Bette Midler as my jam today was in contradiction to the pity party I was engaging in. Burt tends to make less sense than ever of late. He still expects me to fill in all the blanks. He’ll cite a destination for an activity of an unspecified type. I am charged with knowing both whereContinue reading “Know what?”
Author Archives: therealtamara
Did I mention?
Anxiety is a huge factor in Lewy Body Dementia. I presume that those who were calm and composed prior to dx experience bouts of this distress once they enter Lewy-land. Burt had more than his share for years before any symptoms. In fact, he was plagued by lifelong panic attacks. His illness has made theContinue reading “Did I mention?”
This
Musings
Did this hardship come along To crush my spirit? To enrich my skills as a poet of feelings? To test and strengthen my heart? The “why me” and the “why us” are a miserable way to greet adversity. Miserable. And often hard to avoid or circumvent. “Hard” means more difficult, not impossible. Or impassable. CourageContinue reading “Musings”
My journey alongside Burt
Thank you for those of you sincerely concerned about me as I struggle. I am processing all that this journey entails. The sadness. The anger. The worry. The disappointments. The tedium and the unpredictability. The sheer physicality of the challenges of care tell me I have to train harder to meet this particular Everest. IContinue reading “My journey alongside Burt”
When in doubt or crisis
throw some love at it Seriously, and any dementia is a serious illness, there are positives to caregiving. [See also here] In the midst of declines and the unpredictability of what I am experiencing, staying clear of depression is a necessity. Holding onto the one reason I am here is too. So reassuring him andContinue reading “When in doubt or crisis”
Emotions
I have talked about how emotional Burt has been. Lewy Body Dementia is often described as a roller coaster (hate ’em) because of fluctuating symptoms and variable every thing. It’s also a roller coaster of moods that can shift in a minute or a heartbeat or an hour. For him, I would think those changesContinue reading “Emotions”
Loss
I went into the living room to writea poem of mourning.. about mourning about ambiguous loss and though it presented as my poems usually do with patterns of words I could not or would not write it or allow it to write itself. That sense that we have lost someone who is still alive isContinue reading “Loss”
There’s a lot to be said
From pretty much day one of Burt’s symptoms, I looked to getting help. Initially, it was because I needed my time. I wanted to get 3 or 4 hours several times a week to get out. It seemed an existential need for me. In the parlance of our dementia communities, it’s deemed “self-care.” Some ofContinue reading “There’s a lot to be said”
this is our life 