Lessons relearned by accident

I stood over Jennifer and shouted the foulest one-syllable obscenity in the book as she writhed in pain on the bathroom floor.
This never should have happened on my watch as her caregiver.
And as I stewed how I was going to get my loving wife up off the floor, all she kept saying was, “I’m so sorry! I’m so sorry! I’m so sorry!”
Me too, Jennifer. Me too.
I was angry at multiple sclerosis and at myself because I had let my guard down. She was apologizing because she knew I was blaming myself for this unfortunate incident and that I was going to have to somehow get her back into her power wheelchair.
This specific moment and reality in our life together actually started several months earlier when we noticed the sponginess of our bathroom floor. The seal along the threshold of the roll-in shower had started leaking water and was damaging the floor underneath the linoleum.
Looking into our options to fix the floor, we assessed other areas in the bathroom we needed to repair and improve. In addition to replacing an upright linen closet that our cat, Cooper, and Jennifer’s power wheelchair, Grape Ape, had managed to damage, there was one major modification we had to make.
Jennifer had always wanted to spit into the sink.
A standard vanity made it impossible for Jennifer to roll Grape Ape up so her knees were under the sink and she could use it just like everybody else. With a new roll-under sink, Jennifer could more easily wash her hands. Use the towels. Grab a Q-tip. Brush her teeth. Spit in the sink.
Indeed, how much so many of us take for granted.
With the vision and construction skills of our friend Cliff, our bathroom was quickly making our accessible dream a reality. Ah, yes. The realities of life with multiple sclerosis. More specifically: life between two people who have MS.
After staying with Jennifer’s parents for a few days while Cliff overhauled what likely is the most important room in our house, we returned home to a nearly completed bathroom.
An industrial-strength fan was strategically positioned in the room’s center to turbo-dry the grout in the now leak-proof roll-in shower. Looking to use the bathroom, the fan’s noisy whirr muffled our voices as I attempted to help Jennifer transfer to the toilet.
It was a routine activity we complete several times each day. As we always do, she put her arms around my neck and I straddled her right leg, slightly squatted, wrapped my arms around her back and locked my hands together. She counted, “1, 2, 3.” I helped her up, and there Jennifer stood holding the grab bar to the right of the toilet as I went around to guide her in the transfer.
I could tell something seemed a little off in her stance. So I asked her, “You got it?”
She said something, but I couldn’t quite make it out. Again, the fan’s noisy whirr muffled our voices.
“You got it?”
She said something I still couldn’t understand, and I then watched in helpless horror as her legs melted and she crashed knees-first onto our newly tiled bathroom floor.
This never should have happened on my watch as her caregiver.
But it did, and it painfully reminded us of how important clear communication is between people with MS and their caregivers, families and friends.
In this instance, we should have turned off the fan. Had we turned it off to get rid of the noise, I would have understood Jennifer when she was telling me that her knees were not locked and she wasn’t ready for me to let her go to stand on her own.
As Jennifer and I have discovered through our nearly seven years of marriage, communication goes beyond controlling the noise in the room. Among other qualities, we’ve found communication also includes honesty, empathy, listening and patience – HELP.
Honesty. Tell each other the truth (being mindful to not hurt each other’s feelings) so you never spend time second-guessing what the other person is thinking or needing.
Empathy. Always put yourself in the other person’s shoes and look at the situation from that person’s perspective.
Listening. Open up your ears to hear and understand what your caregiver or loved one is saying and ask questions to ensure you understand and you both are moving forward together.
Patience. Take the time with each other to be honest, empathetic and listen.
We are both on the same team and are doing the best we each can do to ensure we beat this disease together.
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The National MS Society