Taking Good Care

January 16, 2014
BY Simone Ellin
Caregiving is a noble calling, but at what cost?

Not Just Parents
While it’s more common for adult children to care for their parents, spouses often become caregivers for each other. Sheila Eller’s husband, Steve, has had Parkinson’s disease for the past 20 years. For most of these years, his symptoms were controlled, but in the last few, the illness became increasingly incapacitating for the 70-year-old. His wife, a 69-year-old speech therapist, tried valiantly to keep her husband at home, but as his illness progressed, the situation became more and more difficult.

“He began having balancing problems,” said Eller, as well as memory problems and confusion. He developed expressive aphasia that resulted in difficulty finishing sentences, using nonsense words or the wrong words.

“One day, he called me and said he had locked himself out of the house,” related Eller. “What he meant to say was that he was on the second floor and didn’t know how to get downstairs.”

After Linda Noll’s mother, Cathy Peden, had a fall, Noll determined it was time for her parents to move to an assisted living facility. (Photos by David Stuck)

After Linda Noll’s mother, Cathy Peden, had a fall, Noll determined it was time for her parents to move to an assisted living facility. (Photos by David Stuck)

Her husband once weighed 310 pounds; now he needed help moving around, and Eller was not strong enough to move him.

Steve Eller would become angry but had difficulty explaining why. He had hallucinations and delusions, imagining himself as in earlier days when he was director of Beth Tfiloh Camps, a job he adored and held for 37 years.

Determined to keep her husband of 38 years at home, his wife hired a company to assess her home for safety and accessibility. To her dismay, the assessor concluded that the home was not a safe place for her husband.

So she began the painful process of finding a suitable place for him to live.

“I was constantly in tears,” she recalled. “It’s the worst situation a spouse can have, the hardest thing I’ve ever done.”

After visiting several facilities, Sheila Eller settled on Milford Manor Nursing and Rehabilitation Center in Pikesville.

“It’s been almost a year since he’s been there, and he is 75 to 80 percent better,” she said. With appropriate medication, most of her husband’s psychiatric symptoms are under control, and for the most part, she believes her husband is receiving “phenomenal care.”

“I’ve come to understand that a facility is as good as its front-line staff. If I have an issue, I talk directly to that person instead of going above [that person’s] head. For the most part, I find them to be very responsive,” she related. “The more I’m there, the better care he gets.”

Eller even takes time to cook for the staff, talk to other patients, decorate the dining room and make appreciative signs for the staff. Her husband’s room is decorated with “I love you” signs.
“The director has asked me to get a family support group started,” said Eller, “and he asks for feedback on what he can do better.”

Home vs. Facility
Eller has visited her husband almost every day since he moved to Milford Manor. On nights before she is scheduled to work, she leaves the nursing home by 7:30 in order to get a good night’s sleep. Otherwise, she’ll stay with her husband until he falls asleep at around 11:30. Some people question her commitment to the daily visits.

He’s “my husband and my heart,” she said. “I’ll be there as much as it makes me happy. I look forward to it. We started dating in 1959, but my parents broke us up. They said I couldn’t spend my whole life with one person. So we married different people and then got back together. I always knew we’d be together. He’s my beshert; we belong together.”

Now that her husband is more stable, Eller, who spent 10 years caring for her aging mother until her death in 2006, toys with the idea of bringing him back home.

“I think about what I would need to do to have him at home,” she said. “But home wouldn’t have the same kind of coverage.”

When her husband’s physician says that his condition will not improve, that the best hope is for a plateau in his symptoms, “my response to him is, ‘But if he can be home for six months, isn’t that better?’ But then I think maybe it’s too much of an adjustment. He won’t even know where he is.”

Sometimes, Eller’s husband calls her his prison guard.

“He says he wants to go to 3113,” the address of the family home, she said. “He thinks we have two houses and asks, ‘How do we pay for it?’ Every day is like a homecoming. He has no recollection of the past six months.”

“With Parkinson’s,” continued Eller, “you never know which brain cells will be working that day. I always bring the newspaper, and some days we can discuss nuances [from the articles], and other days I have to turn the paper over because he’s holding it upside down.”

Seeking Help
Shortly after Noll’s parents moved to Springwell, she retired from her job. Since then, she has focused on getting her parents’ house ready for sale.

“Sometimes I feel guilty about them having to move. I feel bad pushing them out. I look back at the pictures,” she shared. “Only 10 years ago they looked so good. You remember how good they were and all the good times. [My mother] was a young grandmother at 38; she married at 16. She had so much energy. It’s not easy to see them age. You go through a lot of emotions.”

And when the eventual end of the road arrives, a caregiver’s life doesn’t necessarily get easier. Although the responsibilities that come with caregiving frequently create exhaustion, stress and even illness, once caregiving ends, the caregiver often experiences feelings of loss and grief, said Gradet. “What do I do now?” a former caregiver grieving the loss ofa loved one might think. “That was hard, but it gave structure and meaning to my day.”

In essence, explained Gradet, a daughter, for example, may not only mourn her mother, but her role as caregiver as well. Caregivers, therefore, need to ask for and accept support at all stages of the caregiving process.

“The attitude of ‘I’m going to do it myself’ comes at a great cost to the caregiver,” said Gradet. “Sometimes a professional can handle it better because he or she is not a family member and is more objective. Do people try to be their own lawyers or their own surgeons or dentists? Why do we think we’re experts at caregiving? We are fortunate to have resources and a Jewish community that is here to help.”

Also read:
Communal Resources for Caregivers
Aging in Place
The State of Caregivers in the United States
The State of Caregivers in Baltimore’s Jewish Community

sellin@jewishtimes.com

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