Randi's story: Finding meaning and purpose as a caregiver

November 30, 2023

The Swedish Center for Healthy Aging

[5 MIN READ]

Randi Luoto, 78, has served as a family caregiver to her husband, Dennis, since 2016, when he was diagnosed with Alzheimer’s disease.
Randi is one of more than 50 million Americans currently providing unpaid care to a loved one — a number that’s expected to grow in the coming years.
Through her experience, Randi has learned how to find purpose as a caregiver. She’s also learned how to grieve the losses and count the wins.

Randi's story: Finding meaning and purpose as a caregiver

When Randi Luoto, 78, first learned her husband, Dennis, had Alzheimer’s disease, she felt resentful.

“Like many caregivers, I was initially very angry,” the Seattle resident recalls. “This was not what I’d bargained for. This was not how I wanted to spend my golden years.”

But Randi didn’t want her three daughters — one in Seattle, one living two hours outside of London and one living just outside of Paris — to shoulder the caregiving burden either.

“If I didn’t do this, it would fall to my daughters,” she says, “and it’s not their job to take care of their dad. So, I took on this role with great love for my daughters. I think of it as my last and biggest gift to them. Their dad and I will take care of each other, so they don’t have to take care of us.”

Dennis, 76, was diagnosed with the progressive brain condition in 2016. Since then, Randi has taken on the role of full-time caregiver for him. She’s learned how to plan his days, make sure he eats regular meals and clean up after him. She’s also learned how to recast her anger as purpose.

“I’ve had to come around to recognizing that caregiving is important,” Randi says. “It may not be what I saw for my future, but it’s useful and I’m good at it.”

An aging America

Randi is one of more than 50 million Americans currently providing unpaid care to a loved one — a number that’s only expected to grow in the coming years.

In 2020, there were more than 55 million adults in the United States ages 65 or older. By 2040, that number is estimated to rise to more than 80 million adults.

Family caregivers like Randi provide day-to-day support and services and manage complex care tasks for those with chronic, disabling or serious health conditions. According to a recent report from AARP, family caregivers provide an estimated 36 billion hours of care a year, which equates to about $600 billion in unpaid services.

In general, America’s older population wants to age in place when possible and avoid nursing homes. That’s difficult when you consider there’s a shortage of in-home caregiving aides — professionals who help older adults live at home — across the country, not to mention a shortage in the number of family caregivers available.

Declining birth rates, families spread across cities and states, and a projected increase in cognitive conditions like dementia have all contributed to a care gap in the United States. It also doesn’t help that family caregivers often receive little instruction or support when taking on caregiving roles, which have historically been performed by trained professionals in health care facilities.

That’s why recognizing and supporting family caregivers is so important. November is honored each year as National Family Caregivers Month, a time to educate communities, raise awareness and increase support for caregivers. Yet November isn’t the only month of the year caregivers need help. Many caregivers are “on call” 24 hours a day, 365 days a year.

There are several ways you can show up for a caregiver in your life, ranging from simply offering a listening ear to giving them time off from caregiving to taking on a task like cooking or cleaning.

Discovering new sources of joy

Dennis and Randi dressed up as Shrek and Fiona for Halloween this year.

Randi draws support from several sources, including from two caregiver support groups. Meeting regularly with other caregivers lets her vent to people who understand what she’s going through. It also helps her learn about upcoming events she and Dennis might enjoy — like the song circle they now join once a week at their local senior center.

“We meet with about 20 other people each Monday to sing,” she says. “It’s a group that’s only for people with memory loss and their caregivers, and it’s just wonderful. Dennis has some rather profound cognitive losses and no musical training whatsoever, but he just sings so enthusiastically each week, you can tell he feels safe and competent.”

The support groups have also given Randi a chance to help others. “Just by telling someone that you’ve been there, and it gets better, can make a huge difference,” she says.

And she’s discovered ways to create happiness for herself. She loves music, movies and taking walks. She’s also found poetry and opera. Last spring, in fact, Randi won a Road Scholar Caregiver Grant to study opera in New York City for a week.

Taking care of yourself may mean asking for help, but that’s part of long-term caregiving, Randi says. “You need to find joy within the constraints of what your world permits,” she says.

It’s also important to grieve the losses, Randi says. She counts losses like Dennis no longer being able to cook breakfast for himself. He used to make poached eggs and toast every morning, she says. But one day a few months ago, he just stopped doing it. “That’s a loss,” she continues. “You should grieve when the disease chips away at another part of who your loved one used to be.”

But you also can’t stop at counting losses, Randi counsels. You have to count the wins, too. One of the wins for Randi is Dennis’ ability to dress himself: “He does a wonderful job of matching his shirt to his socks,” she says. “It’s how he expresses his creativity. So if he’s wearing a red plaid shirt, you can be sure he’ll have on red socks, and they’ll probably have roosters on them, too.”

Another win came when Randi and Dennis heard “The Tennessee Waltz” recently. “It’s our song,” she says. “No one else was dancing where we were, but I told Dennis to dance with me, and he did. We had a great time.”

The Swedish Center for Healthy Aging

Dennis sees Nancy Isenberg, M.D., a neurologist at the Swedish Center for Healthy Aging on the Swedish Cherry Hill Campus.

“She’s just terrific,” Randi says.

Dr. Isenberg and the center’s other specialty-trained providers treat conditions including Alzheimer’s, mild cognitive impairment (MCI) and Parkinson’s disease, providing services like neurological evaluations and cognitive testing, cognitive rehabilitation, neuroimaging and diagnostics, as well as mind-body interventions, evidence-based lifestyle medicine and culinary medicine.

The team also provides support for caregivers, helping to connect them with social workers, dementia care coordinators and local dementia- and Alzheimer’s-focused organizations, such as:

Learn more and find a provider

To find resources for patients or caregivers, or to find a provider, visit The Swedish Center for Healthy Aging or call 206-320-7200. We provide high-quality, comprehensive and compassionate care to improve the quality of life of our patients and their caregivers. We’re also committed to building healthier communities through outreach, education and engagement.

You can also connect face-to-face with a nurse practitioner who can review your symptoms, provide instruction and follow up as needed through our Swedish Virtual Care service.

In addition, if you need to find a physician, caregiver or advanced care practitioner, you can use our provider directory.