I started caring for my grandmother in summer 2020. Before she moved to Colorado, she lived in a townhouse in Michigan with minimal access to affordable healthcare. She was spending most of her days in bed due to the physical pain, limited mobility and fatigue brought on by her Multiple Sclerosis.
It was a completely unlivable situation, but my grandmother still could not find it within herself to ask for help. The shame of growing old and the social stigma that comes with being disabled were huge factors in her resoluteness to stay put and keep doing whatever she could until denying her disability was no longer a viable option.
Eventually, my mom convinced her to fly to Colorado. It was a difficult trip that involved lots of preparation due to the COVID-19 pandemic, but my grandmother made it to our home in June 2020.
We had a stair lift installed and found ways to help her do the things she couldn’t do when living alone, like showering regularly and preparing three meals a day. Before she moved in with our family, I was never very close to my grandmother because she lived so far away. This made my new relationship with her difficult.
On the one hand, I understood the traumatic, debilitating living situation she had just escaped would have lasting impacts on her mental and physical health. It wasn’t easy gaining her trust, and convincing her to let me help her with the things she was too embarrassed to have me do was challenging.
Today, I still feel a barrier in my relationship with her, as being both her grandchild and her caretaker defies the cultural norms she grew up with — that most American adults grew up with, in fact.
For me, taking care of my grandmother is not merely about familial loyalty. I think people should have the choice to support who they want to support, and that the simple fact they’re related to someone who needs help shouldn’t take that choice away.
With that being said, I don’t consider the caring I do for my grandmother as some sort of holy sacrifice. Without me, I understand that her situation would be a lot less comfortable and secure — but the sacrifices I make to take care of her look different than others might perceive from the outside looking in.
When it comes to caretaking, I believe the hardship of taking on the responsibilities of another’s daily life is substantial. It isn’t an easy transition to make, and I think that our cultural understanding of caretaking and disability accommodation makes the transition all the more difficult and draining.
It is easy to see everything that goes into taking care of another person and feel a sense of admiration for those who actually do it. I think that it is a lot of work, and that caretakers deserve the recognition they get.
I’ll admit that some days, I do feel frustrated by the sacrifices I have to make as a caretaker. It is hard not to react poorly when I am overwhelmed with schoolwork, but I still have to get my grandmother in her wheelchair, lifting her up using a Hoyer lift and repositioning her on the seat until she’s finally comfortable — and it’s OK to have days like that where the little things get to you.
With that being said, however, I do think that people project a sense of unwillingness in their praise of caretakers because they would never want to be in that situation.
That is, they would never want to be put in a position where they have to take care of a disabled person when they themselves are able-bodied and have the privilege of ignoring all of the limitations that come with being disabled, and the factors caretakers have to take into consideration when navigating the ins and outs of another person’s day-to-day existence. I don’t think that this privilege is something to be ashamed of; I just think it is something to be aware of.
It also isn’t helpful to place responsibility solely on the individual when it comes to “unlearning” the individualist mindset — there is a reason we think about caretaking and disability accommodation in the way that we do.
Is caretaking a holy sacrifice because able-bodied people shouldn’t “have to” take on the daily tasks of those with disabilities, or is it a sacrifice because we live in a country systemically rooted against the promotion and wellbeing of disabled persons, making caretaking a difficult practice to learn and adapt to?
If my grandmother hadn’t moved to Colorado, she would have never sought help. She was and continues to be ashamed of her disease, and that should really say something about the value we put on able-bodied lives, and the ability to take care of and act on our own behalf.
It is such an individualist, capitalist mindset to have — and if anything could be said of the time I have spent as my grandmother’s caretaker, it would be that it has taught me the importance of giving oneself to others, especially in a country that promotes selfishness and self-interest above all else.
Photo courtesy of gherry.com.