Our culture tells us that we should fight hard against age, illness and death: "Do not go gentle into that good night," Dylan Thomas wrote. And holding on to life, to our loved ones, is indeed a basic human instinct. However, as an illness advances, "raging against the dying of the light" often begins to cause undue suffering, and "letting go" may instead feel like the next stage.
Families—not institutions—provide the majority of care to chronically ill and disabled persons. These families know the enormity of the burden in caring for someone with Alzheimer’s or Parkinson’s diseases, stroke, traumatic brain injury, or other long-term conditions. They also know the challenges in locating appropriate advice, services, and respite.
Many of the diseases and disorders that affect the brain are progressive and their incidence and prevalence increase with age. Caring for those with adult-onset brain impairments frequently becomes a 24-hour, 7-day a week role. As the population ages, the need for care and for understanding the impact of these disorders on families becomes even more pressing.
Support or "self-help" groups are formed by people who share common concerns. The groups may be participant-initiated or sponsored by a health care institution, social services agency or nonprofit organization.
A degenerative or terminal illness, or an accident involving a family member, is a traumatic experience for spouse, parents, children and other relatives. Support groups allow those facing the difficult task of daily caregiving to benefit from interaction and support from other people in similar situations.
In recent years, much energy has been put into genetic research both through the individual efforts of interested scientists and through the collaboration of international teams in the Human Genome Project. Through this work, we have learned a great deal about how genes function and how they can cause certain problems. We now know how to look for mutations (changes in the gene) that can lead to specific disorders. Genetic testing is possible for some conditions because we can recognize the difference between a normal gene and a disease gene.
Hardly a day goes by without a story on television, in the newspaper, or on the Internet about new medical research findings. You might hear about a new drug to treat Alzheimer’s, a promising “cure” for cancer, or a breakthrough discovery in Parkinson’s disease. Or you might see articles about particular foods or dietary supplements that are said to promote health or prevent or slow the course of illness. Should you try to get these drugs for a family member who is sick? Should the person change his diet? Take more vitamins?
At 89, my dad was a stubborn force of nature. He had been taking care of my mother at home for some 14 years. Mom was also 89, had been Dad’s wife for 66 years, and she was in the late stages of Alzheimer’s disease.