Editor’s note: With Barbara Garwood taking some time off this month, Katie Scarvey is handling this month’s caregiving column. Barbara’s column will return to these pages in June.

On a long weekend visit to Virginia recently, I spent some time with my father in his nursing home. Since he’s been there, I’ve gotten to know his small community of staff and residents – including one woman who just turned 108. I have also been privileged to meet a number of family caregivers, both spouses and children of residents.

I’ve learned that family caregiving doesn’t end just because someone enters a nursing home.

Of course the day-to-day heavy lifting (both literally and metaphorically) of the primary caregiver eases, but challenges remain for spouses and children or even grandchildren of residents who serve as secondary caregivers. Although they aren’t providing the majority of the care, they may still spend a great deal of time advocating to ensure their loved one gets the best care or supplementing the care given by professionals.

Of course secondary caregivers have lives outside of the nursing home, and they may struggle with feelings of disloyalty when they’re not with their loved one. “Guilt is the thing,” my mother told me recently. “If you’re not careful, it can consume you.”

My mother visits my father daily, and often twice a day. In the early days of his life in the nursing home, she found it difficult to break away. “Can’t you stay?” he’d ask her. Or even worse, “Why can’t you take me home?” As my father grew more comfortable in his new home, however, those questions subsided, along with my mother’s feelings of guilt. 

Spouses of nursing home residents often experience anxiety when they transition to a new caregiving role. During a recent visit to see my father, I met a man I’ll call Joe and his wife of more than 60 years, whom I’ll call Sarah. Joe visits faithfully. In fact, he spends most of his waking hours with Sarah, who has dementia, eating many meals with her in the dining room and leaving only to sleep or to mow the grass at home.

Joe and Sarah are in the early weeks of adjusting to their new reality. Joe may eventually cut back on the time he spends in the nursing home. But if he doesn’t, it’s likely he will get burned out, and he may start to feel resentful. His health may begin to suffer. If Joe could learn to let go a bit, Sarah – who is sweet and friendly – might learn to tap in to her new community for support and companionship.

I think my mother has done a pretty good job of balancing visits to my father and maintaining her existence outside of the nursing home. Occasionally, I think she makes her life a little harder than necessary. She still insists, for example, on taking my father’s clothing home to launder, even though the nursing home provides this service.

She explained that it was because the heavy-duty washers at the facility were hard on fabric. I offered a different take on the situation. If Dad’s clothing wears out a little more quickly than it might otherwise, is that something to worry about? Will anyone notice that his shirts are fading? I asked her if she might consider giving up that particular task to make her life a bit easier. (Did I mention that she has serious neck issues that cause her much pain?) She agreed that I might have a point.

As a family member who lives in another state, I wish I could be around more to help both my parents. I try to do what I can, even if it’s just bringing a fresh perspective.

There’s no blueprint for how to navigate these major life transitions. But if there’s one piece of caregiving advice my mom and I would agree on, it’s the importance of bringing a sense of humor as you walk through the door of the nursing home. Shared laughter builds bridges among staff, residents, and family members, and that’s a very good thing.

Katie Scarvey is a communications specialist for Lutheran Services Carolinas.