and John who did the lifting; but Mom got too tired before we could get her lifted to the commode. She hasn’t had a BM for a couple of days and it was getting us worried.
11/1 - Then another crisis hits. Another middle of the night phone call and your hearts stops. At 2:30 a.m. John and I got a call from Terri ,who asked us to come up right away. Their daughter’s fiance, Andy, had been in a car accident and was being airlifted to Wilson Memorial in Binghamton and they were leaving with Sarah right away. John and I passed them on the road when we were driving up to Mimi’s and Poppy’s. We were in shock at this new event. Mommy was awake for a little while when we got there. Dad was very upset and after Mommy went back to sleep, we sat in the kitchen for an hour, drinking coffee and waiting for a call, not knowing what the outcome might be but very scared. Any's car was flipped and he had somehow got out, wandered up to someone’s house outside of Sherburne, who called an ambulance. People don't get airlifted to the area Trauma Center in Binghamton without it being serious.
I was praying that Andy would be alright. Please don’t let him be killed or paralyzed, with him and Sarah just starting out their lives together. It will kill this family to have another tragedy, How could Gerry, Terry and Sarah handle it. It would be too much. We were all silently saying our prayers while we waited. Finally I had to lay down, so I went into the Library and laid on the floor where I stayed two weeks earlier and tried to sleep, but couldn’t. Waiting for the call that finally came. Andy was alright, broken collar bone, maybe concussion, lacerations to his face, hands and torso but okay. He was airlifted because the emergency crews couldn't tell from all the lacerations how bad his head injury was. Our prayers were more than answered, they were exceeded. We got lucky again.
That day, I cancelled all visitors because of Andy’s accident. We had agreed when Dad came home, visitors would be limited as to how many in a day, and only scheduled in AFTER Mommy’s nap. This made it so we could all nap, including Dad, and then being later in the day, visitors could only stay for a short time.
Over the last couple of days, Mommy keeps talking about having something in her ear. She says she thinks she ate some corn and she didn’t swallow it right and it got into her ear. I think it’s the tumor and Karen agrees. I increase her pain meds so she’s getting the maximum dosage daily on schedule, requested or not, just to make sure she’s okay and comfortable. Just another sign of the tumor affecting her cognitive ability. I'm so sorry Mommy - I love you.
11/2 – I call Karen re: pain meds because Mimi is at the maximum (8/day) and I’m concerned. Where do we go from here if she needs more. Karen orders me the new prescription that lasts 12 hours. This helps Mimi with not having to take so many pills, which is easier on her.
11/4 – Sunday – Mimi got up at 6 a.m. last two mornings. Yesterday she was asleep again by 9 am. and slept until 1 pm. Then awake till evening, sleep again until 9 pm. (more meds). Up again till 11 then sleep through the night. Reverend Kelly coming on Monday afternoon. Joan, Ed and Nancy coming Thursday. Jeff returns tonight from NC and takes back over the overnight coverage.
11/5 – Called Burgess’s again and arranged for a Tuesday visit. Debbie Foster to come Tuesday afternoon for a massage. Karen assesses Mommy again. BP is good and her lungs are clear. However, she is concerned about her abdomen size. So she talks to Mommy and I and we agree to allow them to put in a catheter to see if her bladder is empyting properly. They do it and she loses only 100 cc of urine, which Karen said indicated no problem with bladder function. Karen thinks abdomen might be due to weight gain and some general edema from steriods and lack of exercise. Okay to keep getting Mommy up and her skin continues to look good.
Karen and Shelly both commented to me that Mimi is more withdrawn, more fatigued. I just listen and agree. I see it too and it scares me. I try not to think about where this is going. Most of the time, when I’m with her when she’s napping, I just sit there and look at her sleeping so peacefully and I watch her, thinking I need to remember this time for ever, I need to keep this memory with me. I’m so glad I am here with her and caring for her and I love her so much. I wonder how much longer will I be able to watch over her like this – please just keep going. I hope nothing changes…just keep this beautiful fall going forever.
Both Karen and Shelly also expressed concern over Dad, that he looked very tired too. Karen brings me the new prescription which changes Mimi’s meds over to 12 hour intervals, same as current dosage and I can add Percocette if needed for a pain relief boost.
11/6 – Shelly was out today and Chellie’s friend Anna’s mom, Katie, came today as Mimi’s LPN. Mom is sleeping more and more, in fact, most of the day now. We are changing her meds again and are going to go with long lasting morphine, starting tonight, plus 2 Dex on 12 hour cycles. This will be easier for Mommy as she is having more and more trouble swallowing. She chokes constantly on liquids and has to concentrate to swallow. She has done better all along with solids; but liquids are hard for her and getting harder every day.
Plus its getting harder and harder to wake Mommy up to give her her meds. It is now taking me a good 20 minutes or more of talking to her, stroking her arm, physically sitting her up and talking loudly with her over and over again, until she finally kind of “wakes up”. Sometimes, I even start getting her to take her pudding with her meds, but only if she keeps her eyes open long enough…the pudding and eating also seem to help wake her up but its so incredibly scary. I don’t want her to choke; but she must have her meds. Plus now she’s taking the 12 hour morphine pill and she absolutely CANNOT chew that…the first time I gave it to her, she chewed it.
This made Karen very alarmed who told me that was very dangerous so I HAD to make sure that Mimi didn’t chew the pill. Shelly helped show me how to use the pudding to help her just swallow the whole pill. This was not easy at all to do with a semi-conscious person. I worked and worked and talked and talked to Mommy to make sure she was awake, we talked about which pills were which and I waited on the morphine until it was last one to make sure Mom was really conscious enough to know not to chew. Mommy did it successfully for several times, but it was getting harder and harder to wake her enough. Tonight Jeff was with me when it tooks us together a good half hour to get Mommy awake enough to take her pills. Jeff kept trying to give her water to drink but it kept making her choke. I would give her soda and juice which she liked and it seemed easier. Jeff was worried she would get dehydrated. This new development is very upsetting to both of us.
11/7 – Shelly recommends Thick It to help Mommy get her liquids in. It works on thickening liquids so they are more “solid”, like pudding, and easier to swallow. Terri found it at one ofhe Pharmacies in town and brought it home. It worked really well. Mom was able to take her liquids using the thickener and we got cranberry juice into her – half a glass along with her meds, pretty good job. She has not had a BM in several days, so Karen was ordering Milk of Magnesia.
11/8 – Shelly noticed a big change in Mommy’s condition in the last 24 hours and I agreed. She was hardly awake at all now and was breathing differently, harder/faster. Mom was only awake for 4 – 4 ½ hours total the entire day yesterday. She was very hard to wake, and was having much more trouble eating and swallowing. Furthermore, it was too much energy to put her shirts on over her head so Shelly and I asked Mimi (so she knew what was going on) if it was okay if we cut a couple of her pajama tops up the back, so Shelly and I could just put it on over her head and on her arms and she wouldn’t have to sit forward. This would really save her strength, which was next to nothing now.
I started using prune juice with the thickener to help Mommy try to have a BM. Shelly was going to have Karen stop by on Friday since Karen was going out of town to a conference all of the following week. Shelly definitely wanted me to keep using the thickener to help her with all her liquids now because she was concerned that Mom would aspirate and that would be very bad, could cause pneumonia.
Karen stopped by that afternoon and reminded me that Mom’s meds could be given rectally if needed. She said she felt this is probably the beginning of the last stage of her life and she didn’t expect Mommy to still be with us when she got back from her conference in Florida on the 19th. Karen showed me how to use the oral morphine drops. It is a controlled substance and I had to be “trained’, which was fine with me. I just wanted to do everything right, no time for novice mistakes. I started using the morphine drops that night for Mommy as scheduled; but I couldn’t handle getting the rest of Mom’s medicines into her anymore. I couldn’t wake her up enough to have her swallow, so I called the 24 hours Hospice Nurse that night and had her come out at 9:30 pm. after Jeff and I tried and tried to wake her unsuccessfully.
This nurse’s name was Diane and she knew Mommy from singing together with her in the Sherburne Chorus. She was very kind and professional. She administered her meds rectally except the morphine which I had already done orally. Although we had no other choices, I could tell this process was very uncomfortable for my Mom, if not downright painful. I knew it hurt her just to roll her on her side, never mind shoving a bunch of pills into her. I felt so terrible. It was so cruel, this whole situation. I was so scared because she had to have her mediciations but I hated this…its not supposed to be like this. I feel like my head was going to explode.
Friday, November 9 – Shelly helped me with Mommy’s meds in the morning. I remember Shelly kissing Mom on the forehead and saying “God Bless you, Charlotte, I hope to see you again next week; but you don’t have to fight anymore”. Karen and Shelly seemed to sincerely care for my mom and it amazes me how these people can do their jobs, they are truly so special. I think Shelly knew Mommy was going to die soon.
That morning, I sat with Mommy all by myself. I really loved these quiet times over the last several weeks, just her and I together. I treasured these times. But this time, I sat with Mommy and held her hand, and was crying, though trying not to.
I had not cried in front of Mommy this entire time. Every time I felt like I was going to, I swallowed hard. I literally choked down all that emotion and told myself, this is not the time, you need to be strong. It worked then; but now I couldn’t. I had told her I loved her a thousand times since this whole journey began and kissed her and hugged her another thousand times. But this time, I cried quietly.
I was sitting on that white plastic shower chair facing the window, and she seemed to be sleeping but she was breathing hard. The morphine I was giving her was the lowest amount and I was hoping that somehow it might help calm her breathing down. But the breathing had been, more labored and harder for the last day or so. Karen said that was how the body was shutting down, that is wasn’t like it was in the movies. You don’t just drift off, your body breathes harder and you develop mucus in your lungs which creates that rattle, and then eventually the breathes get irregular, until it stops.
So I hold her hand, and look at it. I think to myself about how I love her so much, her hands are warm. In fact she’s very warm, like she has a fever, which is another sign of the body shutting down. I was worried about that; but Karen says its normal and the fever acts like an anethestic and she doesn’t feel a fever like we would.
I sit with Mommy and enjoy this quiet time for a little bit longer. Then I say out loud to her,
“I love you Mommy…………….thank you for everything you have done for me…….…you are my best friend”. She makes a slight face, like a smile, and I am positive she heard me and she liked hearing what I said. I think she’s telling me the same thing. I already know how she feels about me and she knows how I feel about her. But I’m still glad to have said it , out loud, so she heard it one more time. Maybe it’s the last thing Mommy hears, I don’t know, but I hope so, or at least its one of the last things she hears, that she is so loved and appreciated.
I called Gerry and tell him that he should come over today and spend time with her and he does. The three of us kids are in the dining room at some point that afternoon, and we’re talking. I tell Gerry what Karen says and he says he can’t believe it, he thought she had more time. I tell him Karen says Mommy will be gone within 24-48 hours and probably closer to the 24. We talk about how fast this has happened, but how it was right on schedule with what Dr. Carter has said. We talk a lot while she rests but we take turns going into spend time with her.
We’re all together later that evening…Dad, Jeff, Gerry, Terri, John and I. Mommy was breathing very hard, all day long she was breathing so hard and rapidly. It seemed so exhausting to me, like she was running a marathon. It made me upset because it was such a strain for her. Her heart was beating at 172 bpm. How could this continue at this pace? I gave her a higher dosage of morphine oral drops thinking that might help relax her; but it didn’t seem to matter. I called the 24 hour Nurse again for help with the other meds. I couldn’t do the rectal meds myself. It was Diane again and she came out around 9:30 or 10 p.m. She helped me change her underwear and then she administered the meds. It seemed to hurt Mommy, she grimmaced and it made me feel so badly again…why did she have to endure this? I couldn’t stand to see her in pain. We got her settled again and Diane left.
Terri asked me whether she and Gerry should stay. She was worried to leave Jeff alone with Dad after how he was when Dad had his seizure. She said he was really freaked out and she was worried to leave him alone tonight. I said I was planning on staying overnight; because I needed to give Mommy her morphine every two hours. But after Terri left the room, I thought about it again and asked John what he thought. I was afraid I would get sick again and couldn’t afford not to be able to take care of Mommy, especially now. I was the only one who knew how to give her the morphine and all her other care. On the other hand, I couldn’t take a chance of having another cardiac incident and not be able to care for her in the morning…so I went back to Terri and said I changed my mind and why. I prepared enough of the morphine dosages to last the entire night until I came back first thing in the morning and laid out all the syringes, and showed Terri what and how to do this. Then John and I left Mommy around 11 and went home and to bed. This was so hard and I was scared, but I was exhausted, so I fell asleep shortly.
The next thing I know the phone is ringing again…its 12:40 a.m.. John answers, its Jeff….Mommy just died. She was breathing hard, he had woken up, she gasped a couple of times and then just stopped breathing…that’s how he explained it. So John and I got up and drove right up to the house. They had already called the hospice nurse, Diane, to come back out. I went in to the front room and Mommy was lying there, in basically the same position she was when I left. Her eyes were rolled up and slightly open and her mouth was open, her arms were laid the same way above the covers like when I had left.
I was crying and I kissed and hugged her..she was still warm. I pulled the covers up over her to keep the warmth in and patted her and stroked her arm and cried. Jeff, Gerry and Terri were on the couch I think, I can’t remember where Dad was. I just sat on her bed with her and stroked her arm and hair. I know we talked about stuff and I cursed this ironic disease, "why did she have to die from a goddamned tumor, why did she have to suffer from headaches her whole life just to die from a f*&king brain tumor." Then I felt bad, like I shouldn’t swear like that. It didn’t seem proper for some reason, but its exactly how I felt.
In some way, I felt like she wasn’t struggling anymore and I guess that was good but it wasn’t good. We were all crying and I kept looking up at the ceiling. Was she there, could she see us, is she looking down at us? Mommy are you still here in the room with us? Diane arrived and she came in and examined Mommy and then she called the hospice doctor to declare her deceased. Then Diane has some things she had to document and take care of, one of which was accounting for and disposing of all the medications, which she listed, counted out and then flushed down the toilet. I had to sign a paper saying that was all of it and to witness it being destroyed.
I looked at the clock and it was 1:30 a.m. and I figured, we better call the Funeral Home because its going to take them at least 45 minutes to an hour to come out to the house. I don’t want to; but realize its not going to be any easier later on, so I call and the after hours service makes arrangements with the On-call Director. I give him directions.
I go back in and sit down with Mommy again, she’s getting cooler. I keep looking around the room and up at the ceiling, still wondering if she’s still with us somehow and can see us all there. We all keep talking. Jeff is crying, saying he regrets being so far away and missing so much time with her. We’re all stunned….a combination of stunned and pain. I can’t believe I wasn’t there with her when she died. I promised to stay with her and I wasn’t there. I’ll never forget that I let her down. I promised to be there and I wasn’t when she finally let go. I’m sorry Mommy. I wish I had been there, it was only a a little more than an hour after I left. I could have stayed with her if I had only known. I should have known. I’m truly sorry for that.
11/10 – After the funeral director and his assistant arrived, my brothers, father and I excused ourselves to the dining room. We’re talking; but I can’t really remember what we’re saying. I think we’re re-hashing how fast this happened, and how hard it had been for her the last two days, how hard she had to work and that we thought we had longer with her; but it was too hard for her to keep going like that. The funeral director and his assistant finish getting Mommy ready to take her back to the Funeral home, and I watched, we all watch, as she is wheeled out on a stretcher inside a red colored rubber body bag. I can’t picture my lovely mother inside that bag. I keep trying to tell myself, its not “her” , its just her body; but that doesn’t seem to work. I can’t separate the two in my head, not yet. Its ethereal, she’s part of her body but I feel like she’s still in the room where she died…dreams I guess…wishful thinking. They leave, its snowing outside.
We talk a little more and then John and I go home to sleep a little more. In the morning, I go back up to the house, and walk around her front room. I feel dazed, tired, sad, empty…looking at the empty bed, hugging her blankets and pillows, trying to see if I can smell the lotion I used on her, just looking around. Emptiness....
I have to tell my girls so I call Chelle. She is in the first of four eight hour Saturday classes for this philosophy course she is taking and I catch her at break. She knew Mimi was close, but breaks down when I let her know. Chelle tells me she has to come home, she has to come home right away. So I reassure her,we will get her home, no matter what. Terri helps me make arrangements with a friend of the family, Teresa Jensen, who happens to be in Philadelphia that day visiting her daughter. The Jensens agree to pick Chelle up at 5:30 p.m a few blocks from her apartment. Chelle has to buy a special carrier for her cat, so she can bring her home.
Chelle explains the circumstances to her Professor and says she’ll probably have to drop the course, since she’ll miss two of the four classes due to the funeral. He is very understanding. We write to her professors, Chelle will miss one clinical lab, and two mid terms. They are all very supportive and agree to allow her to make up everything, no a problem. In fact, her Dean goes ahead and takes care of the paperwork to allow Chelle to drop the Philosophy class. There’s no way anyone in Drexel would have done that for her. I am so very appreciative of their thoughtfulness – little do they know how close Chelle and her Mimi were.
I try to call Jesi all day, all night Saturday and all morning Sunday. Finally Jesi calls me on Sunday evening after I email her to call me. Her phone had been stolen, which is why I haven’t been able to reach her. I tell her the news and she breaks down. I’m so glad she has her good friends around her, Vinny, Pablo and Joe…thank goodness. They help Jesi through Sunday night and she makes it to work and her Employer gives her the rest of the week off. I’m glad she has an employer with good benefits. Chelle and I pick Jesi up from the Binghamton bus station on Tuesday.
This is a long week. On Monday, 11/12 - my brothers, Chelle, John, Dad and I go the Funeral Directors showroom in Hamilton and pick out the casket and finalize Mommy’s arrangements. The casket is lovely. I think its something she would have really liked…a beautiful pewter blue with silver accents and Greek style columns, very tasteful and lovely, colors she loved. The inside was a very pale blue sateen with the Praying Hands embroidered on the cover. I explain to Dave Tedesco, the Funeral Director, that the artist who did the Praying Hands, Albrecht Duerr, was a relative of ours, from my mother’s side…in fact, her maiden name was Duerr…its so appropriate for her. She would have loved the Praying Hands as part of her casket.
It’s a long day and many more arrangements need to be finalized. We decide on obituaries in the Norwich Evening Sun, Sherburne MidYork Press, Sherburne News, Naples Gazette and the Poughkeepsie Journal. The calling hours will be Thursday 2-4 and 7-9 at Burgess’ in Sherburne, Friday the funeral service at 6:30 p.m. in her Church, the United Church of Christ, across the street, and then Saturday her burial in Naples at 1 pm. This was done so Jeff’s family could arrive in time for the funeral services on Friday night…with Kyle flying in from Chapel Hill in the afternoon (his school paid for this since he’s on the baseball team) and Jody driving up over two days from Kannapolis. Gerrys’ girls all made it up for the calling hours on Thursday.
Tuesday 11/13 - I talked to her friend, Red Raville, about the organ music and getting a soloist to perform Ave Maria. He selects a Mozart song for Mimi, she loves Mozart. We discuss the other music choices - “In the Garden”, “God be with You”, “Joyful, Joyful”. Red apologizes to me for not coming to see Mommy while she was sick. He said he “just couldn’t”. I think he means it would be too hard for him to see her. They had been friends and singing together for many, many years. I told him it was okay, she would definitely understand. She loved him and the chorus so much, it was okay. Later, Dad and I meet with Rev. Kelly and go over the Church service. We end up with a beautiful service. I think Mimi would really have been pleased.
Then, the girls and I go through Mom’s pictures to pick out those that we want for the services. We end up going through hundreds of family photos – some from over a century ago and some only a few months old. It is heart warming and heart rendering at the same time. I find wonderful pictures of my mother, when she was a little girl, riding her pony, and lots of posed pictures. My family liked to get professional pictures done and its such a blessing now. Mom looked so beautiful in the black and white poses, like the old time Hollywood stars, with her dark lipstick and jet black hair, very glamorous. I smile because my mother hated to have her picture taken, and she would NEVER have thought of herself as glamorous…but to me, she is and forever will be.
Weds. 11/14 – The girls help me collect the final choices for the pictures and memoribilia for the calling hours. I finalize Mommy’s clothes and jewelry and we bring all of this into the funeral home. That night, I write my eulogy to my mom. I stay up for hours working on her Prayer Card but am very happy with the final poem. I think perfect for her, a little religious but not too much, a little nature and whimsical because she would have liked that approach. I finish her eulogy, it takes me hours and I can’t stop crying. I guess all the tears and pain I had to shut down when I was caring for her is now coming out. Or maybe I just lost my best friend, the person I was closest to, my confident and dear mother, the only person who always thought I could do no wrong and who was always the first one to help me or stick up for me, to say good things about me. Maybe it was because I just lost this person whom I so admired and loved, I was trying to find the words to convey how important she was to me and in doing so, the emotions of that bond and friendship came spilling out.
Thursday 11/15 – Calling hours – We arrive an hour early so the family can spend time with Mimi before others arrive. I can’t believe how beautiful and young she looks. The funeral director and staff are artists . She looks perfect, her hair is natural and her skin looks lovely. Her make up is subtle, just right for her. She looks like an angel. One of the ladies that works there said she couldn’t believe Mommy was 73 years old and she certainly didn’t look it laying there. She truly looked like she was sleeping. Lots of friends and family visit. Two of my friends from Maryland come up – John Chanatry and Bob Sheehan – one of whom turns around and drives all the way back the same night!!! I couldn’t’ believe it, so nice and thoughtful - good friends. Also my boss is there too. John told me he thought that Steve would come. I guess I expected it too; but its still very nice for him to actually do that. He has been wonderful to me through all this -giving me the most precious gift of time, to be with my mother and take care of her when she needed me. I thank God for sending me Steve Moss when I needed him most.
It’s a long day and then the break in between calling hours, its cold and it has snowed, so we try to stay warm in and out…its okay. I just don’t want it to be over, because then it’s the funeral, and then it’s the burial, and then I will never see my mother again after that. Just like when she was in the hospital, and just like when she was back home, at that particular moment, we just didn’t want anything to change. We were trying to hold on to the moment, because we knew, once it past, that we could never go back again. There were no more, “next times”…this was it…forever. So you mentally try to hold on as long as you can. The evening calling hours come and go and then its 30 minutes after the end of the hours and the funeral staff is working around to get us wrapped up. I say goodbye to Mommy for the night and tell her I will see her again the next day.
Friday 11/16 - I go to the funeral home to exchange her jewelry choices. I want to hold on to her good diamond rings and the Lobelier necklace she received from her grandmother; but I feel bad…would she want to be buried with them? I think she would have rathered that me and the girls got them and we kept them in the family to be enjoyed and remembered. So I switch her into the necklace and earrings that I gave her when I got married. They were gifts to the bridal party and were Austrian Crystal pendants with their first name initial engraved onto the necklace. She loved to wear them, so I feel good about that. She also is wearing her Cape Cod baseball league bracelet that she had just got a few months earlier from her grandson and she loved that, wore it everywhere and loved to talk about it and her Kyle…so that was special. And then also her “Aunt” bracelet that my cousin, Lynn, gave her when she first was in the hospital. It was pretty and had beads with “Special” and “Love” on it….what more do I need to say about that.
Dave tells me we can leave her rings on if I’d like since she’ll have an open casket at the church and I agree. He’ll take them off once the service is over and will give them to me later. That way she will look very pretty at the church service and I like that idea. Dave is really special. He’s very caring and thoughtful, as are all his funeral staff. I’m very grateful and think to myself that I am very glad we chose him. My family needs that kind of special handling right now.
Friday night is sleety, snowy weather…not very nice. I worry about all the people coming from out of town. Dad’s family from Naples; but everyone makes it in fine. The service is so beautiful, I can’t describe it well enough. However, I am not able to deliver my eulogy for my mother. I feel guilty and disappointed in myself about this. I’m so weak, it makes me mad. But I think I won’t be able to get through it without crying. So who cares if you cry, everyone expects you to cry, everyone else will be crying. But I give the letter to Reverend Kelly to read for me and it goes pretty well. I would have done a much better job, because I knew what I meant when I was saying it and I’m sorry I didn’t do it. I’m sorry Mommy, but I think you understand. I felt very tired that afternoon and I was afraid I might pass out or something. I didn’t want anything to happen that would take away from your special occasion, so I deferred.
Before I know it, the service is over. Your friend, Peter Lawrence, sang Ave Maria for you and it was beautiful. You would have loved it. He was a little wavering when he first started; but he told John and I later that he was choked up from your eulogy. I guess it would be very hard to sing at a friends funeral…look at me, I couldn’t even read your eulogy.
Your husband, children, grandchildren, sister and brother in laws, neices, and nephews all said their last goodbyes to you and we left to wait for you in the lobby of the church. Gerry, Jeff, John, Kyle, Justin, Cory, Josh and Steve were all there to carry you out to the hearse. Dad and I and my girls followed you and them out, down the stairs and along the sidewalk out to Route 80, where they loaded your casket into the hearse. It was very cold and we were all shaking from the cold and our grief. We went back inside and met with your friends and family members for a while, catching up and remembering you and talking about them and what’s new in everyone’s lives.
I thanked the church ladies, your friends, who put on the refreshments and they all remembered about that time I helped you with the church luncheon and you had used all of Kevin’s beautiful table settings and baskets and grape-wreaths. It was a lovely table that you and I arranged together and they remembered it enough to mention it to me again. Family left and it was not a very nice evening, snowing. Sad, cold snowy night – how we all felt inside.
Saturday 11/17 - John, the girls and I go up and pick up Cory who is going to ride with us out to Mom’s graveside service. We leave a little earlier than everyone else and just as we are beyond the Beak and Skiff on Route 20 headed west, near Navarino, a doe jumps right in front of our truck and we slam into her full speed. Thank God we stay on the road, no one is hurt in our car or anyone around us; but our truck is smashed in and quickly we find a place to pull over and get off the road.
I call Jeff’s cell and tell them about the accident, they are about 15 minutes behind us. As I am standing by the road, my brother Gerry drives by and sees me, he backs up and pulls over. He can’t believe that we’ve had another accident in this family. I say, I don’t care as long as we didn’t flip the car and no one got hurt, I don’t care about the truck. Jeff shows up a little bit after that. Mommy’s hearse drives by us as we are all pulled over by the road. She is going to beat us to Naples….typical Mimi, she always gets “there” first.
John and I file an accident report with the local sheriff, while I stand in such as way as to hide John’s handgun that is stuck in his back pocket (unbelieveable). Then we make arrangements with our friend and car salesman, Paul Babcock, to tow our truck back to the shop where we bought it and then we all pile into Gerry’s and Jeff’s cars – 9 in one and 7 in the other (Gerry, Terry, me, Lauren, Jesi, Reva, Sarah, Chelle and Marty) and (Jeff, Jody, Dad, Cory, Justin, Kyle, John). We laugh about it….at least we do in Gerry’s car. And we make it to Naples well before the service and everything proceeds as planned. We’re lucky that day, there’s no snow at the cemetary and its cloudy but it doesn’t’ rain or snow out there. The funeral weather is pretty decent all things considered and it is again a lovely service.
The Reverend that Aunt Joan arranged does a wonderful job. He is 85 years old and going strong. We sing our favorite songs. Someone behind me leads our family traditional song, “God be with you till we Meet again”. Whoever she is, she has a lovely voice and does a wonderful job leading the group. It was always Mimi who led us as a family in song. She had the voice and the knowledge of music, so without her, we were at a loss. Afterwards, I turned around and thanked this lady and told her she did a lovely job. I don’t know who she was but she seemed to appreciate the thank you. Then Dad, Jeff and Gerry all said a few words each. Very well spoken, heart warming, and loving thoughts and memories.
My uncle Ed, Aunt Nancy and Donna all said some things. But the one thought that struck me the most of all, was when my Aunt Nancy commented on how they always viewed my mom as their sister. She said how she had never had a sister and how my mom was an only child, so they were like sisters. That was so true. It stuck me very hard how close my aunt and she were and that she was indeed like a sister to her. I never had a sister either, so it meant a lot to me to hear that.
All the immediate family got a flower from her arrangements and we all laid them one by one on her casket and then the service was over. I looked out over the valley from her graveside and thought it was a beautiful spot…special cause only our family is here, has been since the early 1900's, and beautiful because it was in the country, on the family farm surrounded by beautiful nature. Cascading hilltops in late fall. All the things that my mom really enjoyed, so it felt good she was laid to rest there, even though her grave will be two hours away from me.
Afterwards, we all have a very nice meal together at Gary’s and Donna’s house. Our typical family buffet of great food. What a nice family I have, I’m very lucky. We arrange to have my John’s sister, Michelle, meet us in Geneva to give us a ride home and my brothers and I with our children all leave as we had arrived, piled into the two cars. Then we split up in Geneva and head for home.
I took a rose from Mommy’s funeral arrangement. I have a lock of her hair. I wear her watch every day to remind me of her and for her to help keep me on track. I have some of her favorite jewelry….all treasures.
Sunday 11/18 – Jeff and family head home. Gerry’s girls go back. I take Jesi back to the bus station to head for Brooklyn. I pick up a rental car to use while my truck is getting fixed. We’re all exhausted.
Weds. 11/21 – Chelle and I head back for Philadelphia. We’ve decided to have Thanksgiving as just us girls in Brooklyn. John is going to go hunting and he goes and visits his parents. Dad is going over to Gerry and Terri’s for Thanksgiving dinner. Chelle and I go shopping for dinner when we get to Philly, sleep over and then head up to Brooklyn in the morning.
Thursday 11/22 – Its good to see Jesi again. We fix dinner together in the early afternoon and set the table so it looks pretty, with a red tableloth and red plastic utensils but the dinner actually comes out good, with turkey breast baked, candied yams, green bean casserole, cranberry sauce, mashed potatoes with gravy and pumpkin pie with whipped cream for dessert. Its really nice and we have fun together but I start to cry when I say grace because we all miss Mimi. The girls look sad but I think they are more worried about me. We have a really nice time together.
Saturday 11/24 – I finally get back home. I guess this marks the end. Everything relative to Mommy’s service is now complete and my family has returned to their lives. I don’t want to see or talk to anyone. I literally feel physical pain and I am overwhelmed with profound sadness and emptiness.
I have random memories so I decide I need to make a diary at some point. Some of the things I remember that I didn’t write about:
Making Strawberry blintzes
Getting calzones and making strawberry milkshakes
Going over to Gerry’s to look at the addition
Lobster and shrimp dinners for Mimi
Finally finding Amadeus for Mimi to watch
Listening to Mimi’s Music CDs every day, several times a day & Gerry’s comments how nice it is
Talking about Gerry’s addition and him hanging himself if he doesn't get it right and Mimi jokes about “what tree?”
Calling Jeff the Sugar Police
11/28/07- I walk by my kitchen table and really noticed all the sympathy cards standing on the table and the counter there for Mimi. I think to myself, I don’t want to take them down. I tell John, I can’t take them down, I don’t’ know when I’ll be able to take them down. He says that’s okay, whatever I need to do. But I look at them and think taking them down will take me one more step further away from her and having her still in my life. I can’t do that …I can’t even think about doing that yet. I wonder, what am I going to do if I have guests come. I’ll worry about that later.
11/29/07 – Dear Mimi, I miss you so much today, more so than yesterday for some reason. I wanted to talk to you about some things that were bothering me and I don’t have you anymore to call up or go visit. The pain of losing you meanders between a dull ache, to complete numbness to something very raw that suddenly rushes over me in overwhelming waves. I still can’t believe you are gone. I know it in my head but I can’t seem to make myself believe it. I look at your pictures and see your little face, always sweet –what a dear presence you were. How much I love you and admire you…I miss you so much. Today was just a rough day. I’m very lonely today for my friend. I hope you are okay wherever you are.
The other day John asked me whether I believe in Heaven, and I said, I really, really wanted to believe. That you were there and happy and with our loved ones and your new friends. I really want that to be true, because I want to be able to be together with you again someday. But in my heart, I honestly just don’t know. I wish I could be sure because I really want that for you and that would also be comforting for me to know. I love you and miss you, my darling. You shouldn’t be gone, you should still be here with all of us, this happened so fast. We had so much more stuff to do.
12/6/07 - Dear Mimi, I’m sure you would be very pleased with me. I went last Saturday and purchased several different fabrics and an inexpensive shirt pattern for the girls and have started to sew them. Different designs in one pattern and I know you would love the fabric I picked out , as will the girls. I went to two of our favorite stores – Feminine Touch and Joann Fabrics…took my time and looked around…although it was hard to be there without you. I enjoyed looking around and taking my time. I cut the patterns out on Sunday and cut out one of the shirts, though I’m a little unsure how to get started. I was also a little worried because I had to wind new bobbins and I don’t have you around to ask anymore. But true to you, inside your sewing carrying case, there was a plastic bag full of new bobbins and down on the bottom under where the sewing machine goes, what did I find, but the instruction manual for the machine. I chuckled because that is so you. If it weren’t there, it would be properly filed in your sewing room. I think if my girls had to try to find something of mine, they would be really up against it. I just remember you telling me that you hadn’t always been so organized, that you were messy when you were younger but I have a really hard time picturing that. I suppose when you have to be careful with every penny you earn, then you are careful to take good care of everything you have. I really admire that characteristic of yours, I always have and the older I get, the more I see how important it is.
I do try to pass your good “lessons” along to my girls, at least a little bit. I think Chelle does better with paper organization than Jesi, but Jesi is trying and coming along…baby steps. We’re all taking baby steps to do better.
I was looking for wool to make John another coat like the one you helped me make him in 2000. I found his pattern, thank you for holding on to it for me. But I couldn’t find the right wool in type or color, so I am going to order over the internet. I found a wool outlet on the web and I think I have a pretty good match. I have set up your machine in my dining room along with a bunch of your pictures so you can keep an eye on me and help me out when I get stuck.
Gerry, Terri, Dad, Sarah, Andy, John and I went to your concert Saturday night and by that I mean, Red Raville dedicated it to you, in your memory - which was very touching to all of us. It was a Christmas Concert, Faure's Requiem and other pieces and it was truly beautiful. You would have loved it. 85 people in the chorus from all the churches around the area and a 35+ piece orchestra with French horn and harp. Rosemary played the piano and Red brought in two soloists – a bass and a soprano. I hope you were watching and listening because it was so lovely and I know you would have really enjoyed singing in it. And when they sang Faure’s Requiem. I cried because they sounded like angels. It is so beautiful and ethereal....just like when you and I listened to it so many times over the last several weeks. Now, I listen to this song and others on your favorite CD over and over again, all the same songs we listened to while you were sick. It makes me so sad, but at least I still feel close to you when I do – like we’re listening to the music together once again.
I am writing a diary to you and have only finished writing up to the time when we brought you home from the hospital. I’m so tired and I haven’t been feeling well lately, so I haven’t been able to keep up writing . I just don’t want to forget any of the details and I know I will. So I’m going to try to get back to it today.
I drew some pictures dedicated to you last Sunday and Monday. Pictures of weeping angels, very emotional but they are beautiful too and seem fitting to my mood. Probably too dramatic for your taste but it is how your girls all feel. I’m going to give them to the girls for Xmas along with a locket that contains your some of your hair. I wear your watch all the time now – set to the same time as when you last wore it so its an hour too fast now due to the time change. I don’t care, I just want it to be the way it was when you had it.
I miss you Mommy. Everything seems emptier in my life, everywhere I go and everything I do is less than it was when you were still here. I have a very large hole in my heart and I know my life will never be the same without my best friend. Thank God for my husband and my daughters – they are what keep me going literally and figuratively. I’m going to get back to writing your story. I love you darling.