By Frank Broyles, University of Arkansas, Razorback Athletic Director Emeritus
If you are in the market to understand how to care for someone with Alzheimer’s Disease, this might just be the only book you need. It is ninety-one pages, wire bound, of plain-spoken direct instructions. “Do this.” “Don’t do that.” In my experience he covers the gamut of caregiving tasks and does it well. The enclosed pamphlet of Tips and Strategies is a gem of fast reminders.
There are stacks of books on Alzheimer’s disease for every reader out there. Books full of statistics, understandings of the disease itself, causes, treatments, advancements in science, theories, various common and uncommon behaviors, ad infinitum. They each serve the reader well. Broyles’ Playbook is a distillation of just what a caregiver needs to know in order to provide good care. Nothing more.
As social workers, we often notice that caregivers either “get it” or they don’t. Frequently, it doesn’t even matter what type of dementia a patient may have; they simply need to be cared for by someone who “gets it.” Broyles gets it and passes this knowledge on. This is a very useful resource.
Ah, but I have to be honest and report some comments on the downside. The booklet itself has some of the worst print I have ever tried to read. Much of the text is in grey rather than black and is hard on the eyeballs. The author may know Alzheimers but he doesn’t know vision-impairment. And the wire binding is just a scooch too tight making the pages hard to turn.
Also, under the category of “political correctness,” Broyles’ frequent mention of support from “church” sticks out to me as slightly offensive. I am sure he intended to include support from synagogues, temples, and other places of worship and spirituality. Trouble is he only said “church.” It seemed either quaintly old-fashioned or accidentally rude.
Boyles also assumed the caregiver, once the patient had moved to facility care, would visit “daily.” This is an assumption loaded with guilt. Many people expect close family to visit nursing home patients daily. It might be a great thing. Or it might be awful. My own parents suffered from this assumption. My mother (and I) had tended my father at home for several years before he had to go to facility care. My mother, who did not drive anymore, tried to visit my dad daily. It was difficult getting her there in all sorts of weather. More tragically, my father did not want to see her daily. Although my father was an excellent husband, in his dementia, he wanted to flirt with his nurses and aides. He wanted to have chocolate pudding on his chin. He definitely did not want his wife wiping his face and telling him to leave the nurses alone. Visits were challenging for both of them and my mother kept insisting since she felt daily visits were expected of her. My mother felt deep guilt if she skipped a day. My father had no particular sense of time so he wasn’t missing her absence.
Boyles wrote this book after years of caregiving for his wife. There was one issue he did not mention which would be helpful. It has been my experience that one of the hardest parts of caregiving for a mentally impaired spouse is giving up the spouse as consultant in daily life. The urge to ask one’s spouse’s opinion on any number of things is a huge barrier to “getting” dementia care. This book instructs the caregiver to just make the decision for the spouse, or at least reduce the choices to two fully-formed options. It is far easier for some couples than for others. We had one Alzheimer’s wife bean her husband with a frying pan when he made a meal decision she didn’t like. We have seen the caregiving spouse drive his wife to tears trying to get her to decide if he should sell her car. He stated he had never, nor would he ever, make such a big decision without her input. Of course, if Boyles had gotten into such variations, his booklet wouldn’t be the simple guide it is.
Kudos, Coach Boyles!
Available at http://www.alz.org and Broylesfoundation.com