Sunday, May 06, 2012

Dispatches From the Alzheimer's Front

(Full disclosure: This isn't the face of total misery; the man is actually sound asleep.)

Constant Readers will recall my reports from the visit home to see my folks. My mother is recovering from a stroke, getting better; my father is moving into late-state Alzheimer's and getting worse. 

Those of you who have been around Alzheimer's patients know what a frustrating and terrible experience it can be. This is worse if your feelings toward the patient are less than loving. As I have pointed out, my father and I were like a lot of fathers and sons, in that we mostly never got along. Not a full-out shooting war, but not a happy peace; more like a shaky detente. A long-running armistice. A truce with a slow fuse smoldering ....

Um. I won't belabor that. I will offer that the flavor of my visit ranged from awful to funny, and I suspect my experiences mirror others who have found themselves in this same position. I thought I'd throw a few of the interactions out because they are instructive and revelatory.

No particular order, just as I recall them.

First, my father is pretty far gone. Short-term memory is completely shot, and the cycles when he is coherent enough to have a sensible conversation have gotten briefer and more limited. He didn't have bad days and good ones; He had bad days and a few good hours. 

Mostly when this happened, he offered memories of when he was about ten years old. Rather like a stone skipping across the water, the instants he touches reality are only bounces; the rest of the time, his mind isn't functioning, it's sailing through the air, out of contact with the world.

He would ask the same question over and over, five times in the space of five minutes. "When are we going to eat supper?" This after getting up from lunch.

"Five o'clock."

Same question a minute later. And the minute after that. I  started holding up my hand, fingers spread. "When are we going to have supper? Five?"

He never knew who I was. Once, he asked me my name. 

"Steve," I said. 

"Steve what?" 

"Steve Perry."

"Are you kin to me? Are you my brother? My father?"

"No, I'm your son."

"My son?"

"Yes, Daddy. Your son."

He knew he was married, but couldn't remember my mother's name most of the time, nor his own birthday.

He couldn't hear very well, either, or so I thought. He'd ask a question:

"Where's Mama?"

"In the bathroom."


"She's in the bathroom."




I began to wonder if it was not because he couldn't hear me, but that he couldn't understand  my speech. That's the most common form of hearing impairment as you age–you can hear the sound, but the frequencies of speech are what go away. It sounds like somebody mumbling. Why I got hearing aids.

Then we had another exchange and I realized that in some cases, it wasn't because he couldn't hear or understand, it was something else. Let me set that up:

As the days wore into evening–and they were wearing–he would start to get paranoid and depressed. This is common among Alzheimer's patients, Sundown Syndrome, Night Terrors. If he went to the bathroom–which he couldn't find on his own–and looked up and realized he was alone, he would start yelling and hammering on the wall. I'd be standing in the bedroom, five feet away from him but it didn't matter: "Where is everybody?! I need help! HELP!"

"Right here, Daddy. What do you need?"

"I don't know."

Once, when I was standing right there, close enough to touch him and he started hammering his fist on the wall, I said, "Stop that."


"Because I'm right here."

"Well, nobody would help me! Nobody would talk to me!"

"Help you do what?"

"I don't know."

So in the evenings, he would start to feel sorry for himself. "I'm not going to make it until morning. I'm going to die. Say good-bye to Mama for me."

The first time this happened, I was all over it. "You aren't going to die tonight, Daddy."

"Yes, I am. And nobody cares if I do."

"If we didn't care, I wouldn't be here."


After the third evening of this, I was less worried about this death-chant. I would sit there in the chair next to his bed while he went on about dying and not say anything at all. He'd try five or six times to get a response, then drift off.

By the fifth or sixth night, I was saying stuff like, "Well, you were wrong about that last night, and the night before, and the night before that, I'm guessing you're wrong about it now."


Or, he would get pissed off: "I don't have to stay here! I'll go somewhere where they appreciate me more!"

"Yeah, well, you're gonna have a long walk."


I can easily see that after weeks, months, maybe years of that, how caretakers might start hoping that this would be the night when the rant would come true. What a blessing it would be ...

Um. Anyway, we were sitting at the table in the dining nook after supper once evening, just he and I, and he started off down the I'm-about-to-die road. This after another triple-round of "What?" couldn't hear me, when I explained that Mama was watching TV. I got up to go get him something to drink, and was in the kitchen, my back to him, when he said, "I guess I'm going to die tonight."

Under my breath, sotto voce, back turned to him, I said, "Oh, we aren't gonna play this game again."

And deaf-and-dazed George said, "We aren't going to play this game?"

I turned around. "You heard that?"

"I heard it. And you don't even know what game we're playing."

I went back to the table and sat. "Oh, I think maybe I do know. You hear better than you let on."

"I hear just fine."

My, my.

And he didn't like it that I had caught him out. Not at all. He got angry. Started yelling,  stood up, drew back his fist as if he was going to hit me. Which pushed one of my oldest buttons: "Go ahead and throw that punch and see what happens."

He didn't, of course. Bullies know when to hit and when to back down, even as far gone as he was. 

But five minutes later, the whole experience was, for him, gone. As if it had never happened. 

"When is supper?"

"We just finished supper. You want some ice cream?" 

Ice cream? Oh, yeah! He heard that just fine. He never once said "What?" when I asked that one. He loves ice cream.

This is one of the worst things about dealing with somebody who isn't home much any more. You can get upset, emotions roiled, and while you are dealing with that, they have forgotten all about it. You can't really be mad at them, because they aren't there any more.

One more, then I'll quit for now.

My mother, in her wheelchair, at the table with my father and me. He got angry and ramped up: "I don't have to stay here! I can leave! I'll get a job!"

My mother laughed. "You can't get a job, you're too old!"

"How old am I?"

"You're eighty-six!"

He blinked. "Eighty-six? That's old."

"How old did you think you were?"

"I don't know. Sixty?"

Tragedy and comedy, both at the same time. 

More later ...


Adriana said...

I understand this is an awful situation on many levels. But I have to say it fascinates me. Maybe it's the way you tell it. Thanks for the read.

Irene said...

One consideration to bear in mind is that he may be able to hear the sounds just fine, but cannot interpret the meaning of them. Auditory agnosia is quite common in various forms of dementia. (Also drug use and exhaustion.) Words/sounds that have a strong emotional meaning, such as ice cream, might be less susceptible.

Steve Perry said...

You are right, absolutely. And strong emotion is a focus for incoming sensory detail -- anger in particular makes the hearing and mind sharper, at least up to a point. The signal-to-noise ratio improved when he got pissed off, and maybe on some level, he does it for that reason.

I know it's not just hearing per se -- he could hear the birds, planes passing by, trucks on the street, no problem.

Hard to say where the line was and is.

My father always demanded to be the center of attention and even now, he still is. I know his brain is off the rails, but sometimes, it didn't seem to be quite as far as he let on. Several times, he said he was unable to do things that he could -- and would -- do if you folded your arms and waited.

The dementia is there, of course, and the short-term memory is gone; still, there is sometimes a sly look that makes you wonder: Is he still manipulating things on some level?

My sister is a saint; but even so, the time will come, the progression of the illness might be slowed but it continues to a point where it wins eventually.

From where I sat, the term "karma" kept popping into my head. With a lot of people, you can't see that, but in this case, it's hard not to nod and go "Yeah ..."

steve-vh said...

I loved the last one Steve.

Anonymous said...

Hi Steve, I've been through some of this with my father when he had brain cancer and it sounds like he and I had a different relationship than you and your father. Its an awful experience where the only input my dad chose to receive was when he was with family, who I think he felt inside he could let loose with and feel sad and angry about his sickness. Reading your posts bring back lots of emotion and I wish you and your family the best trying to keep sane in an insane situation. Trite but true. Athony