Back to Black

A Swift Current Back to Black Hallie Swift's latest essay about our mother's decade of dementia

Vuillard The Artist’s Sister with a Cup of Coffee 1893 the Fitzwilliam Museum University of Cambridge

 

We only said goodbye with words

I died a hundred times

You go back to her

And I go back to

I go back to

us

 

I knelt by my mother’s side

But mama…

Her smoldering eyes

drilled right through me as

she unleashed a torrent of accusations;

every word

a scorching, vitriolic indictment of

me.

Her nurse put her arm around my shoulder

You need to leave. You do not deserve this.

But it’s my only chance…

You need to leave.

The nurse quickly led me to the back door

Go.

Now!

I stood

shaken and dejected

in the blinding glare of the Southern California sun.

This raw, tormented incarnation was a new twist

-at least for me—

in the trajectory of my mother’s disease;

I had never seen her

in the full grip of dementia’s vise.

I had grown accustomed to many aspects of
the disease—

dissolving memory,

fantastical stories,

even harsh diatribes;

but I had never witnessed

the searing black vortex

which enveloped my mama—

the dementia horror show.

But even though I saw it,

I didn’t accept it;

I did not try to understand the disease; and

I dared not imagine

what it was like for her.

I buried the actual words my mother said that day—

I cannot remember a single cutting recrimination that

stung so deeply and

caused her nurse to push me out the door.

Retreating to my own fantasy world,

I continued to discount the staff’s reports of

my mother’s increasingly volatile, aggressive behavior–

even when

they moved a roommate

for her safety;

or warned another resident’s family

about my mother’s fierce outbursts

against their elderly matriarch.

They must be exaggerating, I silently intoned;

in my mind, my mama was the innocent – always.

And I was incensed when another resident accosted me in the hall:

Is that woman your mother? She’s awful –she yells through the night and we can’t get any sleep!

My mother…is not awful–she can’t control—she has dementia—this is not her!

But it was her.

And again and again

I simply refused to admit

what was happening.

It would have been so much easier—for everyone

–for me—

if I had only accepted

the vicious truth.

But then one day

an exhausted charge nurse

pulled me aside—

that week,

she said,

my mother’s screams

had filled the halls of the nursing home

in the darkest hours of the night.

And with her revelation,

I could no longer deny

the stark,

surreal,

tragic force

of my mother’s disease–as

night after night

dementia took her

back to black.

Hallie, I need to know something…

did your mother lose a baby?

What?

Did your mother lose a baby?

Why?

Because every night, we give birth.

You—what–

Every night–your mother wakes up– screaming–she’s having a baby.

The nurses surround her.

Push Push
PUSH…

And every night,

her baby is dead.

Hallie, I need to know–did you mother lose a baby?

There was…um…between my sister and me…

Then that explains it. Your poor mother loses her baby
every night…

we’re trying to help, we’re doing everything we can– but
I hope—for everyone– this ends soon…

There.

There you have it.

That’s all you really need to know.

Dementia is a horror show.

I see it so differently now than I saw it then;

but then

and now

I didn’t want to know
any of this.

Then and now

I cling to

another memory of us–

we gaze at the view

from the nursing home garden;

we speak in silence as

the sun sets

red gold purple orange turquoise blue

across a glimmering city.

She even invented a word for

our dramatic evening skies–

Dinnerscapes, she called them

(and how did her demented mind,

I want to know,

capture with one word

the landscape of our dimming day)

A Swift Current Hallie Swift's latest essay about our decade of dementia

“I called them Dinnerscapes because they remind me of your art” Dinnerscape, a pastel by Mickey Myers, all rights reserved.

 

I cling to

our dinnerscapes–

but that’s the Technicolor version

of our story.

In the end

the horizon always fades to black.

And I must finally face

the one truth

I refused to accept

all those years.

My mama lived through hell on earth.

It was called dementia.

She was not awful,

except she was.

You do not deserve this.

 

A Swift Current Back to Black Hallie's Swift's latest essay about my mother's decade of dementia

Vuillard Woman Seated in a Dark Room, 1895, Musee de Beaux Arts Montreal

Opening lyrics from Back to Black Amy Winehouse and Mark Ronson composers, copyright 2006 Universal Music

Advertisements

20 thoughts on “Back to Black

  1. To the readers of A Swift Current: I realize there has been quite a gap between posts. I want to thank you for your patience, your continued interest and your encouragement of my writing about dementia and eldercare issues.

    The gap in time was not intentional. There are essentially two reasons. First, I felt I needed to rethink the tone and perspective of my writing as a whole. While I have shared a substantial portion of my mother’s story in the previous posts, my thoughts continue– albeit in less linear and even more reflective mode. And while I have tried to portray the many facets of dementia, I believe that previous posts have perhaps sugarcoated our story, tempered by how grateful I was just to be with her during her final decade. But I thought that, as so many of you are going through the black right now, it was time to pull back the curtain and share the horrific devastation that pummeled my mother, as well as my reaction at the time. Otherwise, A Swift Current would not be complete and would ultimately misrepresent our story.

    The second reason for the gap in time was entirely unexpected and involves my writing process. My ideas tend to come together during long walks–usually toward the end of the walk– there is actually a scientific reason for this–based on the way the brain in constructed (those “light bulb” moments are real!). Well, this summer I sprained my foot–and my walks were on hold. And while you might think I had all the time in the world for writing, in fact the ideas simply did not flow without my walks!

    Again, I appreciate your interest in A Swift Current. I welcome your comments on this page–I learn so much from your experience and perspective; you fuel my thinking.

    Thank you,
    Hallie Swift

  2. You are a courageous woman, courageous daughter to wrestle with these memories. I learn so much about you and the human spirit from each of your posts. May they bring you healing and peace.

    Hope all is well with you and yours.

    • Thank you so much for this lovely comment. I plan to explore the notion of healing in the next post. I do think the writing gives me understanding that is otherwise elusive. And it forces me to confront thoughts that are otherwise hidden. But I also feel compelled to share these ideas here so that people going through this now can perhaps feel reinforced, or given a different perspective. And that notion, that our experience might in turn help others, does bring a sense of peace.

      I welcome you to share this with anyone you know who is confronting these issues. Thank you again, H

    • Thank you…I thought so but it is good to have your vote!

      For other readers, this comment refers to whether I should give more examples of my mother’s behavior. For example, earlier drafts included descriptions of how my mother was aggressive with other residents…however, I deleted them from the final version as I thought they diluted the impact. And clearly my friend Elie thinks I was right to delete them.

      It’s all part of the process!
      H

  3. Bravo! Standing ovation you nailed it. Never have a read such an accurate portrayal of Dementia. Thank you for your voice.

    • Never have I read such an accurate portrayal of Dementia.

      Well, that makes me float on air. It is curious to me–when I first started writing A Swift Current, I concluded that I could never reveal the story of the lost baby for privacy reasons. But by excluding the tale, I was leaving out a vital piece of information. And as I said in an earlier comment, I felt that its absence was ultimately misleading, and I didn’t want people how are now experiencing the deep dark void to think somehow ours was filled with flowers and rainbows…

      So I had to go there, and in doing so, you said it is the most accurate portrayal you have seen.

      That moves me deeply.

      Thank you, H

  4. I can’t even imagine what pain this put you and your sister through. Thank you for sharing this very dark side. So far, I have not seen any real evidence that this is happening with my mother but I fear it. This is such an important part of your story.

    • Thank you Francesca. The thing about Dementia–as I understand it–is not everyone suffers the same symptoms–or in the same degree–it can manifest itself quite differently. I hope that you never have this experience. But if you do, know it is part of the spiral.

      If I could change one thing, I would not deny her reality.

      Easier said than done,
      H

    • Thank you, Sharon. Yes, who knew my feet were more important than my laptop in the creative process. Actually the article that I referred to is called “Hit the Reset Button in your Brain” from the New York Times. Actually it isn’t about walking necessarily, but how inspiration takes place when you aren’t focused on the task at hand. For me, that usually happens when I am walking!

      I appreciate your good thoughts, H

  5. I have never read such a painful, terrible, honest look at dementia. It kills me to think of your mom, night after night, going through the birth and death of her baby. It pains me so thinking of you going through this with her. Thank you so much for your honesty and willingness to put to words (such eloquent words they are) the pain that so many go through. It reminds us to honor what the person with dementia is experiencing…and to comfort those who are with them on this sad journey. Thank you, Hallie.

    • You just said it better than I ever could. Another person wrote that she didn’t worry too much about the demented person, because she thought they were too confused to know how bad things were. This pieces has changed her thinking. And yes to understanding what the caregivers/loved ones are going through. It is a topic no one wants to discuss. But what a help it would be if we pull back the curtain and reveal the truth.

      I am grateful if this writing can play even a small role in shifting people’s understanding and perspective.

      Thank you once again for your continuing and steadfast support. You lift me up.
      H

  6. I’m speechless, and yet at the same time I have so many things I want to comment on and ask. I suppose those things can be simultaneous. Did you have any idea about this baby? She must have tried to block out that sad and terrifying experience — I wonder how the brain works that it would unleash that sad memory and yet when it came to familiar, day-to-day, routine things, the memory was locked.

    There were so many times I wanted to go and visit your mom where she lived, but between my own problems and my fear of not knowing what to expect in terms of whether she would know me, I never brought myself to DO IT. After reading your account of what went on, perhaps my sixth sense kicked in and told me not to go, because I’m pretty sure I could not have handled it. You are to be highly commended not only for having witnessed your dearest friend go through the “hell on earth” but also for sharing with all of us what happened, and doing so with dignity and love.

    Sending you much love and respect, Hallie. ❤ xoxo

    • I am grateful and moved by your comments. I will take a stab at answering, but might want to revisit my answer…

      Yes, the lost baby was discussed in our home. It wasn’t a hidden secret, but something we acknowledged at many junctures. On the other hand, perhaps naively, I never realized my unknown sibling was burrowed in her soul all those decades.

      What is interesting to me is that dementia took her-repeatedly-to awful memories. The lost baby isn’t the only example, but certainly the most horrifying. It is as thought the brain is storing all these dark things, and one by one they have to be untangled. The filters which put them away-I don’t want to think about this now– were stripped away.

      The only good news, and I talked about this in a very early essay called Themes and Variations–is these bad ideas seemed to play themselves out…and then are never unearthed again. It is as though a theme takes over, and won’t leave the person alone. But once it is gone, it is gone.

      Yes, it is a catch 22 for people who want to visit dementia patients. On the one hand, visitors can bring relief for the care workers , the patients and others. On the other hand, if it is a bad day— as my mom was clearly having in the first example–it is best to leave quickly. And short visits can be good too, although you wouldn’t believe how many people, especially in the early years, would call to tell me my mom was just FINE and she did not belong in a nursing home. They would visit for a few minutes, not there long enough to witness the personality flip, the dark shadows move across her eyes, or the fact that she didn’t have a clue who they even were! That drove me wild (with anger).

      I so appreciate your concluding thought–that you felt this was written with dignity and love. As I said earlier, I was afraid of violating her privacy by revealing some of these events. Through all of this, if you can imagine, my mother retained her dignity. The nursing home social worker frequently commented on her elegant bearing and courteous manner. And so it is important not to take that away from her now. It is a relief to me that you think I portrayed her accordingly…

      With love and thanks,
      H

  7. What a startling and powerful reflection! It’s good to have Hallie’s voice again and the art along with it. Thank you.

    • Thank you. Startling yes. For me too.

      And thank you for commenting on the art. Once again, Vuillard is the source of deeply sensitive and psychologically compelling images. I actually found several to chose from.

      Please feel free to share on Facebook…(I guess I am in a marketing mode–now that it’s written, it wants readers–I know you can relate!)
      H

    • I don’t think many people knew about this part, it might have been a topic only among our immediate family and friends from that era. And as I have said previously in these comments, I was very reluctant to go down that dark road here, but I felt it was imperative to make this story more accurate and complete.

      Thank you– as always– for your support of this (challenging) effort!
      H

  8. It must have taken a lot of courage and fortitude to witness your Mom falling into the “black vortex”. The words you use truly invoke feelings in the reader that mirror your reaction and feeling. I’ve read “Back to Black” a number of times and after each read I’m able to absorb more of your story and imagine myself in your shoes. Your commitment to seeing your Mom through her dementia is admirable. I’m convinced that there are many people who are not capable of doing what you have done; revisiting and writing about your experience.

    Your writings are certainly helpful to others who are watching their loved ones slip into the dark depths of dementia. The two paintings you included by Vuillard are perfect depictions of what happens to one’s mind.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s