Have you promised a parent or senior loved one that you will never place him or her in an assisted living or skilled nursing community? Or, maybe you’re considering making that promise. If so, you may be committing to a vow you won’t be able to keep.
Learn more about why making “the promise” to a loved one may not be the best idea and what to do if you can’t keep it.
By the time Nicole Burton, 61, placed her husband Jim, 68, in assisted living, the couple had navigated the slow but steady progression of Jim’s early-onset Alzheimer’s disease for seven years. Jim was diagnosed in 2010 at the age of 60.
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After the diagnosis, Jim, an artist and photographer and Nicole, an author and playwright, both retired from their full-time jobs, determined to create art and travel while Jim still had some good years left. The couple vacationed frequently in Hawaii and journeyed by rail from Riverdale Park, Maryland, to San Francisco.
Then in 2017, Jim’s condition worsened.
Jim had always been self-reliant. Now he grew increasingly frustrated with his inability to perform simple tasks like cooking or doing laundry. Nicole’s formerly even-keeled husband became volatile, throwing books and chairs across the room at her if Nicole suggested he change his shirt or tried to give him medication. Nicole feared that eventually, one of those books or chairs would strike their target.
“I had an emergency escape kit for myself in the car trunk, a sweater, toothbrush and keys to a friend’s house,” says Nicole, who knew that Jim’s illness would cause him to get worse, not better.
Nicole realized that he would never go into assisted living willingly.
“There was not a scenario on earth with him saying, ‘Sure. I’ll give it a chance,’” Nicole says.
Jim told Nicole that he never wanted to go into assisted living or skilled nursing. Still, Nicole, who’d researched the disease, understood she couldn’t make such a promise. “I knew that when the time came, that decision would be up to me,” she says.
However, many people are not as certain when it comes to making what author Jennifer FitzPatrick calls “The Promise” in her book “Cruising Through Caregiving: Reducing the Stress of Caring for Your Loved One,” The book includes an entire chapter exploring the implications of The Promise.
“You usually have no idea what you’re really promising,” says FitzPatrick. “Today, if your loved one is having minor health problems and you promise to never bring help into the home, that seems reasonable. But five years from now, you might be exhausted and desperately needing a break.”
Most promises involve some version of “I’ll always be the one to take care of you” or “you never have to move,” says FitzPatrick. It’s better to avoid committing to more than “I will do the best I can to make sure you’re well taken care of,” she says. That’s because caregivers must frequently make choices they never saw coming.
Nicole’s decision to place Jim in assisted living in 2017 couldn’t be delayed any longer when he developed a urinary tract infection that induced temporary psychosis. As a result, Jim had to be restrained. Nicole was already involved in a spouse’s caregiving support group, hearing often from peers about struggles with placing a loved one in assisted living or a memory care unit.
Part of that struggle often stems from outdated ideas about quality of care, says FitzPatrick. Many people of the Silent Generation, those born before 1945, had bad experiences of visiting relatives in nursing homes. Or, they heard horror stories from others.
“People who don’t have experience in healthcare or senior living don’t usually understand that there is a continuum of options,” says FitzPatrick. “Many of our oldest loved ones don’t recognize that their family caregivers will have access to visit them 24 hours a day in most cases. They need to be reassured that they will not be abandoned.”
Here are some factors to consider before making the promise to a parent or senior loved one:
If you’ve already made a promise and you are consistently feeling more than a 5 on a stress scale of 0 (no stress) to 10 (you can’t take any more stress), it’s time to reevaluate, says Fitzpatrick. Assess how others are impacted. Are your kids spending too much time with the babysitter? Is your marriage suffering? “If you can’t remember the last time you did something social, it’s time to reevaluate,” she says.
“Many caregivers expend a tremendous amount of energy feeling guilty for wanting to go back on their word,” says FitzPatrick. “Just tell your loved one that you will always do the best you can to care for and support him or her,” she says.
After Jim’s initial anger toward Nicole for placing him in assisted living, he now welcomes her visits. The couple goes on outings or to lunch and Nicole is her husband’s healthcare advocate. Jim is adjusting well and has started to play the piano in the community room after Nicole informed the staff of his musical abilities.
Keeping a promise to always let someone live at home can lead to isolation. You may be able to find some middle ground, such as adult day care, if the person’s health allows. “That way, you get a break and are able to relax, take care of your kids, or work,” says FitzPatrick. “Your loved one can socialize and is more active, which often leads to better health and better sleep.
Family caregivers often don’t have the education, experience or training to adequately perform certain tasks that their loved ones need as a condition or illness progresses, says FitzPatrick.
“We can’t know what the future holds for us in any part of our lives,” says Nicole, who advises against making a promise.
“It’s better to say, “I’ll always be there for you and I’ll always love you. That’s the reassurance a person is looking for, that their beloved is going to love them and take care of them, no matter what.”
Have you made “the promise” to a parent or senior loved one? What happened if you couldn’t keep your promise? What other tips do you have for families going through this experience? We’d like to hear from you in the comments below.