Pam White and her son, Banker, by Marian Williams Steele.
Many people fear that Alzheimer’s disease in the family may be passed on to children and grandchildren. According to the Alzheimer’s Association, research has shown that those who have a parent, brother, sister, or child with Alzheimer’s are more likely to develop the disease. Early-onset Alzheimer’s disease, where symptoms first appear before the age of 65, is also more likely to cluster within families, sometimes with several generations affected.
As an example, Pam White, 67, was a model, social worker, mother of three, and the daughter of a renowned painter, Marian Williams Steele, who died of Alzheimer’s at 89 years old in 2009. To honor her mother, Pam set out to write a book exploring both her mother’s art and her unfortunate descent into the disease. The project was called “The Genius of Marian.” Only a few short months into the work, however, Pam, at the age of 61, developed the disease herself, and stopped writing the manuscript.
Pam’s eldest son, Banker White, a documentary filmmaker, decided to pick up where his mother left off in the form of a documentary focusing on his mother’s and grandmother’s Alzheimer’s and his grandmother’s artwork. The result was “The Genius of Marian,” which is co-produced with his wife Anna Fitch. The documentary (named after the book Pam was writing) aired last night on PBS and is now available online. It spans the first three years of Pam’s illness, including footage of her everyday life and progressive illness and the therapeutic benefits of old family videos and Marian’s whimsical paintings that hang on the walls of the White’s Massachusetts home.
The film provides an inside look at Pam’s Alzheimer’s and includes footage at doctor visits, tense conversations about medication, and many confused moments and absent stares that cross Pam’s face. One instance in the film includes footage of Pam forgetting how to dress herself. Another includes an appointment with her neurologist, where she can’t name the image on a flash card (a bench) and doesn’t know what year it is (“19-something”—it was 2011).
For years, the White family kept Pam’s condition a secret, while she vacillated between denial and acceptance. “I don’t have it. Yes I do. I do. I have it,” she says in the film. To care for Pam at home, her husband, Ed White, 69, retired from his investment management business. A part-time caregiver helps care for Pam, and their daughter, Devon, 37, who lives close-by, also visits often.
When asked about his role as a husband and caregiver, Ed mentions that he sometimes feels like he is “caged.” According to Ed, “I can’t even go buy a paintbrush without going through the big rigmarole of getting Mom dressed up and getting in the car,” Ed says in the film. “So I just have to—forget it. So? Remember the phenomenal life that she’s given me…. So I sure as hell owe her this, even if it gets frustrating.”
At the end of the film, Pam refers to her Alzheimer’s as “a little glitch” that she has developed. According to Pam, “Initially, I was quite distressed and upset about it, but it doesn’t really matter. It doesn’t really change anything, so I don’t feel sad and I don’t feel regret. I feel blessed that I have this wonderful family and a husband who is extraordinarily wonderful. I just feel like, maybe the way my mother did before she was dying. It just was the way it was. And remembering, keeping, cherishing all the times I had with friends and family. So it’s all good. No regrets.”
Many of us are in situations similar to the Whites. If you are caring for a loved one with dementia, please read our blog post on caregiver training for some helpful resources. For more details on art therapy, please also read about a fascinating nationwide program through the Museum of Modern Art that makes art accessible to people with dementia.
If you care for a loved one with dementia at home, it is always a good idea to plan for the future, just in case your loved one needs more adaptations and assistance than you can provide. Nursing homes in Northern Virginia cost $9,000 – $12,000 per month. Life Care Planning and Medicaid Asset Protection is the process of protecting your loved one from having to go broke paying for nursing home care, while also helping ensure that he or she gets the best possible care and maintains the highest possible quality of life, whether at home or, in the future, in an assisted living facility or nursing home. Learn more at https://web.archive.org/web/20100830054343/http://www.virginiaelderlaw.com:80/? and call us at our Virginia Elder Law Fairfax office at 703-691-1888 or at our Virginia Elder Law Fredericksburg office at 540-479-1435 to make an appointment for a consultation.
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About Evan H Farr, CELA, CAP
