Before Dad started getting sick, I had heard of dementia and Alzheimer's. I knew it was something that happened to some people when they got old, but not all people. Older friends have told me that back in the day it was called, "hardening of the arteries," when someone had dementia. So, long ago, it was already happening.
There are many possible reasons the number of people with Alzheimer's and other forms of dementia are rising. Recent studies cite possible dietary or environmental factors, genetics, or some combination of all three and more. The more concrete reason may be that more people than ever are living much longer lives. But for whatever reason, many seniors today are living with some form of dementia.
When my family and I first started talking about possible living scenarios for Mom and Dad, it occurred to me that I hardly saw any people "out there," in my everyday, with dementia. In very recent memory, there was a woman who was brought to church each Sunday by a friend, but she lived in assisted living facility. If there are so many people with dementia, where were they? Over time, it became clear that many people with dementia and Alzheimer's enter assisted living or memory care facilities, at various stages of the disease. At some point their condition became too much for either they themselves or their caregivers to keep them at home. By bringing Mom and Dad into our home we are essentially pushing that point off as far as possible. But how far off is that point?
This week there are new weird things that Dad has started doing. On Monday, Mom peeled a banana for Dad and left it with him while she and I started cleaning up the kitchen. Less than 10 minutes later I checked on him, to find he had not only eaten the banana, but had proceeded to eat the peel. On Friday Mom peeled a clementine for him, which he ate, before moving on to the peels that were piled next to his hand. Tonight was the topper. We went out to a Chinese restaurant for dinner, where Mike showed the kids how to fold the paper wrapper of their chopsticks into a little stand. Soon there were 7 little paper stands, each with a pair of chopsticks perched on top. Dad took his chopsticks, then picked up the paper stand. Mom took it away and said, "wait no! You can't eat that, that's not food!" She put his chopsticks to the side. Mike said, "He wasn't really going to eat that, was he?" Just as I was about to answer, "I don't think so," he reached out and grabbed the paper stand and popped it into his mouth. Mom was just quick enough to snatch it out of his mouth before he started to chew it up.
Mike asked when my siblings were planning to visit. When I told him it would be about 2 months from now, he was concerned that at the rate Dad is declining his condition might be a shock, not only to them but to their kids. The kids might freak out at his inappropriate behaviors. Very present in his mind is, "is this how they will remember their grandfather? Is this the way DAD would want his grandkids to remember him?" I couldn't answer that question, because we never had these conversations with Dad. We never talked with him about his mortality, or about his aging, and the possibility that his end would be anything but quick.
This is when I started to wonder if the reason why I don't see many people with dementia out in the world is because they are for the most part, hidden away. Is it because they themselves knew what was to come, and didn't want their increasingly inappropriate behaviors to be exposed to the world, defining them in their final years? Did they feel it was too degrading that one day their spouse, or even their child was going to be feeding them, bathing them, changing their diaper, and wiping their butt? Did they fear too much the burden it was going to be on their loved ones, and think to themselves, "it's the better choice for me to enter a care facility, so my family doesn't have to give up a chunk of their lives taking care of me 24/7." Or was it us, their family, friends, acquaintances, that found their behaviors too disturbing, too sad, too frustrating, too frightening, just too much to handle seeing all day, every day? Did we find it too jarring in the context of the normal world, normal people? Is there something, anything, or nothing redeeming about continuing to live life as one's cognitive abilities dwindle down to nothing? Or does it just come down to not being able to care for someone 24/7 because of very practical reasons? I'm asking because I don't know the answers to these questions either.
As we got ready to leave the restaurant, I helped Dad into his jacket and zipped it up, then beckoned him to start moving forward. Then I had to keep pushing his hand away from the table, and pushing the detritus from our dinner towards the center because he wanted to grab stuff. As we finally got clear of the table and started walking down the aisle, I saw a gentlemen sitting near the end of the bar, watching Dad. It was the first time I noticed a stranger watching him, and I wondered if I was wrong in my assumptions about what might be going through his head. And I thought, this is only the beginning, if it even is the beginning.
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