My mom was in town last week. You may remember from previous posts that my mom was diagnosed with a degenerative brain disease in October, 2015, and comes to stay with me every month to participate in an ongoing clinical trial for a new experimental drug.
It’s astonishing to think that we have been doing this for well over a year now. When we first began the clinical trial, she could walk on her own, although very unstable. She could read, or cook, or drink a glass of water without choking. Things change.
My city is currently reconstructing the Terminal 2 airport parking lot here. When my mom arrived last week, I had to park in the Terminal 1 lot and walk 20 minutes to meet her in the airport. As you know, a 20 minute walk is no joke for me. A 20 minute walk, followed by another 20 minute walk back to the car where I support a 105lb woman, is nearly impossible.
After my mom deplaned, I had a choice: have her walk the 20 minutes back to the car with me, or have her sit outside on the curb while I retrieved the car and returned to pick her up curbside. However, all seats outside the airport are benches without back support. People with PSP tend to fall backwards, and my mom has had enough bloody head wounds and concussions to prove it. So, alone on a bench isn’t an option. As we began the slow walk to my car, I second guessed my decision literally every step we took as she stumbled using the walker, and silently pleaded to Superman to not let me faint, and not let her fall. Add two women who are both fall risks and a 20 minute walk, and the result is disaster.
A better caregiver would have had a better plan.
An airport employee, an older woman with glasses perched low on her nose wearing an airport-issue navy blazer approached us in her golf cart-sized airport transport vehicle. As I carried my mom’s bag and supported her while she pushed the walker at a snail’s pace, the employee undoubtedly saw the look of panic in my eyes.
The woman slowed her cart and asked if we were going to the Terminal 1 parking lot. When I confirmed that we were, she offered to give us a ride, even though she was headed in the opposite direction to pick up supplies from the other end of the terminal, undoubtedly part of her employee duties. She helped me lift the walker in the cart, and although she was a few years older than my mom, she repeatedly referred to my mom as “kiddo”.
There were no seat belts in the cart, so as the woman pressed on the gas I held tightly to my mom. My mom insisted she was fine, but I told her I was just so happy to see her that I wanted to hug her all the way to the car. That’s part of being a caregiver – pretending you’re holding their arm to huddle close for warmth, not to support them. Or pretending you want to use the restroom together so you can gab like a bunch of young girlfriends, not because you don’t trust her to use it on her own. Sometimes caregivers are liars, in the most beautiful, merciful way.
The airport employee chatted with us as she sped through the large hall of the airport. I don’t remember what we talked about – certainly some mundane topic that she probably discusses ad nauseum with her other airport passengers. What I do remember is that she talked to my mom – even when I answered on my mom’s behalf, the woman still addressed my mom. People usually ignore her and talk to me.
When we arrived at the parking lot, the woman helped my mom out of the cart. While I removed and unfolded the walker, she whispered something to my mom. I don’t know what she said, but somehow she made my mom smile.
I haven’t managed to do that since the beginning.
As she waved goodbye and drove off, I realized I never even got her name. This woman who treated my mother like a friend, who seemed to know, without knowing why, that we needed help that morning, who in ten minutes managed to address my mom with the grace I still lack after a year and a half, will forever remain nameless to me.
Compassion is an artform, friends. I’m quickly learning I need art lessons.
Caregiving is hard. According to a recent study, caregivers end up having a shorter life expectancy than the person they care for. While that figure likely applies to caregivers who are the same age as their patient (such as spouses), the sentiment behind the statistic is the same: caregiving is life-alteringly hard.
I often say the wrong thing. Or, I get too focused on work and forget to spend quality time with her. I get frustrated when I can’t understand what she’s saying, or when she does something irresponsible and puts herself in danger. However, I have never yelled, raised my voice, or become angry with her.
I’m afraid its insightfully representative of how bad I am at this that I’m proud I haven’t yelled at my mom for having a progressive brain disease.
No one ever prepares you for the shattering reality of caring for another life. There’s no manual that warns you that you will say the same tired shit you hear from others about your illness, or that sometimes you will wonder if you aren’t just looking into a mirror and seeing yourself in 30 years, or that occasionally, just for a moment, you will forget the person behind the disease.
My mom and I have always been close. She is and has always been my favorite person in this world. So when she tells me that there are things she’s only comfortable discussing with me, the magnitude of that faith is not lost on me. So sometimes we talk – although more often than not “talking” involves me asking simple yes/no questions or monologuing – about the unfairness of illness, or unfinished dreams, or even death.
This, friends, is where I fail.
I have read countless books and websites on caregiving, watched videos, taken online courses, and attended a conference, and while they all provide great resources for the physical aspects of caring for another life, there are very few resources available on coaching or counseling a loved one through the steps of grief, or approaching the final stages of life. I just want someone to tell me what I’m supposed to say when my mother tells me she doesn’t want to die, but if this disease is going to kill her, she would rather die today.
That she has chosen me – an inarticulate, semi-unemotional, broken accomplice – is one of the greater ironies of my lifetime.
“As a body everyone is single, as a soul never.” – Herman Hesse
Smell ya later.
In my next post, we’ll discuss being both a caregiver, and a patient who has a caregiver. If you have ever been either, I’d love to hear your thoughts.