For many handicap folks like me, the Elephant in the room is Family Caregivers. And, as in my case, teaching me how to care for myself.
People don’t typically get married, live together, raise children, and enjoy grandkids with the idea of spending day-after-day-after-day Caregiving . . . doing for you all that stuff you can’t do for yourself PLUS teaching you about your own healthcare.
It gets harder even as you struggle to perform them yourself: putting on socks and shoes, going to the bathroom, taking a shower, trimming your toe nails, fixing meals, going to doctor appointments.
After nearly two years of Transverse Myelitis, I pretty much dress myself, except I can’t lock my knees. As a result, I can’t pull my pants up very well, plus the whole process takes 5-10 times longer.
And, please remember, Family Caregiving isn’t just all the physical things: it’s just as much the mental and emotional well-being. Nothing can piss me off today like a shoe that refuses to sit still as I lean over from my wheelchair and start pushing in my toes.
So this is a salute to my Family Caregivers!
Barbara, my wife, is Number One! She does so much for me, and she’s taught me so much about caring for myself. Some days are a nightmare of doc appointments and shuttling here and there. Others are quieter, more getting along. We’re like a retired couple. I’m the husband suddenly at home 24/7, only I can’t go golfing. It can be hard to escape me just to catch a breather. Thank you, my love!
My three sons have also helped out. Michael, my step-son (on the far right), has been a PT Coach, my chauffeur, and our gardening helper while looking for new employment. What do I want for him? A new job? Continue as chauffeur? It’s really hard to say on some days. He's very important to our household.
With Cory (L) and Zak (R), it’s a bit different. Cory’s here in Chicago, but he’s towards the beginning of his sales career, so he keeps my mind actively engaged in sales methods.
Zak and Perri, my daughter-in-law, live just outside San Francisco. Both are on their way upward. More importantly, they presented me with my first grandchild last year. Knollsy Bear’s become the absolute delight of my life. We try and Skype every Sunday, at least. For everything that transverse myelitis may have taken from me, he’s brought far more back.
Funny story about his birthday. I’d been in the hospital for a week in mid-May 2017. While treating my infection, the docs discovered I was overdo for a Colonoscopy. They were concerned also about possible internal bleeding, so they decided to do a combo Colonoscopy/ Endoscopy. The first was clear, the second not so much. They needed to biopsy what looked like cancer. Once finished, I waited for results, plus the new guy was do soon.
June 30th split my gut: I received an early call from Zak. They were heading to the hospital, but it could be a false alert. Texts kept coming in. At 5:15 that afternoon, Dr Ekland called – Esophageal Cancer was confirmed. An hour or so later, Zak texted me: “Dad, you’re a Grandfather. Knolls Clayton Garner was alive and well. We kept the cancer secret for a week to avoid spoiling the party.
In 1994, I moved to Lake Bluff, IL. One first thing to do was find a person for my hair and beard trims. I walked in Fred's Barbershop and found Pam. We've been together ever since. In fact, during my stays in both the hospital and two Rehab facilities, Pam come to me on her own time to keep me in shape. Looking into a mirror, I could smile not cry. Incredible care!
Advocate Lutheran General offers free transportation to Outpatient appointments. I love it for two reasons: it takes the pressure off my wife, my primary Caregiver; and Mr. H, Howard Jensen. He's one of many drivers but we always have intriguing chats . . . and he really cares about the people he serves.
With my TM, bladder infections that get out of hand will end up sending Antibodies out to attack my spine - VERY BAD. So, I have a Super Pubic Cathetar. Sara changes my tube each month and always keeps an eye on my bacterial colonization,
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