VAN WERT — Marcia Etzler has been caring for her mother with Alzheimer’s for about two years now, but going through quarantine together has presented a whole new set of challenges.
“I can say that for a fact, we’ve watched as she’s gone downhill,” she said of her 92-year-old mother, Marian Miller.
Prior to the novel coronavirus, Etzler had been taking her mother to CHP Adult Day Center in Van Wert on a regular basis. At the center, she would have help with meals, she had help with showers if needed and, most importantly, people to engage with.
“She would come home and called it ‘going to school,” Etzler said. “It was very good for her — I would recommend it to anybody who has somebody with this disease.”
Programs like these can be a big help, explained Julia Faulkner Pechlivanos, executive director for the Northwest Ohio Alzheimer’s Association.
“There are concerns about decline related to isolation and the lack of human interaction,” Faulkner Pechlivanos said. “It’s important to be socially engaged as that helps people both with cognition and also helps retain those skills, to some degree, longer. It’s also an issue with depression as that can set in with any individual when they’re isolated.”
The time away helped Etzler as a caregiver as well. Once COVID-19 shut down the center, that placed Miller back into Etzler and her husband’s care full-time.
“There was no separation for us,” she explained. “When she was in daycare, we could take her there and go meet a friend for coffee but with COVID we couldn’t even do that even if she wasn’t here because of my situation. … I knew I couldn’t go any place or do anything because I couldn’t leave her.”
Etzler is a heart patient herself, so her own risks kept her home while her husband would be the one making trips to the grocery stores or other errands.
“Before all this really happened, my husband and I would get up, get her breakfast and get her dressed and have her sit in the living room while we walked about two miles and came back. This was really the only time the two of us had to talk,” Etzler said. “Then I came back one day and she told me some man tried to get into the door — and I know this didn’t happen because the lady across the street always watched. I think she saw something on TV and thought it was real.
“That ended our ability to even walk together,” she added. “I started to go walk before I got her out of bed and then he would go walk, but we lost our time together. It wasn’t a pleasant husband and wife connection that they should have together. That part was bad.”
Etzler’s first experience with Alzheimer’s was with her father, Robert Miller, 15 years ago. Since then, she has seen it in her in-laws, two of her close neighbors and now her mother. Because of her closeness to the disease, she has joined the Alzheimer’s Association as a caregiver support group leader.
Faulkner Pechlivanos said those with dementia often experience sleep disturbances and have a tendency to wander, meaning caregivers almost always have to have their eyes on the patient. On top of that, there are additional concerns of making sure they are abiding by regular hygiene and social distancing, and remembering or understanding why it is important right now.
“We’re not only concerned about those with dementia, but we’re also concerned about the caregiver at home who now doesn’t get a break,” she said. “You can tell them the same thing over and over again or answer the same question over and over, but sometimes they don’t remember the answer or that they asked previously. It can all be very frustrating. We all know that caregiving is tremendously stressful, but especially right now in that setting. The health can suffer for the caregiver as well.”
Etzler said her mother is aware of the larger situation at home but has to be reminded.
“We would watch the evening news and she would ask what are they yelling about, the protesters,” she said. “I go, ‘Mom, it’s that virus that’s going around with people,’ and she’d say, ‘Oh, that’s right.’ I told her we can’t go any place because we are in that category of if we get it, it would kill us, and she’d say, ‘Well, we don’t want that.’”
Etzler had noticed her mother’s mental decline well before COVID-19.
Miller originally lived in Arizona when her neurologist began noticing a decline in her Mini-Mental State Exam often used to gauge mental skills. The maximum MMSE score is 30 points. The fewer the points accumulated, the more severe dementia has become.
In a matter of an appointment, Miller had dropped six to seven points. Etzler knew it was time to move her mother in. She and her husband have been caring for her for two years.
In addition to the stress of being a caregiver, Etzler had to deal with watching her mother continue to decline.
“She would come up with these crazy stories and wasn’t carrying on a conversation with them as she used to. She told the girls she ate dinner with Elvis Presley, and they asked me about it like, ‘Wow, really?’ When really we had an Elvis impersonator at the table with us,” she said, chuckling. “So she wasn’t right, but she wasn’t quite wrong either.”
In the six weeks they’d spent at home together during quarantine, Etzler started to notice in her mother's ability to converse.
“She did diminish quite a bit, I know, because she would sit there and talk to you and just start a sentence and be off into something else,” she said. “We would talk at the dinner table and she would put something into the conversation but it had nothing to do with the conversation. She would just be speaking to be heard.”
During dinners, Miller also began to play with her food, making their time together as a family more challenging.
“When you’re sitting down for a meal and somebody is playing in their food, it’s frustrating, but we didn’t want her not to be eating with us,” Etzler said. “There were all kinds of emotions that go with that — a lot of guilt, a lot of just feelings of, I don’t know, hate of the situation.”
Last week, Miller had to be taken to the hospital for a hernia that was affecting her digestive system. Surgery was an option.
“My mom is 92, so we can’t say what the outcome would be. She would have had six to eight weeks of recuperation, and I’m not putting my mom through all that,” she explained. “I know other Alzheimer’s patients who have had even minor surgery and then their mind is diminished.”
Etzler decided against surgery and instead enrolled her mother in hospice care — something she hadn’t planned to consider until later in the year.
“(Linda Pollitz, program coordinator for the Northwest Ohio Alzheimer’s Association) told me that a person has to make a decision for themselves, for your own well-being, when it comes to putting them in a nursing home and stick to it, aim for that. Then regardless of when you get there, you do it and not feel guilty about it,” she said. “So I was kind of preparing for that, but when this happened, I just felt like God intervenes sometimes.”
Though it was a shock, Etzler said hospice care could actually be a blessing.
“She seems to be in good spirits, but she’s not aware of where she’s at. When I walked in, she said, ‘I’m glad you’re here, I want you to meet my grandmother,’ and it was the lady in the bed next to her was in the fetal position. She kept saying, ‘I’m OK because I’m here at my grandma and grandpa’s house,’” Etzler said. “She may just do really good because of the nurses and other people there — and her grandmother in the next bed. She’s always been a people person, so that might help her mentally.”
Due to visiting restrictions, Etzler and family members aren’t able to visit Miller unless she gets to the “end of life” stage. In the meantime, she and the nurses are trying to set up FaceTime so they can still be connected.
“Now after we’ve had a few days together, (my husband and I) both look at each other saying we’re lost without her,” Etzler said. “I sit down at night — like last night I sat down and said this is the time I’m normally getting her ready for bed. I just feel like I should be doing something except sitting here in this chair. … The bond between mother and daughter becomes greater with this disease. If anything, my love for my mother is stronger now more than ever.”
Reach Tara Jones at 567-242-0511.