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How to Cope With a Nursing Home Eviction

Family members tell their stories and experts provide advice


(Editor’s note: This is the second story in a two-part series on how to cope with the eviction of a loved one from a nursing home or other long-term care facility. The first story is Nursing Home Eviction? Know Your Loved One’s Rights.)

Sally Caldwell’s late husband was considered by many to be brilliant. A professional who advanced far in his career in the federal government, his many talents included an amazing memory. He could “clear the board” when the couple watched Jeopardy together, she says. “I thought for sure he would never ever get Alzheimer’s,” says Caldwell.

But, gradually, cognitive problems for her husband emerged, beginning with small car accidents and memory stumbles. The last straw came on Christmas Eve in 2010 when he could not remember the two-block route to get to their church in a Washington, D.C. suburb. A neurological workup revealed that he had mid-stage Alzheimer’s disease.

That began a difficult six-year chapter, including the devastating experience of having her husband kicked out of a memory care facility, which had seemed, at first, to be an ideal setting for him.

“The episode is not merely a blip on the screen of life — it was one of the most painful experiences anyone can get through,” Caldwell says. “I felt totally abandoned after he was kicked out.”

“I felt totally abandoned after he was kicked out.”

Being forced to move a loved one who has dementia in and out of long-term care is traumatic for the resident and family members.

Jay Newton-Small’s father had early-onset dementia. He had been a “super sweet, happy-go-lucky Australian surfer” who ended up serving as a United Nations diplomat, she says. But the dementia drastically changed his personality.

Her father spent two years living in a nonprofit memory-care community in Washington, D.C. But his aggression grew worse.

“He punched a nurse and nearly broke her jaw,” says Newton-Small, who lives in Washington, D.C. “He escaped and was found with no pants on walking down a main street. The community said they couldn’t handle him anymore. I didn’t even know that it was possible [for residents] to be kicked out.”

Behavioral Issues in People with Dementia

Stories like Newton-Small’s and Caldwell’s are not typical for people who have dementia. Still, they are not uncommon.

Susy Murphy, owner of Debra Levy Eldercare Associates in Silver Spring, Md., has been working with older adults and their families for 27 years. Her practice receives calls monthly from people who have to move their relatives for a variety of reasons, among them, challenging behavior related to dementia.

The triggers for such behavior vary. For some, the challenging behavior does not begin until they move from their own homes, suggesting that the care, an unfamiliar place or the environment of their new home upsets them.

Graham Newton-SmallCredit: Jay Newton-Small
Graham Newton-Small

Sometimes, people with dementia initially do well after moving into a facility, but as their disease progresses, their way of experiencing the world changes, affecting their behavior.

For Caldwell’s husband, the agitation and aggression began at home. Caldwell had cared for him there for five years, until it became increasingly difficult. He grew more aggressive and adept at getting out of the house, where he could wander and get lost.

“I realized there was some part of his brain that was still working because he could remember the one escape route from our yard,” she says. “He couldn’t remember my name, so he called me ‘The Good One.’”

But he grew increasingly angry and belligerent, sometimes even hitting Caldwell. She tried hiring help and taking him to a day treatment center, but those arrangements didn’t work out.

A Home Found, and Lost

Eventually, Caldwell found what seemed like a lovely nursing home in Williamsburg, Va. It was more than two hours from their house, but she was even willing to sell her house and move nearby. And it was more affordable than ones in the Washington, D.C. area.

“The place was beautiful,” she says. “I talked to the director on the floor, and I talked to the manager. I talked to my children and signed a contract.”

Caldwell appreciated that she could bring their own furniture, and took great care to set up her husband’s room the way it had been at home.

She and her son went to dinner after moving her husband and “celebrated my first night of freedom.” She had decided to rent guest quarters at the nursing home for a week, until her husband was acclimated.

At 5 a.m. the next morning, Caldwell got an urgent call. Her husband had wandered from room to room, looking for her. He pulled the covers off people as they slept, creating fear and anger in his wake. One man became outraged and beat up her husband.

It was downhill from there. To Caldwell’s dismay, the place was terribly understaffed. Despite having her fill out lengthy biographical forms about her husband’s preferences, Caldwell says no individual care was given — no morning newspaper, no music that he loved, no food that he enjoyed.

The facility insisted that Caldwell have someone there to manage her husband. She stayed with him, hiring a part-time aide to relieve her. His agitation remained intense, despite being prescribed high doses of anti-anxiety medication by a geriatric psychiatrist.

After just three weeks, Caldwell was told her husband had to go. “All I could do was sit there and cry,” she says. The ordeal had cost her $20,000, including the facility fees, her own lodging, the private duty aide and other expenses.

Finding a New Facility

Nursing homes are required by the Centers for Medicare and Medicaid (CMS) to give 30 days notice before forcing someone out. (Assisted living is not covered under federal rules; states have their own regulations.)

But one common scenario to watch out for: The nursing home will send the resident to the hospital to be checked for a urinary tract infection or other ailment that may affect behavior. If the person has been difficult, the nursing home will then refuse to accept him or her back.

“You have a dumping situation,” says Lori Smetanka, executive director of The National Consumer Voice for Quality Long-Term Care. “If they’re threatened with a fine, they’ll take the hit rather than take them back. It is an area where there does need to be strong, quick enforcement in order to assure the facility does have some sort of penalty for violating the rights of the individuals.”

Don’t Panic, Take the Time

If you are forced to find a new place for your loved one with dementia, don’t panic and take the first place you find. Both Caldwell and Newton-Small say they found the first places they were referred to as far less than adequate.

Conduct a thorough search for alternatives. Enlist the help of your state’s long-term care ombudsman. Aging life care experts (formerly called geriatric care managers), such as Murphy, can also help. (An assessment ranges from $75 to $250, depending on locale.)

If possible, find a place that assigns a few consistent staff members to care for each resident, rather than a constantly rotating stream of strangers.

“If you are having to find another location, there are requirements in terms of ensuring a safe and orderly discharge,” Smetanka says. “As a family member looking at options, find out what services is another nursing home providing that the first could not? Might there be a better setting, something that is community based or assisted living?”

The discharging facility has a responsibility to share the resident’s records and care plan with the new place. “It really is important that if a person is being transferred that not only the family, but a receiving facility, ensures that an independent assessment be done, ensuring the records are up to date, so that there really is a clear picture of the resident’s needs and what their condition is at that time,” Smetanka says.

Be Honest About Your Loved One’s Issues

Although it may be tempting to try to downplay your loved one’s problems so he or she will be accepted by another care facilty, experts say it’s better to be forthcoming.

“My advice is to try to give as honest and complete a description as possible,” Murphy says, otherwise, you may soon find yourself in the same position with the new place.

“Years ago, I had someone just delightful,” Murphy recalls. “He was pleasantly confused, and we moved him to a very nice assisted living center. He had deficits, but seemed to do fine. Shortly thereafter, he became very sexually inappropriate with everyone — staff, residents. Everyone assumed this was brand new, but it turned out he’d been like this ever since he had dementia. The place never asked, and the family member never told.” He then had to move from what had been a regular assisted living home to one that specialized in dementia care.

If possible, find a place that assigns a few consistent staff members to care for each resident, rather than a constantly rotating stream of strangers.

“Once the set of caregivers understands the person’s normal patterns, then they can anticipate their needs, reduce anxiety and reduce calling the doctor for a drug,” says Beverley Laubert, Ohio’s long-term care ombudsman.

“We do suggest when evaluating a place that people ask how many caregivers will they have over a couple of weeks,” Laubert says, adding that over a one-month period, no more than 12 caregivers is a reasonable number, allowing for shift changes.

Leaving Could Be for the Best

Sometimes a new care facility might actually be a better fit.

After her father had been given 30 days to leave the memory care center in Washington, D.C., Newton-Small, a journalist, used her reporting and networking skills to find a residential dementia care community that also conducted research, some 50 miles from her home.

At the new facility, Teepa Snow, a nationally known expert in compassionate dementia care, carefully observed Newton-Small’s father to determine what triggered his anger.

“You have to meet them where they are and you have to know their life history to do that,” Newton-Small learned.

A lifelong adventurer, her father spent his days at the nursing home walking and walking.

Addressing Possible Triggers

“Teepa Snow figured out what the triggers were and devised a system to address them,” Newton-Small says. “He was incontinent, and the bathroom was a major trigger. So, instead of bringing him into the bathroom, the staff would direct him to an open empty room, where a couple of nursing assistants would change [him] and he would continue to walk. He was much more accepting, but it took them a while to figure that out. Ultimately, he didn’t have any more behavioral issues.”

It turned out that Newton-Small’s father had gone to a boarding school as a child. “Knowing that boys often haze in the bathroom, [Snow] figured out that he was afraid of bathrooms, that he was back in that place,” Newton-Small says.

By avoiding bathrooms and making sure only women helped him with toileting, the staff was able to ease her father’s aggression around going to the bathroom.

Newton-Small went on to found the company MemoryWell, which helps families create life stories about their relatives with dementia.

Caldwell’s husband, too, ended up with better care. After a saga that included briefly bringing her husband home after he’d been kicked out of the care facility, followed by a residential hospice for a few months, Caldwell discovered a good alternative for the last months of her husband’s life.

She found a small group home, run by a woman from the Philippines and a team who provided loving care. “The biggest mistake I made was not knowing these small homes existed,” she says. “That would have been my first choice.”

Not Enough Adequate Facilities

Unfortunately, experts say, there are not enough places equipped to help the subset of people with dementia who have extremely challenging behavioral problems.

Murphy says families may have to cast a wide geographic net. “There are some (care facilities) that feel more comfortable taking on difficult behavior,” she says.

In some cases, the dementia may be complicated by mental illness. “There are specialized places that handle more serious mental illness aspects, just like there are nursing homes that can take care of people on ventilators, but there are not many of them,” says Dr. David Gifford, chief medical officer for the American Health Care Association, a trade group for long-term care operators.

“We do have members who specialize in that and people do well,” Gifford says. “There are state programs that specialize in this, and the Veteran’s Administration. But often they are not geographically close to where family members are. It would be great to have these everywhere.”

Beth Baker
By Beth Baker
Beth Baker is a longtime journalist whose articles have appeared in the Washington Post, AARP Bulletin, and Ms. Magazine. She is the author of With a Little Help from Our Friends — Creating Community as We Grow Older and of Old Age in a New Age — The Promise of Transformative Nursing Homes.

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