I've written about my mother many, many times. I used to hope her story would inspire and help others . Now I write about her because it is the only thing I know to do. I feel helpless, but I feel less alone when I know others are hearing about it. You all are carrying me through the saddest moment of my life.
My last post described what happened when I went to visit my mother on Saturday. I always knew the day would come in our Alzheimer's struggle when Mom didn't recognize me as her daughter. On Saturday, I didn't recognize her as my mother. I'd seen her days earlier, but her physical appearance has changed. My last post described the experience of realizing that my mother is, indeed, suffering. She can't move. She can't talk. She can't express anything beyond an occasional glance or partial smile.
My friend Debbie Deacon wrote something that really touched my heart: "My Mom was robbed of her vim and vigor after a massive stroke. She suffered from dementia after that and declined ever so slowly. Her last two months, she was almost in a comatose state. She too had a feeding tube, but her living will stated that she wanted none of that. We had all things removed and I slept with her for the last 10 days. Our Moms deserve so much more than they are getting -- or have gotten in my Mom's case. They deserve to go out with class, style and, as the saying goes, 'Oh what a ride!!!!' What you have posted about the 'Long Goodbye' was so very poignant, so incredibly true. It made me cry but I now smile too as my Mom no longer suffers. She is free at last. God Bless you both."
I read those words to my father a few minutes ago, and I know they were hard for him to hear. My amazing father has visited Mom in the nursing home four times a day, every single day, since she went there more than five years ago. He will not leave her. I invited him to a friend's home on the Weeki Wachee River for Thanksgiving Dinner, but Dad would not miss a day with Mom -- not even if we could have arranged it so he could have seen her in the morning and before bedtime. Over the years, I've begged him to do something fun with me -- go boating, go on a cruise -- anything to get him to embrace the fullness of life that exists outside the nursing home. But, for Dad, life's fullness can only be found beside the woman he has loved since the day they married in 1953.
No matter how bad it gets, Dad sees something positive. I was like that until about two months ago. I felt the love my mother still felt for her family, and it buoyed me above the losses we were experiencing. I now think that our positive approach has turned into denial.
Dad called yesterday to tell me he'd wheeled my mother into the cafeteria at the nursing home where a piano player played the University of Michigan fight song for her. He was elated, because Mom smiled and made eye contact.
"Isn't it wonderful?" he asked.
"I don't thinks so," I answered. I'd stayed upbeat and positive about Mom's condition until she became ill and was hospitalized two months ago with an infection. The infection has not gone away, and her long-dormant leukemia has flared up to combat our efforts to help cure the infection. Enough has happened that I believe she is not merely existing, but suffering.
"Dad," I said, "It isn't wonderful if she gets only one good minute a day."
"I'm satisfied," he said.
"But this isn't about you or me," I said. "It's about Mom. I don't think this is right."
My mom has a living will where she expressly chose not to be kept alive by artificial means, but she has been fed through a stomach tube for more than three years. When the time came to get it, she said she wanted it. But, that was when she could still communicate. I don't think she would want this kind of existence. How could she?
"Dad, I need to know something," I said. "There may come a day when I have to make a decision like this for you. What would you want me to do if you are ever in this condition?"
"Let me go," he said. There was no hesitation.
"Then we need to think about what Mom would want."
Dad says he's thinking about it. We'll have a family meeting. I hope we all can talk about it and make the decision Mom would make for herself.
The question is, do we love her enough to let her go?
Now Comes the Hardest Decision
Dad called yesterday to tell me he'd wheeled my mother into the cafeteria at the nursing home. He was elated, because Mom smiled and made eye contact.
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