In this week’s TIME cover story, “The Long Goodbye” (available to subscribers here), journalist Joe Klein writes about managing the care of his ailing parents, both of whom suffered from dementia, until their deaths last winter eight weeks apart. He spent “five months as a death panel for both my mother and my father,” Klein writes.
For many families facing the same journey at the end of life, the medical decisions that must be made can be overwhelming. On Thursday, we offered readers guidance on how best to prepare for end-of-life care. Below, we offer information on the various housing options available for aging or ill parents and loved ones; there are many alternatives to the standard nursing home.
“What is best for one person’s parent might be utterly wrong for another,” says Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center and author of The Best Care Possible. “But it is possible to discern what treatments and elements of care best fit each individual at each point in time.”
Here are some housing and care options to consider:
Home and community care. “Most people really want to be at home. They enjoy hearing their dog barking outiside, smelling food from the kitchen, having the familiar quilt on their bed,” says Malene Smith Davis, CEO of Capital Caring, which provides palliative care and guidance for families. Home care services can involve nurses, physical therapists, speech therapists, occupational therapists and social workers, depending on the patient’s need. Some home services include adult day care, daily check-ups and Meals on Wheels programs. Medicare, Medicaid and private insurance may pay some home care costs related to medical needs.
- Medicare may pay for the home care services of family members needing short-term home care — usually just a few weeks
- Medicaid covers long-term home care services, but each state determines who is eligible and which services are covered
Palliative or hospice care. For people needing end-of-life care, palliative and hospice care are two options that should be considered. Palliative care typically occurs at hospitals and is for patients with advanced disease, but without time limits in terms of life expectancy. These patients typically receive treatments intended to cure their ailments.
Hospice care is for patients with terminal illness. Care is typically provided at home and involves medical professionals as well as spiritual and psychological experts.
“Having an early conversation about palliative and hospice care makes the transition easy rather than abrupt,” says Dr. Gregory Hanson, a specialist in geriatric and palliative medicine at the Mayo Clinic. “Physicians are trying to become more proactive and sensitive about having these conversations, but it always helps if the patients are willing to talk about what they want too.”
Palliative care is generally covered by health insurance. Hospice is a Medicare program but it also covered by many states’ Medicaid as well as private health insurance plans.
The program of all-inclusive care for the elderly (PACE) and the social managed care plan are two alternative programs offered by Medicare.
- PACE. An optional benefit under both Medicare and Medicaid for elderly people who meet the requirements for nursing home care. PACE offers medical and social services at adult day health centers, homes and inpatient facilities. Many patients can continue home care while receiving services. PACE requires a fixed monthly payment from Medicare and Medicaid. Participants may have to pay a monthly premium, depending on their eligibility.
- Social managed care plan. This option provides Medicare benefits offered by standard managed care plans as well as additional services, such as prescription drug benefits, short-term nursing home care, home services, personal care services, adult day care and medical transportation. It may also include eye, ear and dental benefits. Each plan has different requirements for premiums and all plans have co-payments for some services.
Board and care homes. These are group living arrangements for people who cannot live on their own and need help with basics like eating and bathing. According to the Medicare website, private long-term care insurance and medical assistance programs will cover this housing arrangement in some cases; Medicare and Medicaid typically will not.
Assisted living (non-medical senior housing). For elderly people who only need help with simple tasks like grocery shopping and laundry, assisted living may be a good option. Residents live in individual apartments within a housing complex with other seniors. The cost typically includes monthly rent, plus fees depending on other services needed.
Subsidized senior housing (non-medical). Similar to assisted living, subsidized senior housing is geared toward older people with limited income. Some facilities offer day-to-day assistance like shopping and laundry for residents who continue to live independently within a senior housing facility. There are both federal and state programs that help cover the costs.
Continuing care retirement communities (CCRCS). These housing communities can accommodate residents who require either independent living or assisted living or nursing care. Residents can be moved from one housing option to another based on their changing needs. CCRCs can get expensive given that most require large payments up-front in addition to monthly fees.
“We can expect — and must insist upon — expert medical care that is consistent with parents’ needs and personal preferences,” says Dr. Byock. “Beyond these basics, we have the capacity to care for people in ways that firstly ensures their relative comfort, but also allows them to feel wanted, worthy and dignified during their terminal frailty.”
For help finding the most suitable housing option, try the Eldercare Locator, a public service of the U.S. Administration on Aging.
Watch Joe Klein discuss his TIME cover story, “The Long Goodbye,” below, and read the full story, available to subscribers here.