I’ll start by saying that I don’t really think that with Grandpa and his illness that there is a “edge”–some clear cut breaking point where before and after he is starkly different. The only edge like that would be a real physical edge . . . the edge of the stairs which he goes tumbling down and breaks his bones. Short of that type of edge, there aren’t really edges in his decline.
But it does feel as if there will be, or there are. It feels like one day everything will change and instead of things getting slowly worse some vital cog will come loose and life will be completely altered. I guess perhaps this feeling springs in part from an inability to imagine how some things will go slowly. How can you slowly forget how to walk? How can you slowly forget how to fee yourself? It seems as if those are the type of things you either have or you don’t. So you begin to imagine that one day Grandpa is going to wake up and not remember how to do them, and then we’ll be beyond that “edge.”
When I reflect on what Grandpa is losing what strikes me right now is how much more he has to lose. I don’t first gasp at how much he has lost, but how much more he has to lose–one inch at a time. When you are there helping him through it, that is what it feels like: one inch at a time. Every bit of his ability is extracted from him like one slowly removed tooth. One begins to look ahead and see how many more slow painful inches Grandpa has to endure.
For all of the troubles Grandpa daily endures and which I have chronicled here, I am struck by how–with all that he has already lost–I can still largely interact with him like a normal human being. He is often a very confused, but he is still one largely cognizant that he is sick and failing and the better half of his mind is trying to deal with it. The better half of his mind reaches out to me and together we try to deal with it.
I guess the very big thing I see him still having–and which I think is going to be very sorrowful to watch him lose–is his self awareness. He still knows that he is a husband, a father, a grandfather, and even a great-grandfather. He may not be able to name off all of his twenty-five grand-children or four great-grandchildren, but he can still recall when he is told and re-reminded. He is still capable of recognizing his failures, of being sorrowful over them, and ashamed. He is still capable of knowing that others are tending him, making sacrifices for him, and he is still capable of clearly expressing his thanks for service rendered.
Yes, it is painful to watch him struggle to speak, and see him knowing that he cannot speak clearly. Yes, it is painful for every day to have Grandpa call me into the bathroom and practically beg me to show him how to not pee all over himself and all over the bathroom. Yes, it is painful to watch Grandpa mutter and curse at himself as he tries to make his feet work properly when they will no longer walk him across the room.
It is very painful, but in a sense the pain now is a reminder of how much he still has. So long as we still have this pain it means that Grandpa isn’t a vegetable sitting on the couch staring blankly ahead and drooling. The pain we daily face now is a reminder of how far away we are from that end, and how much further we have to go, one inch at a time.
Grandpa no longer being able to use the bathroom always felt like one of those edges . . . a point beyond which things would feel so forever different. Now that we’ve progressed to somewhere around the halfway point through that it no longer seems quite so striking. Now my thoughts turn to Grandpa and his ability to walk. What is it going to be like to slowly become unable to walk? What should (and can) I do to help?
His failing ability to walk is raising its head like an ugly specter. On his good days he is still good, but on the bad days it is bad, and he is getting worse. He seems to have the worst trouble when he is trying to go somewhere in particular and do something–his perennial trouble being sitting down on the couch. He can often get to within a few steps on the couch and then he looks at the couch as he prepares to sit–and then his ability to walk deserts him entirely. It is as if his feet become nailed to the floor and he will struggle ineffectively for several minutes, sometimes eventually coming unstuck so he can totter the last few steps. Other times he simply lunges forward and grabs the couch with his hands. It is getting bad enough now that I sometimes have had to help him. At a hundred and thirty-two pounds he is light enough that I could easily pick him up and bodily carry him, but that is less than ideal, both because of his bad lower back, and like all old people he loathes to have his feet off the ground. I have found the best solution so far is to wrap one of his arms firmly around my neck and–since with his stoop I stand taller–when I stand I pick him up every so slightly, taking some of his weight off his feet and giving him the very clear sensation that he is being very firmly supported. Simply taking his hand or locking arms with him to give a little support is not anywhere near enough. When his legs stop obeying him properly he becomes afraid–afraid of falling and not being able to move–and it takes much more than a little bit of encouragement to get him through.
He fails regularly now, and in such circumstances it is a great mercy that we have wall-to-wall carpeting. The cause for his falls are various, all centered around the fact that his sense of balance and coordination has severely deteriorated. He can try to bend over and pick up a bit of garbage and not make it, try to sit down on the couch and not make it, or simply lose all sense of balance. I have seen him standing perfectly still and suddenly almost pitch over backward like a felled tree. Short of chaining him to a bed or chair, there is little I can do to eliminate this risk. The effects of his Alzheimer’s’s makes him very restless which gives him the need to move about, even when he is exhausted.
Even Grandma has noticed his increasing trouble on this front and so we picked up a walker from a family member. Unfortunately, I don’t think it is going to help at all. Grandpa very easily (intuitively, in fact) grasps how to use a cane. Not so the walker. He has to think about how to use the walker, and that requirement pretty well renders it useless when he most needs to use it. His innate tendency is to drag it along behind him, and when he does push it properly in front of him the act of maneuvering it through doorways is an impossibility.
Further, the walker can’t even help Grandpa when he is at his worst. One evening not too long ago he decided to practice using it. That evening he was having particular trouble walking, so I guess maybe he thought to see if he could limber himself up on the walker. It didn’t work. He would push the walker along in front of him, and after about six steps his brain would get out of gear and his feet would stop moving. It was a brain freeze, and the fact that he had a walker didn’t help. He was stuck standing there, and about all that would happen is he would continue to slowly slide the walker forward until he was stretched out, his feet rooted in place and leaning on the walker far in front of him. I could get him unstuck by physically bending his knee for him and moving one foot–and then he would walk another six paces or so, only for his brain to seize up again. If he struggled mightily with his own body he could eventually (as if in a desperate gasp) finally get his own feet unstuck–but the walker added no more support or help than Granpa already got from leaning on the walls and his cane.
It has become quite clear to me that the walker isn’t going to be any help at all with Grandpa’s real problem. And I don’t know what we’re going to do as his trouble only increases. I know it is far far better for him to move about on his own feet, and when he stops it will be a big hit against his health–physically, mentally, and emotionally. But on his very worst days it is so painful to watch him struggling and fighting with his own body trying to make it remember how to walk that I wish we just had a wheelchair in which he would be content to sit and I would push him wherever he wanted to go. I guess sometimes I just wish he would stop fighting and rest, so I wouldn’t have to watch him struggle.
But, as I have already observed, when he does cease to struggle it will only be a sign of how much further away he has fallen.
Unrelated slightly absurd incident from today:
Late this afternoon Grandpa started to get undressed in the living room. “Do you want to take a shower?” I asked.
“Yes,” he said.
So I got the shower water to the right temperature, (had him test it several times to make sure it was right for him,) then got him a washcloth and a towel. I made sure he got completely undressed, then told him the shower was all ready, and call if he needed anything more. He said okay, and I shut the door left him in the bathroom to tend to himself.
I came back a few minutes later and could tell by the sound coming through the bathroom door that the shower stall door was still wide open. I supposed he had probably simply forget to close the stall door when he climbed in. I opened the bathroom door to swipe out his old diaper and replaced it with a fresh one for him to put on. At least, I tried too. Grandpa was standing in front of the bathroom door. He had the sink faucet going full blast along with the shower, and was lathering up his hair vigorously at the sink. I’m not entirely sure what soap he was using. It could have been the liquid hand soap.
I took this in stride as Grandpa will often decide to take a sponge bath at the sink (not sure if this is something he did often growing up and as an adult, but it seems to hearken back to something in his past). It seems he had either initially intended to only take a sponge bath and had only gone along with me with the shower at my prompting, or else after I had left the bathroom the first time he had laid eyes on the sink and immediately forgot about his plans for a true shower and had settled for a sponge bath instead.
Whatever the case, it was something of a scene to open the door to great billows of steam and find Grandpa standing in front of the sinking, lathering up his hair for all he was worth.
I don’t think he ever did end up using the shower. A little later I checked back in and at that point he had moved on from his hair and was cleaning the sink for all he was worth. So I squeezed into the bathroom and shut off the shower. A little later he came out of the bathroom and I helped him get dressed.