By Sadia Badhon
For 25 years, Joyce McMillan and her husband Garth took trips to Florida during the winter months. Last year was the first time they could no longer go because of Garth’s health conditions, and they may never go back there together again.
Joyce and Garth have been married for 62 years.
Garth’s health condition started to decline about 10 years ago. Joyce and Garth’s daughter, Sandi McMillan, says she saw the changes in her father even before her mother did.
Sandi visited her parents in Florida every year in the summer when they stayed there.
“I was there for two weeks to three weeks every year and I could see this total decline,” Sandi says.
When she first started visiting, her dad would accompany her mother to pick her up from the airport and go wherever they went, and most importantly, he would be active with them.
“All of a sudden, he was no longer coming to the airport,” Sandi says..
“No no, it’s okay, I don’t really want to go with you. You go ahead and have a good time,” he would say to them.
Joyce and Garth exercised together regularly, but slowly that stopped too.
“We’ve walked together and then suddenly, if for one reason or another I couldn’t walk, he didn’t want to walk and then pretty soon he wasn’t walking,” Joyce says.
Over a 10-year period, Joyce saw a steady deterioration of her husband’s mental and physical health. While the last three years, she says, has been a total decline.
“It was just little bits disappearing and I think because I didn’t live with him 24/7 like my mom does, and my sister and my brother didn’t see him in that dense of a time, they really didn’t notice it,” Sandi says.
Sandi would go back home year after year and notice something was wrong.
“You know he’s asking the same questions over and over and over again. He’s not nearly as active. He’s becoming extremely lethargic and doesn’t really want to connect into a conversation much more than answer my questions,” Sandi explains.
Garth also used to be an avid reader but Joyce says he hasn’t picked up a book in six months.
“I notice he might be holding a book but he didn’t seem to be reading it and then eventually he was reading McLean’s, which is shorter stories, now he doesn’t pick anything up,” she says.
Garth, 86, was diagnosed with Alzheimer’s disease about two-and-a-half years ago.
Because forgetfulness is associated with old age, Alzheimer’s sometimes goes untreated. Although medication can help improve symptoms, there is still no cure for this disease.
“Testing is always interesting. With Alzheimer’s, you can have good days and bad days. He can sit here even today and talk to you and you’d say, ‘there’s nothing wrong with him,’” Joyce says.
As symptoms worsen, the caregiver faces a heavy burden. Joyce has been a full-time caregiver for her husband since the symptoms first showed and she hasn’t gotten a break since.
“What becomes an issue with the caregiver is that the caregiver is not far off age of the person who’s getting the care, so who takes care of the caregiver?” Sandi asks.
Joyce is looking into long-term care homes now, as physically providing care for Garth at home is becoming more challenging for her to manage.
“To me the biggest problem is they don’t have enough long-term care. We have all sorts of retirement homes being built all over the place because they’re made for profit and we don’t have enough long-term care,” Sandi says.
Last December is when Joyce applied for respite and long-term care. Respite care is temporary living arrangements for seniors that provide relief for the caregiver. Sometimes, these arrangements need to be made a year ahead of time.
In February, Joyce got approved for 30 days of respite care for Garth. This would be the first time she got a break since Garth’s health started to decline 10 years ago.
“It’s like having about a three-year-old, dealing with a three or four-year-old, except that the three or four-year-old is learning everyday, is expanding, but he is losing everyday and going down,” Joyce says.
As she saw herself getting more frustrated over the years, she says she’s able to cope much better after taking the break.
“I see now that’s not being fair to him. I mean, it’s not his fault and my being away from him for the 30 days gave me time to sit back and assess and look at the whole situation, that he’s sick. He can’t help what he’s doing,” Joyce adds.
But shortages of respite care beds in (Ontario) makes it difficult to take those breaks.
Joyce continues to face the plight of a caregiver as she waits for her husband to be accepted into a long-term care home, which could take up to a year.
