The Caregivers: A Support Group’s Stories of Slow Loss, Courage and Love by Nell Lake

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September 27, 2014

The unsung heroes of our society often labor without recognition, and outsiders may wonder how they cope. This book chronicles the grief process of a small group of caregivers who find assistance in a hospital support group in Boston. The author follows the lives of 8 people who give significant care to a parent, spouse or family member. Most of the loved ones who need care have a form of memory loss, or dementia, or a neurodegenerative disease such as Parkinson’s disease. Because of the triumphs of medical science, many of us are living longer than ever before. With long life comes increasing cases of dementia, such as Alzheimer’s disease. How will we as a society care for those with memory loss? Currently 43 million Americans, 18 percent of adults, give unpaid care to a family member over 50. These numbers are predicted to rise as Baby Boomers age into senior citizens. Consequently this book is a good resource for all of us, as we will all likely need to deal with the various aspects of caring for those who cannot care for themselves.

The journalist author, Nell Lake, follows the caregivers support group for 2 years, and the book is written mostly in the stories of the individual lives and the everyday struggles of balancing a day job with caring for those who are either physically or mentally failing. There is Penny, a former alcoholic and youngest of 5 children, who is caregiver to her 87 year old mother. She lives with her mother while working as a botanist at a university. We watch as she struggles with working a full time job and dealing with her mother’s increasingly frail health and poor memory. Daniel, another member of the group, is unusual in that he at 87 is a caretaker for his wife, age 63, who suffers from severe depression and chronic pain. In a more typical scenario, William cares for Joan, his wife of 50 years, who has Alzheimer’s disease. 

Through very personal and revealing narratives about each family’s daily lives, we learn many of the challenges of taking care of a dependent adult. We can share in the struggles of worries about safety for those with poor memories. We can understand better the “sandwich generation” of those who care both for their parents and their children. We realize that it is important for caregivers to have their own support group when they spend so much of their lives taking responsibility for someone else. Some lessons that we can apply to our own lives:

  1. Taking care of a loved one who has dementia, or memory troubles, can be a slow, agonizing loss which is different from grief from a sudden loss. “You miss the way things used to be.” And “Final grief is suspended, and in the meantime grief goes on.” The challenge of mourning is to live well within grief; to “integrate the loss into one’s psyche and life’s work.” (207)
  2. Elder or dependent care for older adults, especially memory care, can be financially draining. In some examples in the book, the cost of a patient’s care per year ran $90,000 to $120,000/year. In many cases, long term care insurance is very important to invest in for the long run.
  3. For legal and medical reasons, it is very important to have power of attorney for financial and legal matters as well as making medical decisions. All people should have a living will in addition to the normal estate will. The medical decisions should be discussed while the person has some capacity for decision making.
  4. Striving for a peaceful death should be a goal for health care providers. Families are more traumatized if their relative dies in a hospital, especially intensive care units. Families have shorter grieving and less post-traumatic stress if their loved one dies with hospice or in nursing homes. 
  5. Caregivers must realize the extreme stress they are under when they care for another person. As Suzanne Miller, the executive director of the National Family Caregivers Association, is quoted in the book, “I think watching someone you love deteriorate is really more stress than anything in the world.” (221)

The book discusses important issues such as when to move a relative into a care facility and the difficulty of being the primary caregiver for a parent when siblings that have strong opinions but are unhelpful are involved. Most importantly it highlights the growing numbers and variety of caregivers. Each story helps to illustrate the daily challenges they face and to consider how we are individuals and as a society can better deal with taking care of an aging population.