I am sitting here alone in my room and have just read Teresa Thompson’s very sad story that is almost a copy of what I am living.. In 2007, my spouse of 20+ years was diagnosed with Parkinson and then Jan 2011 Lewy Body Dementia. In February 2011, he was rushed to the hospital with a heart attack. He never came back home. He was placed in a long-term care facility.

He is in a wheelchair 10-11 hours a day and can no longer walk. Most of the time, he is very confused. Sometimes he knows me. Other times, he smiles when I walk in because he remembers the face. We talk about baseball and his work. He was a wonderful baseball player and worked for the same company for 37 years, and that is what he remembers.

I have read extensively and gone to many meetings to help understand losing someone we love to this horrible disease. The Parkinson’s is now really taking over. He is sore all over and of course no exercise doesn’t help. He was on the golf course 6/7 days before getting sick also played hockey.

He is 74 years old but at times, I see a five year old. His doctor told me about two2 months ago that he is past the middle of the 7th stage. She took him off of his heart and blood pressure pills, and is instead acetaminophen four times a day. He was not able to stay on schedule, so she has started a small dose of morphine when needed.

This is such a heartbreaking disease. You have no communication with the one you love. Don’t you find there is still so much you want to say to him or her? Believe me, Teresa, I totally understand what you have said. I know my journey is not over and the hardest thing for me to accept is that he looks fairly healthy. That is very confusing for me, even though I see how fast he is changing. I guess I am in total denial…

God Bless you. If you or anyone else that has been or is going through this illness, you may contact me at barb50@videotron.ca. I live in Quebec, Canada, and we have no LBD organization here.



Jan 08, 2014