Can’t They Do Something?
November 28, 2006
Grandpa rarely talks about his Alzheimer’s. When I first came to live with them I wondered if he even remembered or realized that he had Alzheimer’s. I soon learned that he does know he has Alzheimer’s, and he does think about it. He talks about it very rarely, but sometimes he does. With all the problems that Grandpa has it is easy for a person to think he “isn’t there.” But the rare times he does talk about it reveals a man who is much more aware of his problems than a lot of people would give credit.
Sometimes I wonder if we really can comprehend such suffering to have empathy enough . . . to really understand what it is like to wrestle every day with a disease which is slowly stripping you of everything . . . and your ability to communicate first.
What follows is a rough approximation of the conversation Grandpa had with me this evening.
While I was in the bathroom I heard Grandpa trying to communicate with Arlan. I came out and asked Arlan. what Grandpa had wanted and Arlan said he hadn’t been able to figure out. I found Grandpa coming up from the basement. “What would you like, Grandpa?” I said.
“I don’t know,” he said, picking up a bit of lint from the carpet. “I can’t remember. I know it was something, but I can’t remember. I wish . . .” he trailed off walking into the kitchen. I followed.
“. . . Typewriters, shorthand, and all that stuff. You know,” he said, taking his chair.
“I know what shorthand is, and I know what typewriters are,” I said, not sure where he was going or what he was getting at.
“Is that my coffee?” He pointed at the mostly finished cup.
“Yes, that’s your cup,” I said.
“Well, I think about it . . . I think about it to myself and I wonder ‘couldn’t all the smart people and big chiefs get together with the stuff and come up with something down the pike for people who can’t talk.’”
“Well . . .” I said now understanding what he was getting at. Grandpa’s failing ability to communicate is the biggest source of grief for him. I don’t have a nice pat answer to what I know is the heart of his problem but since he stated his question in a general way I decide to continue the conversation in the same manner.
“For someone who couldn’t talk,” I said, “they could learn how to type and they could communicate that way.”
“Yeah,” he said and rubbed at his eyebrow. “But for someone with Alzheimer’s . . . they need something. When you try to say something you can’t and then you lose it, but it’s still there and you know it. People . . . Grandma is the worst.”
“She just stares at you like she don’t understand anything,” I said.
“That’s right.” He adjusted his glasses and mimicked Grandma’s blank blinking stare. “They say ‘What? What? What do you want? What’s coming down the pike?’ And you can’t say it. It’s lost.”
“I know,” I said. And I do know Grandma’s reaction to his failing attempts to communicate is a great source of distress for Grandpa. When she just says, “I don’t understand what you’re saying,” and doesn’t make any attempt to interact with Grandpa he feels both like he has been brushed off, and, I think, that he is being lost in an inability to communicate. How would you feel if you were losing the ability to communicate in the same language as your family?
“I know a little bit what it is like, Grandpa,” I said. “Sometimes I loose my words too and I can’t figure out how to say it.”
“That’s right,” he said. “It happens to everyone sometimes.” Then he laughed a little and said, “Well, if you come up with something I’ll sing your praises.”
And that was the end of it.
***
The above doesn’t communicate all the nuance of our exchange. When talking with someone suffering with Alzheimer’s’s sometimes half of the conversation is taking place on an unspoken level. Grandpa struggles so much to hang on to his thoughts and keep them in an organized fashion that he often only speaks half of them, speaks unclearly, and uses the wrong words. A conversation is never so straightforward as a written account makes it seem.
Grandma’s inability to understand Grandma very well is only half her fault. I think she could be more long-suffering and patient with Grandpa, but I realize that interpreting his words and filling in the silences requires quick thinking and an agile mind . . . something Grandma isn’t really up to anymore. Grandma probably wouldn’t have been able to understand what Grandpa was trying to get at with “Shorthand, Typewriters, Smart people, and big chiefs.” But her response of simply staring blankly and Grandpa and saying, “I don’t understand what you’re saying,” and then finding the best thing she can think of (in her mind) to appease Grandpa isn’t a helpful solution.
Very rarely will anyone ever understand immediately what Grandpa is talking about, but to simply say, “I don’t know what you’re talking about,” simply trips up Grandpa more, and makes him feel as if you’re brushing him off–you’re not even trying to devote any effort to understand what he is trying to communicate. The thing to do is get close to him and make eye contact. Then you reiterate what he was talking about (even if it doesn’t make much sense) and often he will either correct himself “That wasn’t the right words. What I meant was . . .” or else he will continue his line of thought and sometimes the continuing thought will make it clear what he meant.
In this case I responded to his first statement about shorthand and typewriters by telling him I knew what they were. This gave Grandpa the confidence to feel like he was really communicating with me. When he went on to talk about smart people and big chiefs getting together with all the stuff to get something down the pike to help people who couldn’t talk the context was set and I was able to interpret what he was saying without flustering him or confusing him by trying to make him explain.
Grandma is generally incapable of this method of complex interaction and usually conversation between them ends in a failure to one degree or another. I try to deal with Grandpa’s concerns and requests because I want him to feel like he has got a hearing. Sometimes I even end up being a go-between between Grandma and Grandpa. Grandpa asks Grandma a question and Grandma gives him a blank stare. I interpret what Grandpa was trying to say. Grandma answers me. Then Grandma says in a mildly hurt voice, “Why does she always answer you and not me?”
Note: This material originally appeared in a blog I wrote while caring for my grandfather as he journeyed through dementia. It ran 2006-2009 and ended at the time of his death. This blog was the incipient material for a book, “The Sea is Wide: A Memoir of Caregiving.” If you have appreciated this writing, please consider purchasing the book and sharing it with others.