Customer Reviews

Mainstay: For the well spouse of the chronically ill

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Maggie Strong has written a hands-on book for those who are living with a chronically ill spouse or partner. She speaks from her own personal experience and shares the stories that other caregivers have told her. Strong was the first one to write a book that 'tells it like it is." Her writing brought tears to my eyes on more than one occasion because I thought my experiences with an ill husband were unique. This book showed me that I was not alone, where to turn for help in finding support groups, how to handle difficult family situations, and most importantly, gave me hope that I could carry on. Being a caregiver is a very lonely existence...most of the attention focuses on the person who is ill. However, illness impacts the entire family. The healthy or well spouse should not be an invisible part of the equation. Brava to Maggie Strong for her courage and for leading the way on this important topic.

When my husband was diagnosed with a chronic illness in 1992, I was totally unprepared for the major lifestyle changes that it brought about, even though I am a nurse. When I found "Mainstay", it was as though I was no longer alone. There was someone who not only understood but who was able to clearly articulate the experience. The illness and the circumstances were different but the feelings were so similar. The book also gives realistic and practical ways to survive as a well spouse. However, for me, the best part was that the book led to an ongoing organization, the Well Spouse Foundation, that continues to provide support, education, and hope to many well spouses.

This is a rare thing--a practical, down-to-earth guide that's also very personal and written with the power of a good novel. As the wife of a chronically ill husband, Maggie Strong is honest about her husband's long illness and how it has altered their marriage and their family, and about the feelings all caregivers have: the love, the despair, the humor, the determination to go on and transcend enormous problems. There is nothing depressing here, but no Pollyanna either. You'll also learn about insurance, disability checks, dealing with doctors, asking for help, and scores of other ways to manage. You'll learn about a great support group. This voice will stay with you.

For anyone who is living through the challenges of caring for a loved one who is chronically ill, this is a voice of sense and compassion, spoken by one who obviously knows what she's talking about from first-hand experience. Maggie Strong explores every aspect of the experience, from the first dreadful diagnosis of her mate's emerging disease to the social and emotional changes that inevitably wash over the family's daily routines. And while she never glosses over the terrible toll such an experience can take on every member of the family, she also offers plenty of affirming information on what caregivers can do to save themselves while negotiating these difficult waters. I can't recommend this book enough. Short of knowing Maggie Strong personally, I can't imagine having a better companion for the journey my husband and I must travel. The book has literally saved my life! Thank you, Maggie.

Maggie Strong is a terrific writer. I'm not in her target audience for this book, but I learned so much from it.

Like the author's husband Ted, I have had multiple sclerosis for over 20 years. I've written books - i.e. The Art of Getting Well, available on Amazon, which you can read at davidsperorndotcom - about self-care for people with chronic illness. I teach self-care to health professionals and people with illness.

But seeing the experience of chronic illness through the well partner's eyes was hard for me. Strong doesn't pull punches - she reports the emotional, physical, social and economic toll of chronic illness on partners and entire families.

As a writer, I admire Strong's ability to mix personal stories with scientific information and expert opinion. Even though it's obvious that she knows more than many of the psychologists she interviews, she finds the nuggets of wisdom in therapists' experience and presents them to us. She tells personal stories with the telling details that touch readers' hearts and make the characters vivid.

The how-to sections are also excellent. There is information on what skills and attitudes all long-term couples need, and how chronic illness affects them. Her daily check lists - one for the sick person, one for the well spouse - are excellent guides. She provides a guide to using psychotherapy and support groups. Although she reveals her anger, fear and resentment, she does it with tremendous compassion.

My one criticism might be that little is said about how to overcome communication problems. Lack of communication caused many difficulties for Maggie and Ted and their children. He was resistant to talking about their issues, but there are probably ways she could have opened him up.

I got this book to prepare a book my partner and I are writing for couples with chronic illness. Our workshops for couples focus on sex and intimacy, and Strong doesn't back away from these issues. About having extramarital sex, she doesn't condemn or recommend - she just reports the stories and expert opinion she has learned and leaves it up to us to decide. That is our view too.

The first several chapters are unrelievedly sad, as things get worse physically for Ted. But stick with it. It is surprisingly hopeful to the end.

Maggie Strong published this hard hitting, practical guide to spousal care giving almost 20 years ago so that some of the information is now dated, even out of date. As the Well Spouse Association writes: "Maggie Strong gives us concrete, hard-sought information on depression, impotence, fatigue, downward mobility, isolation, anxiety and the loneliness that can accompany a chronic illness in the family. This book started our Well Spouse Association."

I found her basic approach very helpful when I discovered the book (about ten years after I took on the caregiving role for my wife), especially dealing with lonliness. More to the point, her book led to the creation of an excellent support organization, the Well Spouse Association. We are not devotees of support groups but over the years a number of people have asked our advice on how to deal with various issues, and we've received only positive feedback from our recommendation to contact this group.

I have read most of the books that Well Spouse has reviewed favorably, and I've spent a few hours reviewing those that I found of interest and help. They included:

A Husband, A Wife, & An Illness: Living Life Beyond Chronic Illness by Dr. William July. Both husband and wife are professionals and they tell about her illness and their reactions to the challenges from their separate perspectives. " We were living the American dream when she was struck with a devastating illness. As we forge our path to healing and recovery, we've discovered vital ways to live our lives beyond illness and we want to help you do the same thing." I found the book and the website too psychologically oriented for my taste, but many people disagree.

The Emotional Survival Guide for Caregivers by : Looking After Yourself and Your Family While Helping an Aging Parent by Barry Jacobs. A professional's approach, which appealed to my analytical side. Helpful.

A Three Dog Life by Abagail Thomas. "Abigail recounts, not only how she survived the emotional traumas universally experienced by all caregivers, but also how her eventual acceptance of "this man is not the man I married," leads Abigail to a life enriched by new friends and new pursuits imbedded in an independence she never imagined." Over the years, the Foundation has found that spouses, particularly men, find it hard to accept their new roles. Realizing my wife was "not the woman I married" was the biggest single hurdle for me on this journey.

The Goldfish Went on Vacation: A Memoir of Loss (and Learning to Tell the Truth about It) by Patty Dann. This book tells about the loss of a spouse with little kids in the family. Ours were seven and three when the tumor appeared, and many of Dann's experiences paralled ours. I'm not sure we did as well as she and her husband did, but we did our best.

The Human Side of Cancer: Living with Hope, Coping with Uncertainty by Dr. Jimmie C. Holland. A very helpful view from a profession at Memorial, one of the great cancer hospitals.

The Selfish Pig's Guide to Caring by Hugh Marriott. "This book is a fantastic read, and it may leave you with some new coping mechanisms, more confidence, and a lot less needless guilt! With great humor and a sharply sarcastic wit, Marriott gets right to the heart of all the difficulties we caregivers encounter - emotionally, financially and physically. If you ever though a nasty thought, lost your temper, felt like you were going insane, felt isolated, friendless, frustrated with bureaucratic idiocy, or wondered why you were being a caregiver in the first place, The Selfish Pig offers understanding, comfort and assurance that you are not alone or insane or a bad person." (I've written a very positive review of this book as well.)

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Two helpful books, both of which I've reviewed here on Amazon, and not reviewed by the Association are:

A Family Caregiver Speaks Up: It Doesn't Have to Be This Hard (Capital Cares) (Capital Cares) by Suzanne Geffen Mintz. Suzanne Mintz is president and co-founder of the National Family Caregivers Association, and wrote an earlier edition of this book, Love, Honor and Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving (Capital Cares). The very helpful Appendices and the comprehensive Bibliography have been expanded and updated, and the third chapter on public policy matters has been significantly revised. There is also a good introduction to and description of the Association and its benefits and activities.

Uncertain Inheritance, An: Writers on Caring for Family by Nell Casey. Most of us are amateurs in caring for ill people. As one reviewer wrote, the burden of doing so "is apt to descend upon us like a blow from fate, stunning and unforeseen. ... [Then] something cracks open -- a father or a friend gets cancer, a mother succumbs to Alzheimer's, a husband has a terrible accident, a child dies -- and what Virginia Woolf once called "extreme reality" floods in." Any one of us can find ourselves unexpectedly tested to the limits of our endurance. The great power of this book is that several people describe their experiences in their own words. You'll find that if the blow from fate descends on you, you'll meet the challenges in your own way.

I also learned not to criticize anyone for the way they meet the challenges -- even if they avoid them completely.

Any of these books may prove to be helpful if you become a care giver for your spouse.

Robert C. Ross 2009

I was moved by and influenced to write When The Man You Love Is Ill after reading Maggie Strong's heartfelt book. I was deeply touched by her personal story and wanted others to have a book that complemented the personal with the general.
I still think Mainstay touches the heart of all who have been through the experience of being a caregiver. Five stars

This was an extremely helpful book. I read it at a time that I felt that I and my world as I knew it were falling a part. It helped to give me perspective and a measure of peace. If anyone feels that they are floundering in this authors place READ IT

This book was used often in a consumer health library where I worked for years. I purchased this for a friend going through a spouse's long illness. She found many practical ideas.