In the October/November 2016 issue of Neurology Now magazine, actress Kimberly Williams-Paisley shares her experience about caring for her mother with primary progressive aphasia, a type of frontotemporal degeneration. (PSP and CBD are also types of frontotemporal degeneration.) The actress wants other families to avoid the mistakes she made. Though Brain Support Network does not include PPA among our four disorders, the article has some good advice for our group members as well.
Ms. Williams-Paisley has written a book titled Where the Light Gets In, described as “unflinching” by the Neurology Now article. If someone reads it, let me know if you’d recommend it and if it’s relevant to one of the disorders in our group.
Here are a few caregiver-related excerpts from the magazine article:
* The “family shouldered the burden for far too long.”
* The family allowed the mother to drive for far too long, even after several accidents.
* “[Driven by guilt, indecision, and uncertainty, the family…stumbled on. It was a situation Kim thought could have been avoided if the family had had a conversation with Linda before the disease robbed her of insight and judgment.”
* Family members should “not try to do all the caregiving on their own. It’s important for caregivers to reach out and ask for help,” Kim says.
* “One of the most profound lessons…learned…was this: Put your wishes in writing before you get sick. The fact that her mother, Linda, did not put her wishes for long-term care in writing caused Kim and her family a great deal of guilt and uncertainty.”
Here are some relevant suggestions from the physician quoted in the article:
* Become educated about the disease. Find resources.
* Teach patients how to communicate anger.
* Help patients cope with aphasia through music therapy or other expressive arts.
* Help patients focus on abilities the patient still has to make him or her feel better.
* Encourage patients and their families to participate in clinical trials.
* Speak out about the disease.
* Know that we are all imperfect.
Here’s a link to the full article:
Neurology Now
October/November 2016
Volume 12 – Issue 5, p 24–27
Shining A Light
Actress Kimberly Williams-Paisley wants to help other families dealing with primary progressive aphasia avoid the mistakes she and her family made in caring for her mother.
by Mary Bolster and Gina Roberts-Grey
Be sure not to miss the “web extra”!
Robin