“For 25 years I’ve been planning my retirement with my husband. We were going to do all this stuff—I thought I would be doing anything I want.” That’s how Nanette Virgilio of Highland Falls envisioned her life after decades of working. But a few years ago, those plans changed. Her mother began showing signs of dementia, which has progressed to the point that Nanette is now her full-time caretaker. Virgilio even stopped working early to look after her.
As lengthening average lifespans in the US escort our elders into the realm of age-related illnesses, longterm care for a family member with a progressive, incurable illness (one from which there will be no recovery to normal health) is becoming a familiar family tale. Roughly five million people in the US have Alzheimer’s disease, the most prevalent form of progressive illness, and many of them are being cared for by a family member who hadn’t expected to do so.
The Caregiver Challenge
Any longterm illness is a challenge to a caretaker who must add that task—usually without much warning—to existing daily demands. Dementia, defined as a decline in cognitive function that is severe enough to interfere with day-to-day function, is the most daunting to weather. Alzheimer’s progresses from its best-known feature of memory loss to broader and deeper cognitive problems: general confusion and disorientation, impaired judgment, loss of control over a variety of essential brain-controlled behaviors like eating, bathing, walking, and even swallowing. A similar decline is typical of other dementias, and of Parkinson’s disease in its later stages.
Michelle Muir, who works for the Hudson Valley chapter of the Alzheimer’s Association, is her father’s caregiver. “My father lived with us for three years after my mom passed, and things started to happen that were kind of unusual,” she recalls. “He had always been the head of household, paying the bills and so on. But we noticed that gradually he was having trouble remembering if he paid a bill, and didn’t know how to find out if he had.” At first it seemed her dad might be grieving the loss of his wife. But eventually, Muir says, symptoms became more complicated and irrefutable. “A person can lose some of the most simple daily functions. Sometimes my father will not recognize his breakfast or a cup of tea. He asks, ‘Should I drink this?’ even though he knows I’ve just made it for him.”
It was through her father’s illness that Muir discovered the Alzheimer’s Association. “When he was first diagnosed, I didn’t know what it would mean,” she says. “All I really knew about was the forgetting. I had a care consultation [through the association], and I went to a support meeting.” That helped a lot, she said, but the task gradually got more demanding. “If you have a full-time job, or just a full life, you wonder how can you possibly wrap your arms around this, too.”
Fortunately, there’s a lot of help for getting through all stages of caring for a loved one in decline. There are even some benefits a caregiver receives that no other experience can offer.
End-of-life decisions affecting money, property, and medical care are best done in good health. So, though it sounds grim, planning as if dementia were around the corner is wise. And it’s comforting to everyone to know an elder’s wishes about such things as when and how long life support should be continued in the case of coma, and if the elder would prefer to be at home, in a hospital, or at a hospice for the last days of life. Those wishes should be written in legally valid advance directive documents. (See “Advance Directives” in Chronogram’s July 2007 issue, available at www.chronogram.com.) Writing out clear and specific financial and estate decisions, and acting on any that merit immediate attention, can avoid legal tangles and family battles later. A lawyer specializing in elder care will assist in getting everything properly handled.
Virgilio says she was able to take care of most of those decisions and documents during the early stages of her mother’s illness. “But,” she adds, “my mom made some decisions about her will that might be different if she had done it before any symptoms appeared.” Virgilio emphasizes two things that must be done ahead of time—including for yourself, as early as your 50s: Take out an insurance plan specifically to cover longterm care (you can’t do so for someone who is already ill), and set up a trust fund that a caretaker can access but which health insurance companies cannot (the fund must be in place for five years before drawing from it).