Dear Readers, I have not posted much in 2018 and 2019 and I would like to share the reason for that with you. I’ve been struggling with a lack of energy and motivation around writing for this blog for the past year because of my brother’s illness and death.
My brother Michael, ten years older than me and a strong force in my life, struggled for the last several years of his life with a rare form of Muscular Dystrophy. In April 2018, it became clear that Michael was in need of supportive care far beyond what could be given at home. After a brief hospitalization for a fall, he was moved to a nursing home where he would spend the last 8 months of his life. He was only 67 years old at the time he was admitted and only 68 when he died on December 28, 2018.
Michael was confined to a wheelchair, unable to walk anymore and completely dependent on aides, family, and friends for the most basic of his daily needs. He couldn’t get himself a cup of water, couldn’t walk into a bathroom or use a bathroom without assistance, and couldn’t get in and out of bed by himself. These are the little daily life acts we take for granted every moment of our existence.
I was Michael’s “Saturday Girl” in the last 8 months of his life. I traveled the 2 hours each way to Massachusetts to his nursing home on Saturdays to arrive in time to help him with lunch and visit for the afternoon. Some days he could feed himself, some days he couldn’t. Even though I’ve written about visiting someone in a nursing home and sitting vigil in this blog, it was hard to take my knowledge and use it when spending time with my big brother. I had some serious lessons to learn.
For what it is worth, here are some of the things I came to understand from my time with Michael and our last 8 months together on those Saturdays in a nursing home dementia unit.
10 Goals and Several Hard Life Lessons
My primary goal was to be Michael’s advocate throughout this experience. I focused on what it must be like for him, day in and day out, to be in this space at this level of disability. The following ideas are small things, but they can mean a great deal to the person who can’t walk or take care of their own needs. And I want to think they meant something to Michael. There were also many hard lessons about myself that I “got” to learn along the way. I want to share both the goals and the hard lessons with you in the hope that they may help you.
- Toileting: I made sure Michael was immediately in line for toileting after lunch and was changed into clean clothes (breakfast and lunch could be messy events). And I made sure he was toileted before I left or as I was leaving. Sometimes he needed to be toileted every 20 minutes, and accidents were common and embarrassed him. So this became one simple goal at each visit: making sure he was toileted and in clean clothing after lunch and at the end of my visit.
- Fresh Air: Michael could not just go sit out on the patio whenever he wanted to, someone had to be with him. When the weather allowed, we spent time on the patio getting fresh air, either in the sun with Michael’s shirt off so he could soak up some Vitamin D, or in the shade when it was hotter. He loved being outdoors and being outside in all weather was a big part of his daily life (running, golf, taping/drywalling in a home under construction, walking the dog three times a day).
- Honoring Habits: I made a point of seeking out quiet space for us after lunch to either watch the Golf Channel because it was Saturday afternoon. On a normal Saturday, Michael was either playing golf or watching the Golf channel at home. I wanted him to have one thing that sort of stayed the same in terms of his routine. Golf is also great because he could nod off, wake up 10 minutes later and be able to follow the match and leader board. I thanked God many times for the Golf Channel!
- Food: Food became Michael’s world, especially dessert and bacon. Some lunches started and ended with dessert only. He ordered bacon whenever he could. Michael’s loving and superhero wife Lynne watched their diets closely and only served turkey bacon in their home. Michael looked at me one day while eating bacon and said “all these years, I could have been eating real bacon.” I told him he always got turkey bacon and he looked at me over his reading glasses and said: “that’s turkey, NOT bacon.” He loved my baking so I started to bring him his favorites, cranberry bread and banana bread – no nuts! I always brought an extra loaf for the nursing staff and left it in their kitchen. Coke floats (Coke and vanilla ice cream) were also a big hit in hot weather. In the summer I made a lobster roll for him just like our Mom would make – he loved it. Food is personal, it evokes memories and food that is meaningful can make a person’s day better.
- Movies: I found out quickly that movies were Michael’s mental escape. After lunch, on Saturdays and in the evenings, the aides would load up a DVD and show a movie in the main recreational room. Because Michael was at high risk of falling, he had to be in that room all day unless one of us was there with him. The aides often let Michael pick the movie as he was one of the more lucid residents of the ward and knew the movie list well. I went through my DVDs and brought down several movies to add to the collection, like Humphrey Bogart in “We’re No Angels” which is a Christmas staple in our home.
- Laughter: Find some humor, no matter how hard it may hide. On one of my first Saturday visits, Michael was being lifted from his bed (he was 6′ tall and about 180lbs) by a mechanical device that had him seated in a harness about 4 feet off the floor. They were moving him from his bed to a standing “people mover” where he could hold on and move on something that looked like a Segway. As he was floating through the air, I said: “Michael, you’re ziplining!” He gave me a dour look and said, “this isn’t ziplining.” When he was standing on the people mover, I said: “Michael, that’s just like a Segway, how cool is that?” He looked at me again and said: “this isn’t a Segway, Paul.” *Michael often called me Paul, he had been hoping for a little brother. I then asked him if I was his least annoying little sister (with 2 aides as my witnesses) and he thought about that and turned to his aides and said: “Actually, that statement is true, she is my least annoying little sister.” I’ve been waiting for that designation for over 50 years! We all laughed a lot in those moments.
- Read Outloud: We read books as much as possible. Michael loved books. He read fiction and nonfiction: he was a voracious reader averaging 10 or more books a week. He could tell you what books were on the New York Times bestsellers list each week, in order, from memory. Lucky for him he married a talented librarian who could keep him stocked in mysteries and historical novels. In the last months of Michael’s life, we read poetry we had loved as children, and mysteries by authors like Archer Mayor, the amazing Vermont mystery writer, and Reine Airth, a British novelist. One of my last visits with Michael, I was reading Airth’s novel “A Death In Winter,” which starts its story in Paris in the days just before the Nazi occupation reached the city. One of the characters is describing the way in which French people shrug to avoid giving an answer. In the story, the character’s right shoulder comes up a bit, his face tilts to the right and down, his ear is tilted toward his shoulder, he closes his eyes, his face is placid for a few moments and then straightens up. When I finished the description of the French “shrug” Michael said, “I have one of those you know.” And then my brother proceeded to show me his French “shrug.” It was so perfectly executed that our French Canadian grandparents and ancestors would have been very proud! Michael said it had been a staple of his repertoire in business dealings for decades. He smiled thinking about that little shrug.
- Patience and Acceptance: In our family, patience, and acceptance were not virtues we were gifted at birth nor taught. Everything was within our control if we just worked hard enough. Patience with other people was expected of us, but none was available for ourselves. On a few Saturdays I arrived to find Michael in deep sleep. He would have nights when he didn’t sleep at all, then after eating breakfast, he’d sleep for the entire day. I would sit with him, read to him from our local paper, or just be quiet and make sure he was comfortable. My fear was he would wake up and think I hadn’t been there. Reality check: he didn’t remember I was when he had been awake. I had to meet whatever point he was at each Saturday: whether he was upset, angry, peaceful, happy, or asleep. The hardest goals I had to set and work at were patience with myself and acceptance of where we were at with his disease process. Overlying all of this was the reality that there was no treatment for this disease, only management of symptoms. We had to watch Michael, an outstanding athlete, and genius level intellect, deteriorate physically and mentally over a period of 10 years time.
- Fixer Complex: I was raised to be a “fixer” – every family has one or more of these. People whose role/job within the family is to “fix” every problem that comes along. We often grow up to be professional “fixers” like plumbers, electricians, EMTs, social workers, lawyers, doctors, nurses, political staffers. I’m a fixer and I’ve accepted that. But I had a very hard time confronting the fact that I could not fix my brother or his need to be in a nursing home. I found myself trying to “fix” his world for the hours I was with him and I couldn’t even do that very well. I was stuffing pillows between him and the side of his wheelchair to brace him so he was more upright, or questioning him on what he wanted or needed. Always trying to figure out how to make him more comfortable. Finally, I realized there was just no fixing any of this. The reality was I had to accept that I was completely powerless and all I could do for Michael was to be present with him. Once I accepted that false expectation I had imposed on myself, our visits became easier for both of us. After all, if I’m “fixing” a situation then I’m not really emotionally engaged in what is happening. That has always been my “safe space” in hard family situations, to go into default “fixer” mode. I get to think about that automatic default of “fixer” mode a lot these days.
- Honoring Michael’s Life: Michael died three days after Christmas. The day after Christmas, he was diagnosed with pneumonia and, given his wasted physical body and suppressed immune system, he made the choice to not treat his pneumonia. He was transferred to a hospital closer to home, given medications to keep him comfortable and he died 2 days later peacefully and pain-free. Because I was sick with an infection, I couldn’t sit vigil with Michael or attend the Celebration of Life for Michael. It was painful to not be able to gather with my family, to not be there to grieve as a family. But I thought about how I could join the celebration in spirit and made a plan for that day. Michael and our Dad taught me how to use basic tools, how to maintain a house, how to paint. So I ordered a new kitchen island on wheels and a new, bigger laundry hamper to arrive the day before the gathering. On Saturday, January 5, 2019, while the celebration of Michael’s life was taking place, I pulled out the red toolbox Michael bought me for Christmas one year and got to work. Michael had filled this red (my favorite color) toolbox with miscellaneous tools he thought I might need when he was clearing out our Dad’s home workshop. Both of my Celebration of Michael’s Life projects were completed without personal injury and, so far, they haven’t fallen apart! For the foreseeable future, each Saturday will be spent on a project using skills Michael and our Dad taught me. Today I’ll be painting built-in bookcases.