AARP Eye Center
Beth, age 75, enjoyed a career that spanned three decades and included marketing, communications and data analyst work before she retired 10 years ago. Her husband Jim, age 89, had a brilliant career as an engineer who also built and flew an aerobatic biplane. He worked full time until he was 83 years old and could always be counted on to take on home repairs.
Together, they were looking forward to retirement. But then Jim was diagnosed with dementia.
In the beginning, Jim was self-sufficient, and Beth didn’t consider herself a caregiver. But as his condition declined over the past three years, Beth has become Jim’s caregiver; a difficult and emotional role.
“I’m losing my best friend. I’m watching him disappear and die,” she says. “It’s like a daily event for me. The grief, just not only observing and the emotional impact of watching him in this state but also the work involved with keeping up with what I have to do.”
Beth had no idea she and Jim would be in this kind of situation because he had always been so healthy and capable. According to Beth, “dementia really robs you of so many abilities.” Mentally and physically, Jim can do very little. Beth worries because he is not aware of his limitations, so she is constantly monitoring his safety.
In addition to Jim’s medical issues, Beth is dealing with her own. After several years of having an abnormal gait, she was diagnosed with Parkinson’s disease last year. She must be realistic about how much she plans for herself every day.
“I suffer from a lot of fatigue,” Beth says. “Sometimes I don’t walk very well. Grocery shopping is exhausting, and I can only manage so much.”
Until recently, the plan had been for Jim and Beth to stay in the home they’ve loved for 35 years in their Granite state town. Now they will likely put it on the market in the spring. Their home has many stairs which are becoming increasingly difficult for both to maneuver. Beth is putting plans in place to be able to move into a condo so they will have less home maintenance and stay in the community they love. And she’s taking care of most of the home repair issues that Jim used to handle as well as installing grab bars and railings to make things easier for Jim.
“I’m really alone in this situation and its heartbreaking,” says Beth, whose managing medicines, meal prep, laundry, bathing, toileting, shopping, and driving.
Although a caregiver from a local agency has visited in the past, all the caregiving now falls on Beth’s shoulders. She has recently hired a cleaning service and is hopeful that will help. She takes things one day at a time, finds solace in texts and calls from dear friends, and focuses on Jim.
“The goal is to just keep him walking,” she says. I’m really scared if he can’t walk, he can’t live here.”
She’s worried about how long their savings will last when faced with the inevitable expense of specialized memory care for Jim. She believes it would be sensible for the government to invest in funding that allows people to age at home. And she thinks it would be helpful to have a social worker who, in addition to providing links and phone numbers to support services, is able to provide stronger “handholding”. “Someone who could touch base every week, just to see how things are going,” she says.
There’s been a bright spot. Beth’s son, who can work remotely, has moved in with them for the winter to lend a hand with caregiving and work around the house. Just knowing he’s there to help, provides Beth with piece of mind and a distraction from worries.
“I feel that I don’t have a life anymore. My spouse has dementia; I have Parkinson’s and the time to take care of myself is limited,” says Beth. “Knowing that AARP is working to improve the lives of those of us who are in caregiver roles is a comfort and a blessing. “
To many lawmakers, America’s millions of caregivers are invisible. Yet, our family caregivers hold up a broken long-term care system. Which is why AARP is looking for your help; we are starting a movement of family caregivers to show lawmakers that we are a powerful constituency who need support now.
Raise your hand and join the fight at www.aarp.org/iamacaregiver.
If you are a caregiver and need resources and support on your caregiving journey, please visit: www.aarp.org/cargiving.