Book Review: Staying Connected While Letting Go: The Paradox of Alzheimer's Caregiving

Abstract

Studying Greek tragedies, Nelson Mandela noticed that characters were measured upon dealing with difficult situations and that a hero was a person who did not break even under difficult circumstances. This book is about optimism in the face of the tragedy of Alzheimer disease. It illustrates how caregivers become heroes through struggling and transcending the chaos caused by dementia, into a situation in which the dignity of both the patient and the caregiver is preserved. The authors illustrate how in the actual phases of care for a demented patient caregivers can cope with the problems they are confronted with, starting with dealing with the first signs until recovery after the patient’s death. They use the principles of cognitive reframing to illustrate how untapped individual potentials can be used to deal with difficult situations. In the beginning, there is the ambivalence of getting a diagnosis, the “wanting to know” versus the “not wanting to know.” The actual information on the diagnosis causes dual feelings of upsetting on the one hand and relief and validation of expectations on the other hand. The disclosure of the diagnosis is considered to be essential to come to terms with the illness. The patient’s changed behavior can now be defined as an illness, out of the patient’s control. Knowing the diagnosis also enables sharing this information with family and friends, thereby usually decreasing the risk of isolation by hiding the patient. As there is little knowledge about the impact of disclosure of the diagnosis dementia, the cases presented in this book provide insight into the patient’s world. Becoming a caregiver requires adaptations of the premorbid relationship. It is important that the caregiver sees himself or herself as a whole person, an individual with own rights, separate from the patient. Caregivers describe how they were confronted with negative thoughts about dealing with the patient’s illness. It is essential that the caregiver give himself or herself permission to be angry and resentful. These are natural and normal feelings. However, in the communication with the patient, it is better to preserve patient’s dignity instead of arguing. The acknowledgments of negative thoughts and the emotional and practical suggestions to deal with these feelings are very valuable for those involved in caregiving. In the middle stage, competence in memory and other activities is uneven; one moment the patient is quite well another less capable than ever. A major challenge for caregivers is to accommodate and adjust to this disease in such a way that adaptation includes compassion for both themself and the patient. Awareness of the increasing stress and alertness for symptoms of burnout are required. The authors manage to vividly describe this difficult balance, including both the struggle and the victories of the caregivers. The idea through all stages of caregiving, even the late middle stage, is that caregivers have a choice. To maintain a balance, it is crucial that caregivers can say “I need help.” In the final stage, there is the struggle between staying connected while letting go. When facing the decline and threat of death, caregivers might wish to go on while also struggling to let go. This is often an anticipation of the final separation. The book ends with honoring tomorrows by reentry of post caregiving. In this period, an active recreation of life is stimulated, as it was during the caregiving period. The incentive to take responsible action and to use untapped human potential is the optimism that colors the book. Acting as one’s own agent optimizes self-esteem and gives meaning and hope. This might help to transcend loss. Resilience is the key to victory over dementia. As we know so much about frustrations in caregiving and so little about comfort, this book manages to provide comfort without denying the problems. On the contrary, by its often unorthodox character, it also adds unknown problems and losses such as intimacy to the losses perceived by caregivers. It also illustrates the power of long-lasting love. The value of this book for families, friends, and professionals is that it shows how healthy boundaries can be made between the personal interests of the caregiver and the caring tasks.