how i care for osteoarthritis: ‘it’s disappointing at the time, but there’s not anger'
an important part of being a caregiver is that you recognize that their illness is not their fault.
6 minute read
france, left, and rick enjoy biking together as a way to stay active and healthy in the face of osteoarthritis.
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there are times when rick livingstone has come home at the end of the day and the house is dark and silent. he knows that france carbonneau, his life partner, has hit a rough patch.
“she’s tired, she’s exhausted, she has a migraine,” says rick, who knows the symptoms of her illnesses inside-out, and how they can impact their life and plans without warning. the burlington, ont. couple has been together 31 years, so there’s a deep understanding and compassion they share through the ups and downs.
rick, 60, is a senior wealth advisor for rbc dominion securities and dedicated rotarian (his club was the first to host the ribfest mega fundraiser for local charities, he notes proudly), and france, 56, is a retired process specialist for it projects and active volunteer in several roles.
life is full, despite serious health setbacks.
the unpredictability of osteoarthritis
france was diagnosed about 20 years ago with osteoarthritis, the most common form of arthritis. it’s a progressive disease of the whole joint that leads to the breakdown of joint cartilage and the underlying bone. while it’s often considered an older person’s disease because prevalence increases with age, nearly one-third of patients say they were diagnosed before age 45, according to the national charity arthritis society canada.
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about one in every seven canadian adults has osteoarthritis. for france, osteoarthritis started in her feet, so she always wears orthotics to help support her feet and mobility. now she has developed the pain and stiffness of osteoarthritis in her hip.
to make things more complicated, she was also diagnosed with fibromyalgia around the same time as her osteoarthritis, so she manages the joint degeneration along with the full-body musculoskeletal pain of fibromyalgia that brings on fatigue and troubles with sleep, memory, headaches and mood.
“illness is so unpredictable, it took me a little while to find my groove with the osteoarthritis and the fibromyalgia,” rick says. “you could plan to do something tomorrow and it’s cancelled. i get frustrated, especially when you’re looking forward to something and or you go somewhere and halfway there you’ve got to turn around and come back because now she can’t do it. it’s disappointing at the time, but there’s not anger.”
perspective as a patient and caregiver
an important part of being a caregiver is that you recognize that their illness is not their fault.
“like if they were dying of cancer, it’s not their fault. you wouldn’t be angry with them.”
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far from it – rick considers himself a happy person with unlimited potential to look on the bright side. he says he lucked out with the “happy gene,” but it’s also rooted in his firsthand experience with debilitating disease. when he was just 20 years old, he was given a 50-50 chance of surviving his diagnosis of granulomatosis with polyangiitis, or gpa, an auto-immune disorder grouped under arthritis where your body’s immune system attacks your blood vessels and other tissues. with vague symptoms, it’s still difficult to diagnose and very little was known about it at the time.
“i spent six weeks in the hospital and lost 30 pounds. but then i went nine years, then 20 years and then five years and another five years in remission. so i’m ok and it’s treated with drugs, but every time i come out of remission, i seem to lose something,” he explains. he has little grip strength and difficulty with balance, so he’s had to give up his twice weekly hockey. he still coaches soccer for his daughter’s team and he and france like to bike and hike to enjoy the outdoors. the two love active travel adventures and even rappelled down a waterfall on a recent trip to costa rica.
“my default is happy. i think it’s easy for people to become insular and self-focused, but i honestly think my bad days aren’t anywhere near other people’s bad days. i don’t believe anyone was promised a perfect life. that would be boring.”
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and if the secret to a happy marriage is a good balance of give and take, the couple has really got that in hand. france is quick to say she steps up as caregiver when rick comes out of remission. “he becomes the number one priority,” she says. “he needs to see the rheumatologist, medications, he stops work if need be.” they consider themselves blessed that they are not at the same time dealing with financial stress and have work health coverage and funds for additional treatments.
sharing the load
also to the benefit of both partners, france is not a lie-in-bed-and-complain type of person, as rick notes. she’s extremely resourceful about how to be proactive about her health, as well as helping rick to take it easy and rest when his gpa is active.
“what saves me is exercise and one of the things that works well for both these conditions is aquafit,” she says. “so, i am in the pool three times a week working at my body without having the pounding on my joints and it’s magic. i do resistance training, cardio, stretching and yoga and all that stuff,” she says. her approach has been to reduce medication by finding other ways to relieve pain and stay strong, including diet, physiotherapy, massage and exercise. after 20 years of osteoarthritis, she has developed a regimen that works well for her and makes things a little easier on rick.
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“i do not need medication now,” france adds. “i am very organized with my exercise, my super-good diet and my regular maintenance of like physio, massage and educating myself on all the modalities that are drug-free ways to deal with pain.”
she says there’s also a lot to gain from helping others who have the same problem, giving them support and advice from her own experience. she offers peer support through arthritis society canada, encouraging patients who call in to find lifestyle habits that work for them. “educate yourselves and understand that there’s a reason we always say, ‘motion is lotion.’ you’ve got to keep moving, so if you don’t want to be in pain tomorrow, you’ve got to move today. i always encourage patients to educate themselves about their condition because you do better when you know more.”
france also sits as a consumer on the society’s panel that chooses where research funds are allocated, giving her an inside look at innovations coming down the pipeline. she’s excited about artificial intelligence in drug development. ai is being used to identify molecules for drug therapy targets, promising faster drug development at less cost for pharmaceutical companies.
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“it’s a lot of trial and error but this will allow us to zero-in quickly on something that has clinical trial potential,” she says, always hopeful a cure for osteoarthritis will be found.
the importance of self-care
rick and france also speak from experience about something that can be overlooked by caregivers – self-care – and why it’s so essential.
“caregivers often forget to take care of themselves first, because you have to have energy and come from a place where you are centred and have the emotional energy to care for somebody else and to have the patience,” rick says. you can’t let yourself get exhausted and burn out.
and his thoughts on saying ‘thank you’ as part of the journey make sense, even though the gesture is not in any patient guides. it sounds like a simple thing but can get overlooked by people struggling and in pain. he’s been on both sides.
“on the care receiver side, you’ve got to say ‘thank you.’ you’ve got to acknowledge the help you’re getting, even if you’re in pain,” he says.
“france is great about thanking me for things, which i think is really important. because it’s hard to keep doing it all if you just don’t feel appreciated.”
for more information and support services for osteoarthritis, visit arthritis society canada.
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