The Red Shoes of Alzheimer’s; or, Listen with your nose.

The first time I saw them put the belt on Mde. P, I was shocked…maybe even incensed.  They were all sitting down to dinner, and one of the aide soignantes (I’m pretty sure the equivalent of LPN) looked at me apologetically.  “When her husband’s not here, she won’t sit still.”  Sure enough, even with the belt holding her to her chair, Mde. P tried to get up.  Over the months I’ve been there, I’ve seen her so determined to get up, she literally walks with the chair attached to her, like a turtle with its shell weighing it down.

It’s the sickness.  It makes them unable to stop moving.  There’s this fairytale by Hans Christian Andersen called “The Red Shoes.”  It’s about this girl, and for reasons I won’t go into here (don’t want to spoil it) her feet begin to dance, independent of her will. No matter what she does, she can’t stop dancing. Mde. P doesn’t remind me of her character, mind.  It’s just that when I see her, or Mde. H, who moves large arm chairs across the building incessantly, so that we’re always finding an arm chair in the strangest places, or M. D, who shuffles about, walking circles around the corridor, not looking like he has a place to go, maybe because he realizes he doesn’t – I’m reminded of the story.

Recently Sister J has been doing the same thing, but mostly at dinner.  And she doesn’t amble about aimlessly – she stops by the other tables for a chat, which generally involves a bit of a tight grip on one’s shoulder as she stares into the distance, scratching nervously at her neck.  Sister J is perhaps the sweetest person I’ve ever met.  She doesn’t say much.  For a while I thought she was nearly deaf, because she only seemed to respond if you got up close to her ear to say hello.  But she likes to cling.  If you let her, she’ll hold onto your hand or your arm and follow you about, scratching all the while.

She’s got these terrible, heavy, red plastic glasses that look like a teenager might have found them cool in the early 90s.  They’ve even got these stupid-looking stars on the sides, right on the endpieces.  They look awful, and I think they’re probably very uncomfortable.  Sometimes she scratches them right off.  But she doesn’t want to change them.  Her hair is cut incredibly short, but I think she was the headmistress of a primary school years ago. She can’t be 5 feet tall, so I imagine her short hair gave her an air of authority in spite of her stature. Most often her eyes are closed, but when she looks up into yours – because she always has to look up – there’s a depth to her gaze I’m not sure I’ve ever seen in anyone else’s eyes before.

Owing to the fact that she can’t sit still during dinnertime, they decided to try to use the belt.  The nurse told me before-hand, kindly…apologetically.  I said, “I understand why you have to do it.  And Mde. P doesn’t seem to mind it.  It should be okay.”  I was very, very wrong.

Sister J was not just unhappy – she was livid.  But you couldn’t tell at first.  I looked over at her from our table, and I noticed that her chair was too far from the table for her to eat.  She’d moved it back after they belted her to it.  I paused feeding M. D, told him I’d be right back.  I walked over to her and put my hand on her shoulder.  “You can’t eat from way back her,” I said gently.  I could see right way how angry she was.  I gently pushed her chair closer to the table, and squatted down by her side.  “Sister J, you know it’s only so you’ll eat.  You really must eat, and the nurses are very busy – they have a responsibility to make sure you eat your dinner.”

I wasn’t sure at first if I’d heard her correctly, because she said a whole sentence and I was caught off guard.  “It’s not right.  They shouldn’t force me.  I didn’t do anything wrong.” (Incidentally, she did push another resident who made her mad the day before, but owing to her condition, she couldn’t remember that she’d done it)

“I know, Sister J, but you’ve been getting up a lot and moving around, and then your food gets cold and you don’t eat it.  And you have to eat to take your medicine.  It’s their job to make sure you’ve eaten.”

“It’s not right,” she said again.  By this time the nurses had noticed her talking.  She’s really not known for her way with words.  I told the nurse, “I don’t think Sister J is very happy.”

“I’m not happy,” she concurred, loudly enough for the others to hear her.  Then she said, “I wouldn’t get up so much if I didn’t have to sit with her,” and she pointed to Sister S.

Sister S…is special.  Taller and leaner than Sister J, she also doesn’t have to contend with glasses (perfect eyesight), a cane (walks like a dream, though a bit like a geisha), or the ceaseless need to move.  She has no problem eating, and doesn’t try fruitlessly to open her water glass like it’s a jar.  Sister S has other mental health problems, but not Alzheimer’s.  She’s one of two who don’t have the disease.  Sister S has her own issues to contend with, though.  She isn’t well-liked, owing to the fact that she quite likes to hawk up phlegm loudly enough to be heard through the whole building, and then spit – equally loudly – on the tile floor beside her.  Before dinner, she shouts in a high-pitched voice, “J’ai trop mal!” which roughly means, “I feel too terrible!”  She shouts to the nurses when the others aren’t eating:  “She’s not eating her soup!  She’s not sitting down!”  Sometimes she shouts directly at them:  “Drink your water!  Eat your soup!”  She was also in education, but I’m not sure how, exactly.  Every time she meets you, it’s the first time, and she asks your name.  “Ann?  That’s pretty, that’s pretty.  Oh, yes!  Oh, yes!  That’s pretty!” and she bursts out into song, and it’s quite funny because she does it every time she “meets” a girl – even the nurses who are there all day, every day…it rhymes in French.  It’s endearing.  She’s demanding:  “Madame!  Madame!  A little water please!” and “When will eat?  I’m too sick!  When will the soup come?”  They often leave her with her bible in her room until it’s on the table to avoid the racket.

Coming back to Sister J: she’d just called out her foe.  Sister J had never once said a thing about Sister S – nothing I’d heard, anyway.  The other woman at the table – Mde. R – she moans about Sister S all the time:  “Why don’t you be quiet?  That’s disgusting!  Stop spitting on the floor!  If you do that again, I’ll make you lick it!”  I know this sounds terrible, but it’s not so bad…it’s kind of funny.  Nobody’s hurting anybody, but boy do they annoy each other sometimes!  And it’s not incessant.  Mealtimes are tough.  But Sister J never once said a word.  Now she was standing and very upset.  The nurse came to speak with her; I went back to finish feeding M. D.

When I’d finished, she was still standing there.  She grabbed my hand and said, “Come.”  We went for a walk around the corridor together.  She took me to this back corner, where I often find her sitting when I look for her at dinner time.  She sat down in one of the arm chairs Mde. H had left there.  I squatted down to be at eye-level. She was silent for a moment.

“I don’t talk a lot.”

“No you don’t,” I said softly.  “This is the most you’ve ever talked to me.”

“I don’t talk because I don’t have trust.”

“In who?” I asked.

“In anyone.”

I paused.  “You know you can trust the nurses here.  They’re very kind.  But if they don’t know you’re upset, they can’t help you.”  We stood up together and walked slowly to the common area again.

I can’t lie.  I was positively thrilled.  That was the most coherent conversation I’d had with anyone there in the five months I’ve been around.  And Sister J is the person who’s talked to me the least, though she’s often communicated in other ways.

Tonight Sister J sat at our table.  I had to get up and guide her back to her seat a few times, but it was alright.  Mde. R ate at another table, as a temporary resident had left and there was a space for her.  Sister S sat at the table alone, but a nurse was quick to give her a book and a magazine before she noticed.  Everybody ate.  Nobody spit.  Nobody shouted.  It was magic.

These guys aren’t getting younger, and I’m not getting less attached to them.  So it goes.  But I am learning more about listening.  It is most certainly not an exercise exclusive to the ears.

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3 thoughts on “The Red Shoes of Alzheimer’s; or, Listen with your nose.

  1. suncitymom says:

    Perhaps your true writing should be in a book about your friends at this home for the dying. Your words and insights are beautifully written and we can feel your devotion to these poor souls who no longer know they are lost.

  2. Tough but rewarding, so rewarding. So proud of you for all the hours you put on this Ann.

  3. ann, if you write this book i will read it and give it to everyone i know. I am currently reading a book of meditations and photographs, “The Meaning of Life” (found it through Brain Pickings), anyway my point is that you are as close to expressing that meaning as anything i’ve read, seen or heard in a long time, if not ever…beautiful stories written with such grace…thank you.

    ron

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