Last wishes, thankful things

Alex is dying.


He has had ALS ( Lou Gehrigs' disease) since 2001.


He is officially a morphine addict though at the end stage of ALS, they don't call it that. But- it is in fact what is technically happening.


I think about this every day. There is so little we can do every day. We make him comfortable. We take money and supplies to him and his health care workers. We have moved him into the main living area of his house and he is in a hospital bed at long last.


He needs to go to the hospital soon to have his feeding tube changed. For those of you who remember, that feeding tube is a crucial moment in my relationship with Jon.


Jon has been going in once a week to make sure that everything is going the way it should. He spends time with Alex which to me is the most important thing.


We watched Love Actually last night with Nessa and Bill. They hadn't seen it and it's a beautiful movie. However Jon cries almost every time at the Laura Linney story line. She is the caretaker for her brother and cannot see that she has sacrificed her life and happiness for the well being of her brother. It was seeing this with me a year ago that got Jon motivated to move out of full time care of his brother.


So last night, in the midst of a routine practical discussion about Alex and his care and needs for the change of feeding tube, he started to cry. He said "My brother is dying".

I just held his hand. There is nothing we can do to stop, slow down or reverse this. This is a death sentence for him. It's horrible and it sucks and I am sad to say, it is what it is at this point.


Please understand - I am compassionate to Alex. He's made mistakes - he's human - but he shouldn't pay for that with his life. I think he now is starting to realize just how much he took and how little he gave back. It makes me sad for him. But the cards are dealt now and there's nothing to do at this point but focus on the good things that are left.

Jon finally said to me what has been plaguing him for a year. He wanted it made clear - that if this cancer turns around and suddenly becomes terminal, I am not to let him suffer out like this. He wants to go and quickly. Please turn up the morphine drip, set up his headphones and IPOD and just hold his hand till he sleeps and is gone.


I gently laughed and said that I know, I'm familiar with your work.... He told me I actually wasn't because he was incapable of completing that task on his own when he was in the hospital in July.


"That wasn't your decision, I shut that down. I brought in the nurse who brought in the psychs. Do you understand why?" I asked


"Well no actually.... why did you?" he said


"Because you were CAPABLE of a full medical recovery. You were getting better. There was 95% chance of recovery. And I wasn't letting you go without a fight. HOWEVER. If you are terminal and there is no hope and this is what you want, as long as I am here to fight for you, and I have decision making capabilities, you will have what you want. " I said.


"Thank you - that's all I ask. I do not want to linger on and be a place holder in life - just let me go" He said.


You know what was interesting. I never thought this was something I could do. I have always believed that we are more humane to our animals than we are to our people. You wouldn't let your terminally ill dog or cat live a poor quality of life, correct? Why? because it's selfish and only serving YOUR purposes. So why would we do something like that to a person?


It will be possibly the most hideous and difficult decision and action to take, but I won't hold him on this earth if he is terminal and wants to go. I would ensure that there is no possibility of recovery but if lingering and being a burden is too much for him - than I feel that I could honor his wishes and not put him on life support.

Today we went to the city to see a play. I met him in the city because he is going to see Alex to drop off some things, fix the DVD player and move some things around.

The play was lovely and it was nice to walk through the city. We took the subway to Queens where he left his car when he went to see Alex. As we were driving home,he started to talk about Alex and his visit. Evidently he was more lucid today than most days. He made Alex laugh at something that I said regarding the Wizard of Oz the night before ( and no mean feat either - I'm not funny - ASK ANYONE!) but I gathered form our conversation in the car that the overall tone of the visit was not wonderful and full of warm familial feelings.

As Jon read me chapter and verse in a very calm way about some of the things that had gone on between them as adults in healthier times, I finally stopped him and told him about editing. Edit out the crap and focus on the good times. Because Alex won't be with us much longer and it doesn't pay to focus on the bad stuff, I felt it was necessary to try and turn the negatives here into something at the base that was Neutral if not positive.

We continued the conversation and by the time we got home I realized that he was in a better place for having talked it out. He just needed to say that bad stuff out loud. Get it off his chest so he could now focus on the good.

We are not anywhere near the end of this road but I can see it from here. It's only going to degrade as time goes on.

So having said all this - here's my 5 thankfuls for today:

1. I am thankful that my audition went well. My audition tonight was fairly good and I feel sorry for my poor director who has 3 qualified sopranos who were well prepped to do this piece. It's not a matter of who did the best audition now - it's a matter of what sound does he want.
2. I am thankful that things in my relationship are going better. I think we are both working harder and it shows in both of us. We are still having some minor issues but this too shall pass.
3. I am thankful that Alex has pain management at this stage of his life. I am heartbroken that we are at this point, and I am bonding with him through Jon in ways that never happened in healthier times. Alex and I share a love for "Family Guy" and though he cannot communicate with me other than email, we have forged a small bond over little things like that, the Wizard of Oz, some darkish humor, and music.
4. I am thankful for the lovely day,albeit cold, that enabled us to do some walking in NYC.
5. I am thankful for the lovely dinner and rehearsal we had tonight. Some big things happened here. We stopped at the store to pick up a few things for supper at his suggestion. When we got home, he made the most amazing Caesar salad and we had homemade Chicken soup. We went to our rehearsal where he bought us raffle tickets on his own. I was utterly surprised when he said that too. The rehearsal was lovely - we had a wonderful time - I had my audition then we came home.