The going is, well, going to get rough. Here is who to reach out to.
With a Little Help
For the millions of family caregivers of people who are living with Alzheimer’s, there comes a time when love, dedication, and basic skills can no longer match their loved one’s needs.
Perhaps his or her schedule doesn’t have the flexibility to incorporate the many hours of care required every day of every week. Perhaps greater expertise is needed. At this juncture, many caregivers turn to home care providers to fill the gaps.
"Family caregivers typically contact an agency because of caregiver burnout or scheduling difficulties," says Lily Sarafan, president and COO of Home Care Assistance (HCA), which provides non-medical in-home care to seniors across the United States and Canada. "It's a very physically and emotionally demanding job, and they shouldn't feel guilty about seeking outside help."
When you think about optimal caregiving, it’s important to bear in mind that it’s about more that the burden or the cost. Start thinking about it as a paradigm shift, advises Sarafan. The goal is to help your loved one thrive in the place they want to be the most — at home.
The greatest advantage of home health care for anyone with dementia is familiarity of surroundings. In a world already threatened by confusion, the disruption of a move can be unsettling.
Non-medical home care services — whether obtained through an agency or independently — help with activities of daily living such as dressing, bathing, or toileting. Or, they might provide a loved one who is still somewhat independent assistance with activities such as meal preparation, housework, shopping or medication management.
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The Opposite of Giving Up
Most people aren’t trained as nurses, or social workers, or dementia experts, and as the disease progresses, they find themselves under increasing stress.
Many caregivers “think there’s something wrong because they can’t manage it all themselves,” Sarafan says. “But they need to know they can be a better daughter, or son, or spouse, or family member, or friend when they’re not exhausted and overwhelmed. That way they can spend more quality time with their loved one.”
Family caregivers need the most help with personal care tasks, which is not typically covered by private health insurance programs or Medicare, according to the Caregiver Action Network. So unless your loved one purchased long-term care insurance prior to diagnosis, help will be limited by what you can afford.
Some “dual eligibles” (those who receive both Medicare and Medicaid) may qualify for limited state or federal assistance. However, most costs for non-skilled care will come out of pocket.
Medicare only pays for home health care services if the person requires intermittent skilled nursing care, physical, occupational or speech therapy, is considered homebound, and is under a physician's care. Services must be ordered by a physician and are paid for by "episode" of care — up to 60 days maximum, depending on care required.
If your choices appear to be either becoming a full-time caregiver yourself or placing your loved one in a residential care facility, you might want to consider the third option of in-home care.
“It honors the patient’s wishes to stay at home through end of life and allows the caregiver to live his or her own life,” Sarafan explains.
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About this article: No Place Like Home is one of an 8-part series provided to the ajc.com by Alzlive.com - a distinct voice in the online caregiver landscape, devoted to family who are caring for those with Alzheimer's or other dementia.
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