Well, after 14 days without any sustenance, Jonathan passed away quietly at home on Sunday afternoon. The doctor was amazed that he held on as long as he did, as were we all. I'm proud of the fact that we kept him at home, as I promised him, until the very end. His last 2 weeks were very peaceful. Everyone had a chance to come and spend time with him to say goodbye. My Mom, his son and I were with him every day. Someone was always in the room with him, and we got a lot of time to hold his hand, talk about everything, cuddle up to him and sometimes just have a little nap beside him.
I have no regrets. We cared for him as well as we could, and I loved him completely. It's not a tragedy that he died; the tragedy is that he got sick in the first place. We never stopped living life, even though it became more limited. He gave me so much over the years, and taught us all how to be strong and kind and dignified under awful circumstances.
It may sound strange, but he had a good death. There was no infection, no pain, no struggle. Just a slow shutting down once his body had had enough. Having gone through this with him, I don't fear death. In fact, I would count myself lucky to pass one day like he did, at home, surrounded by loved ones. The waiting at the end was tough, but in retrospect now, no worse than living with this disease every day for so long.
Thank you to all of you for just being there. I never posted much, but read all the posts. I laughed and cried with all of you. Besides the fantastic advice, it helped so much knowing we were all going through this together.
I'll pop into the forum now and then, as I'd like to help anyone still coping with PSP as much as I can.
Love you all!