When it comes to the problems of aging, few raise as many emotions as when loved ones can no longer care for themselves because of age-related issues. While local resources offer some options, one local family is providing home care for their family matriarch, who suffers from dementia.
Four generations live in the Zeise home: the matriarch, Elaine Winslow, her daughter, Mary Zeise, Winslow’s granddaughter, Julia Zeise, and Winslow’s great-grandson, Daniel Zeise, 11. The entire family helps care for Winslow, including Daniel Zeise for short periods.
Before moving to the Wallowa Valley two years ago, Julia Zeise, who had nursing home experience as a Certified Nursing Assistant, had been caring for Winslow. Mary Zeise followed her daughter to the area about a year later.
The family moved to the Wallowa Valley at the behest of Mary Zeise’s sister, Lori Winslow-Ford of Wallowa, who wanted to consolidate the family. Although family members noted Winslow’s forgetfulness, it was so gradual, they didn’t suspect dementia. Winslow-Ford suggested some testing, and a visit to a local medical clinic confirmed the disease.
The Zeise family never considered assisted living or memory care. “I’ve worked in nursing homes before, and while many are nice, they’re always understaffed and you just can’t get the kind of care you do at home,” Julia Zeise said.
While they do not work alternating shifts to care for Winslow, the Zeise family has a color-coded calendar with each person’s schedule, and the caretaking works around the calendar. “You’re flying by the seat of your pants,” Julia said. “It’s like a newborn’s schedule,” her mother added.
The Zeise family is learning of some local resources to utilize, especially the Oregon Department of Human Services. “This spring, we took caregiver classes from them that were very helpful. They also gave us the name of Monica Weaver, who has an adult foster care home on Hurricane Creek Road. Monica had a space, so we take Mom there one weekend a month when we need a break. Monica was great with Mom and she liked being there, but it’s the only place in the county,” Mary said.
“There’s a huge need that’s being ignored. Everybody is having trouble finding temporary care,” Mary added.
The Zeise family also said that Kathy Taylor and Charleen Haines from the local Caregiver Support Group are very helpful as well. Winslow also participates in outside-the-home activities such as church, and the family frequently take her for outings.
Although home care can be difficult at times, Mary said, support from all avenues is the key to perseverance. “Julia and Daniel were doing it alone, and it’s too much, which is one of the reasons I’m here.”
Julia said that one of the difficult things about home care is outsiders who don’t seem to understand dementia. “They engage in small talk with her (Winslow) and they think she seems fine. They make appointments or leave messages with her and they don’t understand it’s not really getting through. She can be an entirely different person at home than out in public,” she said. Unintentionally indelicate questions can raise issues if asked in Winslow’s presence. “Sometimes people ask me what I do, and if she’s (Winslow) sitting next to me, I just tell them I work from home to spare her feelings,” Julia said.
Both Zeises have their ways of coping with occasional stress. Mary spends a portion of her spare time at the Buddhist temple on Hurricane Creek, while Julia spends time in personal meditation in order to maintain her equilibrium.
Both women say that home care can be a positive experience. “It’s really a reflection of yourself. You can learn where you got some of your own problems from, and seeing them in other people helps you to want to work on them. It also helps you deal with other people, especially with conflict,” Julia said.
Both women say Julia Zeise’s son, Daniel, is a model caregiver because of his endless patience. “Also, he has no history or past with her to interfere with his perceptions,” Mary said.
Daniel displays a remarkable maturity for his age. He was about 10 when his great-grandmother was diagnosed. “My mom and grandma do a lot of the care, but they say I do a big part somewhat by toleration, because she can get on their nerves, like if she keeps asking the same question again and again, I can answer her calmly. I feel great with her. Her memory issues don’t get in the way of us. It’s really nice living in Oregon with her,” he said.
The experience doesn’t appear to have scarred Daniel in the least. When asked if his view of life or adulthood had altered with the experience, he said, “Not really, I guess it just opens up a new way to look at it. I still have all my knowledge of that, and this is just a new knowledge of that.”
The experience has taught the youngest Zeise a certain amount of patience. “If you’d have introduced me to her five years ago, I’d have moved out by now, but through this I’ve grown to tolerate and love,” he said.
For anyone considering home care for a loved one, both women strongly recommend using every resource and support available as soon as possible after a diagnosis. Most important, they say, is self-preservation. “Taking care of yourself is the only thing that can keep you doing it and doing it well. It’s easy for people to become a martyr and just lose themselves,” Mary Zeise said.