Going From Caretaken To Caregiver
Last updated: November 2023
Being taken care of. It’s part and parcel of living with blood cancer.
Cancer requies a support network
Whether it's family, friends, home health aides, or even the chemo place medical staff, cancer almost always requires a support network, and wherever you get it from, it’s an integral part of treatment.
It is difficult for those of us who get taken care of to understand what it’s like to do the caring, but recently I’ve flipped-flopped roles and now not only am I a caretakee, but I now am taking care of someone else.
My mother the caretaker
All my life, including up to the most recent bout with lymphoma, one person has been mainly responsible for being my partner in crime, my rock to lean on, and my caregiver. That role fell to my mother when I was diagnosed with rheumatoid arthritis at nine years old, and it continued right on when I was diagnosed with lymphoma several years ago. Even though I was married at the time, my now ex-wife just could not handle everything that came with the diagnosis, so again, my mom had to step up. Needless to say, that marriage didn’t last much past the day I got home from the hospital, but that’s another article.
Fast forward to a few months ago, with my lymphoma under control and my RA doing pretty well, and things seem to be chugging along fine. As usually happens, though, when everything seems to be on track, the bottom fell out and our house was blackened by COVID over the holiday season.
It was a grueling two weeks but eventually, we beat back the coronavirus onslaught and life began to get back to normal. Or so it seemed.
Roles now reversed
Unfortunately whatever mechanism in the body gets turned on by COVID started working overtime and the medical issues started to pile up. Memory problems, blood pressure issues, swelling - the list goes on and on and suddenly I found myself the caregiver for someone who had taken care of me my entire life.
Caretaking might be more stressful
Those of us who rely on caregivers always say we wonder what it’s like to be on the other side of the equation, well, here I was suddenly thrust into that position and it came on fast and furious.
Within a month or two I was taking care of most of the day-to-day minutiae, all of the doctors' appointments and testing (of which there was now a never-ending stream), and even more private things that she could no longer take care of with her usual conscientiousness and thoroughness. I got to view how the other half lives and I have to say - it’s almost more stressful than living with the actual illnesses.
I never realized just how much emotional energy went into being a caregiver. I mean, I knew it wasn’t a pleasure cruise, but the stress of the constant requests, questions, and issues that need remedying builds up fast.
ow, I know myself fairly well and I can say without reservation that patience is not one of my strong suits. I know it, my ex knows it, and my current partner knows it, so it takes all my mental energy not to get easily frustrated when taking care of my mother, but I know it is not her fault.
The thing that keeps playing over and over in my mind, though, is how she never got angry, frustrated, or even annoyed when I made all my requests to her during my bout with lymphoma.
I mean I even called her once at 1 am and had her drive to the hospital to help me when no one else would because my now ex-wife wasn’t picking up the phone. She showed up without an ounce of animosity - something I’m finding it very difficult to do myself and I haven’t been asked to do anything as obnoxious as a 1 am hospital visit.
A new appreciation for caretakers
Let me make this as clear as possible: caregiving is one of the most mentally and physically demanding things I’ve ever had to do! Seriously! It’s right up there with some of the more difficult issues of my long life with chronic illness and cancer!
I have such a new appreciation of the caregivers in our lives and how much they have to sacrifice while, at the same time, stifling any inclination to get upset at something that they know isn’t the fault of their ward.
Trying not to fail the test
I'll tell you right now I’ve already failed that test myself. Multiple times. Even though I know it’s not her fault and that she is doing the best she can, I still get frustrated and find myself acting annoyed in front of her! What a jerk I am!! Seriously I feel awful after the fact and then I promise I won’t do it again and then after three more texts, knocks at my door, or requests for help, there I am again on the brink of getting frustrated and upset!
How did she do it for thirty-plus years without ever showing a sliver of frustration, exhaustion, or annoyance? It was an amazing show of self-control - a feat that I now have a much greater appreciation for and one I am finding it almost impossible to duplicate!
Our lives would be completely different without our caregivers, and maybe we take them for granted at times. Actually, no maybe about it - we do, but now that I’m on the other side I will never do that again, and I urge you to find your caregivers and just say “thanks for all you do,” as soon as you can! Talk soon.
How do you feel about your support system?