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Demenopause
We find her on the floor.
She is sleeping.
I am scared. She is snoring.
I bend down, “Ma. Ma. Wake up.”
“You’re so tall,” she says as she looks up at me. Her eyes are empty. Blank.
They have been empty, blank for some time now.
She had been diagnosed with moderate stage dementia. For those of you who no nothing about dementia, I tell you, it strips you bare, a destroyer of hope and faith and goodness. If you don’t believe much in God, dementia will certainly push you further away.
“Ma, you’re on the floor. How’d you get there?”
She tries desperately to arrange words so they make some sense, “I. Don’t. Remember.”
There were so many incidents, both large and small. The driving straight into a fire hydrant, the driving into the closed garage doors, the burning of bagels and toast, and the once fresh flowers left in a vase for so long the water evaporated and left a perfect mold-ring and the smell of mildew.
I tuck her in. Ken waits for me in the spare bedroom. I sleep with my mom. She smells old. Frail. Not like the mom I remember who wore Pleasures by Estee Lauder, or Final-net hairspray, which left her thin hair so stiff, and so unlike human hair. She smelled old, and frail. She too, had once been a fresh flower.
But what I remember – the memory that is vivid – is her peeing on the floor. Those other memories I can toss aside, fan away as if an annoying fly buzzing my head. But this moment, memory has stuck with me, and fills me to the point I often feel like my knees are buckling under me. She stood in the hallway. She had replaced her beloved perfume, Pleasures, with 3 to 4 days of not bathing, she had replaced her soft brown eyebrow pencil with a purple sharpie pen, and most of her white garments – sweaters, tee-shirts, blouses – had the forever stain of L’oreal beige #3 makeup on the collar. It was a hot day in New Mexico, where she was now living in an assisted living facility. She had turned up the thermometer to well over 90 degrees in her apartment. I was irritated, and impatient and lacked any generosity in that particular moment. I was in the throws of menopause, and if I tell you that 90 degrees felt like a thousand degrees, I would not be exaggerating. I told her that it was so hot in her apartment that I was getting a fucking sunburn just watching television. She yelled at me, saying angrily that she wasn’t hot. “I have a chill, I’m Goddamn freezing.” she screamed at me, and I proceeded to yell back at her, asking her how the fuck could she possibly have a chill when it was almost 100 degrees in her apartment.
“I don’t feel hot. If you make it colder, I’ll hate you. I’ll hate you. I will never talk to you again,” her voice shrieking.
“Fine, Mom, hate me” I said.
This, by the way, was not unchartered territory, the yelling and the screaming and the chorus of “I’ll never talk to you again and I hate you.” This was not new, or unexpected.
What came next was.
She peed on the floor.
In the hallway between her bedroom and the living room, the pee dripping down her leg soaking into the wall-to-wall carpeting.
She covered her mouth. Mortified. And then she said through a wave of unstoppable tears, “I have no control.”
Had she been much younger, and in therapy, this would be a moment of enlightenment. A revelation.
But this was not that kind of moment. It was terrifying and all and everything became crystal clear.
My mother – my feisty, angry, emotional, strong-willed, gorgeous, sexy mother – was no longer.
This is what I remember: her standing there drenched in her own urine, her fragile hands (hands that once sported perfectly manicured nails) covering her mouth, tears falling from her eyes (eyes that were once green and filled with passion), her body small and slight (a body that was once strong and stunning and oh so, sexy), and that all she had been was completely gone.
When I was a little girl, my greatest and biggest fear was that my mother would leave me and not come back. I think most little girls feel that way. Or maybe just most little girls I knew. That fear of losing your mom penetrates, permeates, and fills your soul until the moment she comes back and you can breathe.
This time my mother wasn’t coming back.
She was gone for good.
I clean up the pee, and I wash her housecoat, and I keep the heat in the apartment to where she felt comfortable – 94 degrees – and I sit with her on the couch and i sweat profusely, and we hold hands, and watch TV. And I close my eyes, and I silently pray to any and all the God’s throughout the universe – any and all that I can remember by name – and I ask that my mother ‘please, oh please, not remember what had just happened,’ because it would fill her with great humiliation and embarrassment and disgrace, and if one or more God’s can just grant me that wish, I promise that I will not forget, because by not forgetting, she could never really ever be gone.
Category: Uncategorized 22 comments »
June 14th, 2012 at 3:21 pm
This this heart wrenchingly beautiful and sad. Thanks for your amazing honesty. What a beautiful writer you are.
June 14th, 2012 at 3:43 pm
This story hit me hard.. My husband has Parkinson’s and Dementia. As you talk about the darkness of the eyes it breaks my heart, it’s the cruelest. It’s hard to sit around and know that the man I married, my best friend is no longer fully there and as time goes on I will be losing him each day. And my beautiful daughter witnessing something she is not of but being scared when he has his night terrors. Very Sad! Thank you Amy for your blog…I won’t forget all my wonderful memories either…
June 15th, 2012 at 12:49 am
Hello Amy: Your powerful blog brought back memories of our Dad who passed away from cancer in Thanksgiving Weekend’07. From the time he was diagnosed to his passing was less than 10 weeks.
We did everything at home since our Dad was given 1-1.5 years from his colleagues (U.C. Davis Medical Center) who moved heaven and earth to help.
During that time I turned 50. Our Mom wanted me to celebrate but I said that I prefer to wait until next year. For my 50th birthday I did the same activities as you described.
Love You!!! Norbie
June 15th, 2012 at 4:06 pm
To write about the devastation of your mother-daughter relationship with such honesty, compassion and, yes, beauty, is the best protest a writer can make about the injustice of a life ending like this. Bravo Amy, and thank you.
June 15th, 2012 at 11:51 pm
OH Amy, I am in tears. Heartbreaking & beautiful. Love you
June 16th, 2012 at 3:12 am
This made me cry. I can’t bear the idea that my daughter might write something like this about me someday. I hope your mother doesn’t remember too.
June 19th, 2012 at 11:09 am
Beautiful, sad, and familiar to so many…
June 20th, 2012 at 9:35 am
Thank you for putting into words exactly what I too am going through. My Mom is 97 and in the early stages of senile dementia. I see a subtle change each day and feel so helpless as I watch the once vibrant and so “with it” woman dwindle before me. I feel ashamed when I get impatient with her, almost like with a naughty child…..but at least with a child, every parent silently says to themselves..”this too shall pass”, they won’t be this way forever, and you get through it. Not so with dimentia. There are so many emotions that I have to deal with, sadness and helplessness have lead to hopeless days and nights. It’s hard to fathom how you can miss someone when they’re right there. I’ve learned to take the days when she is lucid and clear thinking and she smiles when she sees me as a gift from God. All I want is my Mom back.
June 21st, 2012 at 12:02 am
Oh darling, I ache for you, and her, and Ken who would be hurting for you, too. To lose yourself, to watch your mother lose herself–I shake my head in awe at the magnitude of this anguish. I worked in a nursing home straight out of college. Bessie Crawford, bless her soul, she of the strong, pinching fingers that got her nicknamed ‘Bessie Crawfish,’ who dawdled down the halls and whom I most unreasonably adored confessed to me as we perambulated side-by-side, “I’m old, and I’m never going to get over it.” There were no words to answer that; a warm hand surrounding hers had to do…
XXXOOO
June 22nd, 2012 at 7:02 am
My mom is 79 and has advanced Alzheimer’s. She now looks at me with a blank stare when I visit and it is just crushing. I am 49 years old and some days I just want to scream at the universe, “Give me my Mom back!!” What I wouldn’t give to be able to talk to my mom like I used to and get her advice. This disease is a slow miserable process and it is horrible for the person and their family. Thank you for writing this blog.
June 24th, 2012 at 2:12 pm
This was stunning. Honest, painful, and loving, an inspiration to go deeper in my own writing.
June 24th, 2012 at 3:33 pm
It is so difficult and wrenching to watch your parent decline. And you handled it soooo well. You are a good daughter, Amy. 🙂
June 25th, 2012 at 5:40 am
Thankyouthankyouthankyou for sharing such a personal experience and making it real, vibrant and shattering.
June 25th, 2012 at 3:37 pm
Amy… I’m conjuring the photo of your mother that sweeps across your Facebook page, the biggest picture there. In it, she’s sexy and gorgeous and poised and you can smell the perfume from here. That’s the mother of your youth, the one you still honor by posting her picture like that and so this story, and the loss of that woman, is so utterly profound and heartbreaking and real and the truth about what dementia takes away from us. The loss of grace. And you sitting there in that heat holding her hand on that couch because you got it… boy. Beautiful, true, hard writing. Thank you, Amy.
June 25th, 2012 at 4:53 pm
Oh Amy , You touched me to the core with your writing. I have lost a mother in law to this dreaded disease and Just a few months ago my husbands brother as well… What you describe here is so much like what i experienced with my mother in law… The only difference being that she also lost trust of her 7 children. She believed that they were stealing from her . She was unable to do anything for herself . I was the only one she trusted . I had to take care of her finances and when she would lose control as well , I would bath her… She was 92 when she passed. As for my brother in law , he was much younger when he was diagnosed. He lived for 5 yrs with it . He wasn’t as far gone as what you describe but began losing control as well. He died at age 67 …. My husband worries that it may happen to him as well. . He often tells me to just shoot him if it does.. But of course I would never do that … My mom is 84 and is sharp as a tack. I cherish every moment with her because I know that one day I may have to deal with that reality….. My heart goes out to you …xo donna
June 25th, 2012 at 5:04 pm
Beautiful powerful writing on a difficult but much needed topic of discussion. I applaud you for allowing us into your world – it takes bravery and courage. I guarantee that this will be supportive to many families who are struggling with their parents dementia.
Thanks you so much.
June 25th, 2012 at 5:08 pm
Me Again, Just a funny story to lighten it up … One day I got a call from a hairdressers in my hometown.. The owner asked me if i knew a Mrs. Burke to which i replied yes , she is my mother in law… Well, she said, she is down here in her pj’s all dishelved and needs a ride home .. So off i go to pick her up. As i was driving her home I asked her why did you go out looking like this ? She told me that there was this short man with a black mask around his eyes staring down at me from the top of the stairs. It spooked me so i ran out and found myself there… She would call us at all hrs of the night with all these crazy stories. We all thought that it was part of the disease.. She also said that the man or one of her kids stole all the ivory utensils she had . Come to find out as we were cleaning out her home that the ivory utensils were under her mattress and the man she had so vividly described had been racoons. They had made a hole in the roof and made as nice home on her second floor…
June 25th, 2012 at 7:54 pm
Thank you for this..heart-breaking..enlightened..I did not have to see my mother suffer thru this..was I fortunate?? I’ll never know..i know that this speaks to the child in all of us..
June 25th, 2012 at 11:58 pm
Wonderfully written….brought back heart wrenching memories of my grandfather….a strong man both physically and mentally….reduced to a shell of a man…so sad for my family to all witness this….
July 18th, 2012 at 6:08 am
Thank you for sharing your very affecting story. I had a similar experience with my grandmother, who passed away after a very long and grace-taking struggle against Parkinson’s. This brought back so many memories and nuances. Thank you for the heartbreak and the memory and the enlightenment. Such eloquent writing.
July 20th, 2012 at 1:58 am
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August 28th, 2012 at 8:04 pm
Beautiful. Your mother is surely loving you right now. Love never dies. Never. It’s the one thing we always get to hang on to. Forever.