A labor of love

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Borough woman earns recognition for caring for ailing husband

NAUGATUCK — For Mary Lou Cassidy, placing her husband in a nursing home was never really an option.

“I think every person deserves the dignity of that personal attention and care. Most importantly, if that’s what they want, if they want to be home, they should be home. They need an advocate,” said Mary Lou, of Naugatuck.

Robert Cassidy, 78, was diagnosed with Alzheimer’s disease in 2000. Mary Lou, who married Robert 56 years ago when she was 17, has been his primary caretaker since his diagnosis.

Mary Lou called the disease insidious and said although it has progressed over 13 years, it felt like it spread fast.

“In my mind it is fast, but it took all these years,” Mary Lou said.

Prior to the diagnosis, Robert worked as a truck driver for most of his life.

After being diagnosed, Robert would sometimes become agitated, demanding that he be taken home, even though he was in his house. He would try to leave or sneak out, sometimes successfully and begin walking down the road.

Mary Lou knew that she had to be there to help him or else he would end up in a nursing home. She retired from her job as a nurse at the Southbury Training School in Southbury, moved her bedroom into what used to be her dining room, and transformed their home into a place to care for Robert.

“So what we did was took some of my money and took out another loan and built a room for him with a lot of windows and decided that he was staying here,” Mary Lou said.

“He’s in his 13th year and it’s been a long, frustrating 13 years. It really has been.”

A few years after his diagnosis, the couple’s daughter, Diane Cassidy, moved from Beacon Falls into the house to help take care of her ailing father.

“When he was first diagnosed he was very difficult to handle. So my loving daughter, I’m so fortunate to have her, sold her condo. I no longer have a garage, that’s where her apartment is,” Mary Lou said.

“We knew what was coming down the pipes, sort of, and we needed me to be here just in case. She was still working at the time,” Diane said.

Diane said she became a fixture in the house, and if she heard her father try to leave, she would come over and keep him distracted until he did not want to leave anymore.

“That’s what I did for years and years, always diverting his attention somewhere else,” Diane said.

Diane soon gave up her position at Taft School and went back to school to study nursing. She now works as a nurse at a nursing home in Waterbury.

“Lucky for me she is here,” Mary Lou said. “For the longest time we had his bed in the living room and I slept on the couch because he would try to take off and go downtown.”

Diane said when Robert was younger he had visited relatives in nursing homes and never wanted to end up in one himself.

“In his 50s and 60s, he always said, ‘Don’t ever put me in a place like that.’ So we know that’s not what he wanted,” Diane said.

Although it would be the easy thing to do, Mary says she doesn’t because Robert doesn’t want it.

“That was the big thing, we vowed we would never put him in a nursing home,” Diane said.

Diane and Mary Lou both said they have nothing against nursing homes. They just knew that, by keeping Robert in his home, they would be able to give him more attention than if he was in a nursing home.

“We’re both nurses, so he got lucky,” Mary Lou said.

While Mary Lou and Diane are Robert’s primary care givers, they receive helping hands.

Their neighbor, who they only identified as Walt, often lends a hand on things such as bringing in the trash cans if they are left out, snowblowing their driveway, mowing their lawn and keeps an eye out for the ambulance if it is called, since Mary Lou lives on an interior lot.

Also, a personal care assistant is sent to the home through the Connecticut Home Care Program, a state-funded program.

Mary Lou and Diane were also thankful for Robert’s personal care assistant, Bonnie Hepp. Mary Lou said that Hepp talks with Robert, reads the newspaper to him, and keeps him engaged.

The price of caring for Robert is high, as Mary Lou pays for much of his care out of pocket, and the sacrifices made by Mary Lou are many.

“I have two surgeries that I should be having and it’s coming up. I mean, it’s something I have to do, but I just can’t do it,” Mary Lou said.

Diane said her mother has put the surgeries off for a number of years because she had to take care of Robert. Diane said Mary Lou was concerned that no one would take care of Robert as well as she did while she was in the hospital.

“Well, I worry about him. He’s my priority,” Mary Lou said.

Mary Lou said the hardest thing is continuing with the work Robert usually did, such as gardening and fixing things around the house.

“He used to do a phenomenal job, but I just can’t do it,” Mary Lou said.

For all that she deals with as Robert’s full-time caregiver, there is no love lost between husband and wife.

“I often wonder when I look at him what is he thinking, can he think. I live for eye contact. Once in a while, when he first gets up in the morning, I’ll get the eye contact or he might say a word. I live for that,” Mary Lou said.

While she has no regrets, Mary Lou feels that there are things that she should have done differently.

Mary Lou’s advice for those who are beginning to deal with a loved one with Alzheimer’s disease is to join a support group both in person and online, develop sound financial planning and plan ahead for living arrangements.

“When you look around your home, are you going to be able to take care of it? Don’t think where you are in the beginning, that’s where you’re going to be five years down the road because it’s just not the case. This person is going to need total care,” Mary Lou said. “Do all that planning as soon as you know because that person is not going to stay where he or she is. You’ve got to think ahead.”

Even though she might feel there are things she would have done in a different way, there are those who feel Mary Lou is doing amazing job. Mary Lou was recognized with the Alzheimer’s Association’s Excellence in Caregiving award in November.

“Bob, who is in need of 24 hour total care, has the ability to remain at home because of Mary Lou’s selfless care she provided for him at home,” Heather Youle, care manager at Connecticut Community Care, Inc. northwest regional office, wrote in her nomination of Mary Lou. “Mary Lou also renovated their home to make it wheelchair accessible for Bob. As a result, Bob can be wheeled out onto the deck to enjoy the outdoors.”

Even though the past 13 years have been difficult, Mary Lou stands by her decision to keep her husband at home.

“I love my husband. That’s the number one reason,” Mary Lou said.