Even after a diagnosis of vascular dementia, Laura Brancato’s father was able to stay in his own home for years. But as his condition worsened, that started to become problematic.
Her father started to wander out of the house. His sleep became disrupted, keeping his wife up at night and leaving her constantly sleep deprived. His medications frequently needed adjustments, which meant Brancato—who has young children and a 70-hour-a-week career as an elder law attorney—had to drive him to the doctor’s office. Part-time caregivers were hard to find and unreliable, especially once the COVID-19 pandemic began.
Finally, Brancato’s family decided to move her father into a memory care community in 2020. He was safer there but unhappy. Visits were limited, because of the pandemic, and her father didn’t understand.
“He thought we had abandoned him,” she said.
The decision to move into senior living is one that many older adults and their families will wrestle with, sooner or later. On average, someone turning 65 today has almost a 70 percent chance of needing some type of long term care in their remaining years, and 37 percent will require residential care in an assisted living or skilled nursing facility, according to LongTermCare.gov.
Determining the best time to make the move often creates conflicts. Siblings may fight over the best course of action. Older adults may resist making a move, even when their adult children feel it’s clearly time.
“The older person is saying, ‘Why? I’m perfectly fine. I can take care of myself,’” according to Dianne Savastano, a patient advocate and founder of HealthAssist in Manchester, MA.
Aging in Place
Most older adults want to remain in their own homes as long as possible. Realistically, however, some will reach the point when that’s no longer safe or comfortable. A person living with dementia may wander and get lost, or leave the stove on and start a fire. Mobility issues may pose a high risk for a fall or make it impossible to handle basic daily chores like cooking, cleaning, dressing or bathing.
When counseling older adults and their families grappling with this question, Kimberly Knight focuses on activities of daily living (ADLs).
“It’s all about ADLs,” said Knight, director of caregiver-support programs at the Senior Source in Dallas. “Consider whether the older adult is still able to navigate the home and care for themselves safely.”
She asks questions: Can the person get up out of bed, toilet and dress themselves in the morning? Are they able to stand long enough to prepare meals? Do they remember to take their medications on schedule?
Knight also urges family members to look for signs the older adult isn’t coping. Are they losing weight? Is there spoiled food in the refrigerator, or no food at all? Are bills and mail piling up? Is the home cluttered? Is the person skipping basic grooming tasks? If a spouse or other older adult is the caregiver, is that person showing signs of fatigue or burnout?
Not all of these signs automatically mean it’s time to make a move, but they all do usually mean that the older adult needs more help.
Older people without family support need to plan ahead for the care they’ll need someday
For those who want to stay in their own homes, the first strategy is to explore options to make staying there safer and more manageable. A life-alert device, for example, could ensure that an older adult can get help quickly in the event of a fall. A part-time, paid caregiver might be able to help with meals, shopping, getting dressed or other ADLs.
Another key factor in the timing decision is the availability—or lack of availability—of family support, according to Jenny Munro, a gerontologist. She advises older adults and their families every day on the question of “When is it time?” as response team manager at Home Instead, an in-home caregiving agency.
She sees this with her own father, who’s now 98. He wants to remain in the house where he has lived for more than 60 years. His cognitive condition is still excellent, but he’s frail and weak.
Family support is plentiful: Munro is one of nine adult children. After her mother died a few years ago, all stepped in to handle some aspect of his care. A brother who is a banker, for example, is handling his finances. Four of the siblings live nearby, and used to take turns staying with him, a week at a time. That worked until her father began experiencing incontinence. Now, three, full-time, care professionals provide round-the-clock care, and the siblings visit often.
“It’s very expensive,” Munro said. “Thankfully, he saved and invested and has the ability to pay for that.”
Family support may not be an option, especially for solo agers and older adults without children or spouses. They must plan to handle their care needs on their own.
Solo agers especially may want to hire a professional to help with caregiving decisions.
Like Munro, Carol Marak pitched in, along with her two sisters, to care for her mother, who had several chronic health issues, and her father, who had Alzheimer’s. The couple lived in a rural area and needed help with rides to the doctor, cooking, cleaning and managing their finances.
The experience was an eye-opener for Marak, 72, who was divorced, childless and had little savings.
“It scared the heck out of me,” she said. “It took all three of us to take care of Mom and Dad. Who’s going to do that for me?”
After her parents passed away, Marak began focusing on improving her health and adjusting her lifestyle. She moved from her suburban home to a high-rise apartment building in Dallas that functions as an informal retirement community. Many of the residents are older and support each other. She can walk to errands or catch a bus.
She also wrote a book, Solo and Smart: The Roadmap for a Supportive and Secure Future (2022). And she’s making plans for when she’s no longer able to care for herself on her own.
To do that, Marak urges solo agers to hire a professional who can help weigh caregiving decisions, such as an aging-life-care professional or geriatric care manager. Solo agers may want to undergo a cognitive function evaluation before signs of memory loss occur. The test can serve as a baseline and can be repeated regularly as part of their routine health care, to provide objective information on the older person’s cognitive status in the future.
“You need to have your team of professionals who are looking out for you and who will take notice if you’re starting to decline,” said Marak.
An Iterative Process
Don’t be surprised if the decision to make a move turns into a series of decisions stretching over several years, Savastano advises.
“I call it ‘iterative decision-making,’” she said. “You’re constantly adjusting to the older adult’s level of abilities and what they need help with.”
She worked for 13 years as an advocate for a client named Rosalie, guiding her through knee replacement surgery and then a move into an independent living apartment in a continuing care retirement community (CCRC).
Rosalie loved her apartment and made new friends. The move was such a success that, even though the CCRC offered sections for higher levels of care, “Rosalie made it truly clear to both me and her children, over and over again, that she intended to live there through the end of her life,” Savastano said.
Those who delay moving until they’re in poor health may be turned away by some senior living facilities.
When Rosalie’s cognitive abilities began to decline, the staff wanted to move her into the community’s memory care unit. Savastano negotiated for a way to honor Rosalie’s wishes.
“We gradually increased the use of private, in-home assistance, ultimately involving 24/7 care in her home, which thankfully she was able to afford,” Savastano said.
Savastano cautions that while older adults may wish to stay at home as long as possible, later isn’t always better than sooner. An older adult’s condition can decline to the point that their options become limited to skilled nursing or long term care.
“If you wait too long, you may not have as many choices,” she said. Some assisted living or memory care communities, for example, may accept an older adult with dementia, knowing their condition will decline. Most will make accommodations to allow a longtime resident to stay until the end of life. But the same community likely won’t accept someone in that later stage as a new resident.
Sooner, Rather than Later
A “sooner, rather than later” strategy worked well for Larry and Marilyn Comstock, both in their 80s.
After visiting eight communities, the Comstocks moved into an independent living apartment in 2018. Even though both were—and still are—healthy, active and cognitively sharp, and even though it meant leaving behind their beloved home and many treasured possessions, they felt it was time. They chose Highland Springs Senior Living in Dallas, which has on-site medical care and offers assisted living, memory care and long term care, should their needs change.
“It was the hardest decision we’ve ever made,” Marilyn Comstock said. “But we didn’t want our children to have the burden of finding someplace for us to move. We wanted to make the decision ourselves.”
A few months later, the couple felt affirmed in their decision when Marilyn fell and broke her hip. Thanks to the community’s alert system, she was able to get help in minutes. Marilyn recovered, and today they’re both thriving, serving on resident committees and socializing with the many new friends they’ve made.
“We’re glad we moved when we did, because we still have the ability to enjoy the facilities and the people here,” said Marilyn Comstock.
When the Older Adult Resists
The decision to move into senior living becomes more complicated when family members think it’s time for a move—but the older adult is unwilling. If cognitive decline is present, family members may question whether the older adult is capable of making the right decision.
“It’s a tricky situation when the older adult is resistant to a move,” said Hannah De George, elder advocate at St. John’s Senior Services in Rochester, NY.
De George recently sat in on a family meeting with some close friends. The adult children all agreed it was time for their parents to move into assisted living; the parents were unwilling.
“They felt ganged up on,” said De George. “No one wants to be told, ‘You can’t live in your own home anymore.’”
Family members can’t force an older adult to move, unless the person has been declared unable to make their own decisions and placed under guardianship by a court order. But that doesn’t mean families should immediately accept “no” as the answer if it’s clear the older adult needs more help.
“When it’s safety versus autonomy, you have to err on the side of safety,” Knight said.
Savastano sometimes coaches adult children on different strategies for making their case with a parent resisting a move.
“But in reality, sometimes you end up waiting until a crisis occurs,” she said.
Family Conflict
The decision to move an older adult into senior living often sparks conflicts among the adult children.
“This is an issue that can break up families and cause siblings to stop talking to each other for years,” said Knight.
An adult child living out of state might think the parent is fine living alone at home, whereas a nearby sibling, who visits every day, may be convinced that’s not an option.
One adult child may want to move the parent sooner, rather than later, and sell the aging parent’s home or dip into their nest egg to provide the best available care. A sibling who’s counting on inheriting that money may disagree. Feelings of guilt, sibling rivalry or other emotional baggage add to the morass.
Older adults can help ward off conflicts by communicating their wishes in advance, before a crisis hits, and having the legal documentation in place for a trusted person to handle the financial aspects of paying for senior living, should they become unable to do so.
If it’s too late for that option, experts advise bringing in a third party—a geriatric care manager or physician, for example—who can weigh in with a neutral opinion on the need for residential care.
A Good Decision
Laura Brancato’s father was initially unhappy after moving into memory care. But the regularity of the community’s daily schedule—important for people with dementia—made him feel comfortable. Medical staff on site adjusted his medications quickly when needed, avoiding the need for frequent trips to the doctor. Soon, her father embraced the place as home.
He stayed there until his death in December 2023. Looking back, Brancato’s family feels they made the right move at the right time.
“He forgot he had ever lived anywhere else,” Brancato said. “Instead of bringing him home for celebrations, we started bringing the family to him. He really was thriving in that environment.”
Freelance writer Mary Jacobs lives in Plano, TX, and covers health and fitness, spirituality, and issues relating to older adults. She writes for the Dallas Morning News, the Senior Voice, Religion News Service and other publications; her work has been honored by the Religion Communicators Council, the Associated Church Press and the American Association of Orthopaedic Surgeons. Visit www.MaryJacobs.com for more.