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.
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?
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.
(Is the title PC?) I backed the car out, loaded my stuff, and opened his door (passenger’s side) so he could hop in and we could drive away. He walked around the rear of the car, looked about, reached for the handle of the back door.
Me: Nope. Move forward a bit. The door is standing open. He steps back and walks toward the trunk. Me: Wait. Come on back along the side of the car. The door is open.
He walks along the side of the car and then around the open door, bumping into wet tree branches on the way. He crosses in front of the car and arrives at my (the driver’s side) door. He doesn’t know where to go.
I get out and walk him around to the open door.
*A Chinese Fire Drill is a pejorative expression usually referring to a prank, or perhaps an expression of high spirits, that was popular in the United States during the 1960s. It is performed when a car is stopped at a traffic light, at which point all of the car's occupants get out, run around the car, and return to the car (not necessarily their original seat). Chinese fire drills are sometimes executed when one needs to get something from the trunk of a car. Occasionally, if one of the participants is late to get inside the car, the others might drive off without him or her. Thus the expression "Chinese Fire Drill" is the act of a group of individuals accomplishing nothing. (http://en.wikipedia.org/wiki/Chinese_fire_drill)
The only way to survive Alzheimer’s is by reaching out. I can’t imagine those people who huddle at home, hide the disease, and die in fear. This applies to both the sufferer and the caregiver as AzD really is a disease that strikes more than the one who gets the official diagnosis.
The caregiver dies inside little by little too. I know that. I see it happening to me. I know how difficult it is to keep wearing the brave happy face. My husband’s doctor has stressed how important it is to maintain social contacts. For me friends and colleagues are life itself.
I retired last year from teaching because Bob required more of my time, patience, and energy. I am blessed to have been able to continue part time. (Sometimes I question my sanity as I do 75% of what I did before but get 42% of the pay. Funny thing is I love it!) My job and my contacts at school are my sanity.
I am certain that teachers are indeed the very best people in the world. I live that reality every day. My stories are not often upbeat, but at lunch someone always asks. At the end of the day, somebody is bound to stick a head into my classroom to check on me. The number of shoulders inviting me to rest humbles me. And these aren’t long time friends. Most of my closest folks retired ahead of me. These are younger people who are at the beginning of their lives, families, and careers. They are often my daughters’ ages. Yet they reach out and I am strengthened by them.
Like all good teachers, they also invite me to be better than I truly am. Their support and expectations leave me determined to be what they imagine me to be.