The Zen of Caregiving

Is it Alzheimer's, Dementia, or ordinary Aging?

Adrian always suspects he has Alzheimer's or Dementia, though he cannot remember the actual words and keeps asking me what they are.  When he's having a good day, I don't think he has either one because his sense of humor and analytic abilities are strong.

But too often he cannot actually have a conversation with me because he starts to say something and then can't remember what it was.  This happened last night.

"I figured out that I love you," he said.

"Good, I love you too."

"Don't you want to know how I figured it out?  If you don't, then you don't love me."

There's that sense of humor.  "Sure," I said, "how did you figure it out?"

But he was unable to tell me.  He had "lost" the thought again.  We tried for a while to regenerate the conversation, but to no avail.

I try to keep our conversations going by telling Adrian things rather than asking him questions he can't answer, but it gets lonely at times.  It is worse for him because he feels isolated socially.

It doesn't really matter what we call it:  aging, dementia or Alzheimer's.  He suffers nonetheless.

When caregivers help too much

Sometimes caregivers try to help too much.  I had just finished painting this morning and walked out of my studio to use the bathroom, when I saw Adrian trying to put short skis on in the mud room.  I immediately went over to help him, since he seemed totally confused about how they worked.

These skis strap onto your every-day boots, and are good for going through rough terrain in the woods.  I soon had Adrian strapped into both boots.  Then he stood up.

"How do they feel?" I asked.

"I have to try them," he said.

"What do you need?" I got his coat and helped him on with it.  I offered him two choices of walking sticks.  I offered to get a pair of our cross-country ski poles from the basement.

"I need to get back to work, though, so what do you want?"

"You're rushing me," he said.  "I wonder if I can get out the door and close it."

"Do you know how to get them off?"  I was worried that he'd fall and not know how to remove the skis.  "I guess I should have stayed out of it.  If you'd learned how to put them on yourself, you'd know how to get them off."

He finally made it out the door, and even remembered his cell phone so he can call me if he gets in trouble.  Next time I'll stay out of it unless I'm asked for help.

Better communication helps relieve caregiver stress

As caregivers, we think we need to be patient and loving at all times.  So we overlook things that bother us until we reach the boiling point.  And then we boil over.

At least, that's how I do it.  The other night Adrian shook out his quilt at 2 a.m., creating a puff of cold air in my face that woke me up.  I got furious and did it back to him (not that it mattered to him, since he was already awake).

Even after taking a sleeping pill, I could not go back to sleep.  He has to stop doing this to me, I thought.  I don't deserve this.

In my mind I tried and convicted Adrian, convinced that waking me up in the middle of the night was equivalent to abuse. 

I had never complained much before about the quilt shaking because I knew he wasn't doing it on purpose to wake me up.  And I knew he just didn't remember that I'd asked him not to do this.  So if it wasn't his fault, whose was it?

Well, we finally sat down and had a serious talk about the problem and Adrian agreed, of course, that I should be able to sleep without him waking me.  We came up with a couple possible solutions that would allow me to sleep undisturbed, and Adrian to have his quilt the way he likes it. 

The important lesson in this is to speak up about a problem, not wait until you boil over.

A Caregiver's Need to Rant

My caregiver's rant for the day:  I have had a bronchitis cough since the middle of November, and I can't seem to get rid of it.  So all I wanted to do today was take a little nap after lunch.  I told Adrian I was going in to take a nap after I put the laundry away.  I invited him to come with me and put his laundry away, too.

Well, he fiddled with his back-pack first, emptying it on the bed and going through everything in it.  Then, when I was ready to go to sleep, he started to put his clothes away.  I asked him nicely to leave them and do it later so I could sleep.

"Why?" he said.

"Because I can't sleep while you're doing it."

"It will only take a few minutes," he insisted. 

"Fuck," I said and walked out of the room.  I came into my studio and locked the door behind me.  I just wanted to cry.  No matter how much I do for him, he can't seem to change his schedule one iota for me. 

He is probably already sorry and wanting my forgiveness, but I don't care.  I don't feel well. 

Later . . .

So I was petty, impatient and bitchy.  I'm bipolar, give me a break.  Adrian hates it when I'm mad at him, and so do I.  We made up after I finally took my nap.