Month: March 2007

Below is a link to a NYT article on people trying to live with Alzheimer’s. The observations in the article line up with my own. If you read the article you will see there is one man profiled who still retains his short term memory but is losing his motor skill rapidly. Then there is a lady who retains her motor skills better but has completely lost her short term memory. Grandpa isn’t so much to one extreme or the other, but those cases reflect how Alzheimer’s progresses differently for every individual.

I would say Grandpa has lost probably short term memory and motor skills in equal measure. He hasn’t lost either entirely, but both are getting progessively worse.

Here is the link: NYT Article on Alzheimer’s

How hard is it? Some people think taking care of Grandpa (and Grandma) is a particularly difficult task. Maybe even an overwhelming task unlike that which normal people must face.

I don’t view my situation that way. I have always thought my situation bears a very close resemblance to being a mom, and being the mother in a house. My present responsibilities requires the same skills and grace of motherhood, and perhaps less than is required of many mothers, since I have only Grandpa to tend and many mothers can have at least three little children in need of having their butts wiped, their noses blown, their dinner prepared, tucked into bed, watched out for, questions answered, and everything else in the long litany of things required by little kids. From little infant on up, for every one of their needs there is an eerily corresponding one for Grandpa.

Which, of course, is not to say it is all easy. Any mother can testify that it isn’t all easy. But it is life, it is what must be done, and it is what mother’s have done for generations. To do it rightly does require a large gift of grace, patience, and peace . . . but all are equal in need of that.

It can be a wearying job, as all mother’s can attest. It is a full time job, with very little time for oneself. There is always supper to be made, or else breakfast to be fetched, lunch to be made, or innumerable snacks (or cups of coffee for my charge). There are dishes to be washed, the kitchen to be cleaned, grocery lists to be made, groceries to be bought, diapers to be changed, clothes to be washed. Yes, the tasks of motherhood are many, and mine are no greater and no more difficult.

So, I never think anyone should consider my job any greater or more difficult. That is not to disparage motherhood, (quite the contrary!) but rather to put things in the right perspective. It is very humbling, and proper, to realize one’s tasks are not unique, but rather the very things that some labor at all their adult lives. Rather than becoming fixated on the difficult things that I must do, instead I can in this particular unique time in my life reflect on what mothers do and what sacrifices their calling requires of them and honor them for it, recognizing a little more clearly the price they willingly pay as servants and mothers of a family for many more years than will ever be required of me.

It is a good experience for me, I think. Obviously, I will never fully experience all the trials of motherhood. But as it is unlikely that I will spend most of my life in the role of primary care-giver that a mother occupies, it is good for a time to, as it were, “walk a mile in those shoes” and come to have a little more understanding, compassion, and respect for the burdens and trials, and strength required for motherhood. I’ll never be a mother (and let’s face it, I don’t have enough womanly qualities to even come close) but for a time I have the opportunity to be like Mom, and perhaps learn something from that service.

****

Unrelated random scene attached:

As I’ve said before, the combination of Grandpa being unable to find the right words and his confusion make for some very bizarre conversation.

Tuesday night was a bad night. Grandpa woke up about 1:30 AM to go to the bathroom but when he came back to bed he didn’t promptly fall back to sleep like he normally does. I lay in my bed and listened to him sigh and stir and move about on his bed and act restless. I had a feeling I knew what was coming, and sure enough a little late I heard the sound of the dresser drawer opening.

I flicked on my bedside light. “You want something, Grandpa?” I asked.

“Yeah, I guess so. Something to put on.”

“What?” I looked at him, and he was still properly dressed for going to bed.

“You know, something to split your palm and cover your modesty.”

“Are you cold?” I asked.

“No, I’m not cold,” he said.

“Well,” I said, “the only thing you don’t have on is a pair of pants, and you don’t need to wear pants to bed. I don’t understand what you want to put on.”

“Never mind,” he said, somewhat impatiently. “You’ll have to ask your mother about that. I mean, your wife.”

So I turned the beside light back off. I wasn’t feeling really agreeable that night. If I’m feeling particularly long suffering I will turn my beside light on and sit up in bed and keep him company, watching him as he does various things and try to offer him a sense of help and support even while I occasionally prompt him in the direction of bed. That night I didn’t feel like it, so I put a T-shirt over my eyes and decided I’d just lay there until he finally tired of looking for the something that he didn’t even know what was.

I think he sensed my answer was a little bit more abrupt and final than I usually am because as he continued to fiddle around with things in the dark he said a little later, “Well, I guess Arlie doesn’t want to have anything to do with this.” (Arlan has lived with them much longer, so unless Grandpa is thinking really hard I’m covered by the catch-all “that-boy” name of Arlie).

I told him, “Grandpa, if you can tell me what you want I’ll be glad to help you.” But I still didn’t sit up in bed and turn the light back on and keep him company in his hunt to fix the unknown problem. So I got to listen to him turn restlessly in bed, sighing. Then sit up and itch his head very loudly. Then begin to fiddle around with and fumble with things on top of the dresser. Then knock my clock onto the floor. (I turn the light back on and pick that up, then turn the light back off.) Finally Grandpa gets out of bed and turns the bedroom light on. Checks the room out. Finally turns the light out and leaves the room. Goes to the bathroom, checks the hall. Comes back to the bedroom. Turns on the main bedroom light again, comes over to his bed, then goes back to turn the light off. Then goes back and gets into bed.

He repeats the entire agitated procedure maybe three or four times. Generally it consists of itching the itches that need itching, trying to set the bedroom to right, finding glasses, going to the bathroom, trying to determine if anything needs to be set right or fixed in the bathroom, then going (probably) to check the time on the stove clock in the kitchen and then coming back to the bedroom and trying to get everything right for bed again. Since he has no defined goal, no end he is trying to reach except peace in his mind, and no logical method I can help him along, it is pretty much an infinity loop until he is either mentally or physically exhausted and simply goes back to bed. Unless you are going to authoritatively order Grandpa to stop and go to bed (which I don’t) you simply have to wait it out.

So I lay in bed and waited, keeping track of his activities by sound, until somewhere around the four circuit he finally stopped in the middle of the bedroom and said, “Well, do you think you could help me get all these things set to right?”

“Sure,” I said, getting the cue and sitting up. “I’d do anything if you’ll lay back down and go to sleep.” So I removed the bathroom towel that had made it in onto his bed (neatly folded back up) and the box of tissues that had also migrated to his bed, straightened out various other sundry disorder, approximately straightened out his covers and folded them back. Then he willing got into bed and I covered him up. It was not about 2:30 AM. Grandpa got up to use the bathroom several more times that night, but he went back to bed promptly after them all.

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.

Snippet 1:

Saturday night Grandpa had another bedroom-bathroom disaster. I somehow was exhuasted enough, or he was quiet enough, that I slept through the unfolding disaster and only woke up to face the results.

I first started waking up when Grandpa sat down on my bed to lay back down. Dragged into a half-awake state by the sensation of someone almost sitting on me, it felt like too much work at that moment to explain to Grandpa that he was on the wrong bed. So I lay there waiting for him to realize he had made a mistake. He seemed to realize something was wrong with the bed–a funny lump or something–because he kept trying to re-situate himself. Finally, seeing as he wasn’t going to quickly realize his mistake and get up, I made some groggy comment about how he would have more room in his own bed.

Grandpa made some comment, (probably about his mistake,) laughed, and got up and moved to his bed. When I am awake enough, I always try to tuck Grandpa in for him because while it makes me a little more uncomfortable to get out of my nice bed I actually suffer more disturbance if I must lay listening to him wrestle and mutter at his blankets for ten minutes as he tries to cover himself. However, that night I was still only half away so I lay listening to him mutter and struggle with his blanket. I reached over with one hand and turned on my bed light, hoping that would be help enough, but the light shone in his eyes and he asked me to turn it back off.

In the darkness once more, I heard him say, “Ahhh, it’s all wet.”

Okay . . . time to check on him, I thought. Groggily, I sat up in bed and swung my feet over the side and set them on the linoleum covered floor.

. . . And set them right into a cold puddle of urine. That will wake you up quickly. Eeeyaaah, I think, (or something like it,) and reach over to turn on the light, wishing I had something handy to wipe off my wet foot. A good look at the room shows it has become a disaster area. The sheet is half off Grandpa’s bed, and his blanket is half on the floor and various items are scattered about on the floor. A quick check confirms that his blanket is only wet where it has fallen on the wet floor–Grandpa only peed all over the floor, not all over his bed. One small mercy.

Next I try to discover the extent of the damage on the floor. Grandpa’ winter hat is lying on the floor, and his glasses are wallowing in another puddle of urine over by the commode. After picking my way about I manage to determine that it seems all the pee has been contained on the linoleum in the bedroom–he never made it out into the hall to track his trail of wetness to the bathroom. Time to move into damage cleanup.

I wadded up the slightly wet blanket with the other wet clothing items and chucked them into the corner. I took one of my spare blankets and gave it to Grandpa. I put him back to bed, cleaned up the floor, and cleaned up his glasses.

I’ve now decided to keep a roll of paper towels permanently in the bedroom. I don’t want to have to walk all the way to the kitchen when I need something desperately for cleanup.

Snippet 2:

Sometimes Grandpa is completely unaware of his difficulties, but I am still a little surprised by the other times when he shows such clear self-awareness of his problems. Yesterday afternoon Grandpa was trying to communicate with me and was having the usual difficulty . . . he would use the wrong words, or sputter and stutter and be unable to get any words out. Finally he stopped and said, “I don’t know how anyone can understand what I say.”

He knew he was sitting there and speaking nonsense. What it must be like to open your mouth and know that all that comes out is babbling foolishness that means nothing–to see yourself so clearly and be unable to do anything about it.

Snippet 3:

Last night was a tough night. It is actually easier for me if Grandpa has an accident than if he has a hard time sleeping. If he has an accident I can put him back to bed, quickly clean him up, and get back to bed myself. If he gets agitated in the middle of the night I can only wait until he exhausts himself again. Thus it was last night. He initially woke me, and got up, to go to the bathroom. For nearly the next hour he was up and down, in and out of the room, turning the light on and off . . . all trying to take care of various things . . . or find something that needed taking care of. Since he was simply agitated . . . he didn’t know what he wanted or need, and if he did latch on to something and I resolved that problem he simply moved on to another, I had to ride it out until he finally tired himself and went back to bed.

These type of situations are what take on a nightmarish hue to me. When there is a midnight mess that needs to be cleaned up I’m in control of the situation and while it might not be fun I can at least clean it up in my time and go back to bed. But when Grandpa is simply agitated and five minutes runs into ten, and ten into fifteen and fifteen into half an hour . . . you start wondering how much of the night this is going to take, and imagining being up all night watching Grandpa go about trying to set things right. It’s a situation where I’m not in control . . . I can “fix” the situation, and I can’t ignore it. I can try to prod Grandpa in the direction of bed, but mostly I must simply sit there and wait for events to run there course.

Now, onto the main story:

This past Thursday I took Grandma and Grandpa to their “normal” doctor for their regular checkups.

Grandpa’s appointment was a non-event. He had gained five pounds from the last time I took him in, and since he is underweight that is a good thing (and make me feel pleased that at least I am feeding him well). His blood pressure was back down to only 7 points above what the doctor wanted, which wasn’t worth doing anything about, she said. And that was that. Grandpa was hale and hearty . . . except for the fact that his mind is falling apart.

Which is the same thing they said last time I took him in three or four months ago. Grandpa refuses to take pills for a long period of time, so there is really nothing the doctors can do for him. Last time I took him in they gave him a battery of tests to see how advanced his Alzheimer’s was–I thought the test was interesting. It showed that, at that time, his “time sense” was completely shot (year, time, age, etc) but that his sense of place was still intact. There were other aspects of the test as well, and I was interested to see how well he did on them again, now three months later. However, the nurse told Grandma that she wasn’t going to test Grandpa anymore. He was only going to get worse, and there was nothing they could do for him. It is probably for the best . . . the testing only embarrassed Grandpa and did nothing for him, and there is no point to make him suffer it just so I can track his slide into oblivion.

And really, for the same reason it is pointless to take Grandpa to the doctors. It is a source of stress, agitation, and embarrassment for him, and they can do nothing for him. He body is, more or less, hale and hearty and they can do nothing for his mind. Why take him to the doctors so they can check his weight and blood pressure?

Even Grandma is agreeing with me now, so this was probably the last of Grandpa and the doctors for a long while. Grandma, on the other hand . . . there are a lot more doctors in her future.