My mission since Burt’s diagnosis [the big scary dx] more than 4 years ago has been to protect him. Of course. That’s it. I have pinpointed my malaise. I can’t fix this as one of the prompts in my grief writing support group put it. That phrase sums up my frustration in the most succinctContinue reading “To care and protect”
Author Archives: TheRealTamara
The honeymoon is over
It’s not for me. I am saddened and relieved that I am no longer the most important person in Burt’s life. No, there isn’t anyone else, although during Lewy’s tenure, he’s had infatuations. Early in the journey, he asked our lawyer about divorce so he could date one of his caregivers. Why not? She wasContinue reading “The honeymoon is over”
Collateral damage
Burt is in the line of fire as Lewy takes more and more of his self. I feel for his losses as I do for my own. He spoke of himself in the third person today. “Does Burt know?,” he asked. I don’t understand so much of what he utters these days, but I heardContinue reading “Collateral damage”
Slipping away
I hear myself saying, “I love you, truly, madly, deeply.” Why am I always quoting, inserting film titles or song lyrics?, I ask myself with mild annoyance at the habit of anchoring my affections in cultural history. I think it’s to acknowledge how normal it is. To love and to care, to adore the manContinue reading “Slipping away”
Time passes
A gratitude Time is an ironic boss. It passes. It moves so slowly that it’s as if someone forgot to release the break. At the same time (or by the same token), it rushes past us in a blur. In those instances (in those moments), we are caught off guard by the whirlwind. We sometimesContinue reading “Time passes”
Me me me Time
A Lament Let’s face it, I have me-time even when I sit with Burt. (How do you think these blogs get written?) Most of the time, there are no pressing and time-consuming needs. There’s a little quiet conversation. It’s not challenging or sustained. Often, it doesn’t even include me as Burt’s focused on some fantomContinue reading “Me me me Time”
It’s an aggressive disease
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”
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”
this is our life 