In January we moved my mom’s parents into the local village so that we could better care for them. In particular, so we could better help care for Grandpa. I say “we” because I speak of my collective family–I, myself, do not have much to do with the situation on a day-to-day basis because I am caring for Grandma Purdy. But from my place I hear the gathering stories of Grandpa O’Keefe. And, like a gathering storm with its rumbling thunder, the stories have a too familiar ring to them.
You see, Grandpa O’Keefe has Alzheimer’s, just like Grandpa Purdy did. For me, it’s like watching the same story all over again–except different in the details. When I step back from the details it’s still the same tune, the same theme threaded through–poignant, sad, and tinged with fear. And I watch and I listen and all the while I know how this song will finally end, and what happens before the curtain falls.
There are broad patterns you can typically see in the progression of Alzheimer’s, but the disease affects every individual uniquely. Not only is the details of the progression unique in each case, but so also how the personality reacts, and adapts. In personality, Grandpa Purdy and Grandpa O’Keefe faced the disease from opposite ends of the spectrum. Grandpa Purdy had a chronic problem with poor self-esteem all his life and so in Alzheimer’s he was apt to accept his incompetence more readily because he had always thought poorly of himself. Grandpa O’Keefe has a chronic problem with self-importance, and cannot tolerate the idea that he might be wrong or incapable so he has an intransigent mulishness against correction or any suggestion of need for help. Neither extreme is a healthy way to live life, but an over-valuing of one’s only capabilities is particularly harrowing when combined with the degrading acid of Alzheimer’s. Grandpa O’Keefe may have always measured his own skills a bit more highly then reality, but at this point his self-perception has become completely separated from reality. As a man who has been forever accustomed to considering himself unquestionably right, the task of managing him, and his delusions, is both delicate and difficult.
Grandpa Purdy was in general good health when Alzheimer’s started to take him. Grandpa O’Keefe is not. He is diabetic, with a raft of complications–eye problems, skin problems, and (most severely) peripheral neuropathy, which at this point means he has lost practically all feeling in his hands and feet. His sense of balance, and tactile awareness, are very poor. When Grandma and Grandpa O’Keefe first moved into their new house there were several episodes where Grandpa “locked” himself out. He swore that the door had somehow managed to lock itself. But the door was not truly locked–he simply was not able to open it.
In my judgment the Alzheimer’s came later in Grandpa O’Keefe’s life and has progressed more slowly. But, at the same time, Grandpa O’Keefe does not have the same level of physical good health to battle the disease. Grandpa Purdy had a physical vitality that allowed him to happily crawl all over the house long after his ability to walk had left him. Grandpa O’Keefe won’t be able to do that, and so though his brain has held on to the ability to walk longer when he final loses it the decline will be more precipitous. Grandpa Purdy had dexterity in his hands so he could continue to clumsily feed himself long into the process of losing the ability to use dinner utensils. Grandpa O’Keefe has nearly no feeling in his hands already so when he begins to forget how to feed himself the decline will be precipitous. Grandpa Purdy was lean and light and agile and took many falls without serious injury. Grandpa O’Keefe is overweight and stiff and his first fall–when it comes–may well be his last.
Alzheimer’s takes each of its victims in different ways, and though Grandpa O’Keefe has held the tide longer I think his decline will be swift when it reaches the tipping point.
Until then, Grandpa O’Keefe fights on, trying to be the big man he once was. Grandpa Purdy gave up driving when the car became too difficult for him to use. It was an ability Grandpa Purdy didn’t want to give up, but when it deserted him life went on without any appreciable change. For Grandpa O’Keefe his ability to drive is an integral party of his identity as a self-made man, a conquerer of the world, and to lose that is like death itself in his eyes. He should not have been driving years ago, but he has fought tooth and nail against the process of losing his license. About a year ago Grandma O’Keefe took away his keys, but Grandpa waited for the chance to prove he was still the man he once was. This spring, he found his chance.
Grandma O’Keefe needed a vacation and now that she and Grandpa lived right nearby my family set up a schedule of people keeping an eye on Grandpa which allowed her to fly out to Hawaii to spend ten days with my uncle. In the meantime Grandpa thought to prove to the world that he was still a capable and independent man. The crisis came when my brother Lachlan was baby-sitting and Grandpa found some car keys and declared that he was going to drive himself to Syracuse. Lachlan tried to dissuade Grandpa with reason (to no avail) but declined to use physical force. He did call 911, but the operator said that if Grandpa still had his license (and he did, because it wasn’t legally taken from it) then there was nothing that could be legally done to stop him since legally he was still considered competent to drive. And so Lachlan watched as Grandpa boldly drove out of sight.
The journey to Syracuse is about one and a half hours. Seven hours later, after dark, the police called. Grandpa had finally had an accident. It was only minor damage to the car, and had involved no other vehicle. In those seven hours he had never made it to Syracuse, and was no where near Syracuse when he had his accident. In retrospect, it was the best ending we could have asked for. Nobody was hurt, and the police started the process of formally revoking Grandpa’s license.
Grandpa’s reaction to the incident was telling. Publicly, he was filled with equal parts bluster and delusion. He argued that the mistakes were ones anyone would make, the problems were not really problems, and everything would have been fine if the painted better lines on the road. Next time he would take a GPS and have no difficulty. But later, privately, he admitted to one of my sisters how miserable and scared he had been.
That one event is a picture for Grandpa fighting his Alzheimer’s. He still wants to be the big man, and lord of his own domain. So he talks bluster and delusions to the people around him, and he is trying very hard to talk bluster and delusion to the whispering fears in his own mind. He asks to be told what Alzheimer’s feels like because he says doesn’t feel like he has anything. He feels perfectly fine, he says. And he gets a book out of the library on Alzheimer’s and says he is going to stop it (even though he will never read the book). He says he will ride a bike around town to make himself stronger–but he can barely get around with a walker. You never forget how to ride a bicycle he says. Is he telling us, or trying to convince himself?
Both, really. There is a part of him, deep down, which whispers the truth about what he is losing. Some days it is louder than others, but they are words he doesn’t want to hear, so he tells himself a story about how he will win this battle, and how it is not so bad as it seems. And some days he believes his own stories more than others. He is trying with all his might to hold onto the life he once hand, but it is slipping through his numb fingers, one piece at a time.
Back home from her vactaion, Grandma watched through the window as he tried to figure out how to get on the bike he would ride around the village. He walked round the bike, trying to determine some way of mounting it when he didn’t have the ability to lift his foot more than a few inches off the ground. Finally he tried sliding the back wheel between his legs, but of course that didn’t work. So, days later, he asked me to build him a stool so he could climb on the bike. He told me a story about how he would have a carrying basket on the bike and he would use the stool to get on the bike and then put the stool in the carrying basket and ride all over town. Then he will get healthy and strong and be independent. He didn’t say all those things, but that is the story he is telling himself. Never mind that it is nonsensical and meaningless. If you don’t have the ability to lift your feet more than a few inches off the ground how are you going to climb onto a stool–much less stay on the stool when you need a walker to keep your balance. And how is this stool going to help you get your leg over the seat of the bike? And how are you going to put the stool in your bike basket when you can’t bend over? And how are you going to balance the bike when you can bearly balance yourself?
I don’t ask him those things. It’s pointless and cruel. He will never ride a bike again, and I think some voice deep, deep, inside him has told him the same thing. But he told himself, “You never forget how to ride a bike.”
And he wants to believe that.
He wants to believe many things. He told Grandma that he cooked his own suppers while she was gone. He wants to believe that, but he didn’t do it. He mistook a bottle of soap for cooking oil, and thought an outlet with a plug looked like a lady with her arms stretched out.
He still thinks he is a computer genius, but he doesn’t even remember how to turn the computer on. He imagines he is still an ace at playing cards, but often enough he plays the wrong suit, and now he is starting to play cards from previous hands. It is no real game now. His grandchildren just play along.
He tells endless repetitive (sometimes incoherent) stories about his past glory days to any willing listeners (or not).
He liked to pretend that he was a free man when Grandma was away on vacation, but really he couldn’t wait for her to be back, and admitted to my sister that he worried about the possibility of life without Grandma.
The floor of the house got “soft” and in great alarm he insisted on my father coming down and evaluating the situation. He was very afraid that when Grandma came home she would fall through the floor. How do you tell a man that the floor is just fine–the problem is in his own body, his own mind?
That is a story Grandpa doesn’t want to hear. He will tell you one instead. This story is about how he needs someone to give him a map of his property dimensions because he is going to mow his own lawn this summer. He doesn’t want people doing so much for him. Mowing your own lawn is a sure sign that you are still a real man and lord of your own domain.
Oh, and he’ll do your taxes for you, because he is an expert at doing taxes.
Everyone with Alzheimer’s unravels in their own way, and Grandpa is surely unraveling. He can’t stop it no matter how hard he tries. The end is coming, and much sooner than he thinks. I am not very near to this drama, and I do not have the carefully built rapport with Grandpa which might allow me to speak to him (in deeds as much as words) about what I have seen, and what I know, about what is coming upon him. He has asked what Alzheimer’s feels like–and I could tell him. It feels like fear. It feels like confusion. It feels like helplessness. In the end, most of all, it feels like being alone. And I would try to tell him (more in the deeds of caring and helping than in words) that the bravest thing he can do is face the reality of what, deep down, he knows he is losing. What does Alzheimer’s feel like? It feels like failure. And you can either hide from it, and pretend it isn’t there, or you can face it. That is your choice.
But I can’t say that to him. Not in such simple words, because it can’t be understood that way. And I’m not there to show him, or guide him, in deeds of facing the scary battle of losing everything.
All I can do is watch, and see the shades of my past and the shadow of his future.
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