The best everyday care choices for the person diagnosed with a dementing illness, and for loved ones giving care, depend on an understanding of values and care preferences. Examples of everyday care choices include when to stop driving, how to manage money, whether to purchase or use support services, when to accept care from family members and, at a more personal level, when to bathe and what activities to do.
More than ever before, caregiving is recognized as a key element of everyday life for millions of families throughout the United States. As our population ages, more families are providing care for an older adult at home, and an increasing number of people will need such care in the future. Current demographic and healthcare trends make this issue even more significant:
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.
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.
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.
My son Neil was seventeen when he sustained a traumatic brain injury at the hands of a drunk driver who hit him and his girlfriend Trista as they were walking. Trista was killed. That was ten years ago.