November is National Family Caregivers Month, a time to recognize and honor the millions of family caregivers who provide essential, often unpaid care to loved ones, friends, and neighbors.
In Minnesota, one in five adults is a family caregiver [PDF]. Behind that statistic are people balancing responsibilities, navigating challenges, and managing competing demands while caring for others. Chances are we all know someone in this role or have taken it on ourselves.
At Metropolitan Area Agency on Aging (MAAA), we regularly connect with caregivers to help them find resources and support. This National Family Caregivers Month, we’re highlighting the story of a caregiver in our community.
Navigating an Unexpected Journey
Caregiving begins differently for everyone. For Kale, signs of dementia were noted during his wife’s annual Medicare wellness visit. A year later, she received an official diagnosis of vascular dementia. And a few months after that, she broke her hip, marking a turning point in Kale’s role as both her husband and caregiver.
Caregiving touches nearly every part of Kale’s day. From cooking and cleaning to helping his wife bathe, get dressed, and prepare for meals, much of the household and personal care falls to him. But caregiving also means finding ways to keep her engaged and connected to the people and activities she enjoys.
“Her short-term memory is gone, but she still remembers friends and is still very engaging when we go out,” Kale shares. He makes a point of getting them out for lunch once or twice a week, often meeting up with friends. At home, he looks for simple tasks she can participate in, helping her stay involved and maintain a sense of accomplishment despite the challenges of dementia.
Evenings can be more challenging. His wife experiences sundowning, which can bring increased agitation and anxiety as the day progresses. Kale works to manage these symptoms with the help of prescribed medications and a consistent routine, but these behavioral changes can still be challenging to navigate. “She can still be anxious, but I just try to roll with it and reassure her the best I can,” he says. For caregivers, behavioral changes are some of the most difficult aspects of dementia care, requiring patience, flexibility, and emotional resilience.
“There is no user manual for this.”
The Invisible Work of Caregiving
Caregiving involves more than the day-to-day responsibilities others may see. Much of the mental and emotional effort happens in the background. Caregivers are continually anticipating needs, making decisions, adjusting expectations and navigating the unexpected. The ongoing demands can leave caregivers feeling isolated as they navigate an experience that is deeply personal and different for each family.
For Kale, some of that work involves planning for an uncertain future. He has worked to get legal and financial documents in order, establish powers of attorney and backup decision makers, and prepare for future care needs. With the help of an eldercare advisor, he is exploring options for in-home care and senior living, including memory care, should he eventually be unable to provide all of his wife’s care himself. But planning isn’t just about the years ahead. As Kale puts it, “You spend so much timing thinking about future care needs, but what if something happens to you tomorrow and you can’t be there to care for your loved one?” Navigating these decisions isn’t easy. “There is no user manual for this,” Kale explains.
Finding Time to Connect and Accepting Help
Kale treasures the moments when he and his wife can enjoy time together, whether meeting friends for lunch or recalling trips they took together. When a memory from one of those trips comes back to her, it offers a meaningful connection to their life together.
Alongside those moments, Kale recognizes the importance of making time for himself. He occasionally gets out with friends for a few hours, planning ahead and making sure backup support is available if needed. Other times, a little quiet time is all he needs. “Just sitting outside on our deck with a cigar and my iPad or reading a book in another room is sufficient relaxation for me,” he shares. “I try to be low maintenance—haha!”
He also recognizes the importance of accepting support, even when asking for help feels difficult. “Think about yourself wanting to be there for your family and friends when they need help,” he says. “Your family and friends want to help you, too.”
For Kale, that support comes from a network of lifelong friends, fellow caregivers and people who understand the challenges he faces. Three friends he has known since kindergarten check in regularly, whether just to talk or get him out for lunch. He also joins a group of friends on Saturday mornings for coffee and cigars. These connections give him time to recharge and remind him that he is supported, too.
“Your family and friends want to help you, too.”
As his wife’s needs have evolved, friends have stepped up in practical ways as well. One close friend has offered to stay with his wife so Kale can leave their home once or twice a week when he isn’t comfortable leaving her alone. They’ve even started practicing short visits to help her feel more at ease when he’s away.
Beyond the support of friends, a dementia caregiver support group has given Kale a place to share stories and connect with others who understand the experience firsthand. And, through the Care Ecosystem Dementia Navigation Program at MAAA, he connects monthly with Kelly, a Dementia Care Navigator, who has helped him identify resources (like the support group), plan for the future, and navigate the questions that come with caregiving.
“Kelly has been extremely helpful in making me aware of the resources available and the things I should be thinking about. She’s also been there as someone to talk to, and I am very grateful for everything she has done,” Kale shares.
Kale’s experience shows that caregiver support can take many forms: a lifelong friend who checks in, someone who steps in to provide a break, a group of people who understand, or someone who helps make the road ahead a little easier to navigate. Together, these connections remind caregivers that they don’t have to figure everything out on their own.
A Fresh Slate Every Day
When asked what advice he would offer other caregivers, Kale comes back to two things: patience and compassion. “You have to keep telling yourself all the time, this is not their fault!” he says, emphasizing the importance of remembering that many of the challenges associated with dementia are beyond a person’s control.
He also recognizes that family caregivers are human, with their own limits and difficult days. “Yes, there will be days when you totally lose it. Do not feel guilty. You are only human. Just be better tomorrow, because there are no do-overs.” For those caring for someone living with dementia, he offers this perspective: “If you’re asked the same question again and again, try to answer with the same patience as if it were the first time they asked.”
Not every day will go as planned, and you won’t always respond the way you hoped. What matters is giving yourself grace, learn from the hard days, and start fresh tomorrow. Each day offers a fresh slate and another opportunity to do the best you can, both for the person you care for and for yourself. Caregiving isn’t about being perfect; it’s about continuing to show up, one day at a time.