Sixteen months after Barry Tutor’s widowed mother was diagnosed with Alzheimer’s disease, his 58-year-old wife was diagnosed with early onset Alzheimer’s. Suddenly, he was thrust into the role of sole caregiver to two severely impaired people facing death sentences, one his “dear wife and best friend,” leaving him no one with whom he could share his grief, exhaustion, and anger.
His book, Never Giving Up & Never Wanting To: A Caregiver’s Journey, shares his story and offers advice to those facing similar situations.
Tutor makes explicit just how burdensome his life is, filled with the daily chores of caring totally for his helpless wife (his mother ended up in a facility) and trying to function on no more than four hours of sleep a night. It is no wonder, then, that his book reads, on occasion, like an outpouring of fury.
Written ostensibly to help others cope with the superhuman task of caring for what Tutor calls Alzheimer’s “victims,” it is equally a place for Tutor to vent. He takes the opportunity to single out family members and friends who abandoned or failed him in other ways, which makes for some uncomfortable reading. In a chapter called “People,” he sums up the disappointment he felt by writing, “Most everybody forgets all the promises of help when you need it the most.”
For the most part, however, the author has tried to provide a roadmap to caregiving through the progressive stages of a ghastly illness based on his experience. He covers such important subjects as how to plan for the future, how to control the caregiving environment, the phenomenon of “sundowning” (wandering), and what to expect from hospice care. For readers looking for a raw view of the horrors of Alzheimer’s caregiving, his book might be a place to start. For others, books like the now-classic The 36-Hour Day might provide more objective, less emotionally fraught advice.
Also available in hardcover and ebook.