September 8, 2019: “Do you want me to read you the really sad poem I wrote last week?” Lilly* asks. “Gee Lilly, I don’t know,” I say. “Not if it’s really sad.” I’m feeling a little melancholy myself. “I’m gonna read it to you anyway.” Lilly has a mind of her own, no doubt about… Continue reading alone: a heartbreaking poem by 89-year-old lilly who lives with dementia
June 26, 2019: I wrote this a month or two before I had to put little Pia Roma to sleep on June 29, 2018. I was in anguish for months, hoping she would die a natural death before I had to euthanize her so she wouldn’t suffer. Pia had been Mom’s beloved companion for about… Continue reading euthanasia
At some point in most dementia care partners’ experience they will find themselves on this battleground: wishing for their loved one the peace that comes with death, while feeling immense grief at the prospect of losing them. The resulting mix of emotions — compassion, guilt, longing, regret, sorrow and more — is exceedingly difficult to… Continue reading eternal anguish
When I am living with Alzheimer disease, which I expect I will be one day, I want to do the things I love to do for as long as possible, and to be offered the opportunity to try new, engaging and enriching activities that will fill the last chapter of my life with joy and… Continue reading 7 kinds of therapy i don’t want when i’m living with alzheimer disease
November 16, 2018: I doubt I will ever get over the deep grief I feel each November 16, the day my mother was relocated to #DementiaJail in 2012. All I can do is try to process it in whatever way I can. This year, once again, it’s with poetry. the rendering ©2018 punkie the rendering nothing… Continue reading a daughter’s rendering and remembering
Some days I miss my home and my mom more than others. I think about her, and my grandmothers, and my grandmothers’ mothers and grandmothers, and their grandmothers and so on. Ascendants: those from whom a person is descended, or from whom she derives her birth, however remote they may be. Everyone has two ascendants… Continue reading ascendants: awakening to where and whom we came from
June 23, 2018: I discover one of my mother’s nightgowns buried in a plastic bag in the back of a closet when I’m packing to move. There’s a pair of shoes (black patent leather), a black and white polka dot skirt, and a white blouse in the bag too. They were all hers. I pull… Continue reading safety pins & call bells
The state of dementia care (i.e. largely lacking and often substandard) is the same everywhere. I know because I get comments and messages to that effect from around the world. This one, from long-time Australian subscriber Kate G. confirms what I opined in hundreds of studies make me mad as hell. Kate wrote: Dearest and Amazing… Continue reading sometimes they just don’t get it in australia either
In March 2017, I wrote an open letter to Québec’s Minister of Health regarding the rationing of incontinence products in the province’s long-term care facilities. The letter includes a two-minute video, which demonstrates the amount of fluid required to fill an incontinence brief to overflowing, as I found my mother’s to be on numerous occasions.… Continue reading hail mary i need to pee
I posted “hidden restraints: hidden abuse” on Facebook with this lead in: “Physical restraints aren’t always as obvious as safety belts and prison bars. I still get upset when I watch these videos; I just feel this is so wrong. On the other hand, I’m grateful I was there to liberate my mom each day,… Continue reading sue clarke says: they locked up my mom
My Alzheimer's Story 