Sunday, July 6, 2014
I'm so sad. We lost Steve on June 28.
He was doing ok. We were managing all his symptoms and problems.
We quietly celebrated our 49th anniversary on June 12.
Then, the following week he started with a low fever. It climbed to 102.8 even though he was being given a strong antibiotic through an IV.
Our family doctor sent his nurse practitioner every day. One day she came 4 times. She was so caring and compassionate.
Steve gradually got worse. He could no longer move his limbs but his eyes stayed on me all the time. The worse for me was that he could not communicate. We tried everything but his brain wouldn't let him blink his answers and he could no longer squeeze my hand. He managed a big smile when our two daughters came. We stayed by him around the clock. He knew what was happening, he could hear and understand until the very end.
After a week of this the nurse practitioner brought in Hospice. What a wonderful organization. His lungs then began to fill up and his larynx was closing. The end was near. The girls and I whispered our love to him and hopefully he left this earth without pain.
I have been inundated with beautiful notes from so many people. I realize how many lives he has impacted.
I also realized that the hospice nurses are more informed about MSA than most doctors, especially the ones in the ER.
Steve put so much of himself into writing this journal, especially in the beginning when he wanted to get the word out. I have tried my best to keep it going for him. This will be the first post that he is not "editing".
Will I continue the posts? I do not know but I will let you know the results of the brain donation. I understand it takes months before they contact you.
I am including the link to his obituary and a slide show for those that did not know him personally but faithfully followed his blog.
Thank you, everyone for your support.