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.

Around in Circles

Yesterday Bob went out to walk in the back yard and see if he could "see" our music loving neighbors. I watched as he strolled along the edge of the deck, looking toward their house often and sometimes standing and peering through the trees. It was rather poignant. Then he seemed to stop looking and just made a loop of the house.
However, when he came inside, he commented: "I don't know what's up with them. They didn't say a thing."
I asked, "Did you talk to them?"
Bob, "I tried but they didn't answer."

Singing with Roy

My husband loves nothing so much as music. I believe he could be locked in a padded room with great music playing and be happy to the end of his days.

We’ve recently “learned” that our neighbors apparently like music too. I always play a CD while Bob eats breakfast; early this week he was in the kitchen groovin’ with The Greatest Hits of Roy Orbison. He came upstairs and told me, in a quiet voice (so they wouldn’t hear him), that the woman who lives behind us had brought “a whole bunch of children” and they were in our yard smiling at him as he stood at the sliding glass door singing. Unfortunately, I was too slow on the up-take and expressed my doubt. The day deteriorated because of my disbelief.

The next day he came and got me so I too could see the “maybe as many as 30” people who were out there still smiling with the music. We have a wooded back yard. I looked out. Trees. Greenery. Vaguely, as always, I could see the neighbor’s house. This time I was prepared: “It’s so good they’re smiling,” I said jovially. Bob was happy and nodded in time to Roy.

This morning as we sat on our front porch drinking coffee and enjoying the day, Bob looked down at our river rock and chuckled. “This dementia is so weird. It looks to me like the rocks are smiling.” We laughed, commenting on their good nature. As we got up to go inside, Bob jokingly leaned down to the rocks and said, “It’s ok, guys. At least I know you’re alive.”

Later in the kitchen, I asked, “You know how you were joking about the rocks off the front porch? Do you think that could be what’s happening here in the back yard with the people and the music?”


He glared at me from the doorway, said nothing, and left.

Summer 2009

Just to say that during this summer of 2009, we beat the disease at least for a few months. Vacations (apart) were terrific and restful for me; time together was laugh filled and stress free. Of course, as all of us know, summer vacation always ends.
Carpe diem!!