The role of becoming a caregiver will alter your life. Most in our group tackle this task with laser focus. There are no second thoughts or questions. Someone we love- spouse, parent, or child is depending on us and we will not fail them. We become the advocates for their healthcare, educating doctors about their rare disease or chronic condition. We help with paperwork, transportation, medication, and everyday care.
Balancing life as a caregiver
I took part in a rare disease caregivers survey last year and I was slightly taken aback by one of the questions concerning “burden of care”. Never once had I considered what I do on a daily basis as a burden. Gary and I have been together through everything for the majority of our lives. If our roles were reversed he wouldn’t have hesitated. We’re lucky because some in our community don’t have this support. 69% of the surveyed caregivers felt they had no choice other than to take on their role. That’s a harsh statistic.
If you’ve followed livingwithss.com from the beginning, you may remember an earlier story when Gary was first diagnosed. Five years ago I had signed up to run my first ever 5k. While I went to sign-in, he decided this might be his only chance to join me in a race, so he jumped in. No training or practice, just my advice to run a few minutes, walk a minute, then run again.
He beat my time by a good six minutes.
This ended up the only race Gary would run. It was April of 2014, and even though Gary was still very busy working he was always there, supporting my turtilian (turtilian-yes, I just made that word up) running efforts. I kept running, but Gary was eventually forced to stop working. Stop driving. He lost his sense of smell and with it went his ability to taste anything but spicy, salty, or sweet. Healthy eating was pushed aside for ice cream stops, milkshakes, and french fries. I told myself I’ll run later. Running became walking. It’s hard to watch someone you love fight off depression. Walking became sitting.
The rollercoaster ride of your life
As a primary caregiver you need to be careful because sadness and anger can be contagious. Feeling helpless, stress eating, internalized worries- let’s be honest, it takes a toll. Gary has severe sensorineural hearing loss. Conversations often end in my trying to lower my voice, change a word, finally I get frustrated and loud. Why are you yelling at me? I know it’s not his fault he can’t understand what I’m saying but after repeating the punchline of a joke for the sixth time it’s just not really that funny anymore.
Feeling isolated isn’t fun so yeah, you should feel bad, right?
As caregivers we need to make time to care for ourselves both mentally and physically. Our superficial siderosis community has a wonderful caregiver chat group , Friends of Superficial Siderosis on Facebook sponsored by The Silent Bleed. Moderated by Janice Toovey, mother of our SS friend Paul Toovey, it offers a private group setting to ask questions, share a conversation, or just unload your frustrations for a minute. If you’re a caregiver for any rare disease or chronic illness patient please find a support network. The Caregivers Network has a great caregiver focused website, https://caregiveraction.org/.
I made a conscious decision this past September to pass on the sugar and fatty foods and return to healthier eating. I started walking on the treadmill and in December I got back to running. To complete the circle I’ve signed up for the same 5k race I started with five years ago. I’m feeling really good these days so I hope if you’re a fellow caregiver you can find just one small step for yourself.
FYI: Beware of turtles running