Caregiving as a younger sibling

Posted by Reeve Staff in Daily Dose on November 29, 2018 # Caregiving

From our Fall intern Brooke:

Older siblings often help take care of the younger ones — babysitting while the parents are out, driving them to soccer practice once a driver’s license is in the picture, and maybe even changing diapers if a sizable age gap is present. This is normal. This is expected. Something more uncommon, but known well to siblings of people with disabilities, is the younger sibling helping to take care of the older one. For the purposes of full disclosure, I was not and am not my older brother’s primary caregiver; that role belongs to our mom. However, I have assisted in caregiving for much of my life.

As a young child, there was only so much I could do to help. But after years of watching our mom (who was a single mother for a time) help Chris, I learned how to help with most of the aspects of his caregiving. Mom always stressed the importance of me knowing how to do these things in the event that she wasn’t around and a caregiving situation emerged. Like any little sister would, I always liked to help Chris push uphill. And ride on the back of his wheelchair, if we’re being honest. But the first real task I remember assisting with is transferring and loading him into the car. Chris did not start transferring himself into the car until he completed the Shepherd Center day program in 2012 when he was 17 and I was 15. Until then, he needed to be lifted into the car, and I was probably around 12 when I started to help lifting him so my mom’s back wouldn’t hurt so much. Putting the wheelchair in the back was my main role, and still is when I’m with the family, starting around the same age. Luckily for me, his chairs have all been pretty lightweight. Now that he can transfer on his own, I usually just stand behind him and make sure his pants don’t fall down in the process.

Until high school, we hadn’t attended school together since elementary school (he was young for his grade, so he was three grades above me). When I was a freshman and Chris a senior, I knew his schedule and would help him get all his stuff to class if he needed it. Yes, obviously he managed to get through his first three years without me, but maybe it was just the smothering sister in me? Sue me — I was 14 and felt cool having a brother who was a senior, I guess. Now I refuse to help him unless he absolutely needs it because I want him to own the level of independence that he is capable of having. Side note: our high school’s graduation takes place on the football field with a steep ramp to the stage, so instead of having a fellow classmate push him (which seems like it would make the most sense), I was instead asked and wore a gown with no cap to blend in without impersonating a graduate. That turned out to be a really cool moment: getting to sit right next to him with his class during graduation, pushing him across the stage, and watching him throw his cap in the air up-close.

Other parts of helping with caregiving are not as glamorous, though. With his permission—in fact, at his request (because he finds it important to be transparent about life with SCI)—I’ll tell you: the bathroom stuff can be pretty gross, to be quite frank. I’m a public relations major, not a nursing major, with a weak stomach. Funny enough, though, I have a friend who is a nursing major who posted about learning how to insert a catheter...something I’d been doing with no formal training for years. But for Chris, I’ll help with it anyway. Without going into too much detail, I’ve helped with “bathroom stuff” many, many times. We laugh about it, though. How else can a sibling duo handle it? I’m also known to frustrate him by inspecting every spot I see on his skin for fear of it being a pressure sore. When I help put on his shoes, I try my best to make sure his feet aren’t in a position to develop one. The second I notice one of his eyes getting bigger, I ask him if his catheter bag is kinked because dysreflexia is always in the back of my mind. I keep a dysreflexia information card in my glovebox in case something were to happen. Thankfully, he’s never gotten serious, life-threatening dysreflexia in my presence.

Filling this caregiving role has taught me patience and attention to detail, for which I am grateful. Chris is becoming more independent as he gets older, which is so exciting. The “little helper” will always be part of me, but I’m happy to see him working toward not needing my help. Still, though, whenever I have to slam on the brakes in my car, my arm naturally goes up to keep the person next to me from falling forward, something I do with Chris since he doesn’t have full upper body control. So, friends, if I ever do that with you in the car: that’s why. It’s just my natural instinct. It’s the caregiver in me.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.