Two books offer solid advice for caregivers

Q. Is there somewhere I can procure a copy of the seven-page booklet by Milton Bailey entitled, “Love, The Medicine for Alzheimer’s”? I’d like to give it to a nursing home where my late brother was well cared for.

• Donna Steckling,

Prospect Heights, Ill.
A. Please understand that while Florida caregiver Bailey and I are flattered - we’ve received more than a dozen similar requests - we’re in agreement that the best of his common sense thoughts and ideas were captured in my earlier column.

We feel your time would be better spent searching out two long-established, highly acclaimed resource books on Alzheimer’s disease, guides that further direct attention to the difficult and challenging jobs that fall to caregivers.

The first is the revised edition of “The 36-Hour Day,” by Nancy Mace and Dr. Peter V. Rabins. The inscription reads: “This book is dedicated to everyone who gives a ‘36-hour day’ to the care of a person with a dementing illness.”

Rather than blather about the history of this uncommonly successful caregiver companion, let’s turn to the content pages to underscore the detail - and comprehensiveness - of the book:

Chapter 5 is “Problems Arising in Daily Care” on meal preparation, weight loss, bathing, wheelchairs, bowel incontinence, followed by Chapter 6, “Medical Problems,” and Chapter 7, “Problems of Behavior” on repetitious action, stubbornness and uncooperativeness, using medications, inappropriate sexual behavior and behavior management.

Other chapters touch upon “Getting Outside Help” and “How Caring for an Impaired Person Affects You,” while Chapter 14 reaches out to “Children and Teen-agers.” Additionally, there’s advice on where to buy or rent supplies, organizations to contact and a section on “Further Reading.”

Is it any wonder that “The 36-Hour Day” is in most libraries, in the collection of many Alzheimer’s Association chapters and has been published in 10 foreign countries? The American Medical Association says, “Physicians can confidently recommend (this book) to the families of their patients. It is also a guide physicians themselves can read.”

Here’s the deal-breaker for me: “The 36-Hour Day” is brimming with tips, yet it’s also convincingly empathetic. This feat is accomplished through italicized vignettes. Consider, an Alzheimer’s patient and his long-suffering wife go to dinner at the son and daughter-in-law’s home. Throughout, Pop won’t take his hat off, nor will he talk.

Once the meal is ended, Pop yells, “Let’s get out of here before she poisons us.”

The son, an ignoramus, browbeats his mother: “There is no reason for Dad to act this way. You’re letting him ruin your life.”

The caregiver’s best friend explains, “Episodes like this can wear out even the most patient person. It seems as if they always come when we are most tired. … (The) first step in dealing with anger is to know what you can reasonably expect from a person with a dementing illness and what is happening to the brain to cause irritating behavior.”

The other book I would recommend is “Loss of Self, A Family Resource for the Care of Alzheimer’s Disease and Related Disorders,” by Dr. Donna Cohen and Dr. Carl Eisdorfer. I celebrate the directness of the revised edition, 2001: “The challenge of caring is to be close to the patient and distant at the same time. You have to regard your relative (wife, mother, et. al.) as a loved one who is suffering and as a patient with a disease over which you have little control. Developing at least a modest amount of emotional distance is helpful.”

Later, the authors recommend - indeed, all but demand - that the caregiver join a support group, adding: “Sharing normalizes the experience of wishing you or the patient to be dead.” Tough, candid counsel from the front lines of caregiving.

Prime Notes

• Good works overlooked: Marvin Rogoff, 77, of Boca Raton, Fla., selflessly collects golf clubs for kids, calling his cause Golf Fore Kids! He’s given away more than 26,000 clubs. Source: Sports Illustrated.
• The National Council on Problem Gambling says upwards of 11 percent of all seniors gamble “more than they should.”
• Good news: Deaths from heart disease are down 3.6 percent; cancer down 2.2 percent; stroke down 4.8 percent, and flu-pneumonia down 3.1 percent.
• Bad news: Alzheimer’s deaths jumped 5.9 percent. Source: Centers for Disease Control and Prevention.
• Man bites dog news: The American Medical Association suggests doctors take acting lessons. Time magazine writes, “If they don’t have empathy for patients, they can at least learn to fake it.”