The life of a caregiver is a challenging yet rewarding journey. Someone who is all too familiar with this is Jackie Katan from Edmonton, Alberta who cares for her husband, Darrell. He suffers from Multiple Sclerosis, an illness that was brought on suddenly and has progressed rapidly since his diagnosis.
Five years ago, my husband was diagnosed with an extremely progressive form of MS,” says Jackie. “I’ve got to say, I’m not crying now, but the first three months of his diagnosis I drove home every day thinking ‘What’s going on, why me?’.
Jackie, a Fairness Review Officer with the provincial government, already had some experience in caregiving before her husband was diagnosed.
“I became a part time caregiver for my elderly parents — my brother and I — approximately 10 to 12 years ago,” she says. “We stepped in because we knew that they needed help. They live in rural Alberta, and they weren’t willing to go and ask for help from Alberta Health Services for things like physiotherapy or occupational therapists.”
Her parents are currently in long-term care where she visits them as often as she can to provide anything they might need. Since her parents have settled into their care facility, Jackie has felt more at peace knowing they are being taken care of when her or her brother aren’t able to drive out to see them. Even though she is there for them as often as she can be, natural guilt often sets in when she isn’t available to care for them more regularly.
This is a feeling that many caregivers experience when they care for multiple people at once.
“My husband’s health started to deteriorate even more and I just felt like I was being pulled in way too many directions,” Jackie says. “Knowing that mom and dad are in a facility and getting more attention now than they had when they were living on a farm, and that they are being looked after 24/7 where there are activities, I felt better. But there is a lot of guilt with me not going back and forth even though my husband’s ill.”
Because of Darrell’s rapidly progressing MS, their lives have been shifting to meet the new-found challenges that have come along with his illness.
“My husband’s health has deteriorated to the point where he went from walking 12 kilometers a day at work, to, within three months, not being able to work at all,” says Jackie. “He went from using a walking stick to a walker full-time, and it takes him over six minutes to walk 20 metres with his walker, and when we go out, he uses a scooter.”
Jackie and her husband moved from their long-time home in Bruderheim, Alberta to Edmonton shortly after his diagnosis in order to have a more accessible living situation. Being so close to medical help and family and friends has brought a sense of security to Jackie who isn’t able to be with Darrell during the hours she is at work.
Darrell, who worked for many years contractually as an Occupational Health and Safety Advisor with different companies, is no longer able to work due to his illness. Because of this, Jackie continues to work a full-time position to help support them and make sure they have what they need financially.
“My husband had different careers over his life, he’s only 53, but the last ten or twelve years he was a contractor where he didn’t have access to long-term benefits through work. His income is only Canada Pension Plan disability, and that being said, it’s better than nothing. I don’t have the luxury of being able to work part-time, because I’m it,” she says. “Before his illness, I was really independent. I was working full-time, our kids were finishing university and starting their lives, and I was really focusing on my career doing 12 or 13 hours a day.”
Though she can’t be with him at all times, Jackie says her husband uses an iPhone and they are in constant contact via text messaging. Darrell also wears a fall device so that if he is to fall or need assistance when no one is around, help will be on the way.
They’ve looked into home care, but Jackie notes that the options provided don’t work well with their current situation. However, they have been starting to be proactive about the possibility of assisted living in the future.
“It got to a point in my head about two months ago where I thought I don’t know how much longer we can do this, and if we can’t get some sort of help, then I just don’t know,” she says. “Actually, last week he shared with me — and I never brought this up — that if things are going to continue the way they were going a month ago that we should have been looking at assisted living. So, that’s the next step for us. To be proactive.”
Becoming a caregiver rather unexpectedly has shown Jackie that there are things about the role that she didn’t understand or know before experiencing it herself.
“I learned how overwhelming caregiving can be. Some days I feel great, and some days I have to take it one day at a time. We can’t plan ahead because things are so unpredictable, and I didn’t know that going into this,” says Jackie. “There’s sometimes an overwhelming feeling of, ‘I don’t know how I’m going to get through the next day.’”
Despite the emotional and physical toll caregiving takes on Jackie’s day to day life, she still finds time to be with her close-knit friend group, who she says are some of her biggest supporters along with her brother, his family and her son.
“I try not to inundate them with my day-to-day stuff, but they are encouraging, they help me get out, and they are the ones that I exercise with. I’m really lucky that way,” she says. “Our son lives here in Edmonton. He’s my support. He’s married, and he helps me do things if I ask, and he knows that I’m independent and that mom has control of this. But he also realizes when it’s overwhelming for me and when it’s too much.”
In order to find extra support resources, Jackie has become involved with the MS Society and Caregivers Alberta to get more information and to reach out to others who are going through similar experiences as she is.
“It’s forced me to slow down. We’ve always been involved with different communities, and so instead of craziness at work, I’ve been volunteering with the MS Society,” she says. “I’d like to get more involved with Caregivers Alberta, and I’d like to create or become part of a support coffee group of caregivers that have similar background and situations that I do. I want to talk with others regardless of what their partners or spouse’s illnesses are.”
Because Jackie has been a caregiver for several years now, her personal journey has allowed her to gain valuable insight into what others might expect if they are just getting started with caregiving, or who may need some encouragement to get through the journey ahead.
“Be involved. Try to be as involved as you can. Be there not just to hear, but to listen. Try to take an active role if you can,” she says. “Don’t be afraid to reach out to Caregivers Alberta or to other groups to ask for help. I think a lot of people are afraid to ask.”