Alzheimer’s: “I don’t know what’s wrong with me”

My friend Carl is saying, “I don’t know what’s wrong with me.”  And I don’t know what to say back to him – that’ll be any help.

It’s not a good situation – not encouraging at all – for either of us.

Wednesday

We went to a MoveOn event.

We’d gone to the organizing meeting, a week or so earlier.  And Carl had enjoyed himself quite a lot.  Afterward, he could remember several things about the meeting, which I found encouraging.

At the actual event, Carl didn’t understand what was going on.  The heat and humidity weren’t enough to distress me, but Carl quickly got confused and disoriented.  He couldn’t focus on holding his sign flat, so people could read it.  He couldn’t focus on holding it toward the oncoming traffic.

I expect that part of the problem was the unfamiliarity of the situation – an experience wildly different from his usual routine.  But the heat and humidity didn’t help.

Eventually, he said, “I can’t do this.”  In my occasional “that was not very helpful” fashion, I got irritated.  We left.

Then Carl was hugely upset that he’d ruined it for me.  He wanted to know what it was he’d done wrong, so he could not do it again.  I kept trying to reassure him that he hadn’t done anything wrong.  I knew that explaining wouldn’t help.  I said, “We tried something, and it didn’t work for us.”  But into the evening, he kept getting more and more upset.

I had a monthly Alzheimer’s Association support group meeting that evening.  But with Carl in the state he was in, I felt it wouldn’t be helpful or kind to leave him alone.  I called the group and explained that I wouldn’t be able to show up.

I stayed with Carl, and by bedtime, he’d calmed down a little.

Thursday

In the morning, Carl was still deeply distressed – asking “What do I do?” – and saying “I have nothing” and “I have nobody.”

I needed to distract him.  And I needed to try to get him to be more positive.

I got us through our morning routine and breakfast.

Ordinarily, we would shower next, and then I would work on my writing – on my computer, upstairs, in my study.  But I figured that Carl was in enough of a rough spot that I needed to help him more than I needed to write.

After breakfast, I suggested that we go down to the basement and walk on the treadmill.  He was starting to brighten up a little, and he accepted the idea fairly cheerfully.

When we walk on the treadmill, we play a VHS tape.  We were partway through Oklahoma.  That day, the tape started with Curly and Jud in the smokehouse, singing Poor Jud is Daid.  While I was on the treadmill, Carl was beating time with the music, which I took to be an encouraging sign.

Then we showered.  A shower usually perks Carl up.  And it did.

After our shower, I would usually work on my writing, and Carl would settle on the bed or on the sofa.

Today, I printed out the project I wanted to work on, and I sat working at my end of the sofa – with Carl sitting at his end.  We kept each other company while I worked.

By dinner time, Carl was pretty much back to normal.  So we had a normal dinner, and we watched The Shop Around the Corner.

It’s rough

Thursday was so rough that I’d started thinking this would be one of those “drop off” points I’ve heard about, where an Alzheimer’s patient makes a dramatic decline.  But my friend has bounced back – almost completely, if not completely.  I keep a weather eye out for the things Carl is able to do – that he volunteers to do – and the things he’s able to figure out for himself.  Every time I see him figure something out for himself, I send up a silent – or almost silent – cheer.  By mid-day Friday, it looked like he was doing pretty well.

But he’d been asking, “What can I do?”  I don’t know what to do.  Financially, we’re about at the bottom of nothing.  And I’m not doing well at discovering how to earn a living from my writing.

But I’ll keep pushing forward – as best I can.

What I try to do

As a caregiver, I’m advised to keep Carl as active as possible, mentally and physically.

He can’t remember things – or focus on things – so how do I keep him mentally active.  I don’t really know.

I try to keep us on routines that he can become familiar with.  And it seems to work.

Every shower, we do the same things – in the same sequence.  When we start, I say, “Wash your body.”  When I get the shampoo down, I say, “This is shampoo for your hair” – two or three times.  When I get the shower gel down, I say, “This is shower gel for your body.”  With each direction, I do what I say – I wash my body or I wash my hair – so my verbal prompts are reinforced visually – and also, you might say, kinesthetically as well.

One day, I got down the shower gel, and I said, “This is shower gel for your body.”  Carl said, “Isn’t this for my hair?” – or something like that.  As I was trying to figure why he was confused, I realized that I’d gotten distracted, and I’d skipped the shampoo.  So Carl showed me that my routines are doing what they are intended to do – at least some.

When we’re rinsing and he reaches for the soap, I say, “No.  No soap.  We’re rinsing soap off.”  In earlier days, this would distress him.  But I’ve gently persisted, and now he accepts it and uses the information appropriately.

I wash his back, partly to get the adhesive from the transdermal patch off.  Also, I figure that any sensory stimulation I can provide is doing something to keep nerve pathways active.  When his back is soapy, I take the knuckle-finger side of my fists and give his back a firm, somewhat deep massage.  He does enjoy this.

When we use the shower gel, I comment on the fragrance, and I look for a response from him.

I hug him a lot – in the shower – in the kitchen – anywhere.  Even in the grocery store, I make sure I connect with him physically.

I figure that this contact is activating neural pathways of some sort – somewhere.  And I figure that I’m providing emotional support, where I suspect that a lot of Alzheimer’s patient caregivers become more and more distant and hands off.

When we fix our lunch salad, there are certain parts of the process that Carl always helps with.  Any time the salad needs to be tossed, that’s Carl’s job.  And he fetches things – like the big mixing bowl — or if I need a new bag of broccoli from the basement refrigerator.  And he sets up his TV table – and he gets ice for our drinks.  He helps wash and dry some.  Also, I try to think of new things he can do, without holding up the process too much.

And my friend appreciates the things I do for him.

So …

I’m reminded of John Howe, the conceptual designer for Peter Jackson‘s Lord of the Rings.  He was talking about Tolkien when he said, “He was writing the antithesis of commercial fiction – this notion of being able to go on – and finding hope in hopelessness.  The most poignant statements in the Lord of the Rings are the elves, who have been fighting what Galadriel calls the long defeat.  And they’ve been knowing that they will lose for the last few thousand years.  But they will continue fighting until they are defeated.”

But Tolkien used the phrase “Hope with no guarantees.”  That’s what I try to keep up.

Joseph Campbell said, “The individual has to find an aspect of myth that relates to his own life.”  I’d say that Tolkien’s tale is as good a myth as you’ll find anywhere.

So I’m learning from my myth.

I’ve got to keep pushing on.

I really can’t think of anything else that makes sense.