Alzheimer's Disease

The Head is an Overstated Organ

Robert Patterson, who has Alzheimer's disease, speaks with his wife, Karen, from StoryCorps:

Robert and Karen Patterson Robert: I feel like I’m the same person, but I know I’m kind of a big load to deal with.

Karen: You know how we talk sometimes about who we really are. What is our essence? Memories are not who you are.

Robert: Well, I think one thing I experience with Alzheimer's is I live in the moment ‘cause I can’t remember what happened yesterday—I can’t remember what happened ten minutes ago, but I’m much more present, I think.

Karen: Do you think about the future?

Robert: I know that there’s probably a bad time that comes in the future. This disease gets more wicked, but I don’t obsess on it. I do a nice job of ignoring it.

Karen: With this disease, you moved from somebody that lived in their head a lot to somebody who lived in their heart.

Robert: The head is an overstated organ; the heart is where all the action is. I remember things that occur in my heart much better than things in my head: having fun with the kids, laughing, our new grandchild.”

Karen: Speaking of this new grandchild, is there something you’d like him to know?

Robert: I would like him to know that I fell in love with him the first time I saw him in the hospital. And every time I see that sweet little face, it just makes me feel good. I’m looking forward to hanging with him and teaching him things that I think are really important. That’s my job for the rest of my life.

Karen: I don’t know if you even remember this, but once we were listening to a book on tape. It talked about the greatest thing you could do if you loved somebody, that you would be the one that was left. And that you would be the one that could care for your lover.

You are not alone. And I’m honored that I’m the one that can care for you. I always will.

Robert: You always have. Thank you.

Finding Words

Mai's Quiet Zone, 2004

Dr. Alan Dienstag from “Alzhiemer’s, Memory, and Meaning,” in conversation with Krista Tippett on Speaking of Faith, March 26, 2009:

I was working with a woman who actually first brought her sister to see me. Her name was Ann, and she wanted, her sister to join one of the writing groups [for people in the early stages of Alzheimer’s], but her sister wasn't right for it. About two years later, she came back, and she [herself] had been diagnosed with Alzheimer's. And so I started to work with her, and she joined one of my support groups.

She was in the group for a long time, and then it just became impossible for her to participate. The conversation was moving too fast. She just didn't have the language. She couldn't string together more than a sentence or two, and it just wasn't working. And so she had to leave the group.

Her husband, who was just extraordinarily devoted to her, really wanted her to maintain her connection with me. It was very helpful that I had known her before. And she would bring photo albums in. She would do a little tchotchke tour of my office. You know, when it wasn't really possible to talk about things, she would kind of walk around and we would look at objects. She was very taken by the birds outside the window. I mean, that was the kind of time that we spent together.

And then even that became difficult. She was one of those people who started to kind of retreat into almost a mask-like blankness. It was harder and harder to access her. And so we were reaching the end of that time, and I was talking to her husband, telling him that I just didn't think that it was a really fruitful way for her to spend her time and so on.

So it was around that time, and I was going on vacation, and she loved the beach and I loved the beach and this was something that we used to connect about.

As I was leaving I said, "Ann, I'm going to the beach. I'm going to be away for a while." And she smiled and her face kind of lit up.

I said, "What do you love about the beach?"

She kind of drifted away, as she did, and she got very quiet. And again I waited and I thought, well, you know, she can't really answer that question.

And she turned to me and she said, "There's some kind of music that lives there."

Like a Picture That’s Fading

Excerpt from Lessons from the Lifelines Writing Group for People in the Early Stages of Alzheimer's Disease: Forgetting That We Don't Remember by Alan Dienstag:

The challenge of putting Don DeLillo's observation about writing and memory to work for people in the early stages of Alzheimer's disease brought to light aspects of memory and the psychology of people experiencing memory loss that I knew about but had failed to put to any therapeutic use. I would summarize the most important of these aspects as follows: Writing is a form of memory. As a form of memory, its characteristics create some unique therapeutic possibilities for people with Alzheimer's disease. Because it presents another way of remembering, it provides an individual with additional experiences of being a remembering person and access to different kinds of memories. Perhaps most important, it returns to those whose memories are failing the opportunity to experience and share the memories they have. In this respect, the writing group transformed a weakness into a strength.

What was true of the writing was also true of the reading. In reading the written work, the insecurity of unprompted verbal recall (a factor that over time tends to discourage talking in this population) was replaced with something that is not only tangible and therefore more secure but also lasting. The group format seemed to extend and intensify these effects as well as to provide therapeutic benefit in more traditional ways. In a remark that beautifully encapsulated the acceptance, recognition, and sense of belonging found in the group, one of our members put it this way: "We may not remember everything, but we remember each other and I'm a part of everyone here."

A patient of mine in the early stages of Alzheimer's disease once said, "I feel like a picture that's fading; every time I look, there is less of me here. I almost don't recognize myself." Watching the group members in their struggle to remember, write, and read their work is a moving experience on many levels. One of these is surely our awareness that the picture is fading along with the sparks of recognition. This awareness lends a poignancy and triumph to the work with which one can identify. In this identification there is also a healing of the breach that separates us from people with Alzheimer's. We all know what fading is like, and we all know that our fate is not so different from theirs. The triumph is temporary; it is of this moment, but it is the triumph of life over death. If we do need stories to live, then these are truly lifelines, acts of writing that are life preserving.

Listen to “Alzhiemer’s, Memory, and Meaning,” Dr. Dienstag’s conversation with Krista Tippett on Speaking of Faith, March 26, 2009]

Narcissi in process is a series of self-portraits by Colombian artist Oscar Munoz in which he explores "the graphic and poetic possibilities of water." (Philagrafika)

Both the Problem and the Solution

Listen to this short, remarkable story about a clever strategy which a nursing home in Düsseldorf, Germany came up with to address the problem of disoriented residents wandering away.

“It’s like another thought comes up and you forget what you wanted. It’s like fishes coming up to the surface of the water and then going down again. Thoughts come up and they disappear and you don’t know that they have ever been there. You forget.”

~ Richard Neureither (translated by Regine Hauch) for “The Bus Stop,” by Lulu Miller, Radiolab, March 23, 2010

Pressure

by Company of Thieves

I'm angry all the time

No one's fault but mine

Tell me how you fashion kind

When you're out of style

And I try hard to answer

All the questions that you've posed

Tell me now how should I care

When I feel so alone

And so unloved

The pressure is rising

I mean it, it's binding

I've been compromising for you

When you come home really late at night

Ripe to pick a fight

I know just the kind you'd like

So come on and bite

And I try hard to answer

All the punches that you throw

Tell me now how should I fair

When I feel so unloved and so alone

The pressure is rising

I mean it, it's binding

I've been compromising for you

The pressure is rising

I've been compromising for you

I'm waiting at the bus stop in the morning

And it's pouring

Oh, I am waiting at the bust stop for you

Staring at walls with closed doors

The key that won't work

Sure helps the time pass by

Saying I'm wrong when I'm wrong

Knowing it's the right thing

Sure helps the thoughts in my mind

The pressure is rising

I mean it, it's binding

I've been compromising for you

You, you

I am waiting at the bus stop

In the morning

And it's boring

ddddd

Pressure

by Company of Thieves

I'm angry all the time

No one's fault but mine

Tell me how you fashion kind

When you're out of style

And I try hard to answer

All the questions that you've posed

Tell me now how should I care

When I feel so alone

And so unloved

The pressure is rising

I mean it, it's binding

I've been compromising for you

When you come home really late at night

Ripe to pick a fight

I know just the kind you'd like

So come on and bite

And I try hard to answer

All the punches that you throw

Tell me now how should I fair

When I feel so unloved and so alone

The pressure is rising

I mean it, it's binding

I've been compromising for you

The pressure is rising

I've been compromising for you

I'm waiting at the bus stop in the morning

And it's pouring

Oh, I am waiting at the bust stop for you

Staring at walls with closed doors

The key that won't work

Sure helps the time pass by

Saying I'm wrong when I'm wrong

Knowing it's the right thing

Sure helps the thoughts in my mind

The pressure is rising

I mean it, it's binding

I've been compromising for you

You, you

I am waiting at the bus stop

In the morning

And it's boring