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”
Author Archives: TheRealTamara
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”
Good news
For some good news
I have mentioned Burt’s enjoying people as a highlight of his disease. He has grown more outgoing over most of the course of his dementia. During the first phase of his recent dip, he stopped engaging as he had. Part of this is because he doesn’t recognize the neighbors as he used. Lately, he’s backContinue reading “For some good news”
Showtime
It’s a great phrase and describes pretty well what it’s like when our loved ones rise to an occasion. They will interact with old friends as they might have before their disease came into our lives. I am not sure it’s really play acting as the term implies, however. I think it is a wayContinue reading “Showtime”
The battle continues
Here are some of the things Burt’s lost along the road our journey has taken: The construct of time. It is a made-up thing. He was right about that early on. He would say, “Why is it day or night?” Well, not so much right on that point. Time is a man-imposed measure, but natureContinue reading “The battle continues”
Another party
When we went to the neighborhood settlement house (as they used to be called) at Thanksgiving, Burt had an amazing time. Today, although he’s said he wants to go to every event there, Burt resisted going. We got ourselves organized for a good start by noon. He enjoyed the tea and tea cakes. He hadContinue reading “Another party”
this is our life 