It Shouldn't Be This Way: The Failure of Long-Term Care

by Robert L. Kane MD, Joan C. West

The failure of long-term care is the country's best-kept embarrassing secret. Almost every adult in the United States will either enter a nursing home or have to deal with a parent or other relative who does. Studies show that 40 percent of all adults who live to age sixty-five will enter a nursing home before they die, while even more will use another form of long-term care.

Part memoir, part practical guide, part prescription for change, It Shouldn't Be This Way is a unique look at the problems of long-term care. Robert L. Kane, a highly experienced physician and gerontologist, and his sister, Joan C. West, tell the painful story of what happened to their mother after she suffered a debilitating stroke and spent the last years of her life in rehabilitation, assisted-living facilities, and finally a nursing home. Along the way, her adult children encountered some professionals who were kind and considerate but also many frustrations—inadequate care and the need to hire private duty aides, as well as poor communication and lack of coordination throughout the system. The situation, they found, proved far more difficult than it needed to be.

As the authors recount their mother's story, they impart various lessons they learned from each phase of the experience. They alert those who are confronting such situations for the first time about what they will likely face and how to approach the problems. Closing with a broader look at why long-term care is the way it is, they propose steps to make necessary reforms, including the development of national organizations to work for change. Their message to families, care professionals, and policy-makers could not be more urgent.

Genres: Nonfiction

200 pages, Paperback

First published January 1, 2005

Reviews

[Aimee · Rating 2 out of 5]

The book chronicles the trials of a brother and sister’s (he’s a geriatric MD, she’s an elementary school teacher) maiden voyage through the long-term care system. Their mother Ruth, a strong-willed woman, has a stroke and subsequently develops dementia. I noticed that the physician son is first author, but it’s the second author, the daughter, who bore the brunt of the responsibility overseeing Ruth’s care.

The authors repeatedly brag about how well educated they are and the “prominence of Ruth’s son and daughter-in-law in the geriatric health care field” but they were not well educated consumers. This can be forgiven, at least initially. Through the course of Ruth’s decline, they were reluctant to admit that her care needs were far greater than the ability of staff were clearly able to provide. The authors made no secret of their fear of nursing home placement. Although some nursing homes are awful places to live, the same can be said for some adult family homes and assisted living (I’m familiar with all three settings).

The authors make some valid points about their experiences from the hospital to rehab, Assisted Living, Dementia unit, and finally the nursing home, as well as experiences with various health care professionals. However, I took issue with a few things. For example, the authors correctly note that “older people are regularly left out of the decision-making process.” Yet prior to her stroke, Ruth claimed that she didn’t want to live disabled. It’s not clear whether the family encouraged further discussion of what she wanted in the case of incapacitation (I assume they didn’t want to “kill” her, like she directed)before the stroke. Knowing that elderly people are living longer and more frail (as opposed to fully functioning until they die in their sleep), had the family considered how they were going to support her choices, and their resources before Ruth’s stroke? When trying to find the best “fit” for Ruth, or when trying to address problems with the facility, did they contact the local long-term care ombudsman? If trying to advocate for your loved one makes you come across as a pest, so what? Could these educated authors have given the reader suggestions on how to best approach staff or the health care provider and what questions they should ask?

Soapbox alert: When it comes to aging and the need for care, don’t expect that things will take care of themselves and leave that complicated mess for someone else (probably someone you love) to deal with.

That said, I had empathy for this family—and for all families in the situation of trying to cope with the decline of their mother/parent/etc while looking after her while juggling their own busy professional lives. They did what they felt was best for Ruth, and did so in a system not known for its navigability. Part of their anger at the system is deserved, and some of it is guilt talking. Without question, there are system problems from discharge planning to the use of psychotropic drugs for behavior management to reading the fine print in a contract that need to change.

[Maureen Mann · Rating 4 out of 5]

Even though this book was written in 2005, the experience detailed of the care options for the author’s mother eerily echoed every experience we just recently lived through in the last three years with my parents. The call to action at the end of the book for better care for our elderly, doesn’t seem to have been spearheaded by this team, which is unfortunate as they do have the education and experience to get behind a movement. While I appreciated the shared experience, I would have like to read about the other better experiences in other countries that the authors mentioned.

[Ramona · Rating 3 out of 5]

This book is an excellent resource for anyone who is dealing with long-term care for loved ones. It is a compassionately told story of the authors' struggles with their mother's issues as she grew to need long-term care. It struck so many chords with me regarding the issues my husband and I are facing as we seek care for our parents. It describes many of the situations we have experienced and asks questions about how we can advocate for the best care in the future. This is a very thought-provoking subject and book.

[Jessica Bang · Rating 3 out of 5]

This is a portrait of a family with an elderly loved one going through the different aspects of long-term care in America. It doesn't quite instill hope, though it does call out for reform.