This was a wonderful day and I am keyed up and exhausted at the same time. Gene and I have known for sometime that this walk was not going to be easy but we NEVER envisioned this scenario. We talked about end of life decisions at other times in our marriage because everybody ought to do so with the ones they love. We knew, we just knew that this walk with the melanoma was not going to be simple or easy or fun but we thought we would face it together. That we would talk and support each other and I assured him that he could die at home though I don't think I ever used those exact words. He helped me to care for my mom as she died in her home 20 years ago and again as my grandmother died in her home 15 years ago so he knew that I knew what I was talking about. and I knew he would be happiest if he could be in our house. Where we lived and raised our family and loved one another. During radiation he cried several times that he just wanted to go home so when the brain surgery did not overcome his problems as the neuro surgeon thought it would and the oncologist realized that the bleeding in Gene's brain was becoming more and more profound we all agreed that to go home, where Gene wanted to be, was the decision we could all agree on.
So today we took off all the accouterments of Neurological Critical Care. Off came the EKG sensors [and the chest hair!] Off came the IV's and accompanying tape that makes you sweat and itch. Off came the inflating leg wraps with their constant inflate -deflate noises. Out will come the scalp staples [in a few more days] Out came the big tube running to his stomach and in went a little tiny tube to offer his body comforting water, food and medications. Off came the restraint to hold his working hand to the bed, in came the mitten to protect him from pulling tubes out [Just the catheter and the feeding tube remain] Out went the high doses of salt and in came the pain meds and home we came.
Once settled he seemed to sleep for 4 hours! Though it is hard to tell sleep from rest he looks so much more comfortable in his NRA tee shirt and tomorrow we hope to find his favorite ball cap, that of honorably discharged AirForce veteran.
Tomorrow holds legal paperwork and meeting the hospice team. Tonight holds naps and turning Gene every few hours. Tonight the prayer warriors and family arrived --what more could a man desire than to be surrounded by people who love him and the saints of the Lord to lift him up and to care for his family?
I am thankful for this day and yet so deeply deeply sad.