When I was in my 20’s, I volunteered for several hospices. I didn’t specialize in dementia care, but I did spend a lot of time with individuals who had Alzheimer’s or other dementias.
My very first hospice patient was a man in his 50’s with frontotemporal dementia (FTD). I had pictured myself as a volunteer sitting by the bedside of a dying patient, perhaps chatting about life or getting them a drink of water. What I got was not better or worse, but very different.
On second thought…maybe what I got actually was better.
Neil, as I will call him, loved to watch movies. Most of the time I spent at his house was in front of the TV. Sometimes we’d watch movies on Lifetime. (I remember a particular Lifetime movie about women in prison who were being assaulted by the male guards. I bet we watched it three times.) Sometimes we’d watch a movie from his large DVD selection. His wife was kind enough to rent all the new releases for us as well. Some days we probably watched three or four movies.
People who know me well know that I’ve seen a very limited number of mainstream movies. When the Academy Awards reveal the nominees for best picture every year, I can pretty much guarantee that I’ve seen none of them. However, I’ve seen most of the major box office earners from 2004 and 2005. Pirates of the Caribbean. Mystic River. The Last Samurai. Million Dollar Baby. Eternal Sunshine of the Spotless Mind. Thanks, Neil, for that (especially the last two).
Neil didn’t really interact with me–at least not verbally. At times, he seemed unaware of the world around him, but he was certainly aware of when a movie was finished. He’d get up and start the next one. I’d ask what we would be watching next. Once in a while he’d look at me and smile. Usually it would seem like he hadn’t heard me. As the disease progressed, I was impressed he was still able to work the DVD player like a pro. Once he was in the bathroom when a movie ended and I tried to put in a new one. I messed up with DVR. He wasn’t thrilled with me.
Neil and his family had a little dog. It was a scrappy little thing…long overdue for a bath and nail trim. Neil would take it for walks. I didn’t seem welcome on the walks, and his family hadn’t given me any instructions on whether the walks were “allowed.” Yet, Neil was a big guy, and I wasn’t sure how I could stop him from walking the dog if I wanted to.
I decided to let him walk the dog but to keep an eye on him. I wasn’t sure if I was worried about Neil getting lost or perhaps the dog getting loose. Whatever my anxiety was about, I decided that my best solution was to follow them. I walked about a block behind. Not only was Neil perfectly capable of successfully walking the dog, he even remembered to bring bags to pick up dog poop.
And yet…when his high school aged kids came home from school he was usually unable to communicate with them. He stared at them blankly. One day his son walked in and he muttered, “Why don’t you go home?”
He had a habit of unbuttoning his jeans and pulling them down before headed into the bathroom. However, he somehow managed to make his own lunch everyday. (Nothing fancy…usually just a sandwich and chips.) I don’t think he remembered his wife’s name, but he could still mow the grass. In fact, I remember sitting inside his house watching a movie he had put in while looking at my hospice patient outside the window pushing the mower and then using the weed whacker. I kept thinking that volunteering for hospice wasn’t exactly what I had expected.
So much for having conversations about the meaning of life with someone wasting away on their deathbed.
Because my interaction with Neil was limited, I became an observer. I made sure he didn’t put himself in situations that were dangerous. Most of all, I made his wife feel more comfortable when she had to be away from home. I started to become fascinated with how his mind worked.
One day I felt guilty for sitting around his house watching movies, so I decided to do some cleaning. I started by scrubbing the kitchen floor. In order to do this, I had to move the trash can. Neil walked into the kitchen to throw something away. The trash can was about four feet from its usual place, but he couldn’t find it. He opened up the refrigerator and put the trash inside the crisper. Then he returned to his chair and movie-watching.
Sometimes his wife and kids would leave in the morning before I would get to the house. Most of the time, I’d arrive and he’d be sitting in his chair watching a movie. One day, I showed up and couldn’t find him. The dog was there, but he wasn’t. I did a quick sweep on the house. I found him in his bedroom. He was sitting on the edge of his bed with a roll of paper towels. He was biting off pieces of paper towel, chewing them, and then spitting them out on the floor.
I had no idea why he was doing this, but I didn’t see a reason to make him stop. I sat right beside him as he did this with the whole roll. When he was done, I picked up all the pieces off the bedroom floor and threw them away. Then he went downstairs and made a sandwich. Next he put in a DVD, and our day continued as normal.
A few days later I got a call from hospice. Neil had been moved to a nursing home. Even though he had barely acknowledged my presence in the several months I had been spending time with him, I had–for reasons I can’t articulate–decided he really liked me, so I went to visit.
On my first visit to the nursing home, it happened to be a beautiful day, so I took him outside for a walk. For the first time, I walked beside him rather than 100 feet behind him. Despite needing assistance with eating and bathing, he was still able to walk like a typical middle-aged guy. In fact, his pace was faster than mine.
He spoke more to me on this walk than he ever had before.
“I have to pee now,” he kept saying. We’d turn around and head back.
A few seconds later, he’d say, “I don’t think I have to pee.”
We’d keep walking until he’d tell me that he had to pee again. And then that he didn’t have to pee. We finally went back inside the nursing home so that he could use the bathroom. He came out of the bathroom, put an Indiana Jones DVD in his DVD player, and sat down to watch. There was a certain sense of normalcy about this that comforted me.
I visited Neil one more time after that. I didn’t know it would be the last time I saw him. He went downhill quickly after he had an infection that spread. I was out of town and couldn’t make it to his funeral. His wife sent me a copy of his obituary.
It was at this point that I learned that Neil had been a member of the school board and on the executive board for three local non-profit agencies. He played both football and baseball in college and spent time coaching youth sports. He dressed up as Santa every year at their town’s annual Christmas festival. He volunteered every summer through his church to do roofing for families in need.
I don’t know how to explain this, but in all of the time I had spent with Neil, I had never given any thought to what he was like before FTD. I could tell you it’s because I was focused on the person he was in the moment and had decided not to compare him to the person he was in the past, but that wasn’t it. That would be giving myself way too much credit. Maybe I hadn’t fully comprehended that he had been a “normal” person. Perhaps I couldn’t fathom that he had been someone who had a “regular” life.
I don’t know if I would have interacted with him any differently had I known more about him, but I feel guilty for not even wondering who he had been the first 50 years of his life. Maybe it’s because, if I ever need care, I hope those caregivers will take the time to learn about my before. It might sound egotistical, but I want them to know that I did some meaningful things throughout my life. I don’t know if I can say I owed that to Neil, but I wish I had taken the time to ask his family some questions when he was still alive. It just seems wrong that I didn’t.
I emailed with his wife a bit after his death. I remember asking if he enjoyed watching movies before he had dementia. She told me that he had not been a movie connoisseur throughout his life. In fact, he had not watched many movies with the exception of the time I had spent with him. (I told her that the same could be said for me, ironically.)
Perhaps, she suggested, movies were his way of entertaining me when he knew that he wasn’t able to be much of a conversationalist.
He just kept the movies rolling.
I don’t know if he really did it for me, but the thought makes me smile. Maybe he was doing the best he could with his limited resources to make sure his guest was having a good time.
If that’s the case, he could’ve spared me Soul Plane.