What to Do When a Family Member Wants to Leave Assisted Living

The phone rang and my friend Madeline (not her real name) answered. Her mom shouts at her that she wants to go home, that the staff at the assisted living home mistreat her, and she hates it there. After Madeline calmed her mother down and hung up, the phone rang again. It was her mother; she had no idea she called a few minutes ago. This form of déjà vu happened three times in a row.

Madeline's mother recently moved into an assisted living home after spending most of her life in the house she moved into more than 40 years ago. She raised her children there, and after her husband passed away in his late 80s, she remained in the house as a widow for a handful of years. It was home.

Today, she's in her mid-90s. All was well, until she fell. She needed a walker to get around. She also started showing signs of dementia. She stopped paying her bills. She rarely cooked and missed meals. Madeline swooped in, got power of attorney, took over paying the bills and hired a full-time aide.

"My mother told me she wanted to stay in her home," Madeline says. "She loves her independence. Unfortunately, a number of her friends, who were in their 90s, died. She doesn't have the same interactions with people she used to have. The aide I hired was great. After a few years, however, my mom showed signs that she needed more help. She couldn't get into the tub on her own and some days had trouble dressing. We talked about moving her into an assisted living home. Well, actually, I talked about it. Every time I brought it up, she'd stop the conversation and say she's staying put."

Last year her mom fell again and needed more assistance. Madeline checked out a number of highly recommended nursing and assisted living homes. "I wanted her in a safe place where she could get the care she needed," she says. "My mom fought me every step of the way. She refused to go with me to check out the places I narrowed down. It got to the point where I had no choice. She was safer at the assisted living home. She has good days and bad ones; she's still getting used to it."

I'm starting to think about moving my mom out of her apartment where she has lived for the past 30 years. She has a full-time aide who helps her into and out of the shower, makes sure she eats three meals a day, and takes her to a local senior center. She uses a walker to get around, doesn't hear well (even with hearing aids), and, at times, has trouble remembering things.

Each time, I bring up looking at an assisted living home, she changes the subject or refuses to listen. Currently, my mom can stay put. I found one assisted living home near her that was highly recommended. I want to avoid last-minute mishaps and be ready when and if she needs to move.

"Don't expect to have the conversation all at once," says Jennifer L. FitzPatrick, author of "Cruising through Caregiving and Reimagining Customer Service in Healthcare" and former gerontology instructor at Johns Hopkins University. "Start conversations before there's a crisis and look for natural openings. If a relative, friend or neighbor recently moved into an assisted living or nursing home, mention it. Offer to bring the person you're caring for to visit."

One person FitzPatrick, who founded Jenerations Health, a company that educates health care workers and people caring for older relatives, helped didn't like the assisted living home where a friend lived; however, she was curious about another place someone mentioned. "Take a look at that place and if you like it, make arrangements for a tour with the person you're caring for," she says.

"Before you discuss moving, center yourself," FitzPatrick advises. "If you're anxious, you're setting them up to respond in an anxious manner. This is a big change and an emotional one. It's emotional for you [as] the family caregiver and for the person you're caring for."

FitzPatrick encourages caregivers to study the situation. "If the person is cognitively and physically intact and not willing to relocate, don't push," she says. "Having an aide come in a few days a week or as needed works well for many people. Some, however, don't want a stranger living in their homes. Others don't want family members to move in either. Most prefer their privacy. You get involved when you notice your relative can no longer care for him or herself."

"Challenge the guilt you may feel," FitzPatrick says. "It's not uncommon to feel guilty even though you have nothing to feel guilty about. You have your family member's best interest at heart. You're helping someone you care about get the care they need."

If guilty feelings overwhelm you, talk to a professional therapist or join a support group for people taking care of their older relatives. "And turn moving into a nursing or assisted living home into a positive," she says. Moving into an assisted living home breaks up the isolation. "Often people living alone — even those with a part-time caregiver — are lonely," FitzPatrick says. "Assisted living and nursing homes provide friendships and community."

A 2024 study found older adults who moved into assisted living facilities functioned better than those who remained alone in their homes. Most of these communities offer numerous activities and opportunities to engage with others. "Many people who move into assisted living homes have their needs taken care of, are happier than being alone, and in the long run they find their independence," she said.

Starting over requires empathy and understanding. "It's important to first address the emotional distress by having an open, compassionate conversation with your family member about their feelings and concerns," says Kristie Tse, founder of Uncover Mental Health Counseling.  "Explore their reasons for wanting to leave and see if any immediate issues can be resolved within their current setting."

Remind yourself about the benefits of living in the facilities and the reasons for the relocation in the first place. If relocating is truly necessary, review the terms of the contract for the existing arrangement and assess any penalties or notice periods. Involve your family member in researching and visiting alternate facilities, considering their preferences and needs. Engage in discussions with the staff to explore flexible solutions that might better align with your family member's expectations.

"If, however, your family member is receiving adequate care but remains unhappy or has dementia, it's essential to evaluate what's truly causing their distress," she says. "For individuals with dementia, their environment can impact their feelings significantly."

If that's the case, Tse recommends making minor adjustments and getting the staff at the facility involved. Some of these adjustments can include:

• Introduce treasured routines from their past. These routines could involve being read to, getting your family member to paint, draw, take a yoga class or listen to music.
• Revisit hobbies your family member cherished. This could offer a sense of familiarity.
• Bring your family member a favorite meal.
• Collaborate with the staff to suggest programs they can provide for their patrons. It could be a music or dance class.
• Decorate their room with photos of family members.
• If the facility allows, bring in the family dog for a visit.

"Sometimes, seemingly trivial comforts like a favorite meal or bringing in a familiar scent can significantly boost their mood and sense of belonging," Tse says.