Month: October 2007

I wish I was in Carrighfergus
Only for nights in Ballygrant
I would swim over the deepest ocean,
The deepest ocean to be by your side.
But the sea is wide and I can’t swim over
And neither have I wings to fly
If I could find me a handsome boatsman
To carry me over to my love and die

My childhood days bring back sad reflections
Of happy times I spent so long ago,
My boyhood friends and my own relations
Have all passed on now like melting snow.
But I’ll spend my days in endless roaming,
Soft is the grass, my bed is free.
Ah, to be back now in Carrighfergus,
On that long road down to the sea.

Chorus:
But the sea is wide and I can’t swim over
And neither have I wings to fly
If I could find me a handsome boatsman
To carry me over to my love and die

But in Kilkenny, it is reported,
On marble stones there, as black as ink.
With gold and silver I did transport her
But I’ll say no more now ’til I get a drink.
For I’m drunk today, but then I’m seldom sober
A handsome rover from town to town
Ah, but I am sick now, my days are over
Come all you young men and lay me down.

Chorus.

****
That is an old Irish song called Carrighfergus.

I think of Carrighfergus as Grandpa’s song. You need to be able to read the song figuratively to understand why. In the Bible wisdom and understanding is personified as a woman, and that is key to understanding the song my way. And the being drunk, is, of course, only figurative for the state the person finds themselves in.

I don’t know if it shows artistic sensibility to reinterpret an old Irish song into a poetic lament on Alzheimer’s’s, but in my mind I did it. And to me the lyrics are terribly, terribly, sad in a way they never were before. For someone slowly dying from Alzheimer’s’s the gulf between them and their former wisdom and intelligence is vast. The sea is wide, and they can’t get over.

For the record, I think someone told me that Grandpa wanted the song Will The Circle Be Unbroken at his funeral (I think the full lyrics to that are here). So, whatever songs I have applied to him, that is the one he would take for himself.

As a foot note: I got the Carrighfergus lyrics posted above from here. I first heard a version of it sung by Loreena McKennit from her album Elemental. However, she sings a shortened version, and when I looked for the lyrics I found the longer version posted above, and thought it more fitting. The lyrics to the Loreena McKennitt version are here. I don’t know how many variants there are–as is common with old traditional songs, there seems to be many. I found at least one more minor variant here.

I have taken a more active role in Grandpa’s bathing routine. Before Alzheimer’s’s began debilitating him, he had his own grooming schedule. After Alzheimer’s’s started debilitating him, he had an erratic and faltering grooming schedule. Basically, he took a shower whenever he thought he needed one, and shaved when he felt he really ought. It has now progressed to the point where it not only can Grandpa not draw his own bathing water but his sense of time (and perhaps his inclination) has become such that he could go weeks without bathing. Of course if it struck him he could bath two days in a row and then go three weeks without a bath, but the fact remains that he wasn’t cognizant of his own needs. On top of that Grandma was no longer convinced that when he cleaned himself he was actually cleaning himself enough.

So I stepped in to take active control of Grandpa’s bathing schedule. This was a point I had concern about at crises of conflict, as Grandpa was modest and preferred to handle his own bathing. But as it turned out it hasn’t been an issue. The modesty was before, and Grandpa’s incapacity has progressed to the point that now he has pretty much (but not entirely) dropped it. It helps that I haven’t just barged in and taken over everything. I am taking it slow, only helping him with some things, getting him accustomed to the presence of help, and the consistent schedule set by someone other than himself.

The schedule is a bath or shower once a week on the weekend. Usually it is Saturday, but sometimes I make an exception (and do it on Sunday). I try to get it done before lunch, because that is when Grandpa has the most energy, and is mentally most together. I allow him the option of a shower or bath but he has gravitated toward showers because he finds them easier. They are easier for him–there is no sitting down–but it is harder for me to avoid getting soaked while helping him.

When he takes a bath I wash his back and his hair and will prompt him on washing himself. If he showers I wash his hair, and direct the shower head to make sure he gets thoroughly wet, and prompt him as needed. When you have to help someone else you start looking at things in a new way. This house was badly designed for elderly people, and those in need of assistance. The bathrooms especially so. There is only one teeny bathroom with a tub right off the main hall. The bathroom is far too small to get a wheelchair in the room, and the hall is so narrow that when Grandpa is riding in the wheelchair and I park outside the door I can only just squeeze past to get from behind to in front where I can help him get out. Then the bathroom doorway is narrow so often Grandpa or I smash into some part of the frame when the two of us are trying to go through at the same time. Then the tub has the sliding stall doors which means only one side of the tub can be accessed from the outside at one time–a real problem if you’re trying to help someone. Further, the tub is right up against the toilet and the toilet makes outside access to the end of the tub with all the faucets awkward from the outside. After struggling with this setup multiple times you begin to think a real genius must have designed the setup. The reality is that it was designed by someone who wasn’t thinking about caring for elderly or incapacitated people.

I have come to realize that the days in which Grandpa can use the bathroom are numbered. When he really needs to use the wheelchair and it is no longer a convenience and helpful item, then stopping outside the bathroom and hauling him the rest of the way by hand to the toilet will be too much. At that time, or maybe even sooner, Grandpa will no longer be brought to the toilet–the toilet will be brought to him in the form of a commode. And, when Grandpa moves from needing some help with his bathing to needing a lot of help–then we won’t be able to use the tub either. Already it is a little bit dicey watching him step into and out of the tub. For someone with deteriorating strength and balance stepping over the side of something is an uncertain procedure. Further, trying to do all the work of bathing someone else when half of the tub is blocked by a sliding partition is madness. With additional reflection I realize that when Grandpa becomes more incapacitated hauling him in and out of the tub will be a lot of work for me, and increasingly painful and dangerous for him. So when Grandpa needs more than some help we’re moving from baths and showers to sponge baths. Of course I realized it would come to that when he became bed-ridden, but now I see the sponge bathing may begin a lot earlier than that.

Grandpa is very sensitive to water temperature. I guess we all are, but he prefers his water significantly cooler than I would. Sometimes it seems to me the water is lukewarm edging on cool when he declares that it is finally not too hot. I always have him check the water before he gets in, and water checking is a procedure I must watch with care. He has a hard time locating the water he is supposed to check. Often he will feel the sink over, and give some declaration about how cold it is, and he has a tendency to want to lift the lid of the toilet and plunge his hand in the bowl. One time recently when I asked him to check the water to make sure it was okay he solemnly lifted his foot and placed it against the side of the sliding door and held it there for awhile before announcing that he thought it felt okay.

Once I have him in the tub there is the problem–as we’re all familiar with–that the water doesn’t always stay the same temperature. For most of us this problem provokes little more than a muttered comment and a quick adjustment of the temperature. Since Grandpa no longer knows how to adjust the water he is terrified of it getting too cold or too hot. It’s not uncommon to hear during bath time “Aaaahhhhh! It’s getting too hot! It’s getting too hot!” Or, “Aaauugghh! It’s freezing! It’s freezing!” Usually the temperature hasn’t changed to the extreme that his comment would seem to imply–but he’s sure it will keep getting hotter until he is fried to a crisp, or keep getting colder until he is frozen to death.

After he is finished in the tub I make sure he gets out safely and give him a towel to dry off. After he has done as good a job as he can manage I finish drying him off. Then I slather him down with baby lotion, because he has a terrible problem with dry skin. I also soak his scalp with baby oil, because he has dry scalp as well. When I’m done he’s all greased up and smells like a baby. My hands do too. I recently realized that I need to switch him over to baby shampoo and baby body wash as well. The shampoo because he’s having more difficulty keeping it out of his eyes, and the body wash because normal soap is too harsh for someone with very dry skin.

When that is all done I get him dressed, come is hair, and then get him a cup of coffee and something to eat. When I first started the bathing schedule he complained a lot about taking the bath/shower because he was always sure the last time we had done it was yesterday. Now that the habit has become more ingrained–and I’ve persistently insisted that we’re only doing it every weekend, not every day–he complies more readily. I think it is a lot of work for him–mentally and physically–but I do think he feels better after we’re done.

In somewhat better news, Grandpa seems to have recovered (some or all) from his hearing problem. He didn’t make any announcement to that effect, but I noticed some time this week that I no longer had to raise my voice and lean close for him to hear me–his hearing ability seems to have gone back to what it was before he complained of something plugging up his ears. I am very glad of this, because I was very torn over whether to take him to the doctors, and was feeling if his condition didn’t improve that I probably should. Since he appears to have recovered to his former state I’m assuming it was just fluid in his inner ear canal, like always.

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.

****

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.