Nov 26, 2010

What I Learned about Alzheimer's Disease in Three Weeks

How can I sum it all up? Mostly in three words: love, dignity and respect....
By Peggy Blevins

I received a call from a friend. She had a problem. Her mom, who has Alzheimer's disease, had lost her caregiver suddenly, and she was urgently in need of another.

It didn't mean staying forever, just getting her through a rough spot while she found someone else. My work involves a lot of time on the computer. She thought I might be able to help for a while and still get some of my work done.

What I've learned about Alzheimer's in three weeks

Beatrice (not her real name) is in her 80's. She uses a walker, and has one of those lift chairs that helps her stand up. She spends most of the day in it. She cannot walk around on her own. On top of AD, she has arthritis, and that affects her movement and especially her hands.

Beatrice is still continent, but needs help toileting.

Communication. She is at the stage where a typical conversation goes like this:

[looking at a magazine] "I would be hearing and see, he had been, he might be...
[I ask,] "What else is in that magazine?"
It's pretty good. The reason is that...look
[reading aloud] oh be family' family's eat
[looking outside] They've got that...he's waiting for everyone to get. Eat. Eat for better or for less. That's what that says. [indicating the magazine]
[looking at the porch] That's right.

Mostly I just listen. Now and then I ask a question or make a comment, but I get the feeling that one reason she sleeps so much is that she is bored and depressed. Even if she is just rambling on and not saying anything that makes sense, someone needs to listen, at least some of the time. It's difficult though. The planned work on the computer is mostly just set aside for these three weeks. I cannot ignore her. She starts sleeping less during the day, and more at night.

Although this was my first real contact with AD, in just a few days, I come to understand a little Alzheimer's speak.

"Will you take me somewhere?" means a trip to the bathroom. But most of the time it is indicated only by a casting off of the blankets Beatrice uses to keep herself warm in her chair, and an anxious look towards me.

Twenty questions becomes our favorite game. She indicates she wants or needs something, and I play guessing games with her to see just what it is. I get better and better at the game, as I come to know her. She loves coffee. Her hands are cold. She wants something. "Do you want some coffee?" Relief floods her eyes. "Oh yes!" or "That might be."

I’ve also learned not to take it personally if she says something harsh. She doesn’t mean it. She just doesn’t know how to speak gentle words like she used to, when she doesn’t like what is going on. AD has removed all of her tact.

I’ve learned that sometimes my words don’t make sense to her.

Being remembered. I've learned that she loves to have her greeting cards read to her every day. These are a collection of cards from her friends at church. They mostly say things like how much they love to see her at church, and how they are thinking and praying for her. As I read them, I build in pauses for her responses, some of the most coherent of the day. "Oh isn't that nice!, I love you [meaning the one who sent the card], You are so sweet." She doesn't remember who these people are now, but she still understands that they think of her, and that is enough.

Human touch. I learned quickly that she needs human touch. So she gets a hug, or an affectionate rub to her arm as I'm passing by, to say I remember her and care about her, even though she doesn’t know who I am. Sometimes when I see her getting that worried look, and I know it isn't the bathroom she needs, I sit beside her and hold her cold hands in mine and try to warm them up. I think she likes the touch even more than the warmth of my hands. It makes her feel cared for. She says “Oh I love you!”

It isn't enough to just take care of basic needs, and ignore the person within. I think of myself. How would I want to be treated if this happened to me? It may some day. I would want a little attention. I would want more than just someone mechanically helping with toileting, bathing, feeding, and getting from place to place. I would want someone to treat me like a human being, and recognize I still had worth.

Routine. I've learned that Beatrice likes the same things over and over, and that they are at the same time comfortingly familiar and new for her each time. There is a music show of old time gospel hymns that she enjoys every day. She remembers a lot of the words, and sings along. The rest of us about want to go out of our minds when we hear it, because we are so tired of it, but we cannot resist playing it, just for the pleasure it gives her.

Finger food. I've learned that she likes finger food the best. Although she still eats with a fork or spoon, sometimes she forgets and picks up a piece of spaghetti with her hands.

Food choices. I've learned that one day warm prune juice is "delicious" and the next it may be "horrible." Sometimes I'll make her something I'm sure she will like, and she will just pick at it or refuse it outright. I try to have a few options available when possible.

Hydration. I've learned that I need to remind her, or she will hardly drink anything. I cannot force a glass of water down her, but Beatrice loves juice (except sometimes prune juice). Any time I bring her a little glass, her eyes light up. "Oh, that is good!" she will say, and drinks it all up.

Patience. I've learned that I cannot rush her. She will stand up in her own time. Rushing can be counterproductive. She will get a worried look on her face, and become fearful if I push her to move too fast. When I tell her, "There's no rush, we'll wait until you are ready," it returns free will to a person who is feeling bossed around and pressured. And usually it isn't long before she is ready and able to do what she must.

Free will. Some things just aren't optional. But when Beatrice thinks she is making the decision to do them, it just seems to go easier for both of us. Sometimes she has free will, and sometimes she only has the illusion of free will. I've learned also not to always make an issue a matter of free will. Instead of asking her opinion, I just do. Some things simply aren’t optional, like meds. But I make sure to build in some choices in every day, because every person needs to know they have some control of their life.

Her brain-body connection. I've learned that sometimes her body doesn't seem to obey her mind. She will grab the towel and hold on for dear life, at the same time that she is smilingly saying OK to my request for her to drop the towel. I have to gently help her to open her hands and comply with my request. I don't escalate this to a tugging match. I just say "Let me help you with that."

I've learned that going out--whether it is to church, or to the dentist is good for her. But it also takes a lot out of her, and means she will be sleeping a lot the following day. This may be more just normal aging and her sedentary lifestyle's effect rather than AD--it's hard for me to know.

Empathy. I’ve learned that while I don’t particularly like taking someone to the bathroom, it is even worse for that person to have to be taken.

Preserving modesty. I’ve learned that even when a person needs help in the bathroom, there is a time to look the other way, if possible.

How can I sum it all up? Mostly in three words: love, dignity and respect.

Peggy Blevins is a missionary who works with severely language deprived children and trains teachers of the deaf in hispanic countries.

Subscribe to the Alzheimer's Reading Room
Enter Your Email Address

Alzheimer's Disease -- Advice and Insight

The Alzheimer's Action Plan   300 Tips for Making Life Easier

Original content Peggy Blevins, the Alzheimer's Reading Room