Bittersweet Symphony

A Swift Current Bittersweet Symphony


Vuillard– Child at the Door, Yale University Art Gallery 

I listened to her message;

the social worker’s voice

–always calm, friendly, familiar–

now imbued

with anxious insistence

Please call

ASAP

Your mother is fine but

We need to speak with you today!

I knew my mother wasn’t fine

but I didn’t expect the latest twist:

Hallie, I have upsetting news–

your mother is screaming

night and day.

She is disrupting the other residents. No one can rest. They need their sleep so they can get better!

We have no choice, Hallie—

we need to move her—

TODAY!

My warrior mother was back.

But they were moving her–

and I knew

this call

was the beginning of the end.

From the day she entered the nursing home,

my mother had lived in the same bright, cheery room

right by the front door.

For more than a decade, she waved to visitors and watched the activity–

with her prime vantage point,

she even thought she was a member of the staff–

but I haven’t seen a paycheck yet!

And now she was losing her post.

We are moving her to a different wing where her screaming won’t bother the other patients.

I don’t understand. It won’t bother them? Won’t she still upset people?

They won’t notice. They are too sick to notice.

I’m confused. They are too sick to notice a screaming woman? What am I missing?

I’m sorry, Hallie; but this is not up to you;

We are not asking you;

We are telling you.

Until that moment,

I had done everything I could

to avert a move from her room.

I knew

for dementia patients,

routine is paramount–

every day; every thing;

exactly the same.

And I knew my mother;

right or wrong,

I believed

a move would kill her.

For more than a year,

the prospect of a move loomed over us

for one simple reason–

my mother was running out of money.

I had paid the nursing home bills from her savings, then a small inheritance, and finally from the sale of her house.

At first, I didn’t worry;

I thought the proceeds from our family home would sustain her for the rest of her life.

And it did—for close to a decade.

But as the balance steadily declined;

I grew uneasy.

I stopped opening bank statements. I knew what they said.

And what they didn’t say.

Where will we get the money?

The obvious answer; we wouldn’t. We would spend her assets; apply for state assistance. Some people call it welfare. In California, it’s called Medi-Cal.

But Medi-Cal would not pay for her bright, cheery room; she would be moved to another location on the premises—

her routines–

her modest little corner of the world–

gone.

I had already taken away her beloved home. I could not do it again.

My solution:

I paid the bills

from my savings;

negotiating with myself

over and over and over again;

what is fair–

how much is enough–

her welfare vs.

my future.

Night after sleepless night

I battled my conscience–

If she moves to get Medi-Cal

and doesn’t survive

Tossing

I could not bear it

Turning

she paid for my education–

bought my first car–

Tossing

if I move her

Turning

and she dies

Tossing

I’ll look into Medi-Cal…

Turning

NEXT year!

But I can’t

Tossing

move her

Turning

now–

Tossing

not

NOW…

Hallie,

we are moving your mother;

we are not asking you;

we are telling you.

And Hallie,

her new room is Medi-Cal eligible;

I am sending the forms.

Please Hallie,

you’ve done enough.

It’s time to fill out the forms.

We will help you any way we can.

Now hold on, the charge nurse needs to talk to you…

When are you coming?

In a few weeks–right after jury duty.

Good. You need to come.

Is—it—imminent?

No, but your mom has entered the last downward spiral. That’s why she’s screaming.She has entered the last phase. Then she will go into the quiet period.

The quiet period?

Haven’t we had the quiet period?!

No. In the quiet period, she will lose everything—

eating, speech,

everything.

How long will this quiet period last?

Well, your mother is very healthy. It could be two to three years.

(Oh, please God, no!)

I have my plane ticket.

Good.

It’s a bittersweet irony;

despite sleepless nights,

willful determination and sacrifice

to keep her in her room;

at the end

money had nothing to do with it.

Her disease had taken her to a place

where no bright, cheery room could camouflage the horror in her brain.

We were descending down the spiral of disease—

entering the years of quiet hell.

They had no choice;

they moved her.

But still

I was not ready;

those Medi-Cal papers became

another envelope I could not open.

A few weeks later

I finally studied the forms.

We were allowed to spend her remaining money on certain essentials;

a burial plot, for example.

We would be allowed to keep a small amount in the bank;

And I would need to find her original Medicare card (copies not accepted).

(Wow, the original card… I know I’ve seen it somewhere…).

The next day

the phone rang.

The caller ID

nursing home.

For years, I had eyed those words with trepidation. But they had called so many times during the last few weeks

I did not hesitate as I lifted the receiver.

And then I heard her voice.

It was not the social worker. It was not the charge nurse.

It was the new head nurse;

the new head nurse

who had never once called.

And in that moment

I knew;

my warrior mother was dead

(oh please God…).

Minutes later,

the phone rang again:

the charge nurse–

Oh Hallie! We always get a text when someone dies. I almost fainted when I saw the message. My husband had to hold me up. Your mother! I can’t believe it! I saw her– just a few hours ago–she was the last person I saw before I left. I know what I told you…I believed what I said…I am so deeply sorry…

It was my turn to be the rational one.

It’s alright. I know you did everything you could. It’s time.

And here’s the catch:

I believe it.

Looking back, I realize,

I spent a decade

trying to orchestrate the impossible.

I was tormented about her care; a move; no money;

And in my shattered vision

I lost sight of the most basic tenet of this vicious disease;

I could control nothing.

Dementia had eviscerated my mother;

it promised only bitter years of quiet hell

with no more sweet moments to assuage me.

And even the most compassionate, experienced professional could not anticipate its path nor ease our fall.

Only three weeks after the move,

the phone rang;

my worst fear;

my urgent prayer;

my mama–

a warrior to the end.

Alleluia.

A Swift Current Bittersweet Symphony

Vuillard, The Artist’s Mother– Minneapolis Institute of Arts

The title Bittersweet Symphony comes of course from the song of the same name by the Verve. I leave it to you to research the lyrics and determine if they apply…

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31 thoughts on “Bittersweet Symphony

    • Thank you. I know it is sad…there are so many themes in this one that are the underlying themes for the entire set of essays…I feel it is a pivotal entry in the series, and once again the writing process brought me to an understanding that had eluded me. Again, I appreciate your support of my efforts here, H

  1. Dear Hallie, This is a chilling post – even a difficult situation can get worse. I did not know about your economic challenges. Thank heaven for her that you had the means to keep her in a bright cheery room for as long as her mind allowed. This whole brain thing is another slice of reality, no less mysterious than any black hole or undiscovered universe – my opinion. My dad couldn’t find his scissors today. Later he found them in a very logical place, but in the meantime I saw him look everywhere, including between the two hamburger buns on the plate. I never cease to be amazed. K

    • I never thought of the word “chilling” but perhaps you are right; I trust your way with words…in the past you have commented on the humourous aspects, and I know you are right…I must say I sort of chuckle at your dad looking for scissors in the hamburger BUT I know at the moment it is wild “theater of the absurd” and funny in only the most bizarre sense. Your “black hole” analogy is apt…which is why in an earlier essay I wrote that every time I crossed the threshold of the nursing home, I had to remind myself that I was stepping into an alternate reality.

      As for the financial aspect, originally I wasn’t going to mention it, as I cannot advise people on the laws or rules, but recently I attended a roundtable at Columbia U, and one woman asked about the financial part, and why no one ever addresses it. The speakers managed to completely skirt her question, referring her to a book. At that point, I realized there were emotional aspects to the financial that are terrifying, and I had to recount our experience– even in some small way. In the end, I realized I could not tell the story honestly and leave the financial turmoil out.

      Yes, you were right…thank heaven she was in her room as long as her mind allowed. There are miracles in the dark, H

    • Thank you Mary for your continued support of my efforts here. Yes, heart wrenching–dementia and death–topics not suited for a summer blockbuster (one reason I waited until September for this post, also it went through many more revisions…). I had to circle back and tell this tale; and I know you know it is all hard and it is life, in all its goodness and sorrow. Thank you for commenting, H

    • Thank you, Sarah. I chose the title late in the process…it suddenly came to me…and I love the song too…

      “I will take you down the only road I’ve ever been down, you know the one that takes you to the place where all things meet…yeah.”

      I know you know,
      H

    • I know this is a tough one…today is exactly one month before the 4th anniversary of my mom’s death…the opening phone call happened about now…four years ago…

      It is like yesterday, and yet, thanks to the writing, I see it through new eyes, H

  2. I remember our conversations about your mom throughout the years — as you headed down to see her…or had just left — full of emotions — good as well as stressed, but nothing close to what you are sharing through your writings. I so appreciate you letting us see depth and breadth of your journey through your beautiful words.

    • I remember how my friends held me up through the years and yet, there were some things that were so deep and private even I could not grasp them at the time. And how do you express a moral dilemma, especially when it involved money, out loud? I think there was no “right” answer, only an answer in the heart. But I hope in sharing it, others who are and will go through this turmoil will know they are not alone.

      Your support then and now buoys me, H

    • Thank you for saying it is good to keep us remembering…one of the reasons I write and share these essays is I believe all these things are right below the surface for so many of us, and if we face them, and ponder them, it will help us get to the other side of all the pain. I sound like a therapist I guess when I say that, but I know in writing this one (indeed, all of them) I gain understanding of the events, my emotions, and reach a sense of absolution (yes, a good old Catholic word!). Thank you always, H

  3. Beautifully written. We fight so hard to keep what we think they want, need. You were an exceptional daughter. Sometimes the changes we fight so hard against, turn into blessings. Peace to you Hallie.

    • Thank you Kay, and I want to thank you here for recommending me for the blogging award, which is a wonderful reinforcement of my efforts. I hope my writing on A Swift Current in some small way helps those who face these tragic circumstances now.

      Your observation is brilliant: Sometimes the changes we fight so hard against turn into blessings. It is a good rule, isn’t it, in all things, and particularly I think with dementia. I cannot say enough good things about my mother’s caregivers, and I hope my recounting of the charge nurse’s call reveals the depth of her caring. She was the same woman who, in an earlier post, ran to the rescue and had a quick-on-her-feet solution when my mother was having a meltdown. I will never forget that she said her husband had to hold her up

      …as we continue to hold each other up, thank you again, H

  4. Dearest Halllie,

    Your story is so familiar….we too spent everything my mother-in-law had from the six Social Security checks she had never cashed to the $80,000 cash in the safe for a rainy day (they lived through the depression) to the quarter of a million we got when we sold her home. Next stop was a Medi-cal nursing home. God answered our prayers and took her home so she did not have to endure that torture. And it would have been torture to her after she took care of her husband in one for many years prior to his passing. Your poignant description brings back so many sad and painful memories. I pray my children will not have to endure such suffering for my sake.

    Love, Sharon

    • I was hesitant to introduce the topic of money but it is an integral part of the eldercare issue and I ultimately decided that to ignore would not do justice to either our story or the readers’ understanding. And the issue of finances were a pivotal part of the experience, from the sale of our family home to those last many months in the nursing home. Through the writing I hope too that the care and compassion of the nurses come through; though I too shudder at the prospect of being a patient with no resources…

      I think your willingness to share numbers is important as we think about the crisis in care going forward.

      Thank you, Hallie

      • Your post was beautifully written and I think you were right in mentioning the money issue because it is one of the things that we need to keep in thought for our own future care and it is truly an obstacle for the family of the one in care. Barbara McManus

      • Thank you for your comment! Going forward, if I find resources that explain some of the issues, I might share them here. I know I was confused about many things; for example, I had thought there was what they call a “look back”…that before accepting my mom for Medi-Cal the state would examine 5 years of financial records to make sure money hasn’t been transferred to other parties etc. I was prepared to turn over five years of files. But when I studied the forms, all I found was a 3 month requirement, not five years. Perhaps in my initial (and only) perusal, I missed something, but I remember being quite surprised.

        And part of the difficulty is of course, these are questions that should be addressed, even learning the regulations in your own state, long before illness strikes. But who wants to do that? It falls into the category of the many things we would like to avoid. But this essay illustrates your comment about the obstacles, emotional and otherwise, that lack of planning creates for families.

        I am sure my mom thought she had planned, as a Depression survivor she understood all-too-well the difficulties we could face. But I am also sure she did not foresee living to age 95…

        Thank you again, H

  5. I’ve lived through a similar nightmare. A sad, hopeless ending to a loved one’s life. Everyone’s journey (I hate that word, but that’s what it is) is unique, but your experience with your Mom certainly rang bells for me. Be at peace.

    • Thank you Jeanne. Just the other day, I told a friend how much I hate the word “journey”– so right off the bat you and I share that view; but like you, I cannot think of another word that adequately captures the experience. I do feel at peace and it is this writing, and the response from readers, that takes me to a new place and a better understanding.

      I welcome you to read the other essays that have preceded Bittersweet Symphony, I have attempted to create a portrait of dementia with both the tragic and (for me at least) uplifting moments given fair representation. And in the end, the entire experience (journey!) gave me a new appreciation for what matters.

      Thank you for commenting, H

    • I so appreciate your comment. I have said this before, but one of the reasons I am writing these essays is I felt so alone during those years. I hope my efforts here will help people as they grapple with these or similar issues…it is comforting to know you are not alone…

      Thank you, Hallie

    • Thank you. I responded to you previously but I want to comment again… You speak for so many of us is a humbling response to my efforts here. I try to capture a time and place that reverberates years after for so many of us. I am honored when I hear from people who are going through this struggle now, and from those who tell me these reflections help them reconcile unspoken turmoil in the past…

      Again, thank you, Hallie

  6. You have helped me. This past week I got the call at 6am from the Assisted Living home my mother is in that they were transporting her to the hospital. Possible Heart Attack! As it turned out she did not have a heart attack but some heart related issues and after two days they released her with some meds and with an attitude now that each day is a gift. She turned 91 last July. My Mother, although very cantankerous and despicably rude to all her caregivers is still very much aware of her surroundings and her situation. She made a comment to me while in the hospital that she was ready. Do you think that is true? Do the elderly really believe that or do they say that for some other reason?
    This most recent post was the one that touched me the most. I thought about it for days. This is real life. I always thought I had years and years to think about such things but now it is later than we think. Love you Hallie for bringing my brothers (who are in complete denial) and I into the real world now.

    • Francesca, this is a very moving comment and I will continue to think about your questions…

      First, I believe dementia patients are by definition cantankerous, and your mom might not be responsible for her actions. I think especially in the initial phases, when the confusion is beginning, it must be so completely frustrating and frightening that ill temper combined with the receding social filters adds up to an explosive combination. Please always remember that…the lovely woman who visited my mom daily, and who my mom adored, was sadly the recipient of a lot of my mom’s bad actions/temper…my mom could be mean, hurtful and even violent (caused by the dementia), and somehow our caregiver was able to still show my mom only patience and love while looking out for every need.

      I do believe people can feel “ready.” As I wrote in one of the early essays, during my very last visit with my mom, as I said goodbye, I used my usual phrase, I will be back soon. Her response, What if I die before you get here. She had never remotely said anything like that. Did she know? I will of course never know…

      I had another friend, an older woman who as they stared at Machu Picchu told her companion, I am ready to go now. A few months later, she was killed in an auto accident. Was that just an idle statement, or did she feel something in her heart?

      And of course, your opening comment You have helped me is such an extraordinary gift to me; the reason I decided to do this and the fulfillment of long hours staring at a blank page…and to inject my favorite quote (from Stephen Sondheim) : White. A blank page or canvas. So many possibilities…

      I almost did not write about the money issues in part because I have no solutions or even suggestions for people. Yet I realized that it was an integral part of our story, and to ignore it would not be honest. I feel lame in counseling people to plan before these issues come up…because as I wrote. I never could get my mom to discuss the possibility of leaving her home. But maybe, if people are braver and more persistent than me, they will find ways to broach these topics…real life, as you say…

      Thank you again for your thoughtful responses through my endeavor with these essays…
      H

  7. Thank you for reminding me about the bad behavior as I did not realize that could be a sign of dementia. I have to think about this and discuss this with my brothers as well. You are a gift to me.

    • Early in the essays, I tried to describe some of my mom’s startling behavior (like when she tried to scratch me). Perhaps my essays are light on these descriptions; there are entire incidents which frankly I cannot recall, and I think my mind blocks them–they were so painful I cannot access them in my memory.

      But also, I think that perhaps the normal reader will discount them (my mother never would do that…). My cousin shared with me that he reacted just this way when I described what was happening, only to be shocked when his mother started to do similar things (and because he remembered my stories, he began to understand what was happening…).

      I think all of us do not, or do not want, to understand the power of this disease. We all think on some level that our resourceful, wily parent will outsmart the disease. It is overwhelming to finally realize the disease is in control, not her, and not you.

      My heart is with you in this…I wish I could do more…H

  8. I couldn’t breathe when I read this … I can’t find the words except to say that this happened with my healthy (no dementia) mother, losing her beloved first room inside the front door, because it was too far for the nurses to go to her …. and now my husband is here at home, but will he remain here?

    • I apologize for not responding to your message; I did not receive a notice from WordPress and just now stumbled on your comment. I hold my breath when I read your beautiful postings; so reminiscent of our struggles; such courage in your words and in your life. I hope the next piece, which I am working on now, speaks to you. I hope that by sharing our struggles, both of us help others who are on this path. Love to you, Hallie

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