Friday, 25 August 2017

Thinking About Death

I've been thinking a lot about death the last few days. Not the theoretical possibility of death. I've been thinking about the practical aspects of my own death, things like when, where, how. You see, with ALS you actually have a lot to say about your own death, unless, of course, you get killed by something far more mundane like a heart attack or an infection.

Assume for a moment that none of the more mundane things gets to me. If I leave it to ALS, there are basically three possibilities; one is that I can lose my ability to eat or drink, another is that I will lose my ability to breath sufficiently to stay alive, the third is that I will take a more direct approach through Medical Assistance In Dying or perhaps something of my own concoction.

Losing my ability to eat or drink will essentially mean starving to death or dying of thirst. Neither of these is a particularly pleasant way to die. Starving to death would likely take the better part of a month. It would be a painful, discomforting process, leaving me to need some sort of medication for relief. Dying of thrist is a much quicker affair; three or four days should do it. Once again it will be painful, leaving me to need some sort of medication for comfort.

Both of those situations could be deferred through the use of a feeding tube. My meals would have to be mixed up in a blend and injected through a tube directly into my stomach. Never again would I enjoy the taste of a well-made grilled cheese sandwich or a rare steak.I would be alive, such as it is, without even again enjoying a glass of wine or scotch. On the plus side, my medical marijuana products have little up front taste; they could go right into my stomach, ready for quick action.

The pulmonologist at the ALS clinic is fairly sure that I am going to die in my sleep from respiratory failure. That assumes, of course, that the whole eating and drinking thing continues while my respiratory system declines. In all ways, this would be the nicest death possible. It would take no planning on my part. It would happen without notice or warning, at least no special notice or warning. We would all know it was coming. Just the arrival date would be a surprise. If I had my "druthers", this is how I would like to go, in my sleep, like my grandfather, not screaming for dear life as the car went off the cliff, like his passengers. Something calm, something peaceful, something relatively unplanned.

Unfortunately I don't think it's going to happen that way. I think there will come a day when my arms have failed me completely, even though my respiration and quite likely even my ability to eat will be functional. I will no longer be able to pick up the food I so desparately want to eat, no longer able to hold that wine or scotch glass. Someone will have to prepare my food and drink, cut up meat on my plate, choose what they think I should be eating. I will be at the mercy of a care-giver, or worse, a well meaning friend or family member who thinks eating healthy still matters in the end stages of ALS.

When that happens, when my arms completely fail me, that's when the most difficult option for death comes into play. I will have to contact the MAID team, or have someone make the contact for me. I will have to go through the interview process to see if I am sane enough to want my life to end. Then, in the greatest cruelty of all, I will have to pick a date which will be the last day of my life.

I will have to consider that date carefully, not wanting it to conflict with other emotionally important dates for my friends and family. It won't be my birthday; that's long gone for this year and I don't expect to make it to next year. It can't be one of my children's birthdays or other special days. It can't even be my ex-wife's birthday; that would still be cruel to my children. Or would it be? They wouldn't be able to celebrate their mother's birthday without thinking of me as well.

The day would have to be one where death is no surprise, for example in January, after the Christmas season. It would have to be a date meaningless in all other fashion, beyond being the date of my death. Once I have that date, I have to make an appointment to die, an appointment with the MAID team. I will know that date. I doubt that I will share it, but who knows for sure. I don't want to make a big deal of it. It's the living that matters, not the dying.

After all of this, I still have to answer other questions, like where I will die and if I want anyone at all with me. But more on that some other time.


  1. I think about death and I'm a normal somewhat healthy 68-year-old. What an extra heavy burden to have .

  2. It's so interesting to me that you've had the same thoughts about trying to arrange it so that it does not coincide with people's birthdays and so forth.. wonderful post, very meaningful to me