The transition into memory care can be difficult for family members and loved ones with dementia alike—the best strategies allow family members to grieve and loved ones to maintain their dignity throughout the process.
Chris Ebell, an occupational therapist specializing in geriatric populations for more than 30 years and an adjunct professor and instructor of programs on dementia care for more than 20 years, has helped many families with the transition into memory care over the years. In the final installment of this Advice from an Expert series, Ebell provides tips and strategies to support your loved one, and yourself, throughout the process.
Do you have suggestions for handling the move emotionally and physically?
It’s not uncommon for family caregivers to ignore or neglect their own needs as a loved one transitions into memory care, Ebell notes.
“Family members or loved ones experience significant trauma when they are involved in this transition with a parent or a loved one,” Ebell says. “That’s something support workers need to clearly understand. It doesn’t matter if the family knows this is exactly the right place and exactly the right time. The trauma is still there because they are grieving a loss. They’re losing a parent. They’re losing a loved one. They need to grieve. Grieving is something humans need to do to get over humps. But what we really need to do is think, ‘How do I support this loved one?’”
One strategy that Ebell says might “sound controversial” is to use what she calls “therapeutic lies” to support loved ones throughout the transition.
“Everyone in the family has to be on board with a therapeutic lie. I’ll say something like, ‘You know what? There’s all this mold in this building; they’re asking that you move out for a specific period of time. While you’re gone, I’m going to set up another place with all your furniture,’” Ebell says. “In my mind, I’m preserving their dignity, because I am not coming to them with a conversation about them having dementia or something being wrong with them.”
Ultimately, there’s no catch-all approach, because everyone handles the transition differently. Memory care communities can provide resources and offer personalized suggestions to prepare for the transition.
When should family members discuss the move with their loved one?
Opinions vary about the best time for family members to broach the topic of memory care with a loved one. Again, the best strategy depends entirely on your loved one and their stage of dementia.
“If I can, I want to avoid the conversation that says, ‘You need more help.’ Generally, by the time they need 24-hour care, people with dementia are no longer able to identify the fact that they have a problem. So, if you suggest they can’t do something, they can get very angry. People tell me they’re in denial. That’s not denial. They’re not putting this on. They truly believe there’s nothing wrong with them,” Ebell says.
One way to avoid that conversation would be to simply say, “I want you to see this new place,” Ebell adds. “Or some people talk about validating everything that they are instead of just saying they have dementia. You could say, ‘You have so many gifts to give; I would love you to meet some people who would love to share things with you.’”
Which personal items should we bring?
“I would try to get as many of their things into the new place as possible,” Ebell says. “Their furniture, their bed, or at least a room of their old home. I want it to be as familiar as possible.”
Ebell recalls that when her father transitioned into memory care after being diagnosed with Alzheimer’s, he brought a large tool chest with him, because he had always loved working with his hands and his tools.
“He didn’t put too many tools in it, but that was important to him,” Ebell says. “I want to make it extremely familiar.”
Are there support groups of others who are going through something similar?
There are many, many support groups for family caregivers of loved ones with dementia. The key is to keep trying until you find one that works for you.
“I highly recommend support groups. But I also say that with a caveat, because each support group is different,” Ebell says. “People who are there—their loved ones might be at a different point [from that of] your loved one. People might say, ‘I tried a support group, and it wasn’t for me.’ I would say, ‘Try another one. There are so many out there—you know what?—you didn't get the right one for you.’”
Ebell has seen people in support groups become lifelong friends.
What do communities do to make the first few days of the transition easier?
The key to a successful transition into memory care is engagement, and that’s exactly what staff and residents will focus on during your loved one’s first few days there.
“They’re going to try to get them involved. If they know this person, they’re going to know how to engage them. They’re going to know what he or she may particularly enjoy and keep it going on. Or you’re going to discover what they enjoy. They absolutely work very hard to engage that person initially so they aren’t sitting in their room alone,” Ebell says.
Communities might also pair a new resident with a neighbor to help ease the transition, Ebell adds.
How do you stay connected with your loved one after the transition?
Because family caregivers are maybe in the process of grieving when their loved one transitions into memory care, it’s important that they focus on their own needs in maintaining the relationship going forward.
“I try to let family members know that they should come and visit their loved ones as much as it fits into their lives,” Ebell says. “I have to give them the okay to say, ‘If I don’t go tomorrow, it’s all right.’ It goes both ways: I want you to come as much as you can because I want you to have fun with your loved one, but I don’t want you to feel guilt, at all, because this is about you, too.”
Everyone handles the grieving process differently, and that will likely impact how you stay connected with your loved one.
“You have to do whatever it is to grieve. You need to be angry. You need to maybe be depressed a little bit,” Ebell says. “You may need to be in denial. So, I’m going to support your grief. I’m going to give you the okay to do what you can when it fits into your life.”
The bottom line: dealing with the transition into dementia care
The transition into memory care takes a toll on family caregivers of loved ones with dementia. Throughout the process, it’s important to recognize your need to grieve and to seek support. Allowing yourself to grieve and helping your loved one maintain their dignity should be the guiding goals of your loved one’s transition into memory care.