What caring for an elderly parent looks like in Vermont

BENSON - Millie Coursey is eating lunch at the breakfast bar in her daughter's kitchen. She polishes off a yogurt mixed with trazodone — an anti-anxiety medication — and moves on to a small container of spaghetti with tomato sauce.

Coursey, 90, has Alzheimer's disease. Her daughter, Lauren Mohan, said Coursey receives trazodone three times a day.

"It keeps her at a nice even keel," Mohan said. "When it starts to wear down, you notice it. Her personality is angry. She's a little grumpy today."

Two years ago, Mohan quit her job at The Lodge at Otter Creek, a senior living community in Middlebury, in anticipation of taking care of her mother full-time at home. She gave up a salary of $46,000 annually. 

There are an estimated 30,000 Vermonters providing unpaid care to loved ones with Alzheimer's and dementia.

Mohan was resident service director at Otter Creek for five years. She previously worked at Middlebury College for 13 years, and together with her husband, owned a convenience store in Forest Dale after leaving Middlebury College. Mohan has worked all her life but felt she had to give up her career for her mother.

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"I wanted to do it," she said. "It was something that in my heart I felt was the right thing to do."

After leaving The Lodge at Otter Creek, Mohan went to work full time for a small telephone company in nearby Shoreham called OTT Communications, making $13 per hour. Mohan took a three-month family medical leave from the job to get her mother settled into her house in Benson.

"After I got my mom here I realized there was no way I could go back full time because of her needs," Mohan said. "I ended up asking if I could come back part time until the situation possibly changed, and they flatly refused me."

'Too much to juggle'

A recent study by Home Instead Senior Care found that 50 percent of daughters in the workplace feel they must choose between "being a good employee and being a good daughter." 

Respondents said their supervisors were often unsympathetic when it came to balancing work and caregiving. Others cited a stigma associated with the topic, leaving many feeling uncomfortable discussing the issue with employers.

Mohan said she has had a couple of offers for part-time jobs but didn't feel she could accept them.

"It's just too much to juggle the job with the caregiving part," Mohan said. "I think it would have been too stressful for mom and myself to try to balance the job and visiting nurses. We chose not to do it, so we're cutting back and riding it out."

The Home Instead study found many women feel forced to give up their careers, often around the age of 50, to care for an aging parent. Mohan is 58.

The study also showed that women are twice as likely as men to spend more than 30 hours a week on caregiving. Home Instead Inc. surveyed 1,001 working female caregivers, aged 45-60, in the United States and Canada in March, 2017.  

According to the Society for Human Resource Management, working female caregivers average nearly double the amount of time caring for aging loved ones, compared to male counterparts — 9.1 hours a week vs. 5.7 hours.

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Mohan talked to her husband about quitting her job after her mother spent a month in a nursing home while Mohan and her sisters tried to figure out how to deal with the disease that had changed their mother's life.

"It was like a revelation," Mohan remembered. "I said, 'This has got to happen. I want to quit my job. I want her here. This is going to be my life for a while. There's no other choices. Are you OK with us doing this?'"

Mohan's husband said he was, if that's what she wanted.

"He's been a saint, even though I get angry with him sometimes," Mohan said. "He's been very supportive. I couldn't do this without him."

Coursey has a small, sun-filled room just off the living room in Mohan's modest home. On the walls of Coursey's room are photos of her and her husband, and another of her and her sister when they were little girls in the 1930s. 

"We had to hang up the pictures because she will take clothes or a plastic bag, gather her photos and put them in there, ready to go home," Mohan said. "That breaks my heart, but I don't take it personally."

The first step Mohan and her sisters had to take, once it became apparent their mother was suffering from dementia, was to go to court to have her declared incompetent.

Physically, Coursey is in excellent shape for a 90-year-old, Mohan says. Mohan has to keep the doors locked.

"Her dementia is so severe she has what's called a wandering risk, which means she has to be in a locked facility, because she will wander off and get lost," Mohan said.

"She wants to run away, no matter where she is," she said. "We're kind of shut-ins. I take her out every day to go for walks around the yard."

Coursey tried to climb a wooden fence and escape during her brief stay at a nursing home. Mohan says her mother has a "violent nature" without medication.

"It's all part of the dementia," she said. "It's a terrible disease."

Mohan butters a piece of bread and slides it toward her mother, who has finished her spaghetti. Coursey pushes the bread away.

Coursey sits silently, munching on a star-shaped cookie. Mohan says her mother often calls her the "boss," in what is probably not a term of endearment.

The mother she knew is gone, Mohan said, but every once in a while, there are glimpses. Like after Mohan had been shoveling snow and came back inside for a break.

Mohan's mother came up to her and put her hands on her cold, red cheeks.

"She said, 'Oh thank you, you did such a good job,'" Mohan remembered. "I'm like, 'Who's this woman?'" Mohan remembered, laughing. "Those are the kinds of things you let go of. You have to recognize who she is now. She's a different person now."

Life and finances on hold

Mohan and her husband had planned to sell their house in Benson and move to Bristol to be near their daughter and grandchildren. They also wanted to buy a home with two bathrooms to better accommodate Coursey's needs. Their house was still on the market last month but the prospects of moving are dim.

"Unfortunately there's a possibility we're going to take it off this month, just because the dynamics of having my mom here has affected our income," Mohan said. "We're having a tough time trying to obtain a loan for  a new home."

The bank can only take her husband's income into account for a loan, Mohan said, and the amount they could get would not buy a "large enough, nice enough house." 

Mohan has not looked into whether any assistance is available from the state, but she said her sister, who is her mother's guardian, is paying her the same wage she was making at OTT Communications — $13 per hour — for a 40-hour week as a caregiver. The money is coming for their mother's estate.

"So we're managing to squeak by," Mohan said. "We're not destitute. I know how to manage money. It's tight, but you do what you have to do."

Mohan and her husband have also had to put off travel plans. But she said she has no regrets. Especially when she sees her mother smile.

"Doing something right, you know, that feels right, and just knowing that she's safe," Mohan said. "Knowing just in my heart this is what I'm supposed to be doing, and that I'm doing right by her. Knowing that I won't regret it."

Contact Dan D’Ambrosio at 660-1841 or ddambrosio@freepressmedia.com.