Love and Forgetting: A husband and Wife’s Journey Through Dementia by Julie Macfie Sobol and Ken Sobol. (Toronto, Second Story Press, 2013.) Also available as an e-book.
The Sobols were not just a long-standing marriage, but a writing partnership as well, so when the disaster of dementia struck Ken, they bravely set out to write about it. Ken’s voice falls silent quite early in the story, and Julie has finished the book on her own.
Ken was eventually diagnosed with Lewy Body Disease, the form of dementia second most common after Alzheimer’s. Many of the symptoms the Sobols describe, however, will ring true to observers of other dementias, although the Lewy Body symptoms are stronger. The horror of it is the paranoia and fear that Ken winds up living in. I think though that it is very easy for someone with Alz or vascular dementia to also be in terror much of the time, because they just cannot understand the world around them.
There are so many poignant scenes in this account, and the Sobols have captured better than most the chaos and bewilderment of this on-going train wreck. Julie writes: “Chronic disease is an uninvited guest that moves into your house and then proceeds to act as if it’s the hose and you’re the guest. “I’ll set the rules,” the intruder tells you, standing in front of the door with arms folded tightly. “And please to remember there is no room for reasonable now, There is only ‘this is the way it is.”’ At another point she refers to it as “this shape-shifting tsunami of a disease.”
In the end, as Julie struggles with the home and community care system in Ontario (not that much different anywhere — over burdened and under-resourced, and not even really understanding what is going on out here in the homes of Canada), Julie writes about the core problem:
“If there was blame to be placed fro situations like this…it’s on our society as a whole. Science has artificially extended the human life span but society hasn’t yet faced head-on the consequences of that change. We don’t place enough value on caregiving in all its forms, professional and informal, and we refuse to question our Western obsession with extending life at any cost.”
She also touches on the mysterious benefits of this caregiving experience — “…the simple act of forcing yourself to slow down, working to find the emotional rhythm of the other person, can be beneficial….inviting us to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of the instinct.”
In the Afterward, Julie adds some words of advice for health care professionals and I think they are sound, including getting family doctors to be more active in the inevitable education process that must happen, and giving more dementia seminars in medical and nursing schools and social work programs.