I write to sort out my thoughts. I also have hundreds of entries that have never been posted for that very reason. This one is one that I have been dealing with but not knowing if I should write something just for me or if it should be shared. I decided on the later because of how much it is really touching my life.
My uncle has ALS. He is entering the final stages and it is ripping me apart. This week the dreaded day came where I went to visit and he did not wake up, he was not alert. I know he will be again, but the day approaches where I he might not be responsive. I have been tracking his deterioration mentally for a couple of years now with percentages. His upper extremities are at 0% now, even the side to side wiggle he used to do with his fingers is gone, his legs are now bellow 10%. His head remains the most active but even that is hard to gauge now. He seems depressed, he seems angry, he seems to finally be losing it and wants to trow himself from his bed.
To say that this is hard to watch is a understatement. The side story is the one that comes with a lesson.
I did not know that one of the big decisions with ALS is “vent or no vent”
I was aware of the whole feeding tube part, but did not realize that there are more tubes involved as well. And with no living will, things get a little trickier… OK a lot more complicated.
Let him die with dignity… and I guess that means him not knowing what he has and keeping the hope alive that he will get better.
True to my black sheep persona I was alone in team reality for 2 years. People started coming to my team little by little until there is only 2 people standing on team denial. However, one of those people is the decision maker that is pushing for extending life as long as possible.
My first big blow out came after the long hospital visit where he was outfitted with is trach and feeding tube.
Me: We need to start thinking of next steps, palliative care, I don’t want him to suffer.
Denial: Don’t even mention the word death in front of him.
Me: We cannot ignore it he is going to die.
Denial: I forbid you from even saying that word in front of him.
Me: He is not going to ever eat again, or more than likely even talk.
Denial: I have been the one dealing with those things and I will keep him alive as long as possible.
Me: That is no life, he stopped living the day he asked me what he should do. I have been dealing with the reality that he will die since that day.
… then I walked away, I felt the anger rising, I felt the rage just boiling over… I felt powerless… I cannot fight the disease, I cannot fight the person that is going to keep him “alive.”
And here is where the title of the post gets tied into all of this. Nobody knows what goes on in the middle of a relationship. You only see glimpses. Actions do speak louder than words… and I have seen a lot of actions lately, actions against a person that is almost completely paralyzed and cannot walk away anymore.
The first one came some months ago. One of the many extended family friends that stepped out to the plate to take care of my uncle at night decided to not do it anymore. It was not because he could not take the burden but because every little thing seemed to set “denial” off. “Denial” will then spend the rest of the night arguing with my immobile uncle about, money, or family, or past transgressions. I wish that was the first glimpse but some years back my uncle took a “sanity” vacation away from it all. The fact that he used to have to “sneak out” to visit family was always a clue, but from my black sheep point of view I could see how that seemed at least logical… trying to keep the party in peace.
One of my uncle’s saying resonates strongly with me… “Love does not last in an empty belly.” I used to take it as an encouragement to always be a good provider. Now I doubt that it meant that to him… I have more questions than answers, but he is not able to communicate as before and I wish I knew so much more than I do… in my eyes, love would foster compassion, and may actions right now don’t seem to be about compassion.
You have to be very careful about who you end up with, you never know who will be making decisions for you. Write a living will, know how that other person would react. I used to think that being a caregiver for your spouse was a given, but not everyone is equipped emotionally or physically. The last 2 years of seeing my uncle like this have really made me evaluate my life and what I want from it. It is not just about who to love, it is also about who truly loves you.