Sometimes caregiving seems like living in a bubble, a little isolated from the world; maybe an old guy just becomes more aware of that feeling. Interactions with folks just aren’t as frequent for one thing, and some of the isolation is a choice (my wife used to be a newshound, and loved to laugh with The Ellen Show, but we hardly have the TV on anymore for various reasons, and because we play much more music).
I guess I became a caregiver suddenly when we were stunned with my wife’s diagnosis (see my poem “Matter of Fact” via link here or above, published in Neurology) and she stopped working, now many years ago. I became the medical care manager, the household manager, the hired caregiver manager, the power of attorney, and despite lots of wonderful help, there were and are many tasks that could not get delegated (the way a bossy old guy would have it!)
Anyway, even though her situation changed in 2018 (isn’t that a lovely vague ambiguity?) the old guy had time to read a few things that were pertinent or interesting (mind expanding, though frankly, not all that practical in a nuts and bolts way).
The New Yorker piece by Larissa MacFarquhar, The Comforting Fictions of Dementia Care, includes the striking statement: “In dementia care, everybody lies.” Although it’s ostensibly a piece about reminiscence therapy, it explores ethical issues and touches on subjects from improv comedy to theater to a philosophical thought experiment proposed by Robert Nozick. Kinda long, typical for that magazine of course, but an amazing read.
The Spectrum of Hope : A New and Optimistic Approach to Thinking about Alzheimer’s Disease and Other Dementias is a catchy title, right? Written by neurologist Dr. Gayatri Devi (with whom I have no affiliation), its positive attitude is tempered with a bit of realism, which made it a nice read for me.
Caregiving seemed to get more recognition in 2018. If one does a search for caregiving reviews on PubMed.gov, there seem to be 14/16 hits that are related to dementia caregiving in English.
OK, some old guys seem to be into Twitter, me not so much, but there is an outstanding advocate for caregiving, Meryl Comer, who tweets. She’s a caregiver, an author, a board member and speaker at important meetings for caregiving, so I follow her.
Just a note about what I have outside my bubble: I don’t like professional helping videos much, they seem overproduced and I get impatient, so I wish the AARP Caregiving Tips/Hacks were more text oriented. And Pinterest Caregiving Tips/Hacks are just too chaotic, even with my own special computer glasses hack! [check out the links above though, you might like them].
So here’s to a Happy New Year for 2019!
[If you’re so inclined, I did write up my take on last year’s AD clinical research , “2018: Rx Failure, FDA, $2B, Big Names, AT(N) Biomarkers,” on my companion blog, AlzheimerGadfly.net]
