I have had the honor of being my sister’s primary careprovider for the past 3 months. My sister is a 45 years-old, has Down syndrome, is severely overweight, has a 45 degree curvature in her spine, and has numerous other medical conditions.
I have never felt so exhausted, overwhelmed and exasperated while at the same time feeling so content and fulfilled. I have the most utter, deep respect and awe for careproviders. I believe they are the true superheroes on Earth. Here are some lessons I’ve gleaned and observations I’ve experienced while being my sister’s primary and full-time careprovider:
- I did not know it was humanly possible to brush one’s teeth for a half hour. It is. On good days.
- Bodily functions and all that entails are real, constant, unpredictable, gross, and ongoing, and utterly exhausting.
- I had no idea that anyone could be stretched to the max and be pulled in so many different directions simultaneously – dealing with a broken refrigerator, and a husband’s surgery, and a ER visit for the sister, all while managing a teenager and all of her school pick-up/drop-off needs.
- She could vacillate on a dime from being my sister holding a rational, typical adult conversations to becoming childlike and vunerable needing extreme and immediate support and care.
- I realized that her demeanor directly reflected mine. The more I exhibited stress, irritability, the more she behaved the same. When I was mindful to keep my demeanor in a place of love, kindness, and serenity, she also would exhibit the same.
- Maintaining healthy personal relationships with others in your life such as a spouse, friends, colleagues, and children is demanding, challenging, and anguishing and is an underlying source of tension and angst.
- I experience unbelievable bursts of delightful, refreshing childlike innocence. She exclaimed one day, The ‘ups’ truck is here. I had no idea what she meant until I saw the brown UPS truck. I then realized when she kept saying she wanted to go to the ‘ups’ store, that is what she meant. Another time I had a long talk to her on the way to my college about how she had been mean to another student, and I needed her to do the right thing and apologize. She gave me a guilty look, pondered a moment, and exclaimed, ‘I came out here all this way for nothing!’
- I realized how much I valued and appreciated the tips and advice from other careproviders, gaining valuable tricks and wisdom as we were passing each other and the hallway and experiencing brief bursts of respite sitting together during classtime.
- Just when you think you’ve got one facet of life under control, another issue crops up at impeccably inconvenient times.
- When providing care for another human being, you enter into almost a different time dimension where everything operates at a slower pace, almost like navigating in a parallel universe.
I truly believe that careproviders are Superheroes through and through. For anyone providing direct care to someone on a constant basis, they are giving the ultimate sacrifice and for sure the best versions of themselves. For parents of children with special needs who have done this their entire lives with no end in sight, I salute you, I honor you, I thank you, I am in awe of you, and you are sincerely and truly Heroes on this Earth.