My mom’s doctor explained Alzheimer’s to me in a different way. She said it is like slowly “falling asleep.” She said you know how you sort of fall asleep and take a nap? And when you wake up you are groggy? That grogginess takes quite a while to shake off, and you slowly wake up. With Alzheimer’s, the grogginess remains. And each day the grogginess is more pronounced, until you eventually do not wake up. Rather sobering.
We had a terrible day yesterday with my mom. It is the worst day she and I have had, since this journey of her living with us began. In fact, it took me back to our kitchen in Huntington Park, California, on Grand Avenue, when I was 13 years old. In one instant, we were transported back to that exact moment. The problem was, yesterday, I think that is where my mom truly was. Huntington Park, kitchen, in 1970. Only I was in 2018, 61 years old and standing in my bathroom with an 88-year-old mom who was totally off in Alzheimer’s World, in Wasilla, Alaska. And that is pretty much what Alzheimer’s is all about. Not being in the same place, at the same time.
I got a reprieve from my oldest son. His wife and I went to a gardening class and he kept my mom with him and his kids. She loved it and was totally wonderful, and exhausted from the great-grandkids loving on her. So I went and got a haircut. (Funnily enough, no one has noticed, even though I cut off more than 2″…lol…another blog post!) But as I was getting my haircut, the stylist told me her mom was an Alzheimer’s nurse. She grew up around dementia and Alzheimer’s her entire life. And she was so aware, and so understanding. She said something that made me stop and think. She said, “We are who we are because of the journey we have taken and the memories we have made. When we lose our memories, it really affects who we are and how we behave.” Wow.
Mom rarely mentions her dead husband (Memory Eternal, Frank) or her stepchildren by marriage. She rarely remembers my childhood, my brother or father, or her life before 1953. When she meets people and they ask where she moved to Alaska from, her answer is “New Zealand,” even though she left NZ in 1953 and moved to California. She does not know much about her parents, either. She cannot recall her aunts, uncles, or cousins. Nor much of what towns she lived in. But she always talks about her maternal grandparents and the times at their house, and most especially her grandfather. She has started deeply sleeping, a lot of her days away, complete with snoring and body twitching. Sigh. When called upon, she is quite social. But she mostly sits and stares. She is not interested in dressing. She is not interested in showering – yesterday’s debacle was about cleansing. Her teeth. She was obsessed with brushing her teeth. It was amazing how obsessed she was at finding her toothpaste and brushing her teeth. Somehow I think she knew on some level that she had not dressed nor brushed her teeth in the past two days. LOL. But she still would not shower. It has now been 5 days since she has bathed. She insists she is just not doing it. (Another sigh). And in the moments when she wakes up, she is overly animated, trying to brush off the fact the past 1/2 hour was spent snoring. Her comments are so out of context. It is amazing. The brain and this disease operate together so interestingly. And her medications have become critical – and not up for debate. She has to take them. And take them when they are due – lesson learned. Again.
One of the things I have come to grips with, is that Alzheimer’s is a degenerative, neurological disease. It is degenerative. You do not come back from this. Once you step down into that next level, there is no regaining lost ground. That grogginess is stronger. And more pervasive. And I do believe she has journeyed down another stage into Alzheimer’s. It affects how your entire body functions. It is not just about memory loss – it affects all neurological functions. And that is how Alzheimer’s can kill you, whereas dementia will not. It is sobering. It causes you to re-think how you re-act to this disease when your loved one is fully enveloped by it. It is not taking the bait for those arguments, or allowing the disease to run your days. It is keeping sane and on pace with an insane disease. Also recognizing it for what it is – a degenerative disease. And it is ugly. And it is here. And it is working its way through my mom’s entire body. And there is nothing I can do about it, except to keep loving her, even more-so because of it.