En español | My sisters and I were fortunate when it came to my parents’ last chapter. Before my father’s Alzheimer’s became obvious to all but my mother, they moved from the West Coast and selected a senior living facility, with step-up care, to be near their three daughters. The facility had a memory care unit, which allowed my parents to seamlessly stay in the same place, even as my father began slipping away.
While our situation was idyllic, life doesn’t work that neatly for all families. There are many more stories of frustration and despair, stories of older parents unwilling to leave their home, and grown children scrambling to figure out the appropriate next caregiving steps while working and parenting their own children. One friend recently told me that her 91-year-old parents finally sold their home. But they were unable to part with most of their possessions, so they moved into a condo because they wanted to “think about what made sense next.” That friend is ready to tear out her hair.
Looking at options
So many factors go into the decision around choosing the right living situation for older parents. And when multiple siblings are involved, it can complicate matters. For those who have ruled out home health care or living with family members, there are a bewildering number of factors in choosing a senior facility.
And while there are no one-size fits all solutions, there are important questions to ask that can help shortcut the decision-making process for all involved. Some are as basic as the size of the facility and number of beds, the cost structure and the proximity to a hospital and family. Others are more subtle, requiring observations. Such as: How much light does the facility or the room get? Do the residents seem happy and engaged?
Amenities like transportation services for appointments or the existence of a nurse on staff for things like changing bandages can make the difference in a loved one’s well-being and the family’s peace of mind. Dining services and healthy food options are as important as the policy on visiting hours. “How does it smell?” was a piece of advice I got from more than one person, suggesting that a pervasive smell of urine might require a deeper look.
One of the most universal pieces of advice was to ask questions about continuing care when you are looking at facilities. Many people regretted not having their loved one in a facility where they could “step up” to more comprehensive care, including nursing home care with hospice. Several people I interviewed shared the pain of both the family and loved one in having to make a transition to a new situation while they were ill or even dying.
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Proximity to family vs. familiarity
Location is key. Even if the facility is near just one of the adult children, that allows someone to be on site for issues both big and small. Many sons and daughters talked about how good it felt to run an errand with their parents or be able to drop things off, do small repairs or attend medical appointments.
Author Melanie Benjamin, 58, from Williamsburg, Virginia, wishes she had pushed her father harder to consider a place near her or her brother.Instead, she found herself traveling back to Indianapolis frequently as he began to quickly fail. “The world shrinks very quickly, and your parent’s friends and community suddenly aren’t there anymore,” Benjamin says. “In the balance between elderly parents and their friends, it’s probably more important to be near family who can arrange care, show up and keep an eye on you.”
Another overarching theme was the timing of a move. Many families shared with me that they had waited too long to move their parents, which robbed them of the chance to grow roots in their new living situation, participate in the activities and make lasting friendships. If someone can’t participate, everything is going to feel very foreign.
Mary Novaria, 62, of Evergreen, Colorado, is the eldest of three siblings. Her father died years before her mother, who was an Episcopal priest. When her mom began to show signs of dementia, the children moved her to a senior living facility that was 10 minutes from Novaria’s house, so that she could be there frequently. When her health spiraled, they needed to move her again to an assisted living facility, and her mother was too ill and withdrawn to form bonds with the residents.
“I wish we’d moved her to a continuing care facility in the first place so that she could have made friends and had multiple options for activities,” Novaria says. “Instead, it was like having a child at a brand-new school when everyone already has their cliques.”
Check on staffing
There is no question that the COVID-19 pandemic has stretched the health care system and workforce. Staffing at many long-term care facilities is an important issue, and even in the best case, families must be advocates. Benjamin’s father fell at night numerous times and she found herself trying to direct his care from long distance. The evening desk staff mostly consisted of a 20-year-old young woman who was not strong enough to lift him. That resulted in calling the ambulance more times than was necessary.
“Ask a lot of questions about staff, especially who is on duty at night,” Benjamin offers. “Make sure it’s more than a skeleton crew!”
Faith-based living facilities may have different rules than those not affiliated with a religion. Maureen Clark Newlove, 57, from New Canaan, Connecticut, thought they had figured everything out when her mother chose a Catholic nursing home. The family was comforted by the aspect of having the nuns live in the facility. When her mom began to fail, Maureen and her siblings produced their mother’s do-not-resuscitate (DNR) order and living will. She had been firm about her wishes to not have any intervention to prolong her life. But when the siblings wanted to bring in their own hospice service, they were told they had to use the one provided by the facility.
“My mother essentially starved to death over a 15-month period,” says Newlove, explaining how she slowly wasted away. “This was not at all the way she wanted to die, and due to their regulations, they would not increase her level of morphine unless she declared she was in pain,” Newlove says. “We should have asked the question: What does it look like to die here?”
Navigating the siblings’ point of view
Finally, navigating this final chapter with siblings can be fraught with issues. Every child in a family has a different point of view and relationship with his or her parents. Ligeia Polidora, 62, from Sonoma, California, grew up in Wisconsin but has lived on the West Coast most of her life. She returned home to Madison to help her mother move into an assisted living facility and found that there is no “equal” when it comes to dividing tasks with siblings.
“There is usually one sibling that has to step up and take the brunt of the heavy lifting,” Polidora says. “You simply can’t make decisions by committee, especially when the situation is urgent. Someone has to be the “ultimate decider,” and everyone else needs to find a way to make peace with that,” she adds. “My suggestion is to just give that person your support, don’t try to fight it and ask how you can help or look for ways to do so.”
Polidora also suggests that siblings not on the same page should look for ways to play to their strengths. “If someone is good at handling the finances, they can be the designated person for that task. And if someone is nearby and a good medical advocate, that might be a good role for them — so that one person isn’t necessarily strained, but not everyone has to work together on things,” she says.
While this process is overwhelming, approaching it as you would any big decision can make the difference in you and your loved one’s happiness. The federal government has resources online and a handy checklist you can print out and take with you when visiting care facilities.
Key Questions and Issues to Consider
Choosing the right facility for a love one requires a lot of legwork. These tips were culled from a series of interviews and from the book Not Dead Yet: Rebooting Your Life After 50, by Barbara Ballinger and Margaret Crane.
• How does long-term care insurance, Medicare and Medicaid factor into the cost of the facility?
• What are the rules for visitors, and are there resident policies that must be followed?
• How often are beds available? Do you need to put your name on a list now, and what does that entail?
• When choosing your exact unit (if you have a choice), think about where the light falls and at different times of the day and seasons.
• If your loved one likes the outdoors, is there a balcony or garden space on the grounds where they can do the things they love?
• If you are a couple, what are the options if one of you passes away?
• Beyond monthly fees, how do “extras” work and what is the pricing structure?
• Once you have narrowed your choice down to one or two places, be sure to visit the community numerous times and at different times of the day to see staffing and resident engagement.
• Ask questions about medical care, cleanliness standards, ratio of caregivers to patients, if you can still see your own doctors and what plans are in place for handling future pandemics.