Caregiver Diaries: Spousal Caregiving and Dementia

Spousal Caregiving and Dementia

Artie and Phyllis, married for nearly 60 years, live in New York City and were primed to live out their retirement in peace. But about 3 years ago, Artie noticed something that would change things forever — Phyllis started forgetting things.

So began Artie’s journey into becoming one of the 16 million Americans caring for someone with dementia or Alzheimer’s. As is all too often the case, the ongoing physical and mental load of managing the decline in health for Phyllis would lead to a decline in health for Artie as well.

Growing Concerns
It hasn’t been the easiest transition. “It’s difficult dealing with a stranger who you know,” Artie says.

Phyllis had a long, successful career as a judge, but now asks the same questions repeatedly and forgets names and recent events. This leads to building frustration for Artie. Phyllis is also adept at reading body language and facial expressions and can get quite angry when she perceives Artie’s frustration.

He tries to pause and breathe before he answers, again. “I get mad at myself for being mad at her, but she can’t help it.”

On top of the mental stress, Artie now struggles to maintain his own physical health as well. He fell three times in less than a year, which makes it even harder to care for Phyllis.  After multiple trips to the emergency room and visits to his doctor, he started using a walker for his own safety.  This is important for Artie and Phyllis — and any other seniors hoping to remain at home as long as they can. Falls are common in older adults, but one or more falls that result in serious injuries lead to a tenfold increase in the risk of admission to a nursing home.

Self-care and Support
Artie started speaking with Carallel Care Advocate Sheila Schultz earlier this year.

“I sometimes need a reaffirmation that what I’m doing is right. That becomes hard because I’m new at this,” Artie says. “I call Sheila and she gives me options I’ve never thought of or looked at that would be appropriate to the situation I’m in.”

Sheila, a certified dementia practitioner, acts as an educational resource and a sounding board for Artie, walking this journey with him.

“It’s common for dementia caregivers to get angry and feel guilty,” says Sheila. “I give him kudos for doing better than he thinks he’s doing and try to provide gentle guidance of thinking in a new way.”

Sheila sends resources about dementia to help Artie understand the underlying reasons for some of Phyllis’s behavior, coaches him on what to ask during neurology visits and how to be a health advocate, gives practical tips for coping with common dementia symptoms, and encourages him to lean on his circle of care for support.

“She helped me change my attitude around accepting help from family and considering outside help,” Artie says.

Artie now more readily accepts support from his adult children and grandchildren, who stop by frequently to check in and help out. He also has a group of friends — the ROMEOs, or Retired Old Men Eating Out — who get lunch together once a week.

A published author, Artie also journals about his dementia caregiving experience. “I just find it very therapeutic to sit down at my laptop and explain how I feel.”

One of Millions
Artie’s story is unique to him, but he is in the same boat as millions of other dementia caregivers in America. The support, guidance and assistance they collectively receive will dictate the health of the nation’s healthcare system.

When dementia caregivers receive holistic support like Artie receives from Sheila, it can be the difference between a dementia patient staying in low-acuity settings, like in the home, as opposed to visiting the ER or moving into a long-term care facility. Support helps dementia caregivers, too — they’re better positioned to maintain their own health, avoid falls and other preventable conditions, and ensure their loved ones can continue to live in a familiar setting.

One study shows people with dementia whose caregivers have depression have 73% higher rates of ED use over 6 months compared to those whose caregivers did not have depression, for instance.

Carallel’s human-led, tech-enabled dementia support program is proven to reduce caregiver burden and help dementia caregivers address their self-care needs, so they can in turn continue to address the needs of their loved one. Contact us today to learn more.

More on Dementia Caregiving
The ‘Invisible Second Patient’: Understanding the Role of Dementia Caregivers
How to Support Caregivers Through the 4 Stages of Dementia Caregiving