Taken at the National Zoo in Washington DC
Many books have been written about caregiving over the years, some very good and some that just repeat the same old things. The Gift of Caring: Saving Our Parents from the Perils of Modern Healthcare by Marcy Cottrell Houle and Elizabeth Eckstrom is the most important book on this topic in years. It is a book that should be required reading for anyone entering the field of gerontology, whether they are researchers or clinicians or for any of you who are caring for a family member or might be in the future—in other words, practically everyone. There are some things that can only be understood on a personal level as done in this book, rather than in the more objective terms of research findings. I wish I had been able to assign it to all my students so that they could become sensitized to the many ways our health care system fails our most vulnerable patients.
There are many things to like about the book. It has a clever format. Much of the book was written by Marcy Houle, a writer and biologist, who tells a story that spans many years of her parents’ illnesses, care and deaths. She and her family faced many of the most challenging problems—strokes, dementia, falls, to name a few. No matter how severe the problem, Houle was able to find strategies and resources that made it somewhat better. Interspersed with Houle’s story are chapters written by Elizabeth Eckstrom, a geriatrician who provides background and commentary about the problems that Houle and her parents encounter. This balance of personal experience and expert medical perspectives makes the book enormously useful.
Houle has a wonderful ability to see what can be done to make even the most dire situation a bit better. She doesn’t accept usual care as an acceptable standard. When her father was living in a lackluster nursing home, she and her daughters brought music and pictures into his room and began having parties. Despite his advancing dementia, he perked up. At a later point when Houle found him suddenly slumped over and unresponsive, she didn’t accept the physician’s explanation that the mood stabilizer he had been placed on was necessary to protect the staff from his violent behavior. Instead, she reached out to her pharmacist and to a geriatrician, who identified that the “violent behavior” started after the facility had inexplicably stopped her father’s pain medication. He was in pain and reacted to efforts of staff to do hands-on care by striking out. Substituting Tylenol for the mood stabilizer led to dramatic improvements. “We watched my father transform from limp and unresponsive…to smiling again” (p. 94). This example is not an aberration. We have seen many similar medication problems over the years.
A major part of the problem is that health care staff hold negative expectations that create a self-fulfilling prophecy—when you assume older people will only decline, you don’t bother to do the things that might prevent that decline or reverse transitory symptoms. Also contributing to this problem is that some, shall we say, entrepreneurial, skilled nursing and rehab facilities see therapies not as a way to improve the functioning of the patient so much as a way to increase their own bottom line. Over time, even well-intentioned therapists may find their morale undermined by being expected to do therapy on patients with little chance of improvement, causing them to miss the opportunity to make a difference when it is possible. Another example from the book illustrates this issue much more dramatically then the past three sentences. Sent to the nursing home after a fall in the hospital, Houle’s mother was supposed to receive physical therapy. Instead of gaining strength, she became weaker and weaker. Although the staff checked off that she was receiving PT, the helper the family had hired to stay with her said they never gave her therapy. When Houle discussed the situation with the facility’s social worker, she was told that she needed to accept that her mother would not improve. But Houle did not accept that. She brought her mother home and found a physical therapist who provided appropriate treatment that helped her mother regain a portion of her functioning.
There are many other examples throughout the book of how Houle and her family found creative ways for dealing with the small and large problems related to her parents’ illnesses and care, and helpful suggestions by Eckstrom as well. The larger lesson that emerges is that many of the problems that older people experience are not part of disease or old age, but are iatrogenic – generated by uninformed medical care, poor nursing care, inept physical therapy, and lousy social work. Did we leave anyone out?
The book shows that things don’t have to be that way. We expect too little when it comes to care of older people. We should expect that doctors and nurses and other health professionals who treat older people should have training in geriatrics, so that they at least know how to do no harm. Likewise, nursing homes should be expected to provide high standards of care that are achieved in countries such as Sweden. Good care may at times cost more, but there will also be cost-savings by avoiding some of the problems associated with bad care.
We want to add that we know there are many people working in care of older persons who provide the right kind of care that maximizes a person’s functioning and quality of life. We also have been in nursing homes that due to diligent and far-sighted leadership provide excellent care. But the situations described in The Gift of Caring are all too common. Reading about all the small and occasional large triumphs in this book is uplifting. It also is the best primer we know that will prepare you for the challenges that might lie ahead for a parent or spouse. Or for you.
The title of the book is The Gift of Caring: Saving our Parents from the Perils of Modern Healthcare, by Marcy Cottrell Houle, M.S., and Elizabeth Eckstrom, M.D., M.P.H. Here is a link for the book on Amazon: