Wednesday, 6 February 2013


I am tired. What do you do when the least little thing tires you out? What do I do when the mere act of putting on shoes, or socks, or pants is enough to cause you to need to stop and rest. The blithe answer is simply to stop and rest. I wish is was that simple.

As I write this blog, an advance effort I might add, I have a load of laundry in the washing machine. It took all my efforts to get the laundry collected and down to the machine. Next comes a load of linens. My problem is that I need help with this but I am loathe to ask my son for help. He is busy doing his own thing. He wants to "do it later". Then I have to ask him again and he gets annoyed, mostly with himself.

Don't misunderstand. I am deeply appreciative of my son's help. He has given up his life to come to Calgary and care for me. He left friends, family, work and a whole community behind. I am dependent on him now, or at least partly so. Nonetheless I must still ask for his help.

Even the act of asking for help is exhausting. I have to ask, which means I can't get things done on my schedule, something I have always been able to do. I am forced to wait, and be patient, and accept the reality that I may have to live with mess, or dirty laundry, or a full dishwasher simply because I am unable to do the task without exhausting myself. Who do I call? How do I ask for help when I feel diminished by the very act of doing so?

It must be hard to be a caregiver to someone like me, someone who expects things to be done on my schedule and when I want them done. I has to be frustrating for someone like my son, who has his own life and his own schedule, to put that aside based on the demands on a failing invalid. I can appreciate his challenges. I can't expect him to read my mind yet I want him to anticipate some of this so I don't have to ask. I want to be a little less dependent and a little less tired.

Let's face it; none of us is really good at walking a mile in the other guy's shoes. We, as human creatures, are all self-centered. It's a basic survival skill. We all think of things from our own point of view first, even those who proclaim otherwise. This is simple human nature and it's why religions throughout history have lectured and directed and instructed us in the art of putting this basic state aside. It's hard work to do.

Depending on others is exhausting. Doing stuff myself is exhausting. Dealing with my own needs is exhausting; understanding the needs of others is equally so. I suspect that this whole process is what wears out those afflicted with ALS. Then, with all this exhaustion, I need to find the strength to carry on, to uphold and uplift those around me, to make them feel not so bad about this dreaded disease.

I just got up and already I'm tired. I need a nap.


  1. What is you "ALS score"?

  2. My Functional Rating Score is 36. My Forced Ventilation Score is 90%.

  3. Dear Rick I wish I lived close to you so Ray and I could help with thos tasks.
    Cal the ALS society for help with your household jpbs. Or is that not practical.
    love you

  4. It's more emotional than physical. Ricky helps a lot with the household stuff. The ALS Society can't help in many cases, and in many cases if I rest I can do the things that need doing. It was just this morning; I was more tired than usual.