Essay: A Mother's Passing Story aired: Friday, January 13, 2006
Well, we almost made it. We almost got Mom into a nursing home. But just before Christmas, she took a disastrous fall. She died seven days later.
Some of you know I've been caring for my Mom long distance for a while now, navigating a bewildering maze of dementia and healthcare coverage. There was a group of us actually, home aids and geriatric care doctors, my brothers and sisters, Moms grandkids and a saintly boyfriend. Together we were the Flying Wallendas of elder care, keeping Mom aloft. Now I feel as if I missed a catch and my arms are so empty.
But, I've learned so much. So, if you don't mind, what follows is one last dispatch from the elder care front.
I've spoken here about Mom's heart attacks. Her dementia. But she was delightful and far too independent for a dementia ward in a nursing home. What to do?
Live-in aids can cost up to $80,000 a year, but after Mom's private insurance company went under, Mom had only Medicare, and little savings.
So we applied for Medicaid, the federal program that's administered differently by each state. Luckily, in New York, Medicaid pays for full time live in home health aids, at a fraction of the cost to the state. Mom qualified, an angel from Ghana named Akoosia Darkoa moved in and it worked great for about a year and a half.
But it became impossible for us to handle what we came to call the night terrors. After dark, Mom would rage at demons only she could see, or continuously call for her mother in a voice so frightened it broke your heart. This despite strong drugs. In hospitals they call it "sundowners," or delirium. At sun-up she'd smile and become sweetly childlike again as if the wreckage of the night before had never happened.
Towards the end, I was travelling from Boston to give the exhausted and heroic Akoosia a break. I made it, a kind of devotion. I'd get up and guide her back to bed, then lay down for a minute, then do it all over again. All night. Of course we'd come full circle, because as a mother of four infants, this is what she did for years.
Finally, the time came to find a nursing home here in Massachusetts, whole new bewildering terrain. New York officials said Medicaid coverage was transferable, it was not, we'd have to reapply. Also, not all nursing homes accept Medicaid patients, and very few had beds available.
I found elder care consultants, and a companycalled A Place For Mom, which is free to families, and acts as a middleman between nursing homes and seniors. I learned that if I offered to pay privately for a room for Mom for a month or so, around $8,000 a month, a bed would probably become available. And it did. We were driving to see it when the call came that Mom had fallen. She walked out the front door, the front door! We'd put extra locks on the basement door but not the front door. She fell off the stoop, and hit her head.
We spent days in the hospital, my sister curled up beside her. We held her hands so she wouldn't have to be restrained, we held our breath. She had bleeding on the brain, and soon stopped eating. Her doctors explained that inserting a feeding tube was an option.. but the surgery could be too much for her. It didn't matter, I'd promised Mom no tubes.
All of her children were either on the cell phone or in the room the night she died. My brother sang the songs they sang together when he was a kid, The Lords Prayer and "If you were the only Girl in the World." And then she was gone.
Over the last two years, people have said, why don't you take a break, this must be such a burden. It turns out that the opposite is true.
It's not that Mom and I always had a storybook relationship. There were occasionally issues, which will be plumbed privately. She was a kind, generous woman buffeted by the gin soaked 50's, losing three out of seven children in childbirth at a time when women were told "Be happy, you have a dishwasher!" While I leapt in to the Women's Movement, she was divorced into it, unwillingly, and woefully, underprepared.
There were times when I was impatient with her, but now I don't know how she held it together as long as she did. And here's the thing: over the last two years, I fell in love with my Mom all over again.
And she knew it. Her words were often nonsense, and she was confused, but she always knew who we were. Once after a particularly discombobulating and sweaty session getting her into her PJs,during which I kept up a comic narrative, we both flopped back, exhausted. on the couch. She turned to me, and clear as a bell, said, "You are so kind."
I tell you all this in case there's anything you can glean from it. In the end, what I learned is: You can rail at the overloaded underfunded elder care system; you can lock all the doors; you can build a moat, in fact, but you can't keep out the thief in the night, really no thief at all, but a compassionate end to the night terrors.
Guests:
Robin Young
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