Chances are pretty good that you know someone who is a family caregiver. According to the AARP, in 2020, more than one in five Americans were providing care to someone with an illness or special need.
Family caregiving is usually an unpaid position, done out of love or necessity. In addition to attending to the needs of a loved one, many caregivers still hold down a job while maintaining their own households. They may have financial or personal health issues to deal with, adding to an already difficult situation. The “job” of a caregiver can be frustrating, costly, and stressful–so what can be done to help?
Karen Stobbe was a caregiver for both of her parents before they died. She was a long-distance caregiver for her father, who had Alzheimer’s disease, then one year after he died, her mother was diagnosed with Alzheimer’s and Karen became the primary caregiver to her for 17 years.
Karen was lucky to have a strong support system from her husband and daughter. “I think it’s very important to have somebody who’s not blood related [to help out]. My husband did not have the baggage that I have because I wanted Mom to be Mom. You need someone who just accepts the person as they are, not wanting them to be someone they used to be,” says Karen.
If Karen’s husband was out chopping wood, he would say to her mom, “Come on and sit out on the back deck and give me some advice.” That gave Karen a break to do her work. Plus, Karen says, “Mom didn’t see him as the enforcer of rules. He was the fun guy. And if he did have to enforce anything, she didn’t care because he was the good guy without family baggage.”
Karen’s daughter was 4 when her grandma was first diagnosed. “She would sit with her and color. Play dolls for hours and do it again the next day. At the age of 12, she would sit with her and do homework,” says Karen.
Karen enjoyed taking her mom to the grocery. “But to go by yourself and just be, and get away from the house for a few hours to get your head straight and just breathe…it makes such a huge difference for someone to say, ‘I can come and be with your mom for a while to give you a break.’ Start slow, maybe half an hour to an hour,” Karen advises.
After about three years, Karen began sending her mom to adult day services. “That made a huge difference for us.” She started going about one day a week and eventually got up to five days a week. “It was good for her to be around people her own age, and she was seeing herself as a volunteer in that setting. She would help people in wheelchairs; she was very physically able. Even if they didn’t need help, she would help them. My mom was ambulatory and she could speak, so if you looked at her, you couldn’t tell until she started repeating herself over and over, or didn’t understand what you were talking about,” says Karen.
Despite the dementia, Karen appreciates the time she had with her parents. “You can still have a great relationship and great moments of joy. If my dad had died (suddenly) with a heart attack or stroke, I wouldn’t have had some really good years with him. It’s hard though, losing your life. That’s why you need respite, and help. A lot of caregivers really love what they do, and are happy to do it, but they need to be able to do other things besides caregiving.”
Read Part 2 of this story — caregiver connection, hosparus help, and caregiver coping tips.
By Cheryl Stuck | Photo by Harli Marten