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Caregiver chronicles the twists and turns of an altered life: Part 3
1. Caregiver chronicles the twists and turns of an altered life:
Part 3
Caregiver chronicles the twists and turns of an altered life: Part 3
By Angela Lunde July 2, 2015
The following is part 3 of a 4 part series, Altered Course. The series features an essay and excerpts
from a caregiver's journal. This is Rosalie's story.
Year 7: Decline.
The Lewy Body Dementia Association provided a checklist of symptoms and John had all of them.
Luckily, at a conference, I saw a brochure for a two week program at Mayo Clinic for people with
mild cognitive impairment and their care partners. I needed more tools to stay healthy and to adapt
to the changes ahead.
The HABIT program was a catalyst for both of us. It gave John tools to remain independent and it
gave me validation and tools to meet the challenges ahead. It also gave us a community and an
ongoing connection to resources.
"The fog is thickening. What remains intact is John's warm personality. How I cherish that. What are
the life lessons for me to learn in all of this? Do I have the courage to be open and take in these
lessons?"
My self-care included reading books written by caregivers. I learned so much from them and was
sustained by their courage, compassion, and sense of humor. Books include: "No Saints Around
Here", by Susan Allen Toth; "Through the Wilderness", by Robert and Anne Simpson; "Under the
Bridge Backwards", by Barbara Roy: "Ten Thousand Joys and Ten thousand Sorrows", by Olivia
Hoblitzelle, and others.
In addition, 3 women caregivers have become my fellow sojourners. Together we provide for each
other a safe place and time to be real and authentic. We can say anything and not be judged. We
learn from each other, celebrate our successes, share our joy and laugh at our missteps. We talk
about our need for sleep, our living with ambiguity and loss of companionship.
We are witnesses to the decline of our husbands. We relish the times when our husbands seem to be
on a plateau. It is a respite for us. We understand the emotional price of psychic surprises when we
think things are settled or stable only to find that we must meet another challenge. These women
reduce my isolation and loneliness.
To Be Continued.
July 02, 2015
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