Barbara Risto, the publisher/owner of INSPIRED Senior Living has walked the path of a caregiver, multiple times. She is a testament to being thrust into caregiver roles, as so many are; and also being able to live a fulfilling life. One’s own goals and actualization don’t have to be put on hold, she avows.
More and more Canadians find themselves taking on caregiving roles. Statistics Canada painted some interesting numbers in a Portrait of Caregivers, 2012. They revealed that “over one-quarter (28%), or an estimated 8.1 million Canadians aged 15 years and older, provided care to a chronically ill, disabled or aging family member or friend in the 12 months preceding the survey. Providing care included, among other activities, driving someone to an appointment, preparing meals, helping with bathing and dressing or administering medical treatments.”
One-third of caregivers provide assistance on a daily basis, too. For some, caregiving was a large part of their life – equivalent to a full-time job. Approximately one in 10 caregivers were spending 30 or more hours a week providing some form of assistance to their ill family member or friend.
The reasons one can find themselves in a caregiving situation can be varied but most fall broadly into long-term health conditions, disability needs, or aging needs. Barbara fits the portrait profile on many levels. Most caregivers are women, 54 per cent, and they give more hours to care than men do. Men contribute more than women in one area only, outdoor tasks or home repair.
Barbara watched her own mother care for her dad for 12 years. Her father was diagnosed with Parkinson’s when Barbara was only five. Her sister, Jane, almost 10 years older than Barbara, has a disability called dystonia, a progressive movement disorder that causes muscles to contract uncontrollably. In the young, it often affects only a foot or leg. As age progresses, functionality declines and, in Jane’s situation, resulted in her becoming quadriplegic around age 40.
“My mom had her hands full with my sister, my father, and running the farm in Alberta,” recalls Barbara. The situation was exacerbated because her father chose to insulate himself from the outside world once the symptoms of the disease became obvious and this isolation extended to the rest of the family.
“It wasn’t a healthy environment for any of us, really, especially my mom. I have the utmost admiration for her, for her tenacity and ability to cope. My father attempted suicide a couple of times, and we lived in fear of him actually accomplishing it and possibly harming another family member in the process. Our household had a lot of tension until he died at age 61. I was 17.”
It all seemed “normal” at the time.
“When you’re in the middle of a family situation, you cope. Especially as a child, you don’t have the wisdom or perspective, nor the authority, to change your circumstances.” Her parents were proud, hardworking and independent. They carried on. Things changed, though, when Barbara became a young adult.
She took a job as a coordinator for a citizen’s advocacy program, helping people with disabilities integrate into the community through the creation of friendships. It was then that Barbara came to appreciate disability in a different way from her parents.
“My parents were afraid of public perception. They never took Jane to any social functions that weren’t family related. The citizen advocacy philosophy challenged me to look at the general perception about people who have disabilities and re-assess my own beliefs. Today, I take what I learned to heart. A person should be viewed as an individual, separate from their disability. When I walk with a person in a wheelchair, like my sister, I walk beside them, not behind… as any friend would walk with a friend.”
Barbara practiced what she learned in other areas. She cared for her mother the last six weeks of her life when she was dying of cancer. Soon after, Barbara arranged to have her sister moved to Victoria, so she could oversee Jane’s care, which she has done for the past 22 years. During this time, Barbara’s mother-in-law also became part of the household and Barbara’s role as caregiver expanded further as she offered support and companionship where needed.
In the midst of it all, Barbara went through some difficult times and learned some tough lessons.
About half of caregivers providing care to children and spouses reported feeling some psychological distress, for example depression or isolation. About a third had to consult with a medical professional for help. Barbara was no different.
Karen Armstrong, winner of the TED Prize in 2008 and founder of the Charter for Compassion, wrote as a corollary to the Golden Rule that you will have trouble loving others if you can’t first love yourself. It is a process every caregiver must go through, indeed bear witness to.
Barbara vividly recalls a time when her life felt like it was spinning out of control… her marriage was in trouble, she was battling to get home support and respite services, she was suffering from depression, and struggling to maintain a full-time job. Barely able to withstand the pressure of her life, she attended a session for family caregivers hosted by the Family Caregivers’ Network.
“It was the first time someone asked, ‘How are YOU doing?’ It was a turning point,” says Barbara. “I was able to take a step back and look at my situation from a different viewpoint. It was the start of me learning to look after myself. I was being tough, sucking it up, but I had no understanding of how ‘un-normal’ my life had become… again. It wasn’t an easy process, but I made some changes and life slowly got better.”
Barbara learned through this painful experience that one has to have their own full life before they can give fully of themselves to others. Work and caregiving are not easy. Her advice? You can’t give care to someone if you are emotionally and mentally frazzled. “Unhealthy situations sneak up on you,” she says. “You truly believe you are coping, until you aren’t. And then you’re in crisis. Everyone needs downtime. Use respite. Ask for help, and accept it when it’s offered. I know now that I can’t survive without some really special people in my life who care for my sister, and care about me. I live a very full life now and I make all the pieces work by being aware of what I need, taking time for myself, not being superwoman, and letting others help.”
Barbara has a special appreciation for all the experiences of her life. “I had parents who endowed me with a sense of independence and determination. I met professionals who helped me interrupt unhealthy coping patterns and provided me with tools to reshape my life in a more positive way. I’ve had the support of some special friends who’ve stepped up to support and cheer, and I’ve had the fortune to work alongside some really supportive colleagues in my professional life.”
But the most profound experience of all has been that of being witness to the love and compassion of other caregivers.
“When I see the devotion of the people who have surrounded me and my loved ones, I am deeply touched. There is a special place in my heart for those who give their lives to the care of others. I often have the sense that there are angels amongst us, in human form.”
If there’s one truth Barbara holds it is that everyone matters. And that includes her. “There is no exclusion in this universe, only inclusion. We are all one and when one suffers, we are all affected. When we don’t take care of ourselves, it impacts others.”
As honorable as it is, Barbara believes caregiving shouldn’t consume your life. “You need to take as much care of yourself as you do another person. When you find that balance, you discover there are special joys and pleasures in caregiving that deserve being shared and celebrated.”
Taking these lessons to heart has pushed Barbara in unexpected directions… like taking up motorcycling and karate as her pastimes. And renewing her love of long-distance running, a sport she enjoyed earlier in life.
“It’s important, I feel, to be engaged in activities that fuel your soul, that bring out the ‘wild’ a little. Nothing puts a smile on my face faster than putting on my bike leathers and cranking the throttle to hear that first roar of the engine. In that moment, I feel like a ‘beast’ even though I’m the sweetest thing you’ll ever encounter on two wheels.”
Barbara successfully juggles being a business owner and a caregiver. “They both contribute so much to my life,” she says. “And by adding some of my own spicy ingredients, I’ve created a life I love.”
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