Recently I spent four days with my frail, 90-year-old parents, and I've concluded that for many, if not most frail older adults, remaining at home is overrated and may even be dangerous to their health. My view goes against not only the strong preferences of my parents, but the majority of people, young and old, in our country.
Regarding my parents, nine years ago it was clear to my brother and me that they were no longer able to remain in their home without assistance. They have 17 chronic diseases between them: blindness, deafness, normal pressure hydrocephalus (NPH), and stroke to name just four. My father had been using a wheelchair most of the time, and my mother had been diagnosed with Alzheimer's disease. They would not consider exploring an independent or assisted living facility. The compromise we finally reached was that we would move them to a new, "wheelchair friendly" house two blocks from my brother's home in Victorville, California, a community about two hours north and east of Los Angeles.
This arrangement worked well for the next three years, until my parents became so frail that they needed full-time care. My brother, who has six children and holds down two jobs, was going over to our parents' home as many as two or three times a night--whenever my father would fall on the way to the bathroom. Again, their preference was to remain at home. For the past six years our parents have been cared for by live-in direct-care workers. My father, who is now bedridden, has made it abundantly clear that he wants to die and spends almost all day in bed. He has refused any physical therapy or any exercise program that could have restored his ability to walk after successful surgery for NPH.
Would they have been better in a good assisted living or skilled nursing facility? Yes. There are three reasons. First, they are socially isolated in their home, despite frequent visits by my brother and his family. In an assisted living or skilled nursing facility, they would have had more social activities, including interaction with other people--residents as well as an array of health care professionals. Second, they would have more structure in their lives and better care, including exercise, required bathing, and clean rooms. Third are the financial and other stresses that come with care provided in the home, e.g., a legal suit by an aide who may have been injured using a Hoyer lift, the stealing of my parents possessions, and the almost constant turnover of staff.
If I were to do it over again, I would have strongly insisted that my parents go into assisted living when they were in a condition that would have allowed them to benefit. Better yet, I wish there were an On Lok/Pace site nearby or that PHI could help strengthen the direct care workforce and the organizations that employ them in Victorville.