Burt expects me to deliver my best self. He knows it doesn’t always happen. “I’m doing the best I can” is often dismissed as not good enough. Sometimes, it’s met without challenge and accepted. Forgiven or forgotten. The other day, when we established that no aide would be with us, Burt asked me if IContinue reading “Giving my best. Doing my best”
Tag Archives: #challenges
The confusion
It’s hard to resist the urge to say “really? Really, you don’t know that your first wife was named Susan?” Just one of a series of “really’s” that his infliction brings to the fore. As we’re on a high of successes, his confusion is more unwelcome. I feel it like the contradiction pulling me downContinue reading “The confusion”
Support
There is a lot of support for the family member in charge of care. As caregivers, we are the better for taking it. Help is offered in the form of group sessions (now conveniently on Zoom); phone support from trained social workers; and hotline responses for urgent matters. There are myriad associations offering this invaluableContinue reading “Support”
When things change
We have a rhythm to our journey. Like the clacking of train tracks, it tends to be uneven. His mood changes, and his love, constant but as changeable as the seasons of his moods, comes under their fire. It ebbs and flows but always can be seen rippling under the changes. He returns to meContinue reading “When things change”
Calm down
When I am unable to accomplish something with Burt, I don’t stay calm. Burt, sounding reasonable, tells me to calm down. This guidance is wise. My panicking and consequently screaming louder at him tends to have the unwelcome opposite effect. He has done nothing wrong as he is quick to point out. For the mostContinue reading “Calm down”
If I had my druthers…
Today, I had an intensely isolated time to spend with Burt. It was cold and icy, weather conditions that kept his aide home. They also deterred us from venturing out. The short trip to the lobby – just to get out – had him grumbling over the cold. Preparations for that trip took so longContinue reading “If I had my druthers…”
Rehab
Burt landed in a nursing center/rehab after a hospitalization for hip repair. I was there when he fell and like on other occasions when I was there but couldn’t say exactly what happened…. I had contracted covid and was on paxlovid and trying to stay away from him. I slept in the living room, butContinue reading “Rehab”
Early signs, or what did I miss?
Listlessness, which was unlike the active guy I knew, was a warning. One day, out of the blue, he forgot how to work the remote. He had been making and planning our TV selections for a long time. He took pleasure in following the guide on the set to decide what we’d watch. This inContinue reading “Early signs, or what did I miss?”
Difficult Behaviors
My love exhibited unusual, difficult behaviors early in our journey. Firing caregivers was one of them. He could be aggressive and combative. I had reason to worry. And wonder. Things have changed pretty much, but I guess as long as he has a progressive, unpredictable disease, I will have reason to worry.
Sharing
Burt just asked one of our neighbors if he knew about his dementia. Of course he did. Burt said, “It’s the worst.” Our kind neighbor said,”Yes.” Recently, I wondered what Burt’s understanding of his disease actually means. I guess I am trying to fathom how deeply he comprehends that he has a brain disease. HisContinue reading “Sharing”
this is our life 