A client of mine lost her husband to Alzheimer’s last year. As his main care giver, she read everything she could find about people’s personal struggles with Alzheimer’s. This literary journey hasn’t stopped with his death. In her grief, she continues to read about other families’ experiences and the disease that took her loved one.
I read them to find out how other people dealt with it. You know, what I could have maybe done differently? And what I did right, she said.
This is her list of titles:
Before I Forget by B. Smith and Dan Gasby.
Come Back Early Today, by Marie Marley, Ph.D.
Slow Dancing With a Stranger by Meryl Comer.
The Long Hello by Cathie Barrie.
To Johnny With Love by Dagmar Christine Albert
My Mom, My Hero by Lisa R. Hirsch.
When Breath Becomes Air by Paul Kalanithi.
She also recommended two books that are fiction based on fact:
Inside the O’Briens by Lisa Genova and
Turn of Mind by Alice La Plante.
Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read. I hope you find new solutions and humour as well as pathos in these books.
Thanks, Donna, for sharing.
My mother had Alzheimer’s. Well, actually the doctor said it wasn’t possible at that time to distinguish between Alzheimer’s and other similar conditions. This poem is a response to her condition and the research I did at the time. And no, it doesn’t rhyme.
Grasping at Research Straws
Frontotemporal dementia (FTD)
not so innocent as online florists:
scientists redefining quality of life.
A protein—progranulin-necessary to
nerve cell function; to remembering
luncheon dates and appropriate
behavior for same.
Clinical research indicates inadequate
progranulin production’s a genetic
mutation causing FTD.
Too late for Mother. Send her roses;
long-stemmed burgundy petals
peeling down, like the velvet dress
I once found in the back of her closet:
deliciously sexy on anyone capable
of flirtation and desire…
does progranulin or lack of it affect
Initial research may lead to treatment
in time, but Mother hovers nears the finish.
I wish researchers Mackenzie and Feldman
Mothers with progranulin rich minds.
frontal portal into the brain:
sensors removed, wires crossed.
isolation, depression, short circuitry
rerouting synapse to blank space.
gummed up placque, synapse
box cars skidding off the rails.
scientists probe cause and effect:
in effect the brain shrivels
and we die, wandering homeless
in a vast carapace of skin.