The Wheelchair

The wheelchair is another milestone. I asked Grandpa’s brother Doug if we could have the wheelchair he had, but no longer needed. (It was used by his ailing and now deceased wife.) We–or should I say Grandpa–don’t desperately need a wheelchair now, but it was clear to me we were beginning to edge into the gray territory where sometimes a wheelchair might be useful, and on a rare occasion–like if Grandpa had to leave the house–it would be necessary. When Grandpa can’t move himself I can pick him up and move him, but, as I told Grandma, I’m not going to make a scene walking down the street carrying Grandpa. I also thought it a good idea to have the wheelchair around the house if for some reason Grandpa couldn’t get himself around while I was out of the house and only Grandma or Titi or some other person was around who couldn’t physically move Grandpa themselves.

For several weeks after Doug brought the wheelchair over it simply sat in the basement. Then I decided I had better bring it to where it was more accessible, and perhaps even start using it myself. I find it very easy and convenient to carry Grandpa around. I find it better than trying to help Grandpa walk because when Grandpa tries to walk him and I are constantly “fighting” for control. He tries to lurch one way and then another, grabs at things, and tries to throw himself forward–all things which are contrary to normal walking. I end up trying to compensate for his every jerk, lurch, and grab as I steady him, and try to propel him toward the goal he is supposed to be heading toward–which he often doesn’t know where is, or has forgotten he is heading toward it. Instead of fighting this mini-battle where I’m constantly trying to keep him from pitching forward, lurching sideways, or hanging onto the wall, I find it simpler to simply hoist him off his feet. Dangling in mid-air, he has no control and ends up like a limp doll in my hands. I can then move quickly and smoothly to wherever we’re supposed to be going. This is also simpler than using the wheelchair, which requires getting him into the wheelchair and then navigating it around a house that most certainly was not built with a wheelchair in mind.

The problem is that Grandpa isn’t comfortable with me carrying him. First, I think it scares him. Just about anything I do with him scares him. He would like the world to move veeeerrrrry slowly, and when it doesn’t he is sure something will go wrong. If he were all by himself something would go wrong, but as it is he doesn’t trust me–not entirely. He is always half sure that when I sit him down he is going to fall over, and so on. How much worse when I left him right off his feet. Part of him cannot deny that he is dangling in mid-air, held quite firmly. But another part of his mind is sure that he is about to fall. The second part of the problem is that sometimes it hurts Grandpa when I carry him. It’s not clear to me how often it hurts his back when I carry him, and how often he is afraid that his back might get hurt. In any case it all comes down to the fact that–while on a rare occasion when Grandpa’s knees give what and I carry him to safety he is exceedingly grateful to have me carry him–most of the time he’d rather do anything else but have me carry him.

So I decided it was time to give him the option of riding in the wheelchair.

Grandpa would prefer to get himself around on foot, or crawl as he does more often now, but the wheelchair is definitely the easiest and most comfortable way for him to travel. He feels safe and secure in the wheelchair, and movement requires no thought or effort on his part (something walking takes in ever increasing amounts now). The problem (from his perspective) is that he is dependent on someone else to travel in the wheelchair, it offends his dignity a bit (though he has lost much of that) and also it requires some work to get into the chair and back out.

Right now the wheelchair is only used regularly for taking him to the supper table. He doesn’t actually need the wheelchair most nights, but I think it is good to get him into the habit so that he becomes comfortable eating at the table in the wheelchair. Grandma likes it because Grandpa is restrained when the wheelchair is parked up against the table with the wheels locked. This is actually a bit of a headache for me–I’m uneasy about leaving Grandpa unsupervised in the wheelchair because I am afraid he will try to get out or move himself only to surely end in disaster.

Today the wheelchair is needed only rarely, but its appearance marks another milestone in Grandpa’s decline.

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In other health updates:

Grandma has altered her blood pressure medication. She was taking a half nitroglycerin patch and one type of pill. That became ineffective, so she upped it to a whole patch, and reverted to a previous pill she had taken before and still had around. She did all of this without consulting a doctor.

On the one hand I understand her motivation. Dealing with the doctor is a big headache and often times they don’t want to go the route you want to go. She had taken a lot of different blood pressure medications, so one might say she has some informal education on their effects. And her alterations have proved successful. So far.

But.

There is that but. She is old and forgetful of things she ought to know, not to mention that she has only informal education on blood pressure pills. In taking things into her own hands she could very well be penny-wise and pound foolish, or too clever by half. Choose your analogy.

I wonder if her need to adjust her medications came about in part by her erratic variation in the amount she took of old pill. She would vary how much of the pill she took depending on how high her blood pressure was at the time. There is a certain logic to that–and also perhaps not. I’m no expert, but I know doctors proscribe a set amount of medication for a reason. It may be true that Grandma has difficulty with wildly fluctuating blood pressure which can sometimes require a lot of medication and sometimes a little to control–but that itself isn’t good. As I understand it, blood pressure medication (at least some types) build up in your system so their full effect is not felt immediately. In other words, if you medicate yourself in the moment you’re going to end up with sling-shot effects on your blood pressure. I suspect this may have played into what caused Grandma to change her medication.

Previously, Grandma was having great success with keeping her blood pressure under better control so she cut back on her medication. Then it started fluctuating wildly, then it wouldn’t come down enough. So she changed her medication. I, however, could see those symptoms as being a result of her not having a high enough level of medication in her symptom constantly. Grandma is always look for immediate effects, first. If she takes something and it makes her blood pressure drop immediately to where she wants it, she is happy. But I think the unseen long term effects are causing some of the “mysterious” things that she finds happening to herself.

In any case, those are just my personal thoughts. I try to not play the third doctor. Next week I will be taking Grandma to a checkup with her regular doctor. Perhaps more light will be shed on the matter then.

But perhaps not.

This touches on another one of Grandma’s habits. She keeps track of her blood pressure throughout the day–if she is feeling good she will check it twice a day, if she is feeling poorly she will check it as often as she feels necessary. She takes this record in for the doctor to see–except on this official record she doesn’t write down some readings that she doesn’t like. Apparently it is okay in Grandma’s book to have a very high reading in the morning, but it is not okay to have a high reading in the middle of the day and if she does have a high reading she may (depending on some reasoning known only to her) will drop such readings from the record. She admitted this to me herself one time, when she was telling me how something she did brought her blood pressure down. “Of course,” she said, “You won’t see the high reading on my chart because I didn’t write that one down.”

I have no idea how many readings she doesn’t write down but this methodology seems rather self-delusional rather than helpful. Is the doctor going to make good recommendations based on such a history?

I don’t think Grandma really trusts her doctor. I think she uses the doctor as emotional support, a sounding board, and most importantly as a pill dispenser. I sympathize with not really trusting doctors. I suppose that puts one in a hard place when you don’t trust them, but you need one to get you the pills so you can self-doctor.

Moving on to Grandpa’s health:

Grandpa has been suffering with some mild breathing problems. To a degree they have been with him since before I have taken care of him. He stopped smoking a year (or several) before my arrival because he started having breathing problems. Once he stopped smoking the worst of the problems went away, but the persistent problems he has, I think, are a result of his 50+ years of smoking. Previously I had mentioned Grandpa’s occasional problem with wheezing and his regular hocking up of snot to the doctor, but she said, “It’s just post nasal drip. A lot of old people have trouble with it. He sounds fine.” Well, sometimes he sounds fine, and sometimes he doesn’t, but I don’t think his trouble is just post nasal drip. Granted, there probably isn’t much, if anything that can be done for him. You smoke for fifty years you’re going to have problems. But it’s not just post nasal drip.

Recently, the wheezing and hocking has become worse. About a week or so ago he was wheezing so bad when he laid down at night that it was difficult for me (and Grandpa) to sleep. If that had continued I would have recommended taking him to the doctor, but the wheezing has since passed (for the time being) and Grandpa is just constantly hocking stuff up. The recent flare-up has reminded me that lung problems will likely end up being what kills Grandpa. It clearly is the weak system in his body.

In other ailments, Grandpa has, for as long as I have lived with him, also complained about popping and stuffiness in his ears. This is one of those on and off complaints that doesn’t seem to get completely better ever, and since it doesn’t appear to be tied with any particular sickness is not something I’m inclined to take him to the doctor over, especially since he is not able to converse coherently about his ailments. That is not a good environment for doctoring.

But recently he complained that his ears had become stuffed again, and this time I noticed a great decrease in his hearing. He now seems to be hard of hearing, whereas before he could hear quite well. I’m not sure what to do about it, since he isn’t complaining of pain, fever, or any of the other symptoms one would associate with an ear infection. I see no sign of redness, swelling, or anything else out of the ordinary on the visible exterior of his ear. One possibility is that he might have wax on his eardrum, but should I take him to the doctors–with all the hassle and anxiety involved–just to get his ear cleaned?

I don’t know. If Grandpa didn’t mind going to the doctors I would take him. But when it requires a great amount of effort to get him to the doctor, and then he isn’t very helpful once you are there, I don’t really want to take him unless I’m sure some good can be done, or at least that it really needs to be looked at.

I’m sure there is something affecting his hearing–whether it is fluid inside his ear or earwax on the outside, I don’t know. But I do know that Alzheimer’s’s is also affecting his hearing as even before this recent trouble he has shown a decrease in his ability to understand what he has heard–not because he didn’t hear it but because he couldn’t interpret what he heard. So, while I know he is having problems physically hearing, I don’t know how many of the times he says “Huh?” not because he didn’t hear, but because he didn’t understand.

Whatever the multiplicity of causes, this increased difficulty in communication has led to more stress and labor as now everything may have to be repeated three times before Grandpa might understand it. One can begin to feel like a broken record, repeating, “I just said that . . .”

But there are much worse things to deal with.

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