Facing Alzheimer's: Family Caregivers Speak

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Summary: Coping with Alzheimer's
Review: A man with Alzheimer's disease was making his wife crazy, every night getting out of bed and dragging his pillow and blanket to the floor. Awaking several times throughout the night to return him to bed was ruining her sleep, she said, as well as his.

Finally, another woman in her support group spoke up to say she saw nothing wrong with him sleeping on the floor, if it made him happy. The exhausted woman thought about it and, gratefully, agreed.

Anyone who has ever scoffed at a support group doesn't understand that such a gathering may be the only place where a person in crisis can get advice like that. It is also the only place you'll come across a collection of people like the eight women profiled in "Facing Alzheimer's" by Patricia Brown Coughlan.

People whose worlds have been turned upside down by a loved one's dementia learn that coping calls for creative and unorthodox measures, often different from what medical professionals might suggest or the neighbors approve of. The best instructors are often people with 24-hour experience, like the ones in this book, women who took over the primary care of husbands diagnosed with the progressive brain disease.

The book grew out of Coughlan's graduate studies in gerontology at Sonoma State University and her personal experience with her afflicted grandmother.

Coughlan's women talk about how it is to suffer the loss of a mate to Alzheimer's disease, what some call a "never-ending funeral."

"He's here, but he's gone," says Angie, of Hugo, her husband of 30 years and a once-successful businessman. Bonnie, whose husband was diagnosed with Alzheimer's at age 60, shares the despair of being with a partner who still looks the same, but whose personality has disappeared. "I still wanted him to talk to me, and the poor man couldn't. And I'd just plead, you know, 'Please, Henry, talk to me.'"

But, just as the women counsel others in their situation, they learned how to move beyond despair and dread in order to care for their husbands and save themselves. They represent a generation of women raised to be "nice" and "not complain". Yet, when their husbands got sick, they got tough. They became ferocious advocates, taking on unfeeling doctors, surly nursing home attendants, rude health insurance processors. Caregivers, says Coughlan, eventually recognize that they know better than the professionals how to individually handle thier Alzheimer patients.

Sonoma County readers can take pride in this book, not only because the author lives in Sebastopol, but because her eight wonderful subjects also live in the region. The agencies and programs they turned to for support are local, including the Sonoma County Alzheimer's Task Force, Catholic Charities Alzheimer's Respite Center, and the Sonoma County Ombudsman Program. Surely there will be many people across the country who will read this book and wish that they had the same kind of services in their community.

All the caregivers in her book are women, and Coughlan explains that reflects reality. "At the present time, caregiving is still something that falls most heavily upon women." She does, however, note that there are many men who provide care for their sick wives and parents, including her own grandfather. No matter who does it, it's a full time job.

Not only is Coughlan respectful and admiring of her subjects, she obviously likes them. So will the reader. After all the nightmare years ending with her husband's death, Bonnie wishes her late husband well. "I hope Henry's in a great body somewhere, having great sex."

The women were obviously willing to speak frankly, on just about every subject. "Have I ever had self-pity? Yes. I felt cheated, and abused, and all the other unpleasant emotions", says Mary.

As much as the women show great sensitivity for their husbands' tragic changes, so does Coughlan sympathize with the women. "If Hugo's vision of his future self was destroyed by the specter of an incompetent man being pushed in a wheelchair, then Angie's vision of her future self was destroyed by the vision of a woman pushing one."

Coughlan also interviewed leaders of Alzheimer support groups who offer special insight into how this memory-robbing disease is different from ordinary forgetfulness. "It's not: 'I've lost my keys'; it's 'What do keys do?'"

The book includes a list of Alzheimer's organizations, how to do a living will, financial planning strategies, and a good bibliography of other resource books on Alzheimer's.

There's also a reminder to enjoy the present, because while these eight women are very special there is nothing exclusive about a disease that affects more than 4 million Americans. Aileen's advice: "Take time to do what you want to do. My neighbors, ever since Louie got sick, and they saw what happened, they go on a cruise every year."

On a personal note, I'm familiar with the Santa Rosa Alzheimer's support group and recognize some of the women in this book. The first time I met the group I was a reporter doing a story on the disease and how it affects families. A year later I was back, sitting in the same circle, minus my notebook, not a journalist but the daughter of a newly diagnosed Alzheimer patient. I'm not sure if it was Mabel or Mary, but someone very kind passed me the kleenex.

Rating:
Summary: Patty is my mother. She is still involved in volunteer work.
Review: Advice and support from women who lived through their husbands' decline, and who talk frankly about their experiences and the agonizing decisions they had to make. Includes helpful organizations and insurance benefits

Rating:
Summary: Healing Words About Alzheimer's
Review: In the fall of 1988, Patricia Brown Coughlan enrolled as a graduate student at Sonoma State University, and found herself drawn to classes dealing with gerontology, the study of aging. As part of her studies, she began attending meetings of a Santa Rosa-based Alzheimer's support group.

A dozen years before, Coughlan's grandmother had begun to show symptoms of Alzheimer's, a neurological disorder with psychological fallout. Already sensitized by her own personal experience, Coughlan was touched and inspired by the compassion, bravery, humor, and sheer practicality that characterized the women in the support group.

She requested permission to interview some of them for her master's thesis on women in the caregiving role. Her extensive interviews with eight of the group members eventually became "Facing Alzheimer's", a remarkable mixture of oral history, demystification, and practical information for anyone dealing with the disease. Although the book deals primarily with women, specificaly wives, as caregivers, much of the information it contains is applicable to anyone placed in a similar situation.

In spite of its sobering subject matter, Coughlan's work is never grim nor gloomy. In fact, once one has taken the mental step of deciding to "face Alzheimer's", the book is pretty much of a page-turner, as the reader connects with each of the eight storytellers, becomes familiar with her situation, and begins to understand the indomitable spirit that, in spite of varied life circumstances and personality differences, characterizes all of these women.

On one level, this is a rich emotional document, with the words and stories of Aileen, Mary, Bonnie, Helen, Irene, Edith, and Angie woven throughout the text to give the reader a deep and personal look into the actual life of an Alzheimer's caregiver. In chapter after chapter, we see through these women's eyes, following their stories from the first appearance of symptoms in their husbands, through diagnosis and attempts to learn abot the disease, through responsibility-shifts and mutual emotional turmoil when a once-independent spouse can no longer drive, deal with finances, find his way home, use the toilet. They speak of their own struggles with practical matters, their own emotional changes, their widowhood, their grief, their healing. Their words are ordinary, their spirit astounding.

On another level, by means of text that interacts with these stories, Coughlan traces the emotional and social factors that affect Alzheimer's patients and caregivers, and offers information and coping techniques for every step of the way. There are clearly laid-out sections for identifying early signs of the disease; dealing with its advancing stages and gradual physical and mental degeneration; managing day by day; handling friends and relatives; understanding changes in marital roles, sexual relationships and fiancial responsibilities; and maintaining through death, bereavement, and beyond.

On yet a third level, "Facing Alzheimer's" is a practical and accessible handbook for caregivers, providing informatin about dealing with doctors, nursing homes, family complications, financial matters, and legal considerations. It includes overviews on coping strategies, information on support groups, interviews with support-group leaders, an appendix of resources and recommended reading, an exhaustive bibliography, and a comprehensive index.

While there's a lot of information in the book, Coughlan emphasizes that "I'd like to make it very clear that this was never meant to be a scientific or sociological study. There are plenty of those out there", she says, "and while they serve a valuable purpose, most of them really aren't that helpful for people dealing with the disease on an everyday basis. I wrote this book primarily as a way to pass along the enormous quantity of information these women had acquired just by making their way successflly through the Alzheimer's scenario. I wanted to write something that other people in the same situation could use, and that someone unfamiliar with Alzheimer's could learn from."

Typical of Coughlan's approach is one of the more telling chapters that reveals the limitations of the medical profession in dealing with Alzheimer's. Since there's currently no cure for the disease, many doctors feel defeated and frustrated by Alzheimer's patients. In addition, Coughlan notes, they are often dealing not only with harrassed and bewildered caregivers, but with patients who may be in full denial and whose grasp on reality may vary widely from visit to visit.

Acknowledging the sources of both doctors' and patients' frustratons, Coughlan writes: "What is necessary for effective caregiving is not an adversarial relationship with medical personnel, but a recognition of the inherent limitations of available treatment." She does point out, however, that it is often in dealing with doctors and nursing-home personnel that women begin to emerge from frightened and passive roles and begin to take charge for both themselves and their spouses. Helen, faced with her doctor's unfeeling attitude, finally took action:

Helen: I reported her. I did. I just thought, I didn't want anyone else to get that sort of treatment. I can remember thirty or forty years ago I would have been a whipped puppy, with her attitude. Not any more.

The chapter suggests ways for caregivers like Helen to become the patients' advocates, asserting temselves appropriately when necessary and working with doctors as partners, rather than adversaries. It also includes such information as standard procedures for a good and complete diagnostic work-up for Alzheimer's.

Equally eye-opening are two chapters dealing with the heartbreaking issue of putting an ill spouse into a nursing home. Once again, Coughlan lets her narrators tell their own tales of making decisions and surmounting difficulties, and then quietly supplements them with the kind of information and criteria that can make those processes much easier to deal with.

Coughlan is, in fact, the ninth remarkable woman in this book. her clear and compassionate eye, her extremely readable writing style, and her crisp and cogent presentation of facts and information surround and reinforce her interviewees' stories without ever overwhelming them. In the end, in spite of its practical nature, "Facing Alzheimer's" has an almost tribal feeling to it, as the voices of these kind, strong, and very human survivors unite to pass on the hard-won knowledge that will enable others to survive as well.

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Summary: Resources/Advocacy
Review: The fiber of this excellent book is woven together with the voices of experienced family caregivers. In chapter one, we are introduced to eight such family members and follow them throughout the pages; examining different aspects of the disease process and individual coping skills for the evolving issues. For instance, during a discussion on sexuality, caregiver Bonnie responds, "As far as the body next to me in bed, my main concern was that he not wet it!", while Mary is quoted as saying, "There's the void. The feeling that there's a huge chunk of your life that's been plucked out, and has ceased to be a comfort and joy. It becomes either something that's mechanical, or nonexistent, or an added frustration."

This book is never preachy and always compelling. It is a warm marriage of factual information and anecdotes that are at once witty, emotional, and realistic.

In "Facing Alzheimer's", Ms. Coughlan has presented us with a clear outline of disease stages while taking a step beyond the usual textbok approach to caregiving. Her commonsense outlook in a chapter addressing "The Basis of Coping" is typical of the entire text. Coughlan states:

"A person who insists that everything must be done in a certain way will have a harder time dealing with a dementia patient than someone who is willing to be flexible and overlook unimportant things. If the dementia patient is sitting quietly in a chair looking at a book that is upside-down, the flexible caregiver will forego acting on her own response. She will not risk a bad reaction by going over and turning the book right side up. The more she is able to overlook, the more contented everyone will be. Finding new ways of doing things, and working with the patient, rather than against him, facilitates daily management."

An omnipresent theme is the need to care for oneself in order to be the most effective caregiver possible. The families herein openly discuss methods of dealing with stress in order to caregive more salubriously. The personal accounts are interspersed with Coughlan's text:

"At that time Louie was very combative. In the middle of the night he would, if I would get up and say, "Louie, come back to bed", he would just grab my shoulders and he'd say, "What are you doing in my house?" He thought I was an intruder... Oh, it was terrible. And my son thought maybe one night I wouldn't be able to get through to him who I was, and he might hurt me..."

"In order to do what is truly best for her husband and for herself, a dementia patient's wife must develop the ability to rely on her own determination of what is correct. Perhaps what makes placing a spouse in a nursing home the hardest decision of all is that she must learn not only to rise above the judgments of others, but above her judgments of herself, as well. She must grant her own needs as much legitimacy as those of her husband, and this is something that is virtualy impossible to do in any rational, systematic way."

Family caregivers, support group leaders, dementia specialists and listeners... all would benefit from adding "Facing Alzheimer's" to the bookshelf. Remember to pull it out frequently as a quick reference as to why he behaves as he does and as written validation of your own caregiving skills.

Rating:
Summary: Facing Alzheimer's
Review: To face: to confront directly and boldly, to meet bravely. This is what eight women did when their husbands were stricken with dementing illnesses. Not only that, they agreed to be interviewed by Sebastopol author Patricia Brown Coughlan, to share their words with others facing similar chalenges. These women, and their insights and experiences, stand as role models to others in Coughlan's book, "Facing Alzheimer's." Coughlan's personal experience began 16 years ago when her grandmother's behavior began to change. There was the afternoon she got lost during a walk near Patricia's home, the day she held a garden hose but could't find the water faucet, the time she couldn't find her way to the bathroom. Coughlan's interest grew while attending an Alzheimer's support group in connection with her gerontology studies at Sonoma State University. It was through this group that she met the eight women who form the backbone of her book. "Facing Alzheimer's" strikes me as an indispensable resource for anyone who has a friend or family member with Alzheimer's, for the disease can be a web of confusion, not only to the patient but to the caregiver as well. The book discusses the often frustrating dealings with the medical profession. It covers nursing home placement and how to choose if placement becomes a necessity. It includes financial and legal considerations. But it also gives specific, helpful advice on how to manage day to day and this may be its most

beneficial gift. With all the information contained in its pages, the book is never overwhelming. It feels like a support group between your hands or a conversation over tea with a dear friend. The sensitivity with which Coughlan writes and the honest words of the eight women should give renewed faith to those dealing with Alzheimer's and other dementing illnesses. Coughlan is careful to point out, however, that although there is wonderful support learned from others' experiences, the road

of caregiver is one you must travel yourself. Finding your own way, making your own decisions, and having faith in your judgment may be frightening at first, but as the women in the book share, these are eventually empowering. As one support group leader said, "People... have within themselves the skills and knowledge to problem-solve... they just need encouragement and some guidance." That's exactly what Coughlan's book gives. Our community doesn't lack for creative writing talent, but I'm particularly impressed by the dedication and diligence shown by our own Patricia Brown Coughlan. She's taken an intimidating subject and made it accessible.