Privilege

Summary: Discussions of eldercare issues are often imbued with a sense of burden and pain. While in no way do I intend to downplay the issues confronted by the elderly and their caregivers, I strongly believe the last decade of my mother’s life taught me what matters. Amid difficulties and struggle, our bonds became stronger and deeper. I am honored to share my perspective to Caring Across Generation’s #blog4care as together we address the needs of our elder loved ones. For more information, http://www.caringacross.org

 

A Swift Current Privilege, My Visits Were for Me

Edouard Vuillard– Mother and Daughter…

 

…what caring for our mothers really taught us…this part of life that so many people are afraid of…the act of carrying on a conversation with someone who can’t speak to you — and being there when they are dying—

there was a sense of privilege…and a sense the ‘Gosh, I was so afraid of this, I didn’t want to do it; I didn’t want to be here.’

But being here is starting to feel like a good thing, a good part of life—

something that we avoid in this culture that actually is a rich experience, albeit painful; it’s actually so much a part of life and so many people never get to be in it.

~Will Scheffer, interview on Fresh Air, National Public Radio

 

Your flight to Los Angeles has been cancelled.

What? No!

We’ve put you on the next flight. You’ll arrive at 3 PM.

But my mother…

I started to cry.

I have only a little time this trip–a few extra hours–this trip is for work…

and

now

I won’t get to see my mother.

The American Airlines agent looked down, tapping her keyboard. She placed a call—exchanged a few words– printed a boarding pass

You’re on the United flight

in one hour;

Find the tram–

Don’t stop for anything–

Run!

Until that moment

I thought my treks to the nursing home

were for my mother.

Bearing flowers and chocolates,

I’d brighten her day;

check on her care;

play the loving daughter.

In tears at the airline counter,

I realized;

my visits were for me.

And for the next ten years

I took joy from those visits

in spite of–

because of–

our cacophony of emotions;

every visit

a wild ride between

tenderness and anguish–

endearments and allegations–

astute observations and twisted fantasies—

all with roots

firmly planted in our past.

As my mother lost the ability to edit,

her words were often not

polite;

appropriate;

acceptable.

She said what she thought–

And I began to know my mother;

unfiltered;

unequivocal;

real.

But throughout our decade of dementia, I could count on one thing; she always welcomed me with outstretched arms and a redeeming grin —

(I knew it would be you! I had a feeling you were coming! I want a hug!)

until

the day

she didn’t.

I’d driven to the nursing home from the airport. My mother was in the dining room. She’d just finished lunch.

I stood in front of her, smiling broadly

Surprise!

She gazed up at me. A tentative curl of her lips; a slight nod of her head:

Hello.

I always knew this could happen.

Do you know me?

Yes, I know you. You’re Irving Berlin’s daughter!

Well um, um, no,

I’m Hallie.

That’s funny. I have a daughter named Hallie.

Yes! That’s me. I’m your daughter– Hallie!

No.

I would know Hallie.

My Hallie is

not you.

I always knew this could happen.

But I was determined. I’d travelled 3000 miles and I wanted my moment—gleeful recognition, tight embrace, beaming smile.

I tried again.

Well, what if we played a game? What if I answered questions only your Hallie could answer?

I do not want to play that game.

You would think, after all these years, I would get it.

I didn’t get it.

And so–as if words could release her– I talked. Her responses were vague; cool; reticent. She told me that she liked the facility; she was learning new things, like how to eat with a fork. She’d never used one, she said. It was difficult, but she thought she could do it.

I was relieved when one of her friends arrived;

(look mama, she knows me!).

As her friend and I started chatting,

my mother became exasperated:

Would you two please leave!

But mama, I just got here. I can visit. I have all day!

LEAVE!

Her friend implored

Please don’t go; she loves you so. She talks about you all the time.

GO!

She doesn’t mean it. Don’t go…please don’t go…she will be so sad…

GO NOW!

I left.

I wandered around the hotel; watched a movie;

and realized

she made sense.

A stranger acting as though she knew you;

insisting she’s your daughter when

clearly she is not.

And the imposter wouldn’t leave–

terrifying!

I would tell me to leave too.

I returned the following day. She was sitting in the dining room.

Do you know me?

Yes! You are the Archangel Gabriel!

Her next words were gibberish; the invented language of an infant; startling sounds from a 94 year old woman.

I left.

On the third day, I found her sitting with her nurse;

she looked at me steadily;

her eyes did not light up;

her arms did not reach out.

Do you know me?

Yes, she said,

you are my baby.

Her nurse turned away.

I stayed.

My visits were for me.

 

My Mother has done it. She has made me see what she wanted me to see…

Together we are quiet and still.

                                                                        ~Anna Quindlen, Every Last One

 

A Swift Current Vuillard In The Shade My Visits Were for Me

Edouard Vuillard– In The Shade

 

Edouard Vuillard, Mother and Daughter against a Red Background, 1891, Private Collection. Vuillard painted this image when he was just 23 years old.

The Fresh Air interview with television producers Will Scheffer and Mark V. Olsen originally aired on December 23, 2013 on National Public Radio. Scheffer and Olsen produced the HBO’s series “Big Love” and ”Getting On”. Their fascinating interview (entitled ‘Getting On’ With It: A new HBO Show Doesn’t Tiptoe Around Death’), is available at the Fresh Air website and as an iTunes podcast. Interviewer Terry Gross, Scheffer and Olsen explore several aspects caregiving for aging parents, as well as for your partner. According to the interview, while they were producing Big Love, Olsen flew from LA to Nebraska every other Friday night to visit his ailing mother, flying back to LA on the 5 AM flight Monday morning; Scheffer also made the Friday to Monday visits to his ailing mother in NYC alternate weekends.

Every Last One by Anna Quindlen Copyright 2010 by Anna Quindlen Published by Random House Group, a division of Random House, Inc. All rights reserved.

Edouard Vuillard, In The Shade, 1907

 

Advertisements

13 thoughts on “Privilege

    • I appreciate your response! The emotion of my mother not knowing me is staggering, and I am not sure I am able to express it. My memory of those days is complete numbness (hence wandering around the hotel…) and resignation. When I relayed this story to my cousin, she sweetly responded that if she had known, she would have driven to LA so I wouldn’t be alone…but the truth is, I needed to be alone; I needed to ponder our new reality.

      But ultimately, my mother always recognized me as her daughter after that one interlude. So who knows what happened to her brain those days…and why it went back to recognition.

      To be continued. And thank you for the Bravo!

      H

    • JB~ I used to want to apologize when people tell me they cry, but I now realize that is actually part of my basic reason for doing this…not to go for the jugular or be maudlin, but to confront the sorrow and turbulence. The interview with Scheffer and Olsen just knocked my socks off because their “take-aways” from their experience mirrored mine, including the feeling that this experience is one of the richest parts of life. Yet people don’t want to be in it yet alone talk about it…but writing about it and talking about it truly has gotten me to the other side of the pain…so thank you for your tears, and for telling me, H

  1. You convey your memories so clearly. I feel like I was there in the room with you. Hard for me to not swallow hard as I read all the words in this post and I try to not put myself in your place but I always do. Thank you Hallie for every word you have written.

    • Some time ago you asked me if there ever was a time when my mom did not know me. I think my response then was evasive, but I knew from the beginning of this effort that one day I had to tell this story.

      But since it happened only once (over those two days) and toward the end of her life, for us it was not the full story. Just one of the many permutations, albeit heartwrenching.

      But also, it illustrates how my mother’s dementia was not a straight-line downward slide, but had peaks and valleys, and I think people need to know that…that there wasn’t one day that we woke up and knew this is the end…at least in our case, it was a roller coaster ride until her very last day…

      Thank you for your support and your comments, Francesca.

  2. So beautifully written and I know it was so painful but you learned so much about yourself, your Mother and the disease. You must not stop. It means so much to me as I am going through this disease with a friend.

    • You have no idea how grateful I am for your words. Someone recently told me that my writing is being discussed in her support group. I am so grateful.

      And yes, you hit the nail on the head…I learned so much about myself, and continue to learn through this writing…

      I know the situation with your friend is immensely frustrating, but I also know you can see the world thru her eyes…how it must be for her to have you in her life…the richness of that…

      When I heard the Scheffer/Olsen interview and how each of them took turns alternate weekend traveling across the country to supervise their moms’ care, it made me know true love and sacrifice and honor…yet they didn’t speak of it that way…for them, it was a given, it is what you do…

      Onward, H

      With thanks, H

  3. This is so wonderful! I had no idea you went through such conversations and unintentional rejections – and yet your reaction has such love and humor. Irving Berlin’s daughter! I’l never forget that. Love you – Kathleen

    • Yes, Irving Berlin’s daughter, to which one friend, who happens to be a music publisher commented…“You should get your dna checked; that could be quite a payday!”

      It was interactions like these that made me just fascinated about how the mind works; what is going on there, how did Irving Berlin and the Archangel Gabriel make the cut? And how could I be angry, or even frustrated, when clearly she was not in control? I am grateful to the people who have written to me, telling me that this post in particular makes them view those excruciating visits a little differently…and that perhaps instead of patting themselves on the back for stopping by the nursing home (which is what one person wrote; her words, not mine), they realize that some day they will miss this time terribly…as incomprehensible as that seems now…Thank you, as always, H

  4. Your extraordinary writing gift grows more & more with each essay, my dear friend. You help me remember that shouldering the hard-earned privilege of close-up participation in our loved ones’ decline and/or passing; respecting this painful process that seemed so unwanted at the time, but in retrospect stands as an on-going testimonial (evidence of the real love we have/had for these loved ones) — these are the most important ways we can keep our faith & be our own best selves.
    Much love,
    S

    • Yes…”it seems so unwanted at the time”…and it is…as Scheffer and Olsen said in the interview, people are scared of this for good reason (I did not quote the entire interview (I could have though their observations were so poignant!).

      But when you do it; at least for me and I think for you too, it stands forever as one of the things you did in your life…and to our complete surprise, it turns out to be a rich experience.

      Thank you for your comments about the writing…to be continued! H

  5. I had to re-read this to absorb it. I think it was too powerful for me to fully comprehend the feelings my first read.

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