Caring for an older person with multiple needs can take a toll physically, emotionally and financially. Reed Abelson reports for The New York Times on how reliable home care is hard to come by and not affordable over the long-term.
Frank Lee, the husband of one woman with dementia, was tending to his wife morning, noon and night. He ended up putting her in a respite program at an assisted living facility so he could take a short break. While he was away, she fractured her sacrum. Mr. Lee was at a loss to find home health aides he could trust, the plight of many older couples.
Eight million older adults suffer from dementia or need help with at least two activities of daily living, such as bathing and toileting. Only a small fraction of them–one million–have paid help outside a nursing home. Three million have no help.
Our federal government does little to help people who need home health aides. Medicare only covers very limited home health health care and, then, only for people who are homebound and who need skilled nursing on an intermittent basis or skilled therapy. People with dementia don’t usually fit these criteria. If you don’t have Medicaid, you are generally out of luck in terms of government assistance and, even with Medicaid, there are often waitlists for home care.
Most older adults are cared for by family, not professionals. They cannot afford $27 an hour, the going rate for a home care aide. Paying for fulltime home care usually means expenses of tens of thousands of dollars a year. Usually it is the older adult’s spouse or daughter who takes on the role of caregiver.
People who can afford to pay for a caregiver often cannot find one with the skills to take care of their loved ones. They are often forced to hire untrained caregivers. Paid caregivers in the US rarely earn a living wage; they often can’t count on fulltime work. And, they tend not to get health insurance benefits. It’s no wonder that there is a shortage of paid caregivers; they can get better jobs for the money.
What to do? Plan ahead. Talk to your loved ones about likely long-term care needs. Even if you have limited resources, it is better to be prepared. Most people do not have these conversations. Families are often unprepared. Many families cannot save enough to offset the cost of long-term care. But, if you plan ahead, you could qualify for Medicaid.
Keep in mind that long-term care needs can be extensive. Sometimes, two people are needed just to move someone from one place to another. Without assistance, simple tasks become huge burdens.
Mr. Lee wonders “What’s the end game look like?” Is it right that he should watch his wife, who is already severely demented and unable to take care of herself or speak, deteriorate further? “As she disintegrates, I disintegrate.” When people are terminally ill–six months or less of life–Medicare covers hospice care, which covers some home care. But, good luck getting it if you’re in a Medicare Advantage plan. And, even in traditional Medicare, finding an agency that will provide hospice care can sometimes be challenging.
- Traditional Medicare offers better home care benefits than Medicare Advantage
- Need home health care? Don’t count on Medicare
- Caregiving: Keeping Parents Healthy – Water, Walking, Watch out for Delirium
- Family caregiving: Costly, lonely and stressful work
- How to be a good long distance caregiver
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