The News Herald (Willoughby, OH)
Mentor man living up to wedding vows
Husband has been caring for wife who was diagnosed with dementia for 12 years
John Bastjancic sits in the living room of his Mentor home, lovingly looking over at his wife Carol sleeping on the couch.
Meanwhile, he has a difficult, emotional and sometimes tearful conversation about their life together — before Carol’s brain seizure and after.
John, 70, and Carol, 71, have been married for 28 years and like most couples they shared a dream of one day retiring and doing things together.
However, on Feb. 6, 2006,
John was at work in Solon when he received a phone call from his panic stricken wife who told him she couldn’t remember how to do anything. He immediately drove home and took her to the hospital where she stayed for three days while being diagnosed with Frontotemporal Degeneration (dementia) after suffering a brain seizure at the age of 59.
John had originally thought that her loss of memory might have been the result of a stroke, not the dementia the doctors diagnosed.
Now, instead of looking forward to retirement and doing things with his wife, John simply hopes he can keep her comfortable and happy.
Carol previously did secretarial work from home but is now totally dependent on John for everything. The dementia has robbed her of her memory and her ability to do even simple tasks such as eating, bathing and dressing herself.
“It’s been kind of hard. I’ve been retired for over six years now because I had to take care of her full time,” John said. “As her condition got worse, she couldn’t be left alone anymore.”
John recalls Carol could answer the phone but not hang it up so he couldn’t get through to make sure she was all right. Many times, he worried she might have fallen and hurt herself and would leave work to go home and check on her. He would leave her lunch on the table when he left for work, but she would forget to eat it.
For the past eight years as her conditioned worsened, John has assumed the full-time responsibility dressing Carol, feeding her and being her primary care-giver.
For John, a typical day includes getting up at 5:30 a.m. so he can have some time to himself. Carol wakes up at about 6:30 so he gets her up, washed and dressed.
He brings her downstairs and feeds her breakfast. He then does laundry or any odds and end around the house while Carol sits or naps on the couch. She sleeps a lot these days, according to John.
He makes her lunch and dinner while keeping an eye on her, for fear she may fall and hurt herself while she is up and walking. He puts her in bed about 9:30 p.m. and takes an hour or so for himself to get on the computer and catch up with people or check emails.
“It’s basically sitting here and taking care of her,” John said. “All day every day is devoted to her.”
John does utilize some outside help. He has an arrangement with Griswold Home Care to come in four days a week for a couple of hours so he can go to the grocery store, attend his own doctor appointments or even just mow the grass and work around the house.
“I pretty much am in the house all the time with her, John said. “I gotta take care of her. I get tired, it’s not always easy and she isn’t always cooperative. I’m pretty fortunate, it wears me out and I get tired, but she’s not bad.
“There are some who are prone to violent tempers or rages,” he added. “She did have a little period where she did have some angry periods where she did a lot of screaming and stuff which wasn’t great, but she’s been pretty mellow.”
Carol’s condition sometimes takes a mental toll on John. She can’t remember his name or that they are married.
“She hasn’t said my name in the last seven to eight months, so it’s hard,” John said. “At times it’s taxing because you know things are not going to get any better.”
John, who describes himself as an obstinate stick-to-it kind of guy, is determined to care for Carol himself in their home as long as he can. He believes life would be easier if he put Carol in a home, but doesn’t believe she would survive if he did that.
John teared up as he said he didn’t want to be responsible for her death.
He knows the day may come when he may have to look into respite care of a home in case something happens to him first. He suffered a mild heart attack in 2008 and was hospitalized. Fortunately, at that time, Carol was still able to care for herself somewhat and neighbors came over to help.
“If something happened to me and there was nobody to come in and get her, she would sit here until she died,” John said. “Even with that I’m not going to hasten her death, she’s my wife. It takes a lot of time, a lot of work and a lot of devotion. It’s not an easy thing to do but it’s something I feel I have to do. I have to take care of her.”
John looks over at Carol sleeping on the couch and says, “look at her, that’s not the woman I married.”
But, even knowing that, he still holds out some hope that the woman he married is inside the her somewhere.
John explains the difference between Carol and a toddler is you can teach a child the basic essentials, like how to dress, and tie shoes, and eat, but you can’t teach that to Carol because she won’t remember.
He says that and the knowing it’s not going to get any better is the hardest part to deal with.
John’s biggest concern is making sure Carol is comfortable and happy and worries because he has no way of knowing of knowing if she is since she hasn’t been able to have a conversation with him for over two years.
“I watch her to make sure she isn’t in any pain and try to keep her from getting into trouble and getting hurt,” he said. “That’s all I can do.”
November is National Alzheimer’s Disease and Awareness Month along with National Family Caregivers Month.
While John is one of 600,000 unpaid caregivers in Ohio providing unpaid support to a loved one with dementia or Alzheimer’s disease, caregivers are predominately female, making John one of a few male caregivers taking care of a family member. He has no family to help and relies on little outside help.
“I pretty much am in the house all the time with her. I gotta take care of her. I get tired, it’s not always easy and she isn’t always cooperative. I’m pretty fortunate, it wears me out and I get tired, but she’s not bad.” — John Bastjancic of Mentor
For additional information on Alzheimer’s or dementia, contact the Alzheimer’s Association Cleveland Chapter at www.alz.org/ cleveland or call the 24 hour hotline at 800-2723900.