The caregivers had many different stories about how they became a caregiver. Some people started caregiving for a friend or a loved one after a sudden event like an accident or a severe illness. Many people took on a role as a caregiver more gradually, as their care recipient was diagnosed with an illness that progressed more slowly. Still some people only met their care recipient after they were affected by their illness; these people knew they were accepting the responsibilities of a caregiver when they became friends or partners.
Some people remembered a specific moment when their caregiving had started. For example, Donovan felt that the caregiving started when his wife, diagnosed with MS, started using a wheelchair.
He was about in his early 50s and my mom and I had to go away for a few days for a conference and I came back. And the situation was getting worse. So we took him to the hospital. Actually, we took him to his doctor’s first and, as good as they could, they gave him a clean bill of health. Well, for his conditions that was as clean as it was going to get.
Marlyn’s first major caregiving effort was when they moved to an adapted home and she had to pack everything alone. Many other caregivers felt that their role gradually increased over time; there was not really a single point in time where they could say they had become a caregiver.
Several caregivers said that they never chose to be a caregiver, but “became” a caregiver because of the situation they were in. David, for example, said, “Well, this whole thing started not with me as being a caregiver because you become a caregiver; a caregiver is somebody who helps out, but it’s not ever really a job that you apply for.’
Others felt it was something that came from within. You can read more about this in the topic page Uncovering why and how caregivers care
Different family's contexts
The people we interviewed came from a diverse set of family backgrounds with different living arrangements, and family sizes. Caregivers were at different stages of their lives and had different sorts of relationships to their care recipient. Some were caring for a parent; others cared for a spouse, a child, or a friend. A few people were young adults or had young children when they became caregivers.
My husband started to have difficulty dragging a foot. He started to show symptoms in terms of writing; did not know what it was. So we went the path of going to the doctor, who sent us for further tests; sent us to a neurologist. One of my horror memories is that the neurologist diagnosed my husband over the phone. My husband called him and asked him—now my husband did pressure him—and [the neurologist] said, “Well, you come in and we’ll talk about it.” But, in the end, he did tell him the diagnosis of MS over the phone. And because his personality was suggestive, I saw the deterioration within 5 minutes. He had been on the phone, he had walked and all of a sudden, he couldn’t master things that he had done just a few minutes ago. So obviously it’s a pet peeve of mine that that should never be done to anybody.
Shoshana saw a similar reaction with her husband, as soon as he was told he had MS. After his diagnosis, they started their family and had two children.
Most caregivers either had no children or their children had already grown up when they started caring.
In 1990, I was diagnosed with Multiple Sclerosis and was completely devastated. I felt it had ruined my life and stolen my life from me and [I] was very disabled for a year with grief and with the exacerbation that I was having.
So my father passed away about 16 years ago, and my mother was still living in her home.
And my husband had various testing and things. They said the lungs were clear and there didn’t seem to be any problems so you should go to the heart specialist. It took many months to get to the heart specialist, and we finally got there. He said, “It’s not your heart; your heart is fine. There’s no problem at all.” So we really didn’t know where to go.
Marc, who started as a paid caregiver for the son of an elderly couple, said, “ It happens fast. As the years go by, it becomes friendship, a strong friendship. And he is someone that inspires me a lot; I would have difficulties to go on without this person.” Marc now lives together with his wife and the friend he cares for in an apartment. Rhyannan started caring for the son of a deceased friend because she knew that there was no family around to care for him.
Well, I met my husband 12 years ago. We went on a blind date. We had met on the internet and, at that time, I was living in [a city in BC]. He asked me out on a date, so I was going to go out for supper with him. He drove all the way to take me out, and he had never mentioned that he had Parkinson’s. He walked in my door with posies and he was going to give me a kiss, but I wouldn’t let him.
When I first started being a caregiver well, I met my husband, Luke, in 2004. We met online actually, and then kind of courted each other, so to speak, back and forth in writing for quite a while before we met in person. Actually at that time—we always make a joke because at that time I had blue hair that I had done for a fundraiser, and Luke uses a power wheelchair. He has muscular dystrophy.
Caring at a young age
Some caregivers were younger than 18 years old when they became caregivers. We interviewed 5 people who were or had been “youth caregivers". Snoopey is a young caregiver and has cared for her mother for many years. In addition to this big responsibility, she has her own personal challenges: “As far as I know, I’m on the borderline of being mentally retarded. I was tested a few years ago and they said that upstairs is a 12-year-old—I have a mind of a 12-year-old—and that I can never live by myself.”
It started when I was 13. My mom came in my room and said, sat me down and said, “I have something to tell you.” She was actually originally diagnosed with Lou Gehrig’s disease—with ALS—so I was told that she had ALS and that she would probably die within the next few years. And then I’m not sure exactly when they discovered that she didn’t have ALS, [but] she actually had Multiple Sclerosis.
From a pretty early age of four and a half, I’ve lived and been surrounded in an environment where family caregiving is just something that was always normal. So I guess I started as a caregiver when I was five, and by that I mean the experience of watching family deal with a severe brain injury was something that has always been around me.
Caring at a distance
Some caregivers helped to look after someone who lived far away. It became a challenge to know exactly what was happening and caregivers often felt more comfortable about the situation when they visited, sometimes staying for longer periods of time.
So I got a phone call from my brother in [city in the US] and he said, “I’m flying out to a small town, […] near [city in AB]. Dad has had a heart attack,” or something to that nature. Now, I had thought that dad had had a heart attack a few years back, probably 10 or 15 more years back. So I thought, “Hmm, okay this is maybe a second one.
Publication date: October 2013