Families—not institutions—provide the majority of care to chronically ill and disabled loved ones. 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.
Most family caregivers reach a point when they realize they need help at home. Tell-tale signs include recognizing that your loved one requires constant supervision and/or assistance with everyday activities, such as bathing and dressing. Caregivers also find that certain housekeeping routines and regular errands are accomplished with great difficulty or are left undone. It may become apparent that in order to take care of any business outside the home, more than one caregiver is required.
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.
The diagnosis of a dementing illness marks a new stage in your life and your family’s life. Challenging decisions and important choices arise, along with uncertainty and often confusion, anxiety or fear. Some decisions might need to be made right away. Others lie ahead. The best future for you and your family depends on understanding what is most important to each of you. Recognizing and communicating your personal values about everyday care enables you and your family to make the right choices, one by one, as the situation changes.
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.