Chris was born in London, England, but her family came over to the Toronto area at a young age. She was raised there, and got married there, but after a difficult divorce, Chris followed her sister and brother-in-law to Edmonton, taking her two daughters with her. “Years later I met my husband, Carl, and started work as a secretary at Scona High School. After that, I did a program at Grant MacEwan, and became a social worker at 34 years old.” As a social worker, she held a variety of positions at the Edmonton Max (known formally now as the Edmonton Institution), a maximum security federal prison for male offenders. At The Max, she started counselling the inmates one-on-one, moving on to groups of 10-15 inmates. “I’d worked for years with offenders. When I got to the Max, it was quite interesting to work with brain damaged individuals, because I’d find them on a unit and be frustrated. I had a client that I knew was brain damaged from an accident, so he would end up in the hole all the time because they’d say, ‘Hey, Alex’, and the guy wouldn’t look [over] because he needs to ‘see it’, like I do now.”
After 17 years, she had truly left her mark on the Edmonton Max. She even helped in the opening of the first halfway house in Edmonton, which served mentally ill offenders. But as she aged, work began to become more challenging. “That was a tough job, so a lot of the time when things went wrong, they thought it was burnout. I ended my career as a parole officer; I loved that. Then things started to go a little crazy.” At the time, she thought it was the stress of the job, and her doctors agreed. The signs of her cognitive decline started peeking out, though. “[Carl would] come home from work, and I’d be calling him a different name – George. Luckily, he isn’t the jealous type,” she said with a smile full of laughter. “You’re just lucky George is my father’s name,” Carl responded, the laughter also bright in his eyes.
It wasn’t only names that became difficult for Chris, though. “I had a couple of car accidents that shouldn’t have happened, and I was so tired all the time, but the big thing was, I was forgetting things. Things started to happen that everybody laughed at, but after awhile – I say it nicely – I felt like the class clown.” At one point, at the end of a rotation with one of her students from Grant MacEwan, she received a gift. It was a key-chain she could wear around her wrist, because she kept forgetting or losing her keys. The whole department found it humorous. “It got to be more than just funny. Everybody thought it was funny, but it was hindering my work.”
At 52 or 53 years, she went to the Misericordia Hospital for testing, believing that she had depression. “He’d given me these tests. He said possible dementia. I never told my family. Nobody. I left there. I was in the office, and Diane, a friend of mine, phoned me and I answered the phone with ‘Good afternoon, Christine McIlroy.’ It was a girl friend I’d had for years (from back in Toronto) and said, ‘Oh my God, you’ve got Alzheimer’s, Chris!’ because [McIlroy] is my first husbands name. I laughed with her, but I was actually crying.”
That was a journey. I had dementia. She had dementia. I was her main caregiver
Again, believing it was the anxieties of the work, she ended her work as a parole officer and managed to get a job teaching abused women’s groups. “I could teach my groups because I teach from my heart… It’s facts I can’t work with, and the thinking. I’d have to sit after groups for an hour before I could even drive home. As a social worker, I have to document the he-said, she-said, and I couldn’t do it anymore. I bluffed. Everyday I picked a new student to be my co-facilitator, and she did all the filing because after a while, I couldn’t do that.” Unfortunately, it only got harder for her. “Later I couldn’t read out loud. I could in the morning, but I sounded like a two-year-old, so then I knew something was wrong.”
One of the most frustrating things for her is the innate difficulty of the illness onset. “That’s what’s hard about this illness: you can go to a doctor and he thinks your normal, and your family’s telling him all this stuff’s happening. In the beginning, it’s like a roller-coaster, because you could go a week or two or a month, and nothing bad happens. Now it’s every day for me – or every time I’m with people.” As Carl put it, “It’s kind of like sensory overload for her.”
Getting to the crux of the matter, Chris teared up recalling her diagnosis. Carl and her weren’t actually certain of the formal diagnosis, and they weren’t sure the doctors were, either. They’ve heard it called a frontal variant of Alzheimer’s, and also frontotemporal dementia. “When I finally [told work] what I have, that was the hardest day of my life, I think. Because I knew I would never work again. I love my job. I was young; I was fifty-four. Now they’re saying it’s a variant because when they gave [the diagnosis] to us, they told the kids and [Carl] that I would go mute… they’d assumed I’d be gone within twelve years, and this has been going on fifteen.”
“The hardest part of it all, was at the time all that was happening, my dad had died, and my mother moved in with me. She had Alzheimer’s, and no one had diagnosed her. I didn’t even know. I thought my dad had just spoiled her rotten.” She believed her mother had memory problems, nothing more serious than that, and took her to a doctor, who prescribed her medication for her memory. “I phoned the pharmacist. They said they wouldn’t give [a patient] that medication unless you have Alzheimer’s. I [went] back to the doctor and he said, ‘Well, I thought you knew she’s got what you have.’ That was a journey. I had dementia. She had dementia. I was her main caregiver.”
Before they were aware of Chris’ mothers illness, they were told it would be best for Chris if her mother was moved into a home, due to the amount of work that was necessary for Chris to care for her. “Not even probably six months into the lodge, it was full blown. She’d walk out in the nude and walk out at two in the morning in the snow. We had to put her in a locked unit. It was a really tough journey for her; it was hell.” For Carl, taking care of Chris’ mother became very difficult. He told us “Most of what I felt when you were looking after your mom, is you’re seeing yourself two to three [years] down the road. That’s hard.”
I can be really good, but I can be really bad; it changes like that.” She snapped her finger and wiped away her tears. “I’ll start yelling ‘Mommy! Daddy! Fuckee!’ in the middle of anywhere… ‘Lover.’ Weird things come out of my mouth. I can hear it, but I can’t stop it; I don’t mean to say any of it.” This has led to some awkward circumstances, especially when Chris goes to buy even a small amount of groceries. Carl told us a recent story. “She said to the lady at the till, ‘I have dementia. Can you be a little bit patient with me?’ and the lady says, ‘If you have dementia, why do you even go out?’ which I thought was pretty mean. That’s where this awareness would help because, like I’ve said, she’s been accused of being drunk. It’s the dementia.”
And yet, in the face of adversity, Carl and Chris refuse to just give up on life. “I go to groups; I believe in groups. I co-facilitate a group, which is neat for me. It gives me some self respect, or worth. Plus, I feel like I’m still doing my work, kind of. The sad thing is, I teach this group, and I see people have gone and died, and in hospital, and I’m still going. At first, I was feeling really guilty. Isn’t that sad? Feeling guilty because you’re doing good? I’ve always been someone that works with how we feel about it, and it’s okay to be mad. It’s okay; we don’t have to fix it.” The group had been an incredible support for her where she brought up discussions concerning the anger, the loss of independence, and other emotions that come with the diagnosis. Unfortunately for her, life has changed. “They did this brain gym in the group, and I left there crying. I came home and thought, ‘Oh my God, I’m sicker than I thought.’ They would put on the TV, and the color would come up green, but the word written was red. Every time, there was no way [I was getting it right]. They did it last week, and there were too many people in the class, and I said, ‘I can’t do it. I’m not going to do it.’ Because I ended up standing up calling them ‘Mommy, Daddy!’ I was yelling it over and over. It’s horrible to see people’s expressions when you’re doing this stuff. That’s what’s weird.”
“You asked me a question awhile ago about ‘Do I think of the future?’ and I just thought of that… I said no, and then it came out. I did. [Carl] always says, ‘Don’t worry, I won’t put you in a home.’ But I’m already looking at homes. Deep down, I guess I am worried.” Christine’s eyes began to glisten with fresh tears as she looked at her loving husband, continuing, “Because I don’t want you to go through what we went through in the house with my mom.”
Christine was originally told she wouldn’t have more than a few years before she passed, and she and Carl have been loving each other, and doing the best they can to make each day a good one. When he was asked if he thought about the future, Carl laughed in response and said, “Not particularly, because our future should have ended about ten years ago. Everything is gravy now.”
Background & Information
Frontotemporal dementia is an umbrella term used to describe different clinical disorders characterized by prominent disturbances in behavior, personality, and language. It tends to have an onset in mid-life (50s and 60s), and is an uncommon but not rare disorder. The most common (approximately one half of cases) subtype is the behavioral variant which is characterized by apathy (loss of motivation), disinhibition (inappropriate behavior), hyperorality (altered food or beverage preferences, such as excessive carbohydrate cravings), and compulsive behaviors. The diagnosis is not infrequently mistaken for a psychiatric disorder.
The other subtype, grouped under the term Primary Progressive Aphasia, relate to clinical syndromes characterized by the slow and gradual onset of difficulties with language, demonstrated by challenges with word-finding, comprehension, and sentence construction.
At this time, in spite of ongoing research, there are no effective disease modifying treatments.
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