Questions I answer over and over again

What was that?
Where are you?
Are you all right?
Did you put yogurt on my cereal?
Did you put milk?
Where’s Ravi (one of our cats)?
What was that?
Is that Ravi or Scarlett (the other cat)?
Are you all right?
Where’s my spoon?
What does my t-shirt say?
When is the Memory Walk?
Where are you?
Have I taken my pills yet?
What are we doing?
What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you? What was that? Where are you?
Where
Are
you?
?
?
?

Losing words

Strange how it happens and we adjust. I understand now how people with dementia eventually lose the ability to communicate.

For a long time, when Bob looks for the remote control for the radio (he's quite an NPR addict :), he asks, "Where is the radio?" I can't correct him or get him to use the right word so ... if "radio" works, then radio it is.

This morning I realized that a new word change had occurred. After we'd taken a walk, done some yard work, and gone inside, I asked him if he wanted to shave. He looked at me quizzically. I repeated thinking he'd not heard.
He had heard; he repeated the word "shave" curiously. Finally I said, using hand gestures, "You know, where you use the razor on your cheeks?"
He smiled widely, "Oh, you mean 'do I want to scrape?' That's what it's called: scraping."
Ok with me, I will try to remember that new word next time.

"A rose by any other name would smell as sweet."

Rest for the wicked

I just spent a week in London with my two daughters, Kelly (lives in Edinburgh) and Amy (lives in Madrid), while Bob spent the week at his brother's house on the Chesapeake Bay.

Having had a week’s break from caregiving, I find it hard to put my feelings into words. Bob had two brothers, a sister, and two in-laws to help him out. He did well, although he got quite tired from all the talking and finally gave in and took naps.

This is reassuring to me as it’s easy for a caregiver to fall into that “there’s nobody but me …” way of thinking. Just to be sure all would go smoothly, I had written and sent the Bob Instruction Booklet, which, of course, the brothers barely looked at, although his sister read carefully:)

Getting away was invigorating while I was away. We spent our time shopping and seeing plays -- without male restlessness or sighing. As we navigated the crowded streets, Kelly would say, “Mom, relax; I’m not dad.” I had trouble giving up my habit of checking over my shoulder every five seconds. Finally they put me at the end of the line and all was well.

I had hoped that the R&R would linger in my soul, but it really hasn’t. I try telling myself that this is something we can do next year as well, but I am haunted by the “progressively deteriorating” aspect of the disease, and I find myself not really believing. I want to start that week over again.

I need to put all of that behind me and enjoy the memories and remember the laughter. Here and now – that’s what we have.

It's really difficult to live my life and not the disease, especially during the lazy days of summer when time hangs heavy. I guess I should go clean out a closet or two.

My grandmother would be proud of me. Thank heavens for families.

Friendships

Thursday night Bob and other former Think Tank Player members (this was an adult education class for folks with early AzD -- from about two years ago) were asked to sing their favorite song, Hello My Friends, at the opening of a local Caregiver Conference.
Of course, Bob never misses a chance to sing and wanted to go. I ended up also taking his closest friend, Dr. Joe, a former plastic surgeon, as Joe's wife has some stressful family stuff going on and couldn't transport him.
We picked Joe up and the two of them practiced their song all the way to our destination.
They had reserved front row seats for the six singers (and their caregivers). To get a better view I moved to the next row and sat directly behind Bob and Joe.
The performance was greeted by a standing ovation; the guys were all so obviously delighted to perform again. They belted it out and waved to the audience. Afterwards we stayed for about 45 minutes to watch the improvisational theatre group's skits about caregiving problems.
It was heart warming to watch Bob and Joe next to each other, being sure to stay together, holding on to each other, and whispering and laughing (only politely, of course) during the event.
Our doctor has stressed the importance of social contacts. The local AzD Association has created opportunities for people with dementia to bond. It is one of the really good results from this terrible disease.
Another is that when they "lose" a friend (two of their close group have already been placed in nursing homes), eventually they forget.

1000 words

The Struggle to Communicate

Many of my entries are in dialog form because that’s where the essence of the disease and the losses show up. When my fellow caregivers read some of these, they howl in recognition and in shared frustration.
Today:
Me: The squirrels knocked the lid off the the bird feeder, that green metal top.
Him: Where?
Me: The feeder outside the office window.
Him: Where?
Me: The window next to where I sit at the computer.
Him: What?
(This is exactly word for word written down dialog, mind you.)
Me: I think I should go outside and find the top.
Him: To what?
Me: The birdfeeder.
Him: Where?
Me: Could you take the birdfeeder down?
Him: I’ve done it for years and years. Show it to me.
Me: Okey dokey.
Him: Here’s the problem. These papers are on the table.
Me: (Moving them) I think it’s fine now.
Him: I’ve done this for weeks and weeks. The problem is you pile stuff up there. That’s why the top wasn’t on right.
Me: Ok. Can I help?
Him: No. I’ve done this for years and years.
Struggling to reach out the window to the feeder (remember his brain won't let this man see so everything he does is a true adventure), he says: This table wasn’t here before. That’s the problem.
Me: The (wooden library) table has been there for years and years.
Him: It has?

The Descent into Hell (probably not yet)

I’ve resisted for a long time putting Bob onto any anti-depressants (our doctor recently suggested he thought it was time) even though I’ve been on the lowest dose of Prozac since my gyno treated me for hot flashes and then, after the diagnosis of AzD, we decided I should stay on it.
I tried going off last summer, thinking I didn’t need it. Within a week I was short tempered, irritable and rushed; you can only imagine the kind of reaction that provoked in dh.
The one steadfast rule of Alzheimer’s is that the emotion you project is the one you get back. Maybe that fact is why I’ve started watching the Dog Whisperer -- to get some training.
Of late, Bob’s been a bit depressed, definitely more frustrated, and irritable. He gets angry at me. He doesn’t hear well, asks me to repeat, and when I do so with a raised voice, he puts his fingers in his ears.

Today in complete frustration, I slammed the front door after he’d stepped out on the porch. Despite the fact that the storm door was closed between us, he decided that I slammed on purpose with the intent of damaging his hearing.

Remember: logic has no place in this world.

Eventually, I went off and walked on my own. When I returned, we tried to wrestle through this, but he felt hated and wronged.

The most horrible thing about this disease is that the caregiver really does have it too. S/he doesn’t get the same compassion or understanding. For sure her “patient” never understands the depths and lengths of emotional control and personal loss required and experienced.

Today Bob told me that he has been naïve and he now accepts the general view among his group of men friends about their caregiver wives: “They’re trying to have some little fun thing. They’ve got the power.” An exact quote: I wrote it down the minute after he said it.

What an incredibly cruel disease. Either I need more drugs or he does.