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An unofficial sign of the end of summer, Labor Day, was conceived to acknowledge the contributions and achievements of American workers. This impresses me as a good time to recognize some otherwise unsung laborers: the approximately 15 million unpaid caretakers (primarily family members) of individuals with Alzheimer’s disease (AD)1. But rather than focus on drudgery, and the well-documented burdens of caretaking, I want to concentrate on the blessings that issue from in-home care of loved ones.
In addition to advantages such as maintaining the comfort and routines of the person afflicted with AD, the provision of care for a declining loved one allows for the deepest expressions of love and grace by caretakers. To have warm thoughts and feelings, and to verbally express them, is good. But the message is more powerful still when positive sentiments are put into action. It really is more impressive to show a sermon than to say one. When family members are there for individuals with AD they are not just doing their duty, they are enacting powerful virtues—devotion, compassion, respect—the things that enrich life and give it real purpose.
With advanced dementing disorders a person can be physically present and yet be mentally absent—I have witnessed this in my nursing home work, which I discuss in my book, Simple Lessons for a Better Life: Unexpected Inspiration from Inside the Nursing Home2. Nursing home residents may have lost organs and limbs, suffered sensory impairments (e.g., losses of hearing or sight), and experienced disfigurement (e.g., from stroke or accidental injury), yet they remain easily recognizable to those who know them. But when the brain is attacked by a dementing disorder we see a loss of identity, even when an individual’s physical presentation remains largely undisturbed.
Family members have confided to me that this is a point at which it becomes significantly more difficult to maintain contact with the person with advanced dementia—when his/her mind and personality are lost, and family members are not remembered by the AD sufferer. And yet, family members often continue to visit their loved ones in the nursing home. They make statements such as, “I keep coming because I promised my father I would,” “Because it is the right thing to do,” “Everybody deserves to have somebody to watch over them,” “I would volunteer service to strangers at the hospital, why not to my mother?” “It is important to me to honor my marriage vows, even if my husband is unaware.”
These explanations reflect motivations that relate to morality, ethics, and conscience. Many millions of family members of individuals with AD humbly and honorably engage in such noble caretaking actions daily in the community, and they experience the benefits of self-dignity and self-esteem—the natural rewards of behaving in concert with high moral standards.
Once an individual’s mind is compromised by illness he/she is lost to us and we to him/her, an anguishing double loss of identity. Yet, these very challenging situations provide opportunities for family members to express important ethical, moral, and spiritual values that enhance their own sense of purpose, meaning, and satisfaction. Their labor represents the highest forms of love and humanity, which benefits caretakers and afflicted individuals alike.
References
1. Alzheimer’s Association, “Fact Sheet”, http://act.alz.org/site,DocServer/caregivers_fact_sheet (accessed 8/28/16).
2. Charles E. Dodgen, Simple Lessons for a Better Life: Unexpected Inspiration from Inside the Nursing Home (Amherst, NY: Prometheus Books, 2015).
