Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, First Edition

by Cappy Capossela, Sheila Warnock

Whether you're prepared or not, chances are you'll take on the role of caregiver when a family member or friend is affected by a serious illness. As you'll soon discover, the tasks will range from major ones—checking someone into the hospital, sorting out insurance coverage, keeping track of medications—to the minor—walking the dog, preparing a meal, or just being there for someone. If you're determined to help but you're feeling overwhelmed by the responsibilities, "Share The Care" offers a sensible and loving solution: a unique ground approach that can turn a circle of ordinary people into a powerful caregiver team. Here are valuable guidelines, compassionate suggestions, and a simple-to-use workbooks section that offer support to help free the patient from worry and the caregivers from burnout.

Genres: Death, Nonfiction, Health

288 pages, Paperback

First published December 12, 1995

Reviews

[Alexandra Sproule · Rating 5 out of 5]

I really appreciated book, partially because I don't think there are a lot of others like it. It combines a very high level of logistical specificity with an acknowledgement of and dedication to working through the messy dynamics of intimate community. This is a critical combination in effective long-term community organizing. It can be done in a lot of different ways, and this book vividly outlines one approach.

The Community of Care system that they lay out is designed to support someone experiencing a life-disrupting health issue that will impact them for years (or perhaps most of a single year). It gets increasingly less relevant as you move away from this scenario.

The MAJOR disclaimer I would give up-front is that this book expects a high degree of administrative skill & literacy from the people who use it. Not from every team member, but from several of them. The book is written by two upper-middle class white women from New York, and their suggestions are not always going to be transferable to other communities. That's okay - community is not generalizable, it is specific. It's possible that you would like this book less if you / your communities are far very different from the communities of the authors.

The book is divided into five parts:
Part 1- Explains what a 'Caregiver Group' is within this model. It hooked me, as when I was acting as a primary caregiver for two years, I yearned for the type of support they described for myself and the person who was ill. It talks about the rewards of a Caregiving Group.
Part 2 - A very detailed guide on how to invite people into this group, how to hold the meeting that will launch the group, and what skills are required to launch the type of Caregiver Group envisioned in their model. It includes a full meeting agenda and script, and many form templates. They are very serious about how you start the group!
Part 3 - Discusses different tasks and considerations when caring for someone with a serious long-term illness, or someone who is dying. They had a really detailed of helpful jobs/tasks people can do, which I think is very useful.
Part 4 - Unpacks some of the emotional issues that arise in a Caregiving Group, including burn-out, jealousy, feeling disconnected, personal discomforts, resentment, and more. This section made me take the book fully seriously - they didn't shy away from things.
Part 5 - Wraps it up

[Pat Watt · Rating 5 out of 5]

I could have taken a star off this book because it (the 2nd edition) was published in 2004 and since then the world has truly changed. But, even though the systems it proposes are very old school, the approach is timeless. It can easily be adjusted to modern life, with Zoom, websites and apps like LotsAHelpingHands, and social media’s private groups. The need for care by people who are ill, or face death, has not diminished - may even have grown. The book lays out an approach that can easily be adapted to fit almost any situation. When family or friends are sick, we often want to help but don’t know how. And if we, ourselves, are sick we are often afraid to ask for help. This book lays out a timeless method for (1) creating a functioning group, and (2) sharing whatever resources exist within it to focus them like a laser on providing needed help without burning anyone out.

[Marjorie Schultz · Rating 5 out of 5]

This is the book my mom used with her friends when she was terminally ill. She didn't need the chapter on how to find friends. But it helped organize them so they could help her. An aha/duh-ask people to do things they enjoy. Her retired minister loved to take her for radiation treatments and use his "clergy" placard in the Loyola parking lot for a close space.

[Elizabeth · Rating 4 out of 5]

A little dated, it by using the principles and the caringbridge website, this is a good primer for gathering forces to help a family through illness

[Melody · Rating 3 out of 5]

Great insights about caring for a seriously ill person. The text is quite dated, however, and would benefit from a deep re-do with current technology.

[A.B. McFarland · Rating 5 out of 5]

Have you ever needed to provide help to a friend or family member with a serious illness or injury? Did you feel overwhelmed and resentful, and then felt guilty about those feelings, but felt if you didn't help, no one else would?
Have you ever been unable to do things for yourself because of serious illness or injury, and felt worried because relying on random people, busy friends and family was kind of like having holes in your security blanket?
Caregiving groups to the rescue!
The book Share the Care is a remarkable achievement. It was written by two women who were part of a caregiving team for a mutual friend who had cancer. They have group caregiving down to a system, and share their system with readers in this book and on their website, sharethecare.org.
Through the power of using the group so that no one burns out, the Share the Care system helps you do everything from navigate the medical maze to fixing up your sick friend's room. Whether you or your friend has a terminal illness or just need help for a couple of months after hip surgery, the authors have thought through virtually all the various tasks that might need done for an ill person. They provide forms that members can fill out detailing their skills and availability, and explain how to run the initial meeting that gets everyone on board with the concept of sharing the care, and much more.
I'd recommend it to anyone, even if aren't convinced you'll ever need it, because it is thought provoking and full of good ideas.

[Jvlemons · Rating 4 out of 5]

I recommend this book. This book provides an excellent framework to organize a team of people to help someone who is ill. I successfully used the Share the Care ideas to bring together a team of people, most of whom did not know each other, to help a mutual friend who was in the hospital for two months, and then had a long recovery at home. I modified some of the processes to meet the needs of the group. For example, I used email to notify people of an urgent need instead of using the prescribed phone tree.

[D · Rating 5 out of 5]

This book may seem overwhelming at first, but caring for someone who is very sick or at the end of their life IS overwhelming. I've been this kind of caregiver three times for people who were not part of my biological family and had a few comments which went into the second edition. I highly recommend it; it's unique in its class. There's a good website, called www.lotsahelpinghands.com, that didn't exist when I needed it, but would have been a good tool and probably saved me a lot of time on the phone.

[Anne]

Borrowed from a friend soon after I found out that another friend has breast cancer. The patient's support system seems pretty good, so I haven't finished reading it or put much of it into practice. Still, might be handy to know if, God forbid, I might need something like that some day.

[Paul Cavanagh · Rating 5 out of 5]

A wonderfully practical and inspiring guide for people who want to help but aren't sure how. I had the opportunity to promote this book with its author, Sheila Warnock, in my part of the world a couple of years ago.

[Jborree · Rating 4 out of 5]

Really great information and motivational material for doing this really hard but rewarding thing.

[Gailembt · Rating 4 out of 5]

A great How-To book. My only concern is that the people who most need this don't have the time to read it.

[Correen · Rating 3 out of 5]

Interesting process. Seems to work for some persons. I do not plan to formally implement but will start keeping a file of persons who volunteer.