It's been 14 months since I held my husband when he took his last breath. He had suffered for more than 10 years with a degenerated neurological disease that took away his body in accrued and undignified manner. We approached every decline in a new and aggressive way with no success. He finally loss his ability to walk,eat, drink, and see. His depression became so overwhelming that I left my work position to stay home with him the last 15 months of his life. His mood seemed to get better and he enjoyed the fact that with me home we would have more visits with grandchildren and family.(Funny how that happened and not sure why he didn't have that before). Anyway he seemed to be turning around a little bit until he got aspiration pneumonia and then everything went downhill to the point where he never regained any weight or strength. He underwent surgery to have a port put in for fluids and food. At that point while he was under light sedation he had a revelation of how good our life had been and how he no longer wished to live the way he was. I was heartbroken. After we came home from the hospital and the overwhelming amount of hospice homecare came in, I knew in my heart it was not going to be successful. I called our family to advise them of what was happening should they wish to see him and many came to see him. It was like having a living wake until he went in an unconscious state. His beautiful blue eyes were now unable to close and in a constant state. Making him comfortable was now the only thing I could do for him. I played our favorite music, read stories and talked about our life together. I know he could still hear me as he would move a little like he was reaching for me. I would would lift him to me but was so afraid of hurting him (he weighed less than 100lbs). We held hands from morning to night and I slept in the recliner next to him. It was important that I was there when he died as his last unselfish request was that his brain be donated to John Hopkins (this is where he was seen). He wanted someone to discover a cure for his rare disease that may be passed on to our children and families. There was a short period of time that this could be achieved, so I wanted to make sure his last wish was a success. He died almost in almost 3 weeks. The worst 3 weeks of my life. I had nightmares for months reliving every moment. I was actually relieved his suffering was over but the emptiness and loneliness is overwhelming.
I am sorry this so long but I really needed to tell my story to someone who can understand how it feels to lose your spouse after 40 years. It's like having half your body removed with no strength to move the other half.