June 15 is World Elder Abuse Awareness Day (#endelderabuse #WEAAD). The use of physical and chemical restraints is among several forms of elder abuse.
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June 1, 2014: The person sitting in the wheelchair at the dining table with her back to me seems to be folding in on herself like a fetus. As I get closer, I recognize her clothing, but not her. There’s a bruised, battered, frail body in my mother’s slacks and shirt and socks and shoes.
I pull up a chair. Her semi-clenched hands are drawn up around her face. I slip my right hand into her left, and lower them together. Her fingers are cool and soft; they curl around mine. I must do her nails. The polish is chipped.
“Hi Mom,” I venture. My tender underbelly speaks; tears threaten. Her “mmmmmmm” is barely audible. There’s leftover breakfast on her chin. Now it’s almost time for lunch. Will it stick itself to her too? Will no one bother to help her clean herself up?
I lick two fingers and wipe some egg from the crease at the edge of her mouth. When I was a little girl, she would spit on embroidered hankies and clean my face in a similar way. I would close my eyes and scrunch my nose and mouth as she scrub-a-dub-dubbed in a rush. We were invariably on our way somewhere; Mom was always on the go, and I with her. That was almost 60 years ago.
Unlike little girl me, Mom doesn’t need to close her eyes as I remove the remnants of breakfast; her eyes are sealed shut. She couldn’t open them if she tried. Fucking drugs. I look up and around, leave my hand in hers. Another woman in wheelchair looks at us from across the table. Sun filters through sliding glass doors that lead onto a tiny balcony where no one ever sits. A few moments slide by. Another woman is wheeled up to the table and locked in, though there really isn’t any need–she’s in the same catatonic state Mom’s in.
“Are you OK Mom?”
Another “mmmmmmm.” Somewhere a clock ticks. It sounds nothing like the one that kept time during decades of conversations in Mom’s kitchen. That clock, her clock, has a rich, deep and meaningful tic toc, tic toc, tic toc. It’s in the solarium at the place I rent just up the road; I write and rhyme to its gentle rhythm. But the tinny sound of the the one I hear in the background now feels as meaningless as tragic lives become in the end.
“Are you asleep Mom?”
“No.” This time her answer, though quiet, is immediate, definitive and clear. Yes, she is not asleep. But neither is she awake. She is suspended in a drug-induced haze, while I am bound and gagged in a drug-induced rage.
“It’s a beautiful day,” observes the lady across the table. It is a beautiful day, a beautiful day in June: cloudless blue sky, warm enough but not overly so, a day full of summer’s promise. It’s a beautiful day to make a beautiful life. “Why are they doing this to you?” I want to scream. Instead, I put my lips next to Mom’s ear and share her lunch companion’s observation like it’s a secret: “It’s a beautiful day Mom.”
“Is it?” Her words aren’t fully formed; they’re more like a breath with a “t” at the end. The secret of the beautiful day stops with her. We sit. Lunch will come eventually, and I will go. In the meantime I try to memorize her, knowing I will lose her to Alzheimer when it comes for me.
But it hasn’t come yet. Today, I know her like like the back of my hand. I was fooled by the hunched and broken body when I first arrived, but only momentarily. I know by her answers to my questions that she’s still very much here despite everything. The system and the people in it want her to sit, obey, and comply. Her ferocity is inconvenient, too much hard work. So they tie her up with drugs and alarms and lies and use her own safety and that of others as justification when the truth is inadequate care is the culprit.
They succeed in restraining her by sedating, reclining and confining her to a wheelchair. Like “change in gait,” her current demeanour is an antipsychotic side effect. But she has not surrendered. Her spirit is alive and well. I see her like I see myself. We reflect each other. We hold space–I for her, she for me–even as we are held captive in prisons we both will escape one day soon.
“I’ll come back later Mom. I’ll take you outside. We’ll have tea on the deck downstairs in the fresh air. In the afternoon. I’ll come back this afternoon.”
Her purple, black and yellow eye remains closed, so does the unbruised other one. The blood-filled lump on her left temple looks ugly and sore. Her fingers stay lightly wrapped around mine. With effort and ease she exhales her reply: “Don’t worry about that.”
We bide for several more heartbeats or eternities–it’s hard to say which–two tethered souls reassuring each other before saying another goodbye.
Then we let go.
June 1, 2014
https://myalzheimersstory.com/2016/04/27/we-too-are-one/
http://amazingsusan.com/2019/06/03/absence/
https://myalzheimersstory.com/2016/12/14/missing-you/
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My Alzheimer's Story 
My heart goes out to both you and your mother; it’s a very cruel disease. I’m concerned why she looks bruised and battered? My mum and dad were both in a nursing home for the last two years of their lives and there were many residendents suffering with Alzheimer’s disease. I don’t remember seeing any of them looking as you describe. My dad was in the early stages and sometimes didn’t recognise me, or thought I was his sister. He always laughed though to cover his confusion, and never lost his sense of humour.
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Thanks so much Carole. Bruised and battered because she is on coumadin (a blood thinner), which causes people to bruise extremely easily. And last week she fell… 😦
Having a sense of humour is essential to navigating this disease whether you have it or are caring for someone who has it! Glad to know your parents are with the angels now, though I’m sure you miss them terribly…
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What a compelling and powerful story. It reminds me so much of our caregiving with mama. I’ll share with you what I wrote in my book, Moving Mama:
When people talk about the impact of Alzheimer’s, they usually mention two things:
1) The disease robs people of their very essence; it takes their brains, their ability to think, communicate and act; and
2) Even when they are severely impaired, a spark remains, and we can still connect in some way.
Both are true!
Thanks for a story that illustrates that paradox so beautifully.
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You are so right Anne 🙂 And that’s why Im compelled to stay close to her, spend time and give her as many joyful moments as possible.
I’m also writing a book about my experiences with Mom, it’s a bit slow going a the moment! Myself and Martha Stettinius (Inside the Dementia Epidemic: A Daughter’s Memoir)
have reviewed several memoirs here and we’ll be posting a second flight of reviews shortly.
If you would like to send me a Kindle copy of Moving Mama: Taking Care of Mother During Her Final Years with Alzheimer’s I could perhaps include it in a review somewhere down the line.
Thanks so much for your kind words ❤
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Susan,
Thanks so much. I would very much like to send you a Kindle version of Moving Mama. Could you send me your contact info as a PM to my Facebook or Linked In: Anne Hays Egan. I’ll send you the Kindle tomorrow. It’s good to be in touch.
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Sent email 🙂
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As usual your haunting post is poetic and moving. Sounds like your mother “showed up” because you were there that day. My mother is in a much earlier stage of the disease (has only forgotten who I am one and then was able to apologize the next day to me), but I see threads of possible future encounters when I read your pieces. Am off to see her in 2 weeks while she is still able to live/be in the world.
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Thanks Heidi.
Part of the tragedy in my mother’s case is she is being given anti-psychotic drugs to manage her sometimes aggressive behaviour. Among the side effects of the drugs are impaired gait (she can no longer walk) and a mask-like face (expressionless). Also, she is “knocked out” (put to sleep).
I’m completely against the way she is being medicated, but unfortunately I’m not the one in control of her care.
I see her for 1-3 hours virtually every day, and I offer another side of our experience in my most recent post here:
https://myalzheimersstory.com/2014/06/03/a-magical-musical-alzheimers-gift/
I believe she would be much better off if she was less medicated. I’m currently reading this book which I find hopeful and helpful: Dementia Beyond Drugs: Changing the Culture of Care
Also, while the disease progresses and more functions are lost, seeds of the person remain and, as you say “show up.” See also the comment from Anne Hays Egan below.
Further, there can be many moments of joy in the process.
Everyone’s experience of the disease is different. I would be happy to share more of mine with you if you wish. You may contact me directly here: susan@amazingwomenrock.com
Love & hugs, Susan
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P.S. See also: https://myalzheimersstory.com/2014/02/27/5-uplifting-emotions-felt-by-alzheimers-dementia-caregivers/
❤ ❤ ❤
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Thank you for sharing. I just found “Amazing Women Rock” and immediately started following you! I’m blessed with a lot of women who rock in my life, including my 87-year-old mom who has dementia. I plan to start blogging soon to share my experiences as her primary caregiver and the progression of my baby-boomer journey so thanks again for the inspiration.
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Thanks Frances ❤
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A comment from Janice Wood on Facebook:
If you have experienced something similar, please tell your story.
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As a nurse, that works in Long Term Care, unfortunately, abuse is common. The most common abuse in Nursing Homes are neglect. Most Long Term Facility charge an arm and a leg each month, but staff their facility with a skeleton crew. I had to mark brief on the resident’s in the Nursing Home I worked, to get the staff to change them. Large facitlies are not the place to be. I own an elder care group home, and I have to have one staff to six people. I guarantee, your not going to get that in these facilties. http://www.goldenacr.org
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Good for you Laura, and yes, I believe you are right about neglect and abuse being common. Thanks for starting your own group home and using a different approach.
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I was in charge of taking care of my sister-in- law after the death of my brother, she had Alzheimer , we promise to keep her home and I DID , AT THE SAME time my dear friend had END STAGES Kinney failure and needed help as well, what I did was put the two of them into one home and divided my time between each, I don’t know how I was able to do it but with the help of God I was able to do it, we had an ambulance for transportation to and from the Doctor I did the cooking , cleaning, washing, and giving medication, as well as shopping and making sure they had their bath, and clean clothes, God thank you for allowing me to know two beautiful people and for helping me help them.
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Wow @Maybo2, thanks for all you did for your sis-in-law and your friend ❤ Sometimes we don’t know the strength we have until we have to use it ❤ God bless you.
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