Grandpa’s trouble with bathing has followed the same trajectory as the rest of his life since Alzheimer’s began affecting him: First he needed a little help, then he needed more, and finally he needed a lot. At this point we’ve nearly reached the end of the road with his bathing situation. That is, the next step is being bed-ridden and getting a sponge bath.
In a way, this little aspect of his life gives a mini-picture of his decline. When I first came to care for Grandpa about two and a half years ago all he needed help with was getting the water the right temperature–he couldn’t get the right amount of hot and cold water himself, and particularly if it needed to be adjusted while he was in the shower he ran the risk of freezing or scalding himself if he turned the dial the wrong way. This meant that when I first arrived his dignity–and his independence–were mostly intact. Grandpa would decide it was time for him to take a shower or bath, I would draw the water, and he would undress and get in and wash himself. When he was done he would get out, dry himself off, and get dressed. However, even here he was beginning to have trouble. For, while he could get his clothes off, sometimes getting them all back on was a little more difficult. But even if he couldn’t button up his overshirt, he could at least get himself dressed to a point where he was dignified before he had to ask for help.
That was where we started. I knew that everything would be going downhill from there, and I dreaded it. Grandpa was very sensitive about both his dignity and his modesty and I could see all sorts of nightmare situations where the necessity of bathing and Grandpa’s deteriorating condition would come to a head on collision with that dignity and modesty. Two and a half years ago I looked forward with dread to the prospect of traveling that path. Now I look back, having traveled it. And I will tell you, while it wasn’t easy, we made it.
My driving concern in tackling this area of care-giving was to keep it from becoming a disaster. I didn’t want every shower to become a fight, and every need for bathing a major war. This required a deft touch–and at least the first half of this process I chronicled in some detail in the earlier pages of this blog. But here I will give a complete recap.
Grandpa fought the changes hardest in the beginning. He really didn’t want me around when he was naked but this caused all sorts of difficulties when he no longer could make it from the point of being fully dressed to undressed and in the shower. But instead of asserting the obvious, I let him work through the matter at his own pace. That is, instead of insisting, “Grandpa, you can’t do this by yourself anymore so I am going to help” I let him try to do it himself and when he became completely confused and stuck and said, “I need help!” I came to help him. He still didn’t like it, but at least he didn’t feel like my help was being forced on him. By this process we slowly worked from a situation where I was always out of the bathroom, to where I was there to help him through all the steps to getting into the shower. In the abstract Grandpa would have had a lot less “problems” if I had insisted on dictating to him, but the reality is we had a lot less fighting and less real problems because I let Grandpa go through the slow process of realizing he needed help. But it required a lot of patience and tongue biting.
The next problem was that as Grandpa grew increasingly unable to keep track of time and dates, and as it became increasingly difficult for him to wash himself, he came to dislike and avoid bathing more and more. I had to start suggesting that it was time for a shower or bath. And Grandpa began insisting, “Didn’t I just have one?”
Answer: “That was last week, Grandpa.”
“Well, I can’t be that dirty. It wasn’t that long ago.”
This was an opportune time for argument as Grandpa legitimately was intimidated by the prospect of bathing himself, and it also honestly felt like in his mind that he had just done it “yesterday” so to him it seemed like I was trying to force a shower on him every time he turned around. This could easily spiral into an argument of “I don’t need a bath” and “Yes, you do.” At first I managed to avoid this by playing a game of good cop and bad cop. I was the good cop, and Grandma was unwittingly the bad cop. When Grandpa needed to wash I would suggest that he take a shower. Grandpa would then indignantly deny that he needed one. Grandma would then get impatient and say, “Yes you do. Go take a shower!” Grandpa would then bluster and fume at Grandma, and I would tell him we would give him a shower, “Just to make Grandma happy.” He would rail about how unfair and demanding Grandma was, and I would go on about how we needed to keep her happy, and he would kind of grumbling agree with that, so it all became a matter of keeping Grandma happy, instead of an argument over whether he really needed a bath or not.
But that was always a dicey and stressful situation for me, because there was no guarantee that he would always be amenable to that sort of persuasion. Grandpa only had to decide he was sick of taking a bath “every day” (in his mind) to make Grandma happy and then I would be in real trouble. So I realized we needed a more fixed schedule which Grandpa would find appeasing and which I could use to persuade him. As a result, Saturday became “bath day.” It was only on Saturday when Grandpa had to take a bath or shower. Thus when he would say, “Didn’t I just take a bath?” I could say, “No, Grandpa, that was last Saturday. You only take a bath on Saturday, remember?” Then he would have to grudgingly concede that it was only mandated for Saturdays, and if it was indeed Saturday then it must be time for his bath. I discovered the way I could get him to come the most agreeably was to say, “It’s Saturday, Grandpa. That means it’s bath day. Do you want to take your shower now?” And he would always say, “It is? I don’t want to take it now. Let’s wait until later.” And I would say, “Okay, we’ll do it in a little while.” Then Grandpa would sit there about a minute, thinking about the prospect of a shower hanging over him and about a minute and a half later he would say, “Aaah, we might as well do it now and get it over with.”
It’s all psychology, folks.
However, as well as this particular trick worked for a time, I knew it wasn’t a permanent solution. As it became increasingly unpleasant and difficult for Grandpa to bathe I realized there would eventually come a time that whenever asked–no matter what the stipulations or circumstances–Grandpa would simply refuse to take a bath or shower because he would find the prospect simply overwhelming. Through my time of caring for Grandpa I have always tried to give him as much dignity of choice as possible. It is one of the fundamental things that makes us feel respected and valued when some asks our opinion and abides by our wishes. But the very ability to make decisions (and certainly rational decisions) is the very thing Alzheimer’s destroys, so in caring for Grandpa I’ve had to maintain the delicate balance of giving him as much ability to make a decision as possible and yet being prepared to gracefully slide into the “no questions asked” mode. It was with great relief when I finally made the complete switch. Knowing when to make the switch–when Grandpa wouldn’t be terribly offended and hurt–was a matter of gut instinct. It came to the point where I realized being asked whether he was ready for his shower only agitated Grandpa and he was forgetful enough to the point where I could just take him to the shower as it was of course what we were going to do and the fact that we hadn’t discussed it could slip past Grandpa’s mind entirely.
At first I found a very “devious” method of getting him into the shower. Back when he was still using the toilet some of the time, sometime shortly after breakfast he would need to go pee (the morning coffee coming through). I would take him to the bathroom and set him on the toilet. As he was using the toilet I would start up the shower and get things ready. Then when he was ready to get off the toilet, I would help him get up, get undressed, and get into the shower. Grandpa never thought to question it. All the cues were there: He was in the bathroom, the shower water was running, he was in a partial state of undress having gone to the bathroom–so of course we finish getting undressed and climb into the shower.
It’s all psychology, folks.
About the time Grandpa was no longer able to travel to the bathroom was the time he started using the wheelchair. We no longer had the cover of the pee trip to the bathroom, but I found at that point it was no longer needed. I would get the shower all running, and when Grandpa finished eating breakfast I would wheel him to the bathroom door, help him up, and start getting him undressed. Any slight hesitation on his part would be met with “We’re doing your shower. Here’s your washcloth. Hop in.” At which point there was nothing to do but hop in.
This ended any difficulty with arguments about taking a bath or shower. But it wasn’t the end of the actual physical difficulties in taking a shower.
Fairly early on (maybe at the very beginning, I can’t remember clearly) I started washing Grandpa’s hair. It was one of the first things he forgot to clean for himself–his head being something he wouldn’t see–and he was readily agreeable to me washing his hair. Washing other parts of him were a different matter entirely, and this started to become an issue as he began to forget to washing increasingly more of his body. When you can’t remember what you have washed, or what you need to wash, or even what you’re supposed to be washing–well, it’s very hard to wash. As the became a problem at first I helped Grandpa through the process verbally. “Okay, now wash your chest. Don’t forget to wash . . .” and so on. While this worked for a time, it was a rapidly failing solution. Quickly following the problem of forgetting what you have washed or need to wash is the problem of not understanding what someone is telling you to wash. You’ve hit the end of this method when the instruction, “Okay, Grandpa, now it’s time to wash your legs,” is met with the response of, “Yep, I’m working on that,” while he vigorously scrubs the side of the tub. There comes the time when if something is going to be done, you have to do it yourself.
From simply washing Grandpa’s hair I moved to also washing his back. It was an easy progression as it can be hard to wash one’s own back, so I say, “Here, let me get your back for you,” and there doesn’t really seem to be any reason to object. Then, once I got Grandpa accustomed to my hands on his back, I simply began progressing to wash the rest of him as the natural course of things–and Grandpa gave no objection. Except when it came to the matter of washing his genitals. That was the one catch–that was the point where we couldn’t just ease out of his modesty and dignity. I pretty well knew that Grandpa would have to be practically comatose before he would willingly agree to someone else washing his genitals and events have proved me right.
It is a miserable situation for us both. Grandpa is no longer able to do it for himself, he doesn’t want me to do it for him, and I don’t want to do it for him. But it must be done. And he can’t do it. So I must do it. And it is terribly, exceedingly, awkward. Invariably, the reaction is something along the lines of “What the HELL are you doing?”
What kind of answer can you give to that? “Um . . . cleaning you,” seems completely inadequate. In fact, there isn’t an satisfactory explanation that can be given because so long as Grandpa has a functioning brain cell in his body he will know he doesn’t need someone else cleaning that. There is no explanation, no excuse, that can get around that. So . . . my only solution is to pick my battles. Some weeks I just let that particular aspect slide if I get the sense he is particularly feisty, or inclined to get angry. Otherwise, my general methodology is (a) Do it fast, and (b) distract him.
My typical distraction method is to say, “Okay, Grandpa, it’s time for you to wash your face.” Then, while he is washing his face I quick wash the other end and by the time he realizes what is going on and can get angry I’m all done. Thus a confrontation is (just) avoided. It isn’t fun, but I can just squeak past having a big issue develop over it.
And so I have finally got to the point where I can do all of the washing for Grandpa.
The other issue was getting Grandpa into and out of the tub.
When I first began helping Grandpa I encouraged him to take a bath rather than a shower because I figured it was easier to work with him, and easier on him because he wouldn’t have to stand. But it became clear that sitting down in the bottom of the tub was very uncomfortable and growing increasingly difficult for Grandpa. So we switched to having him stand for a shower. But as he became increasingly weak, having him stand for the full length of a shower started to become unfeasible. So we got a shower chair so he could sit while taking a shower. That was the solution of choice for a long time. But even that solution wouldn’t last forever.
As Grandpa has grown increasingly weaker, it has become ever more difficult for him to step over the side of the tub into the shower. Every weekend it was evident that this was a developing problem and that eventually he wasn’t going to be able to do it. Then, several weeks ago, that day arrived. I got Grandpa up to the edge of the tub and said, “Okay, now step in,” and he couldn’t do it. Physically it was difficult–mentally, he couldn’t do it. He couldn’t understand what I wanted him to do. He held his hands under the water and started washing his face–all while standing on the bathroom floor.
I cajoled. I instructed. I prompted. Nothing unstuck his mind. It wasn’t that I couldn’t physically make him get into the tub. I could. I am physically strong enough that I could practically haul him up by the scruff of his neck and deposit him in the tub. But the fact that I am capable of winning any fight is beside the point. My entire goal is to avoid bath time from becoming World War III–no matter if I am capable of winning World War III every time. And if I am going to physically force Grandpa to do something, it is going to be war, no matter how “gently” I force him.
For that day there was nothing to do except as gently as possible lift one foot and set in inside the tub and then propel him forward and lift his other foot and put it in the tub–all the while explaining what we were doing. Of course Grandpa didn’t understand–about all he could figure out is that I was making him do something. Then I tried to get him to turn around and sit down in the shower chair, and that didn’t work either. He grabbed hold of the shower chair to “make it work” and wouldn’t let go. Getting him to turn around and sit down would have involved prying his fingers off the chair and forcing him to turn around–something I knew would quickly become a wrestling match. So I cut my losses. I had him in the shower–that was good enough. I quickly cleaned him while he stood there, holding onto the shower chair and shouting at the top of his lungs.
We survived, but that little incident made it clear to me it was time to altar the tub setup. The tub had a set of sliding glass shower doors–something that works fine if your are a healthy adult who can bath yourself, but they have been constant trouble for me in taking care of Grandpa. They make it so I can only access half of the tub at a time, which means I’m constantly playing a game of sliding doors to get at Grandpa. With the doors installed I cannot have full and uninhibited access to Grandpa or the shower chair. In short, getting Grandpa in and out of the tub was always an awkward manhandling experience since we’re always dealing with a doorway that only one of us can fit through at a time.
The shower doors had to go. In their place I hung a shower curtain, which I could push completely out of my way. This has made things so much easier for me. Now, instead of laboriously trying to coach Grandpa to step into the tub I can simply scoop him up in my arms and set him down on the shower seat. When I am done showering him I can push the curtain out of the way and start drying him off while he is still resting on the shower seat. And instead of making him step over the side of the tub to get out, I can simply lift his legs and rotate them over the side of the tub so he can stand up directly on the bathroom floor. If need be, I could simply pick him up and carry him away without him needing to stand at all. None of this was possible with the shower doors still installed. I knew there was a reason I hated them.
So, we are now at the point where I am, or nearly am, doing everything for Grandpa. I now can undress Grandpa, pick him up and put him in the shower, wash him, dry him, and pick him up and take him out. Right now he still has the strength to stand while I dress him, but if need be I could also dress him while he was seated. Only when he becomes bed-ridden and unable to sit up any longer will I no longer be able to give him a shower any more.
Having overcome all of these obstacles gives me a certain peace of mind. Having avoided bathing becoming a major and constant source of contention is a great relief for me.