Bill's pain has eased, the humiliation and indignities he suffered a thing of the past. His days and nights of suffering from "pressure" sores, constipation and cramps are ended. His deafening silence echoes off every wall of my house.
Bill passed away 2 weeks ago. I happened to catch one of his eyes roll back and right itself so I had my sister, who was helping me change his bed linens, get our daughter from downstairs. Mom was over, so the four of us held his hands while telling him how much he was loved and respected, and what a difference he made in our lives. He died surrounded by love, in his own bed at home, like he wanted.
The next day, he was going to a local nursing home while I was going on respite. He and I "talked." I couldn't stand seeing the pain in his eyes anymore, with no way to communicate his feelings. I told him that it was okay if he wanted to let go. I could take care of myself. And if he wanted to continue to fight, that was okay too. I could take care of him for as long as I needed to. I guess he was ready to hear those words, because he let go the next day.
I have been grieving the loss of my husband since his diagnosis, while squeezing in every minute of life with him. We vacationed in Texas with our daughter, got a rare visit from his sister and her spouse, visited with our son and his family for a good two weeks, even took a cruise to the Caribbean before he couldn't go to restaurants anymore. We saw more movies at the theater in the last year and a half than we had in the previous five years!
He could still crack a smile until the last week, that same smile I fell in love with 41 years ago when I first met him,. When he lost that smile, I knew I would lose him soon, but the end came unexpectedly fast. I am so blessed to have been with him at that precise moment to be able to gather the family around him so he wouldn’t leave this earth alone.
You may not see much on my blog for a while except for positive quotes and art, as I find myself at a loss for words. But I’ll be back, with humor, with links, with suggestions and advice.
Here’s one bit of advice I’m giving right now. Bill and I were lucky to have been veterans who received total health coverage from a VA hospital. Because of the diagnosis of ALS, all our equipment and supplies were given to us without cost. Not a lot of people with ALS can say that. So to balance out this inequity, our bedroom is filled with his bed, his equipment and his supplies, ready to be picked up for those ALS victims who cannot afford what can make the rest of their lives more comfortable – maybe even prolong their lives. When the day comes that you or your family member no longer needs the equipment or supplies, please consider going online to your ALS Association Chapter and filling out the donation page. They will contact you to let you know what they can accept and will pick it up from you.
That’s all I got today. Hope your week is going better than mine!