Dear Friends, I have been absent from the Stroke Net for a long time while devoting much of my time to caring for Bernie.
My dear Bernie passed away 2 months ago today. She was home with me with hospice care.
The last few years has not been kind to Bernie, repeated seizures and a severe anemia caused a multitude of problems. The last of which was repeated episodes of an enlarged spleen. Radiation treatments to shrink the spleen, although successful, caused horrible bone marrow problems with catastrophic effects in her own blood production. In June of last year she spent the month in the hospital, while there she received 20 units of whole blood and I lost count of the platelet transfusions (Bernie had about 80 units of blood in the last 4 years). During that time she had 2 severe seizures that had a lasting effect.
In December of 2013 I noticed her appetite getting worse again (a sign of the spleen enlarging once more). She was very weak and thin. We went to the hospital in January and explored the options which were few, she was too weak for surgery and needed blood and food. Also, we were given the news that her myelofibrosis (blood disorder) had evolved to a state of leukemia. Nothing but tragic news was coming our way.
Two days before Bernie left the hospital we had a feeding tube surgery scheduled. They were to put a tube into her stomach with the end of it reaching the duodenum. The enlarged spleen was crushing her stomach so this type of surgery would have gotten nutrient in her and allowed her to get stronger, hopefully. That morning, when they came to get her for surgery she called me into the hospital bathroom and told me and the nurse "no more" she said "Mike, I think I'm finished with all the surgeries and poking and blood transfusions. I just want to go home and take my chances." I asked her to please reconsider the tube and she told me "I've made up my mind, let's go home". She knew what the consequences would be and even though I understood, my heart broke. Bernie and me, and our daughters met with hospice before we went home.
Bernie came home January 21st under hospice care and me, I could not leave her. At first she could still have a cup of coffee, a little juice and maybe a few sips of soup. She just continued to weaken and not able to eat or drink anything the last couple of days. I thank God that she was in no pain during this time. On February 5th she passed away, and so did most of me.
During the last 4 years I prayed to God to keep me healthy enough to take care of Bernie. I am very grateful to have had the opportunity to do that. My life now continues to be in shambles. I'm going to try and attend one of the chat rooms, I'm not sure I can do that yet.
Telling this story, has me in tears again. We were married nearly 47 years and we were always in love.
I tried to write this directly into the blog twice and messed it up both times. I hope I remember how to copy and paste.
Peace and Love, Mike