The Ripple Effect Of Chronic Illness
Most of us will never plan on becoming full-time caregivers. However, some will tackle this role with laser focus. There are no second thoughts or questions. Someone we love, a spouse, parent, or child, depends on us, and we will not fail them. We become an advocate for healthcare, educating family and friends about their conditions We help with paperwork, transportation, medication, and routine care.
Balancing Life As A Caregiver
I took part in a rare disease caregivers survey a few years ago. I was slightly taken aback by one of the questions concerning the “burden of care.” I never once considered what I do as a burden. Gary and I have been together through everything for the greater part of our lives. If our roles were reversed, he wouldn’t have hesitated. We’re lucky because there are some in our community who don’t have any support. Yet, 69% of the surveyed caregivers felt they had no choice other than to take on their role. That’s a grim 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 was the only race Gary would ever run. It was April of 2014, and even though Gary was still working, he was always there supporting me. 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. Healthy eating was pushed aside for ice cream stops, milkshakes, and french fries. I told myself I’d run later. Running became walking. It’s hard to watch someone you love fight off depression. Walking became sitting.
The Growing Ripples
As a primary caregiver, you need to be careful because sadness and angerOverview Superficial siderosis progression may have profound... More can be contagious. Feeling helpless, stress eating, internalized worries honestly takes a toll. Gary has severe sensorineural hearing loss. Conversations often begin with lowering my voice or changing 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.
Finding Time For Yourself
As caregivers, we need to make time to care for ourselves both mentally and physically. Our Superficial Siderosis community has a lovely caregiver chat group, Friends of Superficial Siderosis, on Facebook sponsored by The Silent Bleed. Moderated by Janice Toovey, mother of our SS friend Paul, it offers a private group setting. You can ask questions, share in conversations, or just vent for a minute
If you’re a caregiver for any rare disorder or chronic illness patient, please find a support network. The Caregivers Network has a fantastic caregiver-focused site, caregiveraction.org.
I’m Janice, mother of Paul, it’s my job to care for him, no one else will, I’m tired, emotionly wrecked, and often depressed, I saw my life, as a carer reading this post, my life has changed, I’ve put on weight after sitting in doors for 4 months because of corona, I’ve very few friends, no one visits, and I can’t get any help, despite Paul now in a hospital bed downstairs, in an electric wheelchair, no hearing, stoma and catheter, On antidepressants,I go on because I love him, he’s my son…sorry for depressing post, difficult weekend.