I spent some time last week with a patient that needed to make some really hard decisions. To continue to fight or to call it a day...to keep trying to live or to let disease take it's course and die. His wife had made a decision earlier in the week to stop treatment but was so uncertain about the decision after going home.
The phone rang on Wednesday morning and I could barely understand the person on the other end through the tears..."I decided not to do the chemo yesterday, I guess were done" she sobbed. "The doctor said it was up to me but then asked me if I really wanted to put him through this anymore" and I said "no." I was at a loss for words and it was hard to understand her. "Do you want me to come over?" I said before I looked at my schedule. "No, I'm really okay, just sad and wish things were different." We planned my visit for two days later and hung up.
I didn't allow myself to think too hard about the situation. I decided that it was not the time and I had been teetering on the edge and have finally decided not to jump. I went about my day and the next not thinking a whole lot about the visit.
Friday morning came and it was wet and soggy but the sun shone bright when I pulled up to the house. I walked in and washed my hands admiring the dishes and glasses that they had accumulated over the years. As I walked over to the couch, I looked at a picture from last year when they were on a trip. They were holding each other and smiling...the calm before the storm. I asked her to help him out of bed and bring him out to talk. I decided the night before that I wanted to help her have clarity, to understand that she is doing what she believes he wants and what is right for them.
Typically, he is tired...has trouble keeping up with conversation and can't find many words to communicate. On Friday, he seemed clearer than he has in the last three weeks. I sat on the floor, grabbed his hand and looked up at him. First, I asked him how he was feeling and if he had any pain. "No, I don't hurt anywhere" he replied clearly. Then I went on and explained what was going on lately, assuming he would not understand. "You went to the doctor earlier this week and everyone decided that it wasn't helping so you didn't have your treatment" I said. "I didn't have my treatment? and then he paused, "Okay, but I don't mind the treatment" he said. "Do you want to stop treatment?" I asked. He replied clearly and with strength, "I'm not ready to die yet"... and then went on..."I know it's coming but I would just as soon stay and keep trying than stop." He looked me straight in the eye hoping I understood. And I did. I don't know what it is like to know you are dying but wanting to stay...but I do understand when you want to keep fighting. I also understand that my job is to honor that...until you can't fight anymore...and then be there with you when you decide it's time to die.
After that, he wanted to go back to bed. His wife and I walked him in, helped him lay down and she kissed him sweetly. He snuggled into the soft comforter and smiled.
"Thank you, Terry, so much" I heard her saying to me. I think that sometimes it is easier say the things that need saying to a stranger than the person that you promised to be with, support and love forever. I think it's a fear thing...if I say this, what will he think, will it come across wrong, or will he think I think he should do something different. It's all that history, that water under the bridge along with the fear of pain when the person does go.
She was happy to have some clarity about what he wanted. All day, I thought about how it must be a daunting task to make a decision to stop treatment on a loved one. Especially when it's not in your game plan of life.
The game plan of life...that's an interesting concept. My game plan has been changed almost on a daily basis. I am sure as Jim and I get more and more into the middle age years...it will change more. I guess we need to have a plan...but when it goes terribly wrong, the fear of the "that's not in the plan" can be paralyzing. I get to watch that on a daily basis.
So the final paragraph with the wrap up and solution...don't fall in love, don't get sick, don't have kids, and definitely don't die. Then you are set...the plan won't have any glitches. Or, you fall in love and plan a life, you live each day the best you can (some better than others), you live as much in the moment as you can, you have kids if you want, love them dearly and know that you have no control, and when you finally do die...or if you know you are dying...you did it up, you broke the fun barrier, the love barrier and you hoped for the best...
That is my game plan of life...want to join me?
We'll tawk tommorrow,
I love you all,