Like hotels and hospitals, there are good and bad nursing homes. Even the best isn't the same as living at home, but residential facilities offer round-the-clock care that may be impossible to get at home.
Some people with ALS choose to go to nursing homes as an act of control over "being a burden" to others. But often the reason is that caregivers are unable to give care because of age, sickness, employment, location, other responsibilities or simply being overwhelmed.
Moving to a nursing home raises emotions for all concerned - guilt, abandonment, desolation and more.
"My daughter-in-law asked, 'How could you take him to a nursing home?'" recalls Betty Debban of Cedar Rapids, Iowa, whose husband, Charles, had ALS and lived in a nursing home for five years until his death at age 85. "Well, several years ago we talked and decided that if either of us needed skilled care, we'd go to a facility. People shouldn't feel guilty, because you have to consider all the ramifications."
Sometimes life even gets better at a care facility, thanks to activities not available at home, like pool therapy, classes or people to talk to. It's never easy, but there's relief in knowing competent care is available when needed.
Figuring it out
Bonnie Flynn of Gainesville, Fla., says she and her loved one with ALS, Tom Horn, "didn't understand Medicare" at first, and learned too late that Tom (who died in August 2006) should have ordered medical equipment such as a communication device and wheelchair upgrades while still in assisted living. Once Tom, 67, moved into a skilled nursing facility, "we fought all these battles but he was no longer eligible."
Nursing homes residents still qualify for hospice, however. Medicare will pay hospice workers to supplement nursing home care for eligible residents, including those on vents. Medicare also pays for brief respite stays at residential facilities, allowing a trial run of a potential location.
All this complexity makes it helpful to have a guide. "Consult an attorney and the Medicaid folks in your state," advises Leslie LeBlanc, whose elderly mother with ALS lives in a nursing home in Rockland, Maine. He notes that new rules make it harder to give assets to others in order to qualify for Medicaid (which pays for nursing homes, unlike Medicare).
Free, knowledgeable help also can be found at area agencies on aging (available in every state; check the phone book under "senior services"). Counselors or "caregiver specialists" provide information on federal/state programs and nursing home residents' rights under the law. Counselors also have lists of facilities, questions families should ask, and criteria for comparing facilities.
Choosing the right place
Caregiver specialists also can help assess whether a nursing home is the best placement.
Ann Coleman, 78, who lived alone, wishes she had tried moving to a smaller accessible apartment when her ALS progressed, rather than directly to a care facility in Festus, Mo. "I think I could have handled that easily then, with the help of Elder Helpers (in-home aides)."
Instead of a nursing home, a person might be happier in a setting with a livelier mix of people, such as assisted living or an adult care home in a private residence, says Susan Blommer of the Pima Council on Aging in Tucson, Ariz.
A smaller setting allows a better staff-to-resident ratio. By contrast, larger facilities have more to offer. Flynn and Horn enjoyed the restaurantlike dining room and many activities and programs at his state-of-the-art facility, as well as the opportunities to socialize.
Flynn recommends asking if a facility has "ALS protocols" - procedures useful in caring for people who are paralyzed, speechless or on a vent, such as Hoyer lift operation or communicating via alphabet board. If not, ask administrators if they're willing to learn about ALS, make changes and train staff to meet the unique needs of ALS patients.
Planning ahead is the best way to land in the best spot. "When you know you have ALS, get on waiting lists at many assisted living and nursing homes," advises LeBlanc.
Coleman is blunt about the realities of nursing home life.
"They're concerned about the residents not as a family member would be, but as an institution would be. There's no comparison to being cared for at home. It was a big change from living alone to living with people in varying stages of Alzheimer's disease, and being told what to do all the time. I had some adjusting to do both in thinking and in my personal habits."
The quality of the staff makes all the difference. High turnover and poor communication between shifts results in the frustration of having to constantly retrain staff on special ALS procedures.
"When you have a caring mix of people, care is great and it goes down from there to poor," says Mike Harrold, 49, who lives in a nursing home in Nanuet, N.Y. Besides missing his 6-year-old daughter, he says the worst part is when "staff treats me like a subhuman."
Family and friends serve as protectors and advocates. "Your spouse should come at random times" to check on you, Harrold says.
"Learn how things get done," advises Flynn. After Horn lost his speech, she accompanied him to weekly meetings with administrators "to be sure problems got dealt with from the top down." Before the meeting, Horn would painstakingly dictate his concerns via alphabet board to Flynn - late medications, clueless staff, slow response time - then review them one at a time with administrators.
Ultimately, say individuals and families, attitude adjustment can make an unpleasant situation more bearable.
Notes Betty Debban, "From the beginning, Chuck's attitude was, 'This is the way it is, so let's make the best of it.' He said nothing is ever going to be perfect, even at home."