The caregiver perspective: Jennifer’s story

My husband, Charles, was diagnosed with Alzheimer’s disease in 2010. He was 65. Over the next six years, my role changed as his disease progressed: I went from supportive care partner to supportive caregiver. Over time, he had shown more and more difficulty with activities of daily living. By 2016, he needed hands-on assistance with everything.Jennifer and her husband

A friend whose husband also had Alzheimer’s told me her husband was participating in a research study at OHSU. I called, and though Charles wasn’t a candidate for that study, we were a candidate for another one: STAR-C-TM, which explored if telemedicine/remote coaching by a health care provider would be helpful to a caregiver in dealing with the behaviors of a loved one affected by Alzheimer’s or other dementias.

We began the study in June 2016 and it continued for eight weekly sessions, with two monthly follow-ups. Once a week, I would talk via a secure video set-up with Dr. Allison Lindauer for an hour about what was happening with Charles and his care, with a focus on responding to his behaviors in a more effective way.

Dr. Lindauer is terrific. I can’t speak too highly of her. She’s amazing because she combines expertise with real compassion. Her assistant, Kate, was also wonderful; she helped with other aspects of the research study and some of the technical issues that we occasionally encountered. Any interaction with Dr. Lindauer or Kate was just outstanding: they both came across as people who genuinely cared.

Every week, I could get help with specific behavioral management issues I faced: I was treated with respect, not like a guinea pig. I was surprised at what a strong, supportive relationship we were able to build through video chats. It felt so helpful to be able to problem-solve together. When a loved one is diagnosed with dementia, you’re left without a road map.

For example, showers. I had set up a shower chair for Charles, but he was going through a phase where he got defensive about being touched. I tried to let him do as much of his own care as possible: He’d get in the shower chair and I’d be standing outside the shower, telling him what to do, how to wash himself, what a washcloth was for. As time went on, thanks to Dr. Lindauer’s help, I realized that he was not comprehending my verbal instructions and this was just confusing and frustrating for him. We developed strategies that were more effective, such as my showing him what to do, or simply assisting him physically—as opposed to talking to him about it. Putting the soap on the washcloth, handing it to him, and guiding his hand to his chest was easier than saying, “Honey, why don’t you wash your front?”

It’s hard to talk about this type of nitty-gritty problem with other people unless they’ve gone through it themselves. When a loved one is diagnosed with dementia, you’re left without a road map. And it’s also isolating to be caring for someone with dementia. Dr. Lindauer and I could brainstorm and develop approaches that made sense. Through the study, I had access to top-drawer, customized expertise every week.

Charles lived at home until November 2017. He started having seizures and was hospitalized for a medication reaction, which led to more rapid decline. And at this point, he doesn’t walk and can’t bear weight, so I was no longer able to care for him at home.  He’s in an adult family home nearby; I visit him every day. It’s a good solution and the people there treat him like he’s family.

Though the program has ended for us, it was an amazing benefit. I encourage others to get involved. The research was invaluable. I even brought flyers about it to my caregiver support group. We need so many resources, and I feel like there’s a real lack of professionals who understand the challenges family caregivers face—a program like this is one way to access those people. It brought them right into my home.

*Adapted from an in-person interview with writer Carin Moonin.

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