So now is the update I never wanted to write.
Ben passed away on Friday, December 26th at 10:15 pm at home.
Ben was released from the hospital under 24x7 hospice care on Christmas Eve - how is that for a present under your tree? (which coincidentally - his bed was right next to the tree). He had been declining pretty quickly since his admittance to the hospital - so by the time he was home he wasn't his usual self. Luckily we don't live far from the hospital so the ambulance ride to the house wasn't too upsetting (although I didn't ride in the ambulance - just the process of moving and loading and unloading can be stressful - so if anyone has to do that - make sure there are pain meds given right before departure).
Christmas Day was somewhat uneventful with a few friends stopping by to see him and say goodbye. One of our closest friends arranged for the Priest from the Episcopalian Church Ben wanted his service in to stop by and perform last rites - with a few of our closest friends. While I can't say I'm the religious type - it was quite calming and peaceful (and I know Ben wanted that).
I talked with Ben a lot that day, holding his hand sitting at his bedside. He didn't really say much - but he ALWAYS knew when I was at his side - it was quite remarkable. He knew when I held his hand, he knew when I touched him - he knew when I kissed him (which I think i was up to about 1,000,000 times). The nurses even commented that as soon as I was near and he could hear my voice - his body language changed. Hearing is the last to go - so talking was calming and reassuring.
The day after Christmas Ben's breathing became more labored, his hospice case management nurse (who has been with us since the beginning of hospice three months ago) stopped for a visit to see how the crisis care hospice nurse was doing and to check on Ben. She noticed that he seemed in a bit more distress - we talked and she decided to double his morphine to 10mg per hour vs. the 5mg (with direction from the doctor). I emphasized that whatever it took for him to be in no pain or distress - and to go as quickly as possible was the goal. Ben's biggest fear was to linger.
Later that day I had 4 of our closest friends over in the afternoon - where we sat outside, laughed, cried and took turns checking on Ben.
When the last person left about 9:30 PM, I went and sat next to Ben at his bedside (if there had been room I would have crawled in next to him - I wish I had ordered the bigger bed now). I held his hand, hugged him, kissed him and told him we were all ready for him to no longer suffer and we were ok for him to go.
I talked to the nurse and asked what she thought of how long he might last (which of course nobody really knows), but he wasn't yet showing all the classic signs of someone moments from death.
I got up from the bed and told the nurse I was going to get ready for bed and I would be out to help her turn bed over to his other side. Moments later she knocked on the door of my bedroom and said " you need to come out - it's time". I was definitely not expecting that. She said his breathing changed immediately after I left the room.
I sat next to Ben, held his hand, hugged him, kissed him and said goodbye until he took his last breath. It was the most beautiful and peaceful thing I have ever experienced.
I am only going through the details here because I thought I would be a complete mess when the time came. I wasn't sure if I wanted to be next to him, but I always knew- even though he never said it, that he wanted me by his side when he went. My point is - while I thought I would be a mess, it turned out to be something I will treasure forever and never forget. Being there at his side at the time gave me an incredible sense of calm and peace and I will be forever grateful that I was there at his side, next to the christmas tree in our beautiful home.
Ben had enormous strength and courage through his 4 years - he rarely complained and just moved on from day to day. He didn't like me sharing too much information to anyone outside our closest circle (and rarely anything on Facebook), as he didn't want the sympathy- I'm not sure I would choose that path but that was his wish.
I am so grateful for this board and the 4 years and 4 months that I have leveraged the research, the shoulders to cry on and the experiences of others to help us in this journey. I am humbled by the moderators that dedicate so much of their time ensuring that we all have the support and resources we need. It's the epitome of selflessness.
Thank you all. Love to you all. Strength to everyone.
p.s. If I can help anyone with anything feel free to send me an email. It's been a long journey - hopefully more of the patients will have the same opportunity to fight as long as Ben.