Caregivers are like human assistive devices, but with feelings
Unlike mechanical or e-devices, my family caregivers weren't meant for this purpose
Written by |
As my disability from multiple sclerosis (MS) increases, so does my reliance on tools to assist me.
Some are relatively simple mechanical devices like adaptive silverware, gloves that help me straighten my fingers, and a bed rail that eases transfers. Others are a bit more complicated, like the powered wheelchair I use for locomotion and the adapted van that accommodates it. Then there are the purely electronic devices, such as my tablet and smartphone, that allow me to write this column and serve as a sort of window into a world that is in danger of becoming smaller.
They help me, but there are some drawbacks. A pat on the back from a gloved hand just isn’t the same, and neither is a one-armed embrace because the other is holding on to a bed rail. Neither is typing “LOL” at the end of an email, because my once-booming laugh has been reduced to a muffled gasp. I was never prone to it, but I can’t even raise my voice anymore, and while typing with all capital letters might get the point across, it doesn’t carry the same weight.
The people who assist me
My assistive devices are just inanimate objects that don’t have personalities of their own, so they don’t care if I get frustrated by them, or when they don’t do something exactly how I wanted it done. They serve a variety of purposes and do what they were made to do. None of that can be said about the people who assist me every day in my life with MS.
I can’t really speak about the professional, hired kind because I’ve been fortunate to have my family as my caregivers. Various family members have stepped up when needed, but it’s mostly been my wife and children, and I can assure you they do have personalities.
They care if I get frustrated, and I care if they do, too. None of us woke up this morning to MS. Although my disability has progressed rapidly, they all remember when I could walk and do all the things that they now have to do for me. I’m pretty certain that helping someone, or accepting that help graciously, is harder when you both remember how you used to do it. I have to remember that, and that just because something isn’t done my way doesn’t mean it’s being done wrong.
Also, unlike the mechanical or electronic devices that assist me, none of my family caregivers were meant for this purpose. I also know that none of them are doing it because they feel obligated. Instead, they had to rise to a challenge that shouldn’t have been theirs. We could argue that I exposed myself to many of the possible environmental triggers for MS, but I wasn’t meant for this challenge either. That none of us should have ever had to deal with this burden makes me proud of them for shouldering it anyway. And I’m proud of myself when I accept their help and ashamed of myself when I don’t, or even worse, when I get frustrated and lash out.
There is usually some sort of relationship between the caregiver and the person needing care, but in my mind, it’s much stronger when those people are family. Oddly enough, that kind of strength requires both vulnerability and trust, and unfortunately, that often means that displays of frustration can hurt more. With tools or living aids, there might have been a contract or user agreement, but with a family caregiver, it’s a much more personal understanding. Both sides have to be willing to let the other person get close enough to hurt them because they trust them not to and, while there are limits, understand and forgive them if they do.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Leave a comment
Fill in the required fields to post. Your email address will not be published.