- Associated Press - Wednesday, June 1, 2016

SHERIDAN, Wyo. (AP) - Imagine living with a stranger. Sharing your kitchen, your living room and your bathroom with somebody who doesn’t really know you. It is awkward; it’s frustrating; and it can be exhausting.

For many who are caregivers to individuals with dementia, life resembles living with a stranger. Maybe not at first, but as months and years go by, the person you married or the person who raised you begins to disappear.

Sara Ary, 77, has been caring for her husband, Leo, for several years, the Sheridan Press reported (https://bit.ly/1UbfKJj).


Ary said her husband’s symptoms started small. He was forgetful, and he couldn’t remember things she told him. He sometimes couldn’t remember where he was, and Ary said he steadily declined from there.

The couple has already experienced many of the milestones of dementia. Ary took away her husband’s keys so he couldn’t drive anymore. Sometimes, Ary said her husband seems to travel back in time. He’ll ask where one of the couple’s dogs went, but the dog had died. Every now and then, despite 30 years of marriage, Ary’s husband mistakes her for his sister or doesn’t recognize her at all.

“I knew it would happen eventually,” Ary said fairly matter-of-factly about what could have been a heartbreaking advancement of her husband’s disease.

As the Alzheimer’s progressed, Ary has found that she cannot leave her husband home by himself. He has started to leave the house and wander. So she bought a GPS device that she puts in his wallet. It allows her to track his whereabouts from her phone. She’s already had to use it more than once.

Progressing frustration

Ary and her husband always picked on each other. They’d joke around and tease. But as his dementia progressed, the teasing grew more biting.

“He puts me down a lot,” Ary said. “He will pick at me, but now I wonder if that’s what he thought all along.”

The stress and the frustration have worn on Ary. About a year ago, her doctor prescribed her an antidepressant.

“I was just getting really angry,” Ary said. “We started with a small dose and we’ve upped it once.”

Ary said she thinks she’s coping well, though. She ensures she has time for herself during the week. She attends a caregivers’ support group, takes time to run errands on her own and participates in a bowling league.

Occasionally, too, she takes advantage of the Day Break adult day care program at the Sheridan Senior Center.

But the frustration Ary feels never fully disappears. She said it comes from having to repeat herself over and over again. It comes from not being able to go do the things they and she used to do.

“The whole situation is just frustrating,” Ary said. “Here you have this man who was quite capable and now, you know, he’s lost in his own house.”

Finding a community

Ary said finding a community in a caregiver support group through the Sheridan Senior Center has helped with the pressures of care giving. Support groups and bowling give her an escape.

She doesn’t attend the caregiver group every week, but she goes as consistently as she is able.

“The hardest thing is, there’s nobody to talk to,” Ary said about being a caregiver for somebody with dementia. “I used to bounce everything off of him. But, now I can’t do that.”

The caregiver support groups, though, help Ary do just that. The members of the group talk through what is happening in their lives and with their loved ones. They offer advice and discuss issues without judgment.

At a meeting of the group in April, Ary mostly listened in while others shared the happenings of the week. One attendee noted that she got a full night’s sleep the night prior - that made it a good week in her mind. Another shared that his wife had started misplacing things, putting towels in the refrigerator and her purse in the freezer. Another attendee noted that her spouse started going outside to relieve himself. He was a farmer, she explained, and was used to just standing behind the tractor in a field.

The meeting was full of laughter. “What else can you do?” attendees would shrug.

At one point, though, a woman shared that she had lost her cool with her spouse. She noted her guilt for “blowing her stack.” She apologized a few minutes later to her husband, but he didn’t know what she was apologizing for. Still, she said, she didn’t like losing control. And, while her husband didn’t remember the incident, the feelings didn’t disappear as quickly for her.

There were tears. The group shared frustrations and sadness. But they didn’t dwell on those.

As one attendee noted, “If you dwell on the negative, which is so easy to do because it is so present and it’s so there, you miss the high points. You have to grab those.”

Mostly, though, the groups are a safe space to share their feelings and ask questions of others going through similar circumstances.

“We need to talk about it,” Ary said of the conversations. “At least we know that we’re not the only ones in the world going through this because I was sure I was.”


Information from: The Sheridan (Wyo.) Press, https://www.thesheridanpress.com/

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