Long ago, that’s what 4 years feels like, Burt needed only companion care. Or, I needed it for him so I could feel he was safe and not alone while I took time for myself. I always knew the time for myself was a necessity if I would make it through the slog. Along theContinue reading “It’s an aggressive disease”
Author Archives: therealtamara
Changes
Burt seems less restless, even calm, despite the endless chatter. He’ll say he’s scared, but it isn’t urgent. In other words, the prediction that this declining state would be “easier” has come to fruition. His aides can give him water or juice. He’s amenable to eating if they feed him. Burt now entertains himself inContinue reading “Changes”
Expert advice
I am no expert on this disease. I play one around my house, as it were. I am as flummoxed by new behaviors as the next hapless caregiver. We have been thrown under this bus. Each of us. The onset of dementia in your partner can lead to confusion. His and mine. Burt and IContinue reading “Expert advice”
He knows me, he knows me not
«That’s not a very LBD thing,« my support group leader mentions. It’s not, and I resent that. There had been «a promise« that I would not be forgotten. The word was people with Lewy Body Dementia tend to always remember their loved ones. It’s not like Alzheimer’s. Well, Burt knows I am important in hisContinue reading “He knows me, he knows me not”
He doesn’t call
Burt always called me during my respite hours. At one time, while he still could, he’d place the calls himself, relying on the numbers from the phone book I had made him. Then he started getting his aide to place the call or to text me to call him. It was intrusive. I picked upContinue reading “He doesn’t call”
Memories
What makes you feel nostalgic? A YouTube video of snow cascading outside a coffee shop with jazz pleasantly playing prompted «It’s a slow game, but it’s good« from Burt. Lately, Burt will comment on a “movie” he feels he’s watching even with the TV off, so mention of the «game« didn’t throw me. For me,Continue reading “Memories”
Call and response
Burt has taken to pontificating all night long. Or, almost all night. Twice when I said «it’s 4 in the morning now, you can try to sleep,« he’s agreeably responded “that’s all right with me.” I always refer to him as “honey” at 4a.m. He sleeps deep into the morning after that. Unlike some ofContinue reading “Call and response”
Serious
There is always one more worry. I know you’re shaking your head “just one?” Despite the comical appearance, these are meant to protect the skin on the heels. In fact, since he’s been bedbound, I have been put on red alert. The skin is susceptible to breaking down. Bed sores are a real and unpleasantContinue reading “Serious”
Redundant
My takeaway from the discussion was that the brain protects itself by holding redundancies. Well, that was one of the points I gleaned from Neil DeGrasse Tyson’s StarTalk with Daniel Levitan (and Chuck Knight) on music as our first language. Why redundancy? It would be a way for the brain to keep and store informationContinue reading “Redundant”
Amazing
In Down down up, I made the case that there was no denying Burt’s impairments. He’s no longer tethered to his Wall Street past, except for his frequent talk of money and time. He doesn’t see the companion of his journey by his side but lives with lots of imagined company. (Let me clarify, althoughContinue reading “Amazing”
this is our life 