OWM Book Review: Love, Honor, & Value: A Family Caregiver Speaks Out about the Choices and Challenges of Caregiving
Love, Honor, & Value provides valuable information for caregivers of people of all ages. The author is one of the co-founders of the National Family Caregivers Association (NFCA) (www.nfcacares.org). Formed in 1993, NAFC aims to "educate, support, empower, and speak up for America's family caregivers so that all caregiving families can have a better quality of life." Publishing this book helps fulfill these objectives.
The author explains how she became a caregiver to her husband when he was diagnosed with multiple sclerosis (her caregiving responsibilities have continued for nearly 30 years). The psychological responses to the stress of caregiving are discussed, and her first-hand account of her depression and the emotions of dealing with a family member's disabling disease lend much credibility to the content. The need for communication among all parties is stressed; this need was consummated with the birth of the NFCA when Mintz collaborated with another caregiver to start the organization.
Caregivers of and for all ages feel the same emotional impact of caregiving - isolation, frustration, and changing family dynamics. Caregiving frequently scares away family and friends just when they are needed most, possibly because the situation represents what could happen to them. Frustration is common due to the difficulty in completing tasks: non-caregivers do not understand the demands of the situation and the current healthcare system is fraught with challenges.
All caregivers must deal with changing family dynamics. Often, the caregiver's relationship with siblings, children, and friends, as well as the care receiver, is altered. These changes can affect not only the ability to be an effective caregiver, but also the caregiver's happiness. Sadness and grief are common feelings. The use of a journal to record one's feelings is stressed as an effective way to express thoughts.
Whether you become a caregiver suddenly or insidiously, how a caregiver chooses to approach this new life situation is important. Having a take-charge attitude is crucial. A personal strengths, weaknesses, opportunities, and threats (SWOT) analysis is one method of coping. By examining these areas, a caregiver is able to begin to make choices, cope with fears, and determine available options.
Conducting research is a good way to be proactive regarding caregiving responsibilities. One area of research is determining the rules of the game, especially the game of the healthcare system. Keeping a written health history, list of medications, and special needs/likes of the care receiver is recommended in order to make physician appointments, hospital admissions, and changes in care easier. Becoming involved with other caregivers can be invaluable as a way not only to share feelings, but also to learn "tricks of the trade" that may make life easier.
Caring for the caregiver is crucial. Physical and mental disorders are common occurrences in caregivers. Caregivers frequently need to learn that saying "No" to demands made of them is acceptable. Ways to say no are discussed at length. Caregivers frequently express feelings of guilt about taking time for themselves, not doing enough for their family member, and the fact that they are the ones who have remained healthy. Guilt, it is emphasized, serves no useful purpose.
Respite as a way to reduce stress and focus on oneself is discussed. A study of caregivers of Alzheimer's patients showed that counseling and respite reduced depression and delayed nursing home placement. Other studies have shown that respite enhances the ability to cope with stress, reduces institutionalizations, and creates more optimism in caregivers of children. It is essential for caregivers to take time for themselves in order to remain healthy and continue in their roles.
An entire chapter is devoted to asking for help, a complex issue for many people. Obtaining help lessens the sense of isolation, decreases worries, encourages loved ones to be more independent, and increases confidence in the ability to manage responsibilities. Some of the barriers to asking for help are discussed. Pride is one of the biggest barriers, especially for the male caregiver.
A caregiver must define the type of help needed. A 1997 survey conducted by the National Alliance for Caregiving and the American Association of Retired Persons (AARP) discovered that 38% of caregivers did not know what type of help they needed. Caregivers need to realize that asking for help is a sign of strength, not weakness. Finding help takes creativity and perseverance. Caregivers should start by making a list of the tasks that need to be completed in a specific time frame. Ranking the priority of the need is also helpful. List what is needed today, next week, next month, or next year.
The final chapter of the book discusses the social issues of caregiving. Fragmentation of the social support system is problematic and has no quick solution. A major concern is the amount of care being provided by caregivers that was previously provided by acute care settings. Caregivers are frequently asked to provide this care with little instruction. Assertiveness with professional healthcare providers relative to the type and amount of care the caregiver feels comfortable providing, as well as in asking for education and follow-up care, is important.
Three appendices provide useful contacts (organizations, websites, information on home health care and nursing homes, and medical information); tip sheets from professionals that cover personal, legal, medical, and financial issues; and the author's testimony to a US Congressional Subcommittee on the role of family caregivers and their need for health insurance.
Although the dynamics of long-term ostomy, wound, and continence care are not discussed specifically, this book is valuable for caregivers of all experiences and proficiencies as a source of information and comfort. Anyone connected with home health care will benefit from its insights.
