Transitioning to Long-Term Care
For many people caring for a loved one with memory loss, the time will come when they must transfer that person into long-term care. This is rarely easy.
“It is important to understand that a care transition removes your loved one from a familiar and reassuring environment and routine to a new and challenging environment,” says AFA social worker Linda Mockler, LMSW, M.Ed. “Let your loved one know you know this change is difficult for them; listen and empathize. Assure them you will be there for them throughout the process.”
No one size fits all.
Melanie Budd, RN, MS, Dementia Alliance of NC, says there is no one-size-fits all solution for making the transition to long-term care.
“It depends on what’s really going to be most important to your person. Ask them what they like best about their home.” If they say they like being able to go outside, look for a place where they can do that safely. If they are physically active, make sure the facility’s security is good so your person can’t get out without being noticed.
“I’m a big believer in talking to people who are part of your community,” Budd says, mentioning support groups, primary care providers or members of a faith community. “That’s how you start to screen where you’re going to look.”
Much depends on the person’s level of awareness.
“Some people living with dementia have a tremendous amount of insight.” In those cases, start the conversation by suggesting that living at home is no longer working. “Be gently out front.”
“For other people those conversations don’t work. If I don’t have awareness that I need help, then explaining that I need help is only going to make me mad at you.
“My approach would be a conversation. ‘What would your preference be now that you can’t live here?’” Ask them whether they want to live near family or near where they are currently living.
If possible, start the conversation early, framing it as an “if something happens” situation. “Do it more theoretically.”
Challenges of moving.
It’s a challenge to go from the familiar to the unfamiliar where “this place is scary because I don’t understand it.” Other challenges include adjusting to living with many people after living with just a spouse or alone, and “we underestimate the challenge of routine. How do we replicate that routine as much as possible? Some things are so automatic we don’t realize how embedded they are.”
Other factors are loss of independence and being in control. “In a group setting your individual control is lessened. It might be as simple as you don’t like the music.”
And then there’s the loss of memories made in their home, such as where they had family dinners. “The loss of the places where those memories are anchored can be really hard.”
For family care partners the challenge often involves guilt and, in some cultures, shame, Bunn says. “It’s the uncertainty of what’s going to happen. Is this the right decision? Is it going to go well or be chaos?
“For many families things from childhood resurface and family dynamics start to come out.”
Some family caregivers place their loved one in a facility because they are exhausted by the care responsibilities. Once they’ve had a break and catch up on sleep, Budd says, they begin to doubt their choice and consider bringing the family member home.
“I encourage people to journal through the decision-making process. If they start having doubts they can see, ‘I do remember it being that challenging.’”
As for whether to involve your person in the decision-making, Budd says people with a good level of insight can be included, but people without may become confused by the choices.
A person with insight can be taken to the facility before moving, but not on your first visit. When you do take them, arrange for them to have lunch or join an activity so they can “not just look but experience” rather than go on formal tour.
Moving forward.
How much notice to give the person that they are moving also depends on their awareness level.
“I’m not a big believer in tricking people. I don’t feel that sets people up to feel safe in an environment.”
Do “a lot of validating,” Budd says, giving an example, “‘I understand this is not what you want to do and I feel the same way.’ I use a lot of ‘ands,’ not ‘buts.’ When you use a ‘but,’ you wipe out everything you’ve just said. ‘I know you don’t want to do this, but you have to for your safety.’”
Begin looking for placement possibilities early.
“I want everybody to have a back-up plan from diagnosis when it’s
not an emergency.”
If, when the time comes, you’re feeling anxious, it may be better
to have a secondary person like a doctor or lawyer tell your
person they are moving because people with dementia pick up on
emotions and can become anxious themselves. “Authority figures
yield a lot of power for the older generation.”
Budd is uncomfortable with facilities that advise families not to
visit for the first weeks while their person adjusts.
“The last thing they want is for their person to feel deserted.”
A plus is that relationships can deepen through separation.
“You’re the only person who’s got memories of the person.
Other people can do tasks. If you’re busy doing tasks, it’s hard to
be in a relationship.”
The new living space can benefit your person in another way.
“There’s a forgiveness about being in memory care,” Budd says.
“The rules are more fluid and there’s a wider range of acceptable
behavior. If I make a mistake, it’s not always identified as a
mistake. It’s just something that happens.”
