Little Did We Know

Missing poster

Missing Poster–displayed on a neighborhood lamp post– Photo by Hallie Swift

In a bustling airport,

I watched the scene unfold;

an elderly woman

surrounded by police.

She was traveling to see her son.

She did not know where he lived.

She did not know her name.

Clutching a policewoman’s hand, she cried

Please don’t leave me!

I moved on.

Why on earth is she traveling alone?

I thought;

What an irresponsible son!

Little did I know.

Across the country

my mother was covering up

signs of emerging dementia.

We attributed her occasional slip to

forgetfulness;

laziness;

or an annoying

ploy for attention.

And my clever mother always

smoothed over missteps;

deflecting any doubt;

Mama, what did you say?

Oh, I was only joking!

And with that assurance,

we moved on.

Just a few years later,

the doctors gave those missteps a name–

dementia–

but beyond their diagnosis,

the professionals

seemed unwilling

to explain what was happening.

And when I asked too many questions,

their answers were imbued with impatience;

peppered with subtle disregard.

I remember

during the first weeks of our nursing home life;

a social worker nonchalantly commented:

Well, that’s your mother’s Sundowner’s Syndrome.

I had no idea what he was talking about.

When I asked for an explanation, he seemed incredulous

You know, he said, in the afternoons, she gets more confused.

She does?

Yes, she’s more confused in the afternoon. It is called Sundowner’s Syndrome.

Later

the meaning of sundowner’s was dramatically revealed during a visit with my uncle.

My uncle and aunt–

always impossibly charming—stylish–even glamorous–

in my adoring eyes, and

in their respective 90th and 93rd years,

they still were.

I visited their new assisted living facility; assisted or not,

they appeared unchanged—

my handsome, jovial uncle; my gracious, proper aunt–

compared to the typical roller coaster visit with my mom,

this was easy.

But as the afternoon light shifted, deep shadows fell across my uncle’s chair.

Without warning,

he looked anxious.

He glared at me;

his face etched with fear.

His expression menacing, he demanded

Who are you?

I froze.

My aunt buried her head in her hands;

Oh no, oh no. This is so frightening.

And as if a loud voice could clear his mind, she shouted

It’s Hallie; it’s Hallie; Mike’s daughter, Hallie!

Who?

Your brother Mike—Mike’s daughter– Hallie!

I don’t know any Hallie. Are you my wife?

My aunt raised her voice; it’s Mike’s daughter! Mike’s daughter, Hallie!

Mike didn’t have any daughters.

Sundowner’s Syndrome;

like film noir–

shadows appear sinister; mysterious; threatening;

and the demented brain reacts.

In a flash,

the patient responds to danger;

fear sets the stage.

A Swift Current Dark Shadows

Dark Shadows– Photo by Hallie Swift

Just as startling,

as the drifting light again enveloped my uncle’s chair,

he snapped out of the sorcerer’s spell–

Hallie,

he smiled wanly,

come see us again soon.

And there you have it–

my mom–

my uncle—

a face staring from a missing poster

or lost in an airport–

each completely different;

each exactly the same.

They call it dementia;

they use clinical words and vague terminology;

but they don’t tell you what to expect;

they simply don’t know.

Much later

as the disease approached its final stages,

my mother would sit for hours in the garden;

cradling her face in her hands.

She’d taken to wearing a cap over her unwashed hair—unwashed because she wouldn’t let anyone touch her;

she’d scream if we tried.

Words fumbled; sentences incomplete; her thoughts quickly evaporated into silence.

It appeared

we had finally reached

dementia’s steepest slope;

little did we know.

Right before her last birthday,

my mother re-emerged;

back in the sun.

A  Swift Current my mother's 95th birthday

Reading cards on her 95th birthday Photo by Hallie Swift

Sporting a new haircut,

she was ebullient; effusive;

brimming with excitement for her 95th year.

My sister and I were wary; her mood could change at any moment. Just the three of us gathered in the garden—bestowing balloons, presents, cake,

and photo birthday cards with images from her youth.

That day

my mother’s joy never abated; she was clear, content and even more beautiful than the pictures on the cards.

A Swift Current my mother's 95th birthday

“That’s me!” My mother seeing her picture on a birthday card–Photo by Hallie Swift

As the afternoon light slowly shifted, she studied us closely.

Nodding slowly,

a faint smile at the corner of her lips,

she quietly proclaimed

I am so pleased.

As we returned to her room, she gave her best Queen Elizabeth wave to her fellow residents in the dining hall, calling out

Thank you for coming to my party!

The nursing staff approached my sister and me. They shared our euphoria, confiding that they were astonished by what had transpired.

Just a few weeks earlier, they were not sure she would make it to her birthday. Certainly she would not understand what was going on.

Instead she surprised all of us with a transformation

no one could anticipate.

She gave us

her old self;

a radiant last birthday;

reminding

all of us

once and for all

how little we know.
      

A Swift Current on her 95th birthday

“…observe her closely…it is almost as though she will be gone shortly…” Quote from Octave Mirbeau…Photo by Hallie Swift on my mother’s last birthday

The Octave Mirbeau “Observe her closely…” quote comes from his description of Claude Monet’s Study of a Figure Outdoors, Facing Right ,1886, in the collection of the Musee d’Orsay, Paris

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24 thoughts on “Little Did We Know

  1. Wow, so moving! Your ability to paint a vivid picture with words is tremendous. I am sitting at my desk at work just stunned. I think this is your best post yet! Thank you for sharing that.

    • I appreciate your words, Janie. I have said this here before, but it bears repeating, each post feels sort of like a walk across a tightrope, so your comment “best post yet” makes me feel like I have gotten to the other side. I cannot thank you enough, Hallie

    • Thank you, Jan. I know I have already covered a lot of the major issues, particularly as they pertain my mom’s story. But things that happen in the course of a day– like seeing the Missing poster, or the tragic death of Philip Seymour Hoffman that inspired the last piece– that unlock a trove of memories. I anticipate that after I “complete” my mom’s story, my posts might be less frequent…but do hope to keep finding those angles because this discussion is so vital…so many people are going through this with their loved ones…and I hope we can shed light, even if only a little light…H

    • Thank you Tati. I might have said this before, but I used to feel funny when people told me they cry when reading my essays. But I realized–I am writing because we all carry a sorrow right below the surface…and we are not able, allowed, encouraged, to express that part. I always tear up when I hear certain music…and I think that’s just fine! I wish we could all be comfortable with our tears…I think we would be better off! Thanks so much, H

  2. Absolutely exquisite. Touching, revealing, painful…as always, lyrical. Thank you for sharing your observations and talents with us.

    • As I look back on that decade, I am grateful for everything…even being a casual observer to that scene in the airport. I was sad for the woman but judgmental of her family. What is it they say about walking in another’s shoes…well, I walked in them alright! I hope in some small way I can contribute to people who are experiencing this ordeal, if only to add to their understanding of Sundowners…!

      Also, I might note that this is the first time I have posted photos of my mother in her elderly years. I felt I needed to illustrate how completely she was present for her birthday. I will not post the “before” photos but trust me, my description is accurate, if not understated…

      Thank you Joanie, as always, for your support of my efforts…H

  3. You have gloriously succeeded in painting a picture of how unpredictable this disease can be. Thank you for sharing your heart, and for sharing the talent of letting the reader know what is residing there.

    • Thank you! I am deeply gratified by your words, and thrilled that you chose to share my writing on your blog. Your preface is uplifting…and makes the hours staring a the blank screen worthwhile…Hallie

  4. Pingback: Alzheimer’s shifting personality | Baby Boomers and More

  5. Hello my dear😊. It’s been a while since we’ve been graced by your writing. I find it so interesting that even when young, the night time always seems to bring those “creepiest” things of one sort or another, whether it’s intensity of a sadness of what you may have felt earlier or fear of anything hovering in life. At least for me it’s always been worse at night. It’s interesting that it continues breaking through dementia’s own horrors, if that weren’t enough. So good to hear your words again. Loved seeing the pictures of your mom.
    Fondly,
    Suzanne Monasteri

    • Hi Suzanne and thank you for your thoughts. I had not really thought about the night holding its own fears, but you are absolutely right. It is something to be aware of in general, let alone with dementia patients. Recently some friends have told me that, because dementia patients have such difficulty sleeping at night, that some nursing facilities are responding to the dictates of the disease…letting patients sleep during the day and be up at night. The philosophy is, I think. why should patient care be dictated by the regular world, when their world is not in the least bit regular! At any rate, it was interesting to me…I am sure there will be a lot of innovations in care as more people face this illness…

      And yes, I did pause between writing the last essay and this one… the last one, about my dad’s death when he was age 63, was the culmination of a lot of thought over a lot of years, brought to fruition by my reaction to the death of Philip Seymour Hoffman. I thought the essay should stand alone for awhile, and it took me some time to regroup my thoughts. I aim to publish an essay each month…although I am drawing to the close of my mom’s immediate story, there are so many thoughts about eldercare, reaction to current events and discussions with friends, I am sure I will continue writing on this topic for some time.

      Thank you for your observations,
      Hallie

  6. SO BEAUTIFUL–your writing makes me so proud. I am so happy you are sharing a very moving experience in your life and in this process you are giving your readers so much insight and pleasure. In this process, you are also learning to accept other life experiences that are impacting your life and may be able to share those in the future too. I am living through Dementia with a dear friend who I still invite to Mah Jongg at my house usually on Tuesdays.

    Last week I gave the Mah Jongg players a little gift and 3 times during the course of the 4 hour game she took her gift out of her bag and asked where she got it. The next day I got a call that she couldn’t find her purse and thought she had left it at my house. I called back and explained the other players had told me she had lost her purse before she got to my house, then she wanted to know if I had her Mah Jongg bag. I explained I had made sure she had it when she left my house. It is so difficult to keep smiling and answering the same question over and over but I am determined to keep inviting her as long as she is able to converse at all and enjoy the game. She can still complete some difficult Mah Jongg hands which shocks all of us. We just can’t keep up with her purse once she takes it home!

    Your writings are a great book.

    • Thank you once again for your support of my writing! I know there are many who would stop inviting a friend to join the game–your time, your patience, your understanding I am sure are a bright light in her life. When my mom died, the phrase “no stone unturned” kept going through my mind; I felt I had done everything I could…it gave me a certain peace despite my huge sorrow. I know one day you will feel the same about your friend.

      It is interesting to me that she still plays great hands. Like music, I wonder if the patterns she learned a long time ago are stored in a different part of the brain, enabling her to call on them! The brain is so interesting…though every time I try to read about it, I get confused and leave it to the scientists!

      Is it a book? So many people are telling me it is…we shall see!
      Thank you again, H

  7. I hope you can share this beautifully written essay with many more people. It would be a perfect piece for the “Modern Love” page in the New York Times or in the New Yorker, or a number of other publications. My congratulations on work so well done.

    • Thank you! I have not pursued publication beyond the scope of the writing here, but of course would welcome ideas! I know that the Modern Love section of the Times literally has thousands of submissions each week…there are a lot of writers out there! In the meantime, I am happy to share my thoughts in this forum, and hope you and others pass along the link, become followers, share on Twitter, whatever it takes I appreciate! H

  8. All I can do is cry here…and I cry for you…but I know I am crying for myself and what I might face soon. Thank you for each and every post. You are a treasure.

    • So many people are telling me that this essay is particularly sad, and it is odd…I thought my mother’s “reemergence” in the last months of her life was a very happy gift…to the point that I did not focus on the more harrowing tales in this essay.

      Maybe I have gotten accustomed to the sorrow of it all. I recently heard a Fresh Air (NPR) interview with the writer Ann Patchett who apparently has an essay about dementia in her latest collection. I haven’t read it (yet), but it sounded like Patchett was advocating that we “accept” the limitations of the demented person and understand that the original person– as we knew them– will not be back.

      I agree, and tried to express in an earlier essay that one of my greatest sorrows as I reflect on the decade is that I always wanted my mom to be the woman she was on her last birthday, and I could never get used to the new version…in a way, it was my problem, not hers…

      I plan to read Patchett’s essay but until now have tried to steer clear of other writing on the topic as I didn’t want to be inordinately influenced by others’ stories…but I do wish there had been more out there for me to read while I was going thru it…everything was basically instructional (do this, don’t say that) and I found it didn’t begin to address the emotions of the ordeal.

      Thank you Francesca, for your generous comments,
      H

  9. This is another fantastic essay. Poetic indeed. And your wonderful photo ‘dark shadows’ though a bit unnerving, perfectly illustrates what it might feel like to be in the mind of someone with dementia. I never knew about sundowners syndrome but have witnessed the increased confusion that comes with the evening light when visiting my stepmother. I had taken it as my cue to leave. Next time I will stay.. Thank you

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