I was fascinated by both Dale Russakoff’s recent New York Times blog post on dementia care and the reader comments her article generated. Dale’s piece was a list of tips on how to care for a person with Alzheimer’s and similar diseases. Many were sensible enough, but they didn’t begin to describe how difficult it can be to care for a dementia patient.
The real lesson is a simple, but painful, one: Sometimes, it is no longer approporiate or safe for someone to remain at home. Sometimes, as much as most of us resist the thought, the best option may be an assisted living facility or a nursing home.
Some advocates strongly disagree. They would shutter all nursing and assisted living facilities tomorrow. Anyone, they say, can be cared for at home.
They are wrong, just as those who hustle frail relatives into facility care long before they need it are wrong.
It can be very difficult for a dementia patient to stay at home. It requires a complex care infrastructure. Not only does their home need to be made safe, but their care can be a staggering burden on their child or, especially, their spouse.
Even in the easiest of cases, a family caregiver must become a small business person. She must manage transportation, food, and medications. She must pay the bills. If she has hired a home health aide, she must manage their time, deal with those circumstances when the aide is late or does not come at all. She may have to pay the aide’s Social Security taxes and withhold income taxes. She may have to deal with Medicaid or private long-term care insurance.
And that is the easy stuff. Family members may have to learn personal care skills. When I was writing Caring for Our Parents, I met May Barrett, who had to transfer her husband Walter from his bed to his wheelchair to the commode. May weighed only 90 pounds. Walt weighed almost 200.
But the emotional stress may be toughest challenge of all. Watching your parent or companion of decades lose so much of both themselves and their ability to manage even the most basic tasks is frightening. If they suffer from hallucinations or become violent, all these challenges are compounded.
And then there is the financial cost. Depending on symptoms and overall physical condition, someone with dementia may need round-the-clock supervision. And that can be more pricey than assisted living and just as costly as a skilled nusring facility.
And keep in mind that facility care is not what it once was. Family have options today that did not exist a decade or two ago.
These are painful choices. And with good training and advice, it is often possible to keep a patient with Alzheimer’s or other dementia at home for many years. If you follow all the tips in The Times blog, you can make your home environment a bit safer. But keep in mind that the time may come when even that is not enough.