Lessons Learned

Here are a few of what I thought of as key lessons learned. They are just my personal opinion from my experience and are based on a very short timeframe. My mom's Glioblastoma Multiforme Stage IV tumor was so advanced, and her age and other health issues had left her in such a weakened state, there wasn't much medical intervention that could realistically help her. She was given a very short timeframe left to live (5-6 weeks) so my experiences were based on a short timeframe and everything happened so fast. Other people may have additional or different recommendations because they have a much longer timeframe to work with, which leads me to my first lesson learned:

#1. RESEARCH/GET INFORMATION - Besides talking to your doctor(s) and having them explain everything - what the diagnosis means, treatment options, prognosis, etc., DON"T forget to talk to the nurses on that floor too. They have the hands on experience of taking care of the patient and can tell you what to look out for, how to care for the person (like getting in and out of bed without hurting a weakened patient, as just one example) and they can also tell you what to expect from their experiences.

Also, there are so many sources of information on the web (this one for example on Brain Tumors is excellent: http://www.virtualtrials.com/btlinks/index.cfm?catid=22&catname=Glioblastoma%20Multiforme%20(GBM), that is a great place to research not only the medical aspects of your loved one's illness but also what others experiences have been or are currently going through.

Looking back, I think I should have taken some time when I was in the hospital, and my mom was sleeping or in tests, to use their resources if they had a computer room where I could have logged on and done more research or I could have brought my laptop with me.

I think the more information you can read, the more options you may be able to try, the better prepared you can be to help your loved one.


#2. KEEP A DIARY - As soon as possible, keep a small notepad with you at all times and keep a diary. You won't believe how quickly you will forget the details of things you think at the time you'll never forget. Write down everything - questions, names of people/titles, what you are being told re: medical information, loved one's symptoms, who came to visit. It will help you so much to go back to and use as a reference.

Nothing fancy, just notes, dates, quick details that I could piece together later.

I used a diary in the hospital to make sure I knew who was taking care of my mom, what medications she was being given and for what, what the doctors were telling us, next steps as far as getting her into released and into hospice. When she came home, I kept track of instructions from Hospice, people wanted to visit, when they were coming (so as to overload my mom), and when they vistied, if they brought stuff (for thank yous). I kept track of what we did, talked about, when she got up, went to bed, everything....and in each little detail, it was useful in its own way. If there was a question on meds, I had a record. After she passed, I could remember good talks and memories and what day they happened.

#3. MAKE LISTS/GET HELP - Especially if you are a primary caregiver or are heavily involved in taking care of your loved one. Keep your list on a calendar to track medical appointments, shopping supplies, schedules of visitors.. I found that there was so much going on all around my Mom that I wrote down everything that needed to be done and taken care of and divided up the list to my family and friends who wanted to do something. At least this way they could contribute in some way (which they desparately wanted to do) and it was a huge help to me. I couldn't do it all. So my sister in law was in charge of groceries, my dad in charge of prescription pick up, my brother in charge of mowing lawns, cleaning the house, I was in charge of her daily medication schedule and hygiene, etc. etc. Friends were asked to help with meal preparation, which sounds little but was a big item. Splitting up responsibilities as much as possible helps the individual caregivers stay on top of exactly what needs to be done in their "area" (less mixups) and every one shares the work - less stress/exhausting on just one person.

#4. REST/EAT WELL - If you are a family member and/or primary caregiver, you'll be no help if you're not well yourself so you have to know your limitations and you have to take care of your body and mind too.

For example, if you need a good nights sleep, like I did because of my heart condition, then you have to build your care plan around making sure you get your sleep. I tried to push myself beyond my limits and had a heart related incident due to excessive fatigue. That was a mistake, could have caused my family even more stress than what we were already going through, and could have taken me away from my Mom when I wanted and needed to be with her the most.

Try to make sure you build in increments of time when you can "de-stress" - watch a movie, go for walks, read a magazine - time to yourself, for yourself to keep your stress levels manageable.
And eat properly, this isn't the time for diets or forgetting to eat. Your body needs energy to keep going - eat properly -get help with meal preparation if that will positively impact. There are volunteers through many hospice programs that can help you with this area particularly - meal prep, house cleaning, company for your loved one while you take a little time to get away.

Remember the goal is to be well so you can be with your loved one as much as you need or want to be.

#5. TRUST YOUR INSTINCTS - Listen to your gut or your "inner voice". If something doesn't seem right - with your loved one, with someone involved in their care, with the medication, anything.... don't wait, investigate! People with brain tumors may not have the luxury of time. If you're not comfortable with one answer, for whatever reason, get another and another until you are. You are often the best judge of your loved one - he or she may not be able to articulate well what they are feeling or thinking. You can't be wrong for making sure everything is okay for someone you love - no question is stupid and if someone ever makes you feel that way for asking, then they need to be removed from being involved in your loved one's care. This one is important and we're too often try to be polite or think others "may know more" - but believe me, this is too important not to be strong - be polite, be business-like, but be strong.

#6. TRY NOT TO JUDGE - What I mean by this is try not to judge or react to every little word or emotion that comes out of your family's or friends' mouths or by what they do or don't do. Having someone with a brain tumor is one of the most serious, stressful life events that anyone can go through. Some people can handle it will and others may not be able to.

Most people feel helpless, sad and fearful - which makes them say and react in different ways. Some withdraw - doesn't mean they don't care, they just may not be able to face the situation. A good example of this was some dear friends of my mother, when they found out that she had a brain tumor and was home in Hospice, they did not call or visit. Afterwards, I was talking to one of the individuals and he apologized, I could tell by his voice that he felt very guilty and perhaps ashamed and I reassured him that my Mother knew of their friendship and no one thought any less of them because of it....in other words, we understood. Hopefully, he got some peace from that reassurance.

Another example is that tensions run high from the stress and fatigue of being in this situation and people can get on each others nerves. Whatever way you can try to step away or just focus on your goal of the best care for your loved one, to relieve tension, forgive others their idiosyncracies, it will only help you and your loved one to a more peaceful, less stressful time. This is easy to say and hard to do, but you can again - use your inner strength, remember your goal of your loved one and his/her care, and walk away, ignore, put aside differences. You can do it.

My brother Gerry also had a great idea/advice for our family when we found out about my mom's tumor, right at the beginning - he said, "NO PENALTY ZONE" - meaning that when my two brothers, me and my father all got together (or any one of us at any time with each other) to talk about Mom, her care, related plans - that we should all feel free to say what was on our minds, that no one should hold back on what they are thinking and feeling - that we should all hear what is important and respect that, take it into consideration as we worked together to take care of Mimi. This is great advice - the four of us were her main caregivers and we needed to work together as a team to make sure she got the best care the remainder of her life. We promised total honesty so that later on, no one felt left out of the decision making process.

#6. CHERISH THE DAY - This is what our Hospice Nurse told us (Karen Delmonico) a wonderful lady, and our LPN, Shelly Harrington - we were blessed with two of the best medical professionals to help guide us and care for Mimi. But the advice is universally true and never more important than when you and your loved one is tackling a brain tumor.

Talk, laugh, do little things together, share memories, cry, hug. In our case, it was the last weeks and days we would have together on this earth as a family, so we made special breakfasts by my brother, "Chef Gerry", and we watched old favorite movies together, and we just sat and listened to her favorite music, talked about plans, made jokes like we always did. I took pictures so I would have them of when we took Mimi out by her beautiful pond on a sunny October day.

I wish I had RECORDED her voice. The last time I have her on tape is a video I took at my older daughter's college graduation (my mom's, dad's and my alma mater too) in June 2007 and Mimi wished Jesi good luck on the tape and then, because I was standing nex to her, I picked up Mimi's voice as well when we were signing the National Anthem and Cornell's "High Above Cayuga's Waters". There have been many times I just want to hear her voice one more time and wish I had taped a conversation with her to listen to again. Something to consider.

Last in this area, our hospice caregiver also advised us to "have that last conversation with her" where we tell her we love her; thank her for all that she did for us and meant to us; apologize for anything we may need to apologize for. I think this is definitely important; but I would only caution that anyone who you let do this or you do this, to use GOOD JUDGEMENT on the "apologize" issues. I think one of the goals or motivations is to settle things before the person is no longer with you; HOWEVER, I think the person should not be talking about things just to clear his or her OWN conscience; but rather to seek forgiveness or understanding that would give BOTH people peace of mind. What I mean is you don't want to have someone tell your loved one about something that they've done and feel guilty about and the loved one is only going to be more upset by finding this out or bringing it up again - just so the person talking can feel less guilty. I think in that case, they can just say something like, "If there's anything I've done or said that has hurt or upset you, I just want to tell you that I'm truly sorry and I hope you will forgive me" RATHER than, "remember that time when I was in Milwaukee for a week supposedly on business, well, I was really having an affair...I hope you will forgive me". I don't know how you can control that as a caregiver as far as other people but I think if you can, you should make sure. Apologize, seek forgiveness and reconciliation - all are good things as long as it will help the loved one find peace.

These are just my thoughts and opinions. One person's experience and lessons learned. I'm sure my brothers and father have many other ideas as do all the other people who have walked this path before me. This is why my number one recommendation was to get as much information as you can to help you and your loved one. You are truly not alone.

I wish all who are struggling with this disease strength, peace and love.