I talk therefore I am

Several months ago my husband would complain about a friend of his at adult day care, a former attorney, who used to talk for what seemed hours about his previous career. He had been involved in the civil rights movement integrating St. Louis schools, a proud moment in his life. Bob appreciates his contribution, but he would complain about how X talked and talked.
This morning, not for the first time, I found myself trying to do my breathing (one one thousand ... out, two one thousand ... in deeply now) while Bob talked; I timed him: 21 minutes without interruption or pause. He talked about whether Neal Diamond was from Carolina and about learning of a problem with bats in Missouri, on and on and on and on. He even now and then, when he couldn't think of a word or pronounce the word correctly, would say "I can't talk" in exasperation.
Talking about exasperation!! I found myself exploding inside. I listened to his stream of consciousness, rambling incoherent monologue. I couldn't help but think that in this way he stays in touch with some kind of thought. He clings to communicating and thinking.
When I consider his conversation from this angle, I hope to be more patient and to listen quietly.

An interesting Alzheimer's fact

We went to see the doctor a week ago and I finally remembered to ask him about temperature sensations in the Alzheimer's patient. Over the past few month my husband has been eternally cold. This was less a problem in September than it is in November. In a house where I will sleep practically naked, Bob is wearing flannel pajamas and has four blankets on top of him before he is warm enough.

When I'd mentioned this to my friends, women whose husbands also have AzD, they had all agreed they deal with the same issue.

Turns out that this is not uncommon. The doctor says that the difficulty may pass or ... linger. Whichever, try just to keep him comfortable -- thank God I'm through with hot flashes! He explained that the section of our brain that allows us to regulate bodily temperature runs right along the memory center, the hippocampus and others. Huh! http://www.dnrsystem.com/limbic.html

Taking an autumn walk

We have lived in this house, in this subdivision, which has but one entrance and is a single street with three branches leading to cul de sacs housing 40 families, for 25 years.
We have been the “walkers” in the neighborhood for 22 of those 25 years; once at a party when someone said, “Oh you’re the walkers,” I corrected them by saying, “No, we’re the Menchhofers.”

This is home. Today for the first time, Bob got lost.

A glorious autumn day, we went for a walk but called it quits after about 20 minutes. I have a bum knee, and the doctor said to let the pain tell me when to stop. After we got back and I settled on the couch with an ice pack, Bob decided he wanted to walk a bit more.

How long do you wait when you begin to feel nervous about a person with dementia going for a walk? Six out of 10 Alzheimer’s patients wander. He wasn’t “wandering;” he’d gone for a walk.

Ten minutes passed. He’d promised it would be a short one. Fifteen minutes. I decided if he wasn’t back by fifteen after the hour, I’d take a drive. Shortly afterwards the door bell rang; I could see Bob out on the porch; sometimes he has trouble figuring how to get inside, but I saw someone else at the door. John, a neighbor we don’t know except to exchange brief comments as he passes us, he’s a runner, had brought Bob home.

He introduced himself and gave me a firm handshake. He spoke pleasantly about the conversation they’d had and how it all worked out perfectly since he had needed to cool down and he and Bob walked home together; he was really telling me that he’d helped Bob find his way back.

Later I asked Bob if he’d gotten lost. He didn’t really answer. He did say that he was sort of looking around and then John started walking with him. He said that John immediately seemed to recognize that, with all the leaves falling, everything looked less familiar.

Bob is glad to have made a new friend.

Who would think...

taking two rolls of extra toilet paper to put on the back of the comode would be a big deal?
Being a caregiver for a person with AzD means that we always try to think of simple tasks which s/he can do and thus feel useful. Today I am getting ready for work and want to put extra TP in the bathroom off our bedroom.
First he looks at the rolls; he wonders what they are; he tries to figure out mentally where the "bathroom off our bedroom" is and then why I want this tp in there. "But... but .. I use this [hall] bathroom."
"I already put extra in there."
He pauses at the hall door and really wants to go inside with the two extras.
IS this worth it??? you have to wonder.
"I need extra here. I go in here."
"Let me take them. I can do it. Thanks, honey."
"No. Take them to the bedroom?"
"OK, yes."
A few minutes later I walk into the bedroom and he's standing there looking at the rolls and wondering what to do.
"Thanks for bringing them in here for me." I take them and put them on the back of the comode.
A few minutes ago I found him standing at the doorway to the hall bathroom. "So, there's no toilet paper in here now?"

Being Patient

Sunday 5:45a.m.
It’s the last weekend of summer and the windows are open; I’m in a light weight nightgown and perfectly comfortable.
“I’m fridging.”
“What?”
I’m fridging … er it’s ... cold in here. I’m … I’m…”
“Freezing?”
“Freezing. I’m freezing.”
As always when he gets out from under the covers, Bob reacts instantly to what he experiences. In the life of a person with Alz no later or before exist. Only now which is … you know, fridging.
I get up and give him the long sleeved blue shirt he’d worn around the house the day before.
“What’s this? I want the shirt I wore yesterday.”
“That’s it.”
“No, it’s not.”
“Ok, let’s just try this and see how it works.”
“No, I’ve never worn this one.”
Sigh. “Ok, let me get you a sweatshirt.”
“Good.”
I get one down from the closet.
“Thanks. I wore this all day yesterday.”
No, you didn’t. “I think you’ll be too hot shortly.”
“I won’t. This is perfect. It’s what I wanted.”
“Good. I’m glad.”
Not 10 minutes later we’re sitting in the living room and he starts fidgeting.
“Can I help with something?”
“This shirt is bothering me.”
“Oh?”
“Well, it’s too heavy and it scratches my neck.”
I do not say but you wore it yesterday.
“Want to change into something else?”
“Yes I do.” I’m kind of hot in this too.”
I hand him the long sleeved blue shirt he’d worn the day before.
“Perfect.”

Memory Walk

Bob with his favorite musician, Hudson of Hudson and the Hoo Doo Cats.

AzD causes a person to move back through the stages of life (like Benjamin Button) just we once moved forward.
Saturday we were at Forest Park here in St. Louis for the Alzheimer’s Association’s Annual Memory Walk -- always incredibly positive, with lots of good music, good people, and good cheer.
One of the musical features this year was an Alzheimer's sufferers group that Bob performs in called the Alzchimers; they mix drums and chimes and song and are taught and directed by a music therapist. Even though Bob has to be helped into his chair like the functionally blind man he is, give him that drum and he is a happy guy. Because Bob gives himself over with such gusto to the music, the group’s director always wants him to have the microphone. Saturday was no different and he sang out with joy, no restraints. When he didn’t remember the words, he was like a jazz man! It was truly beautiful to see.
After the group’s performance and a few formalities, it was time to kick off the walk. Traditionally this is done with the song “We Are Family.” Bob couldn’t restrain himself. Standing there next to the bandstand, he just started dancing, dancing all by himself.
To be able to throw yourself into the moment and the music! He was a picture of sheer delight.

That explosion!

Life has not been smooth lately. It's always sad to realize that even I have fallen into the easy streets of Denial, thinking we could move along as we were and adjust to a three way relationship: me, Bob and AzD.
Since the hallucinations started, I've realized how much Bob imagines a life. He thinks he actually saw our granddaughter-to-be just from our daughter's description of her 20 week scan. Now that's good. When the eyes are bad, a great imagination is really helpful.
However, the other day he stood at the sliding glass door trying to show me the man standing on our deck. I suggested that he was seeing a reflection of himself or the neighbors moving around in their yard. Quietly he said, "I guess I must be seeing things." Such self awareness is devastating.
Bob takes Axona every day, a powdered medical food that I mix in water; I don't think it's helping him. Yesterday he commented how tired he was of drinking it. I asked if he wanted to stop taking it. He said no. I asked if he'd like me to add some fruit and blend it up like a smoothie. He thought that was a great idea.
Innocently this morning when it was time for the Axona, I went to work in the kitchen, telling him that it would be ready in a few minutes. A bit later, he stepped to the doorway just as I hit the button on the blender. He disappeared like a startled cat.
Then when the smoothie was waiting for him and he'd not come in to the kitchen despite my calling several times, I went in search. I found him, as he still is, lying on the bed. I asked if he was ok. He said, "No. I'm in pain." What? "That explosion!!"
He said his ears were ringing; he just couldn't take all that noise. He couldn't imagine what I'd been doing.
I said it was the blender.
He said it was an explosion. It was like a war.
I left him lying on the bed while his ears recover.