Saturday, 9 April 2016


I've heard a number of stories of marriages which have failed under the strain of ALS, of caregivers simply walking away from PALS, of people left on the doorsteps of hospitals or care homes. I know of several marriages which have been torn apart by the strain and difficulty of ALS. I also know of those which have grown stronger, as couples have come together to live with the struggles of this disease.

It's easy to see how it happens. Last night I was having a particularly difficult time getting to and from the bathroom in Mom and Ray's apartment. This bathroom has been a challenge for me ever since going into the wheelchair. As I have gotten worse, things have become increasingly difficult. Yesterday was a kind of a crossing point. I couldn't get off the toilet without substantial help including the use of the transfer board. Then we couldn't get the transfer board out from underneath my sticking skin. Moving down the hallway was almost impossible. The whole process completely exhausted and frustrated me.

Katherine and I worked together on this. While I will, at moments, get snappy and churlish, I try my best to keep it under control, to keep reminding myself of how much help she gives me. Last night, I was pushed to my very edge to keep myself in check. I did, mostly. So did she. Trust me, on occasion this gets to her too. After a great deal of work, we managed to get me into the bedroom where I could do an equally difficult transfer onto the bed so I could get dressed.

As I was getting into the bedroom, through a door too narrow and a room too small, my Mom expressed dismay and asked why it was so hard "this time". I snapped back, "This is a progressive disease, Mom. It's progressed." Ray said "You did fine yesterday." Again I snapped back, "It was just as hard yesterday. I just didn't say anything about it."

I apologized for my words and tone almost immediately, but unfortunately words once said cannot be unsaid, nor the tone softened or repealed. I've apologized again, and Ray has assured me it had no impact. But still, over time, I can see how repeated snaps of temper like that could become too much for any relationship.

This is a horrible, frustrating, debilitating, aggravating disease. No matter how much you try, it will try you more. No matter how hard you fight, it will keep on coming. It's easy to see how it destroys my life. It's just as easy to see how it can destroy relationships, especially the closest ones, as those who were once lovers become caregivers, and on occasion, targets.


  1. I'm sorry that our unexpected arrival in the afternoon helped put this kind of exhaustion into you :( I am still grateful that we were able to join you guys for supper!

    1. It wasn't you, Mary. Your visit was the highlight of my day, and well worth any effort on my part. It's that damned bathroom and hallway, plus the carpeting.

      We loved seeing you. We hope you can come visit in Calgary soon.