When we started our ride with Lewy, I was cheered± by one assurance. Unlike Alzheimer’s the person with this dementia will always know his/her spouse. It’s a tricky point. They didn’t tell me that he would tell me that his wife was dead; or that he hates her. They didn’t say that there would beContinue reading “Recognition”
Author Archives: TheRealTamara
Speaking of work
Burt was looking for a job. I know I mentioned that a few times. It’s hard to dissuade him, and this delusion that he needs to work is persistent. The other night, he was intent and preoccupied with some sort of project. He’s always managing and directing others at his job. Work kept him upContinue reading “Speaking of work”
Figuring it out
Okay, this is a bit weird. One of my fears is that by the time I get the hang of caring for Burt, it will be too late. It’s a huge learning curve, at least for me. So many things to consider and do. I want him comfortable, safe, and secure. I want to love himContinue reading “Figuring it out”
Daydreaming
Burt always was a daydreaming kind of guy. I’ve been saying he wasn’t an imaginative guy, but clearly, he always was. In those days it was clear to him that he’d been imagining he was managing the Mets. It was cute that he insisted they also hire me. He knew fantasy from reality. Now, heContinue reading “Daydreaming”
Caring. Day in/day out.
My role as caregiver is certainly not an easy job. I am not saying this out of self-congratulations or pity. I try not to allow it to limit or overwhelm me. In order to, you know, keep on keeping on, I have to stay strong and centered. Burt has often told me not to getContinue reading “Caring. Day in/day out.”
Foodie
Sometimes, something just predisposes us to enjoy a food. Cooking has been pretty much out of my vocabulary for quite a while. My favorite “meals” lately have involved some measure of yogurt, usually with nuts, fruit, and granola. (No hot food, so maybe that was what predisposed me.) I mix a breakfast cereal mush forContinue reading “Foodie”
Why I am up at 4
My circadian clock is resetting. I hit the sack at or before 8 or 9pm. It’s a full seven to eight hours by the time the clock ticks to 4am. Why so early to bed? you ask. Exactly. I lie down to help settle Burt, who after a nap from 6pm is suddenly on aContinue reading “Why I am up at 4”
Transition
It’s in my journal. “Burt has so much trouble with transitions.”* Then it hits me, Burt’s transitions drive me nuts. It takes so long for him to get up out of his chair. I timed it one day, and it took 45 minutes. That was with two of us assisting him. I just get soContinue reading “Transition”
Rest
There is considerable chaos Among the Chux on his bed.He moans, complaining as heSleeps. If the dreams are hardI will hear their wild stories inThe morning as he awakes toShare the narratives of hisImaginings and the pains hisMoans express. Yet his sleepIs fulsome, generous, relaxed
A good week. I’m still stressed. But it was good.
Here I am. I am affirming my positives despite the stress of last week. Let me count the ways: [I had a little extra stress from the unexpectedly threatening phone call that I got on Friday. You know that feeling when you shake everything off and then have a nightmare.] Today, the hospital bed arrivedContinue reading “A good week. I’m still stressed. But it was good.”
this is our life 