Like many caregivers, Kim Boddy has learned the hard way how difficult it can be for an elderly family member with dementia to move from one place to another.
Boddy had to make difficult decisions to keep her mother safe. She had to witness her mother’s increasing confusion and then absorb the older woman’s ire over restrictions on her independence.
Over the last 10 years, Boddy has helped her mother, Marguerite Forbes, a retired Philadelphia school teacher and administrator, move from an apartment to independent living to assisted living and finally, this past December, to another assisted living facility closer to Boddy's house in North Wales.
Forbes, now 88, resisted but adjusted fairly well to the first move, which came soon after she'd recovered from back surgery. It allowed her to stay in Jenkintown and walk her old neighborhood after her doctor took her driver's license away. Within a couple months, she was settled in. But her memory kept getting worse and she needed more care. Boddy tried GPS monitoring, but there were falls and reports of aimless wandering.
Boddy moved her mother to an assisted-living setting where she would no longer be free to leave. “This was an extremely difficult decision for me as I knew I would be taking away her independence for the remainder of her life,” she said.
That time, her mother did not go gently. "She was just hostile," Boddy said. Her mother would often berate her. "Why are you leaving me here? How can you do this to me?"
When their visits were over, Boddy would sit in her car and sob. “I literally could not drive home.” Then a curious thing happened. She’d call her mother later in the day and her mother would be fine, “like nothing had happened.” Boddy’s distress lingered all day. Her mother had forgotten about hers.
Such are the special trials of transitions with dementia. It's hard enough for older people to move with all their faculties intact. Imagine leaving behind a house you loved, along with most of your belongings, and moving to a smaller place where you're surrounded by strangers. Imagine that you're doing it because your partner has died or you have a serious illness. It would take a lifetime of coping skills to find your new footing, to find the feeling of home amid so much change.
Now imagine that your memories, your ability to plan, your ability to learn are out of whack. How much more confusing and upsetting would change be for you?
That means that family members and facilities employees need to be extra-understanding during the weeks, and sometimes months, after someone with dementia moves, experts on such transitions said.
It’s not you, it’s the disease
Boddy, 62, joined a caregiver support group at the Alzheimer’s Association’s Delaware Valley Chapter. She learned to emphasize the positive with her mother. She felt guilty that her mother felt bad, but also knew she had made the right choices. She came to understand that her mother’s bad moods would pass. The most recent move went much more smoothly for a sad reason. Her mother is now much more impaired.
Fredericka Waugh, associate director for diversity and inclusion at the Alzheimer’s Association Delaware Valley Chapter, helps caregivers such as Boddy accept that it’s OK to get back to their own lives. “You’ve got to realize, it’s not you. You didn’t cause this,” she tells them. “She’s just confused and frustrated, and that’s the disease.”
Waugh said it’s often easier on the person with dementia to make transitions within senior communities that have multiple levels of care. If seniors at home are fighting a lot about the move, it may be a little early. Families can buy some safe time with in-home help or a day program. Often something will happen — a fall, a pot left hot on the stove, unpaid bills — that will force the issue. “Something makes them realize, ‘I can no longer be by myself,’ ” she said.
Juliet Holt Klinger, senior director of dementia care for Brookdale Senior Living, said families should be talking about transitions well before a crisis forces a move. And, older people with dementia are often more willing to move if they know their diagnosis. In the past, she said, people weren't told. Now, doctors tell patients they have dementia about half the time.
There’s general agreement that telling someone who begs to go home, “This is your home now,” is counterproductive, said Molly Fogel, director of education and social services for the Alzheimer’s Foundation of America. Instead, you can spend a few minutes reminiscing about the old house and acknowledging that it was hard to leave it. After that, try changing the subject or suggesting an activity.
You can try something like, “While we’re waiting for the car to come, what can we do?” Or there’s what Fogel, whose organization has a support group just for people with a loved one transitioning to long-term care, calls the “therapeutic fib.” Say something like, “You can’t go home because the house is being fumigated.”
Experts said people adjust better if they're involved in decision making and encouraged to do things that make them feel productive. "Historically, in care for people with dementia we've focused on their deficits and what to do to take care of them," said Kelly Carney, corporate director of memory care services at Acts Retirement Life Communities. "I think we missed the fact that they had many retained strengths."
Klinger said that talk therapy can help distressed people work through their feelings even if they don't remember it later.
Useful tips for the transition
Here is some practical advice from Carney, Fogel, Klinger and Waugh:
Ideally, take your loved one to visit his or her new home before they move in. Meet the care team. Have lunch. Participate in an activity.
Talk up the benefits of moving. “You won’t have to cook and someone will do your laundry,” Fogel suggests. Waugh agrees. “Make it a big deal,” she said. “Get the balloons. ‘Look, you’re going to have people there to talk to. You’re going to have social activities there.’”
Expect the move to be tough. Know that the worst of it will pass.
This is not the time to redecorate. Take the favorite chair, comforter and pillow. Put the nightstand on the same side of the bed. Keep the lamp and the radio. As much as possible, let your loved one have a say in the move. “The goal is always to involve the person to the extent they’re able without overwhelming them,” Carney said. So, ask your mom, “Do you want to take Great Aunt Stella’s vase or these family pictures?”
You don’t want to be at the new place all the time, but visit and take your loved one out occasionally. “It’s really important for that person not to feel dropped off and abandoned,” Klinger said. Take them interesting things to read or books on tape, Waugh said. “Bring in the sunshine, so to speak.”
Talk to the staff about what your loved one’s life was like. Let the staff help you. “We move in thousands of residents every year and we have a lot of expertise in helping that person adjust to the new environment,” Klinger said.
If your person has always been a loner or a malcontent, that may not change. Loners may find a lot of new social activity disorienting.
Everybody adjusts on a different timetable. Some do it in a few weeks. A few will never be happy.
If there’s a lot of anger about a placement, an elder-care lawyer can help defuse the situation and draw up the right paperwork. If your father threatens to call the police on you, give them a call first explaining the situation.
Questions to ask before a move
How is the staff trained to work with dementia patients?
How much choice do residents have about food and activities? Maximizing autonomy should be a top goal.
If a resident has always been an early — or late — riser, will that person be able to continue that schedule at the new place?
If the person is still relatively independent, is the place close to public transportation?
Are there activities your loved one would like?
If your loved one has always liked to go outside and is going to a memory unit, is there a way to go to a secure, outside area without staff? Is there a walking group?
Many facilities stress their fancy food. But are they serving food your loved one would actually want to eat?
What are the online ratings?
What is the staff turnover rate? Will my loved one be cared for regularly by the same staff members?
What happens if your mother runs out of money? Does the facility take Medicaid?