What A Tale My Thoughts Could Tell

A Swift Current What A Tale My Thought Could Tell

Vuillard Young Woman in a Room 1892-1893 The Hermitage, St. Petersburg

When you reach the part

Where the heartaches come

The hero would be me

But heroes often fail

                    ~Gordon Lightfoot

Saturday night

New York City;

jazz on the stereo;

the nursing home on the line:

-she’s agitated the doctor’s coming the meds aren’t working we need you to know her meds stopped working the doctor’s on her way we need you to know-

Sinking into the sofa,

I asked my husband

Why do people live so long?

As the words crossed my lips

I shuttered;

I had spoken the unspeakable

Why?

Years earlier,

my mother had written a living will;

in her own hand

she spelled out what she wanted.

She was unequivocal;

she believed in

quality of life

not quantity of years.

No extraordinary means,

she wrote,

but it had little meaning

when her mind disappeared.

Perhaps

her words could guide us

through end-of-life decisions–

but we never got that far.

Our decisions resided in the land of

of the grey;

how do we care for our demented mother
when we know
she would not want to live like this?

At the beginning,

the head nurse had proclaimed

Dementia patients in skilled nursing

live longer–

they have no worries…everything is done for them…!

Her words–meant to instill confidence–

begin to haunt me;

and I start to see

the nursing home itself as

extraordinary means;

bestowing years

my mother did not want.

During my visits,

people would say

Your mother is so proud of you!

and I’d wince–

I could not escape

the beating drum

the insistent rhythm

the irrefutable fact

I failed you.

Even after her death

I could not let go

(I should have taken you home, mama–

in the beginning,

when we had the chance—

home, mama

like you wanted–

no extraordinary means,

no unwanted years!)

And now

I see my friends

enter the fray;

doing battle

for their elderly parents.

One by one

I watch them struggle

with the same unmerciful choices.

From the sidelines

I see heartache; confusion; doubt.

And I realize

it’s the daughters and sons who try to do it all

who feel like they are doing it all wrong.

Where my friends feel gnawing frustration and guilt,

I see only unselfish grace and goodness.

A friend checks her watch; it’s time to call her dad. He’s lost after the recent death of his wife-his sweetheart. Every evening my friend patiently encourages him as they select his TV programs for the night. With tears in her eyes, she gently cajoles him (You’ll love Bob Newhart, Daddy…) as she lifts him up again and again.

A friend’s father will not let his favorite jacket out of his sight. After much searching, she purchases a similar jacket, slips it into his room and secretly launders his treasured garment. He might not be fully aware of her resourcefulness and ingenuity, but I’m sure he knows her love.

A friend joins me for a quick bite at the end of a long work day; our visit is brief; her 95 year old mother lives with her now, and will be despondent if her daughter doesn’t return home soon.

And this summer, on the 5th of July, a friend tells me she spent the entire previous evening on the phone with her 90 year old mother. Her mom was upset by the sound of fireworks. Mother and daughter talked long into the night.

You spent your entire 4th on the phone?

Well, yes…she needed me…

But you gave up your celebration…

I did…but…you know…

you do what you can do.

You do what you can do.

And with her words,

I let go.

Four years after my mother’s death,

the 5th of July, 2014;

my independence day;

my absolution.

You do what you can do.

The nursing home or

moving her home;

the choices were perilous.

We chose the nursing home.

It was not the right answer.

It was not the wrong answer.

It was our answer.

It gave us

long years.

It gave us

each other.

Your mother is so proud of you.

Yes,

she is.

You do what you can do.

Everybody loses the thing that made them. That’s how it’s supposed to be in nature. The brave stay and watch it happen. They don’t run.

                                                              (Beasts of the Southern Wild )

A Swift Current What A Tale My Thought Could Tell

Madame Vuillard and Annette, 1920, Private Collection

The title and opening lyrics are from the song If You Could Read My Mind by Gordon Lightfoot, copyright 1969 by Early Morning Music (SOCAN), all rights reserved. One of my all-time favorite songs, Lightfoot has stated “it’s about peace through acceptance” (Gordon Lightfoot Songbook copyright 1999 Warner Bros Records Inc. and Rhino Entertainment Company).

The story of the jacket can be found on the WordPress blog Let’s Talk About Family. When I first started writing these essays, I avoided other writing on the topic; however in recent months, as exploration of my mom’s story approaches a conclusion, I have found several probing, poignant blogs by people who share their unfolding experience with dementia. Here is the link for Lori’s writing: http://letstalkaboutfamily.wordpress.com/2014/06/28/lunch-with-dad/

=
Beasts of the Southern Wild is a 2012 Oscar nominated film, screenplay by Lucy Alibar and Benh Zeitlin

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18 thoughts on “What A Tale My Thoughts Could Tell

    • To say a piece of writing “reads like racing thoughts” is just about the highest compliment I could hope for! I guess all the topics here are quite heavy…but the guilt when you try to help an aging relative–that you can never do enough or give enough or be enough–and the problems just get worse and worse– this topic is uncomfortable, hidden and yet pervasive. I hope this post gives people permission to talk about it, and come to their own peace, like I finally found this summer…Thank you! H

  1. Oh, Hallie…Gordon LIghtfoot…the Hermitage…”unselfish grace and goodness”…forgiving oneself…overwhelming and oh so touching. Thank you for honoring my Daddy and me with this post. You are a gift.

    • Thank you, Joanie. The example I use– you of calling your dad with the TV schedule in hand– was only one of your innumerable acts of love and generosity; I used that one because it appeared so simple and so pure, yet I knew it was so hard, day after day after day. And despite all you did, you beat yourself up that it was not enough.

      And in witnessing that, you were my gift…because I saw myself in you–the power and pain of the guilt that we could not do enough for our failing parent– when in fact we were running as fast as we possibly could, and the choices themselves were abhorrent (or the word I chose for this piece, unmerciful).

      And then Diane said, you do what you can do. And yes, her words freed me, or rather, I gave myself permission to let it go. I feel a Disney song coming on…

      And speaking of songs, yes, Lightfoot. We know the significance. 40 years later, those words reverberate with the power of atonement and absolution (and just yesterday I stumbled on his simple summation: peace through acceptance. ).

      It took me a long time to get to this acceptance. The guilt was suffocating. I know I am not alone, but it’s something that is hard to talk about. So once again, I hope in writing this post I can help people see things through a different prism…which is why I concluded with the line from the film. Bravery; quite a different perspective…

      Thank you for everything, H

  2. The lovely interweaving of words & art & music — each more than the sum of its parts….And as usual, a most moving essay!

    • You are right (as usual!)…all three components have become key to telling the story, and Vuillard in particular has a way of capturing the psychological key. It is almost as though I could just post his work and you could fill in the blanks…maybe that is the future of A Swift Current!

      But in the meantime, thank you for your comments about the words too! It is hard to explain guilt; in part because it defies all logic. I hope I captured, at least in part, the shadows and suffocating nature of guilt (though I know not as well as Vuillard in that first painting!).

      And the healing power of words…cliché that it might be…we can never underestimate how a simple statement can make a difference in someone’s life…

      Thank you, as always, H

  3. What a wonderful post, Hallie. My mother died 22 years ago after a long and horribly debilitating illness, and even now there are times when I beat myself up over not handling it “right” or not doing enough. Thank you for sharing your journey through the darkness and reaching the light of accepting that “we do what we can do”.

    • Janie, thank you for sharing your experience. Sad as it is, it doesn’t surprise me that you still beat yourself up two decades later…I think we are so reluctant to discuss our sense of guilt, however unfounded, that we never confront it…and it burrows in deep.

      I don’t mean to sound like a therapist (!), but the process of writing takes me to the place where I can confront and try to understand what is going on. So perhaps when my friend said those words, I was “ready” to be free of the torment. Also I think my spiritual upbringing, believing both that absolution and redemption are possible, and that words can heal, laid the groundwork for me to understand that moment. The effect was immediate; the next day I ran into my friend in a grocery store and told her you changed my thinking! But really she changed my life…

      It is so moving to me that others who are reading this essay are being freed by those words too.

      Onward and thanks, Hallie

  4. Thanks for this. It was hard being 2000 miles away from my mom, carrying for my own small children. We tried a nurse at home but she fought her. My dad had his own heart problems and the stress was literally killing him. We had to get her in to a specialized facility. It took three tries but he found a really good, loving place. Yet they had promised each other they would never do that, never put one in an institution, always care for one another. They did not know what curves the future would throw, how impossible it would become. He never stopped feeling guilty until his death. I carry that on. I do know there wasn’t much else I could have done. I wish I could have foreseen the final hospital admission and flown out to be there with Dad as she died. I wish she could have spent more time with my children in her final years. I wish I could have been a less difficult teenager with her 20 years earlier. There are lots and lots of regrets!! But you’re right–one does the best one can and no hindsight can really reconstruct the circumstances in which we struggled at the time.

    • Thank you for opening your heart. I hope my musings can help you in some small way get to the other side of the wishes that we can never fulfill, as my friend did for me. It is especially poignant that your parents made a promise that simply could not be met…if I had a wish now, it is that we are able to talk to each other about our futures in a way that is realistic and open. And not have these expectations that we be supermen and superwomen…

      And as for being a difficult teenager, I think every day about the roadblocks I set to my heart. Even now, when my feet hurt after a long walk, I remember my mom complaining about the same thing, and how I looked on with indifference. The only solace– it seems universal…its teenagers’ job to be indifferent, young career people and parents’ job to make their way in the world, and now our job to think back with fervor on the path that was laid for us–with a whole new and profound appreciation.

      I am in the process of throwing out my mom’s nursing home records…literally and figuratively.

      Onward, Hallie

  5. Your writings have helped me to realize “that I did what I could do” for my 97 year old Mother who lived 100 miles away and I visited almost every week for 1 day and phoned her 2+ times each day for many years. Other members of the family who lived 4-15 miles from her home did not take an interest so I tried to make up for those that were unwilling. I have felt guilty for the weeks I missed visiting her while on a trip. She did not become ill until she was 97 and was able to live at home until she became ill–what a blessing. When she had problems with her heart she only lasted 2 weeks. She was an amazing woman and did not want to leave her home. No matter the circumstances there seems to always be guilt that you did not do enough. We do what we can do and I have to remember to stop having regrets and beating myself up. Thank you Hallie for your beautiful writings. I do not want to stop receiving these and it is something I have looked forward to receiving each time.

    • Thank you Barbara for your reflections and kind words. The last quote of the post, “the brave stay and watch it happen. They do not run.” describes your situation, I think, while the other people in your family looked the other way. It strikes me that you completely fit my description of the person who tries to do it all and thinks she is not doing enough. Look what you wrote…you literally lifted boulders up mountains, and it was crucial to pause and take a break for you.

      As I have written before, guilt defies logic. But I hope in some small way, through this post, and as you ponder all you did for your amazing mother, you come to a sense of accomplishment and pride. You are brave.

      It is so lovely that you look forward to receiving these. I know my “production” is not predictable…and each essay takes a really long time…and though the story of our decade is concluding, as long as I have observations and reflections, I will continue…

      Thank you again, Hallie

  6. This was an amazing post. You had the courage to say what we as children of a parent in this situation is afraid to say. We are trying to see my Mother more. I am posting more pictures of her and making sure now that all holidays are spent with her. We are doing what we can. Should my mother have remained with me in my home until she was too sick for me to care for or was moving her to assisted living the right answer for her? We don’t know but what we do know is that she is doing well, is happy and cared for the way I could not care for her. Thank you Hallie….love you.

    • I just read a quote which I think applies here: “the role of the writer is not to say what we can all say but what we are unable to say.” (Anais Nin). In the last two essays in particular, I tried to confront two topics that are so difficult to discuss…money and guilt. If in some small way these essays can facilitate a dialogue/thinking about these tough, do-not-touch topics, I am grateful.

      I would like to add that it looks so different from the perspective of an outsider…just like the examples I cite in the post, I know you are doing yeoman’s work for your mom, but the questions you pose above tell me you are exactly where I was when I was going thru it–constantly doubting, always thinking I could do more, or there was a different, better answer. It only took the perspective of years and a “revelation” to tell me that all the “solutions” were deeply flawed…

      Like your mother now, my mom was well cared for and often very happy and finally I can stop beating myself up over the should haves and if onlys…two phrases I would love to eliminate from our language!

      Thank you again for commenting here. I welcome comments and different perspectives. All my best as we celebrate our veterans, Hallie

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