Review of "Dementia Caregivers Share Their Stories"
By Lynda A. Markut and Anatole Crane Vanderbilt University Press, 2005 Review by Diana Pederson on Dec 11th 2007
Dementia Caregivers Share Their Stories shares the story of the members of an Alzheimer's dementia support group in Woodstock, Illinois. Their stories represent the issues, struggles, and successes experienced by caregivers in similar support groups across the United States. Therefore, this book advertises itself as "A Support Group in a Book".
Each of the 13 chapters presents a single aspect of the complicated issues of care giving for people with Alzheimer's or other forms of dementia. The first chapter talks about the early symptoms and eventual diagnosis. Seeking a diagnosis may be initiated by a family member or the patient. It is sometimes difficult to distinguish symptoms of disease from normal aging. The most important thing is to get an accurate diagnosis and find appropriate medical care.
The different caregivers are discussed in Chapter two. Some are spouses, others are children providing care for parents, and some are other family members. One family member may be the caregiver for a parent while their siblings deny there is a need for a caregiver. This is a distressful time for everyone and patience is needed.
Each of the "dementia" causing diseases has characteristic behavioral changes. These changes are challenging to the caregiver and will significantly impact their lives. One of the most difficult changes is when the patient forgets who their caregiver is – even if they are a spouse, a son, a daughter, or a grandchild. The caregiver has to keep focused and be ready to get their patient through the changes as they come. This involves tact, patience, and sometimes cajoling the patient to do something. Read chapter three for a thorough discussion of behavioral changes.
"Maintaining Meaningful Involvement in Life", the topic of chapter four, is difficult for the patient and the caregiver. Keeping the patient active and participating in enjoyable daily activities becomes more difficult as the disease progresses.
Chapter five provides a discussion of the emotions involved in care giving. It is extremely difficult to stay positive when you know the patient is really in the process of dying. Even Christians, with a strong faith in another life after this one on earth, find it difficult when their mother or father, husband or wife, is back in childhood and unable to remember who they even are. It is essential that caregivers have a support group or counselor that can help them through the difficult times.
Chapters six-eight deal with transitions (between home and nursing home for example), holidays and celebrations, and dealing with the loss that accompanies any dementia causing disease. Spouses sometimes have to try developing friendships (again) with their wife or husband. This can be a rocky process at best.
Caregivers will burn out. They live under extreme stress most of the time. This is covered in chapter nine. This is followed by chapter ten's discussion of the caregiver finding a way to maintain a meaningful relationship with the patient. It is very discouraging for a husband to have his wife insist that he find her "father" or her "mother".
The death of the patient (be it husband, wife, or parent) is difficult for any caregiver even though they have had years to prepare. Some feel guilty thinking they could have done more. This final transition from life to death is the topic for chapter 11.
I believe chapter 12, Growth through Caring, is the most positive chapter in this book. It shares stories of caregivers that have managed to grow in spite of all the difficulties. One daughter shared how her mother convinced her to take better care of herself. Others find skills and emotional depth they didn't know they were capable of.
The authors end this book by having a select group of caregivers present a message to those reading this book. This final chapter truly makes this a "support group" in a book.
This book is needed by every family member that has a relative suffering from any of the dementia causing diseases. It will remind them that they aren't all alone in their role as a caregiver. It is full of ideas that have worked for other caregivers for them to try with their patient.
This book affected me directly. Because of reading it, I had a discussion with my oldest brother, the one who will become the guardian for my mentally challenged sister when the time comes, about encouraging our father to get some assistance in dealing with my Mother, who has had Alzheimer for at least three years now. This past week, a sudden hospitalization following surgery intended to be outpatient, made my Father more willing to seek this help. As he said from his hospital bed, "it's difficult when the caregiver gets sick". My brother is currently preparing a list of resources for my father. The entire family is encouraging him to take whatever action is needed at this time because he needs further medical care himself.
I strongly suspect others are in this position. Perhaps this book will help you initiate a conversation with the caregiver about getting some relief help or professional help in taking care of their family member.