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http://inpursuitofitall.com http://projectpurseandboots.com Woking mom-aholic writer and pursuer of the lovely living space. My blog is lifestyle/dec...
 
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What a Dying Patient Taught Me about Living

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While working a very busy job as the speech pathologist between several hospitals, the therapist who normally handled home-health patients took a vacation. Why? At the time I concluded principally to inconvenience me. She may in fact have had other motivations. So, of course, on a particularly busy day, I got a call that a home health patient had been referred. To make matters even better, the patient was nearly an hour away. I complained. A lot.

She was a hospice patient. It was a little unusual to have hospice referrals, but they did happen. Swallowing problems are in the purview of my discipline, and a terminal patient sometimes needs help there. Such was the case on this day.

After driving for over an hour and getting lost twice, I found the little cottage where the patient lived. I climbed the stairs and made my way to her. She was bundled up in her bed, covered in blankets, thin and bright-eyed. She told me her problem: she was having difficulty swallowing, and wanted - more than anything – to eat a steak. It was all she was hungry for.

I had reviewed her chart before walking into the house. And although her history and her diagnosis were there for me, one key piece was missing: her prognosis. While hospice means terminal, it could be anything up to a year. I looked at the thin face with the attentive eyes I asked, as kindly as I could, “How long?”

“Two, maybe three months,” she answered.

The numbers failed to match the strength of the voice that responded to me, and while trying to resolve the incongruity in my head, my mouth opened and I said, “I’m sorry. How do you feel about that?”

To this day I do not know why I asked the question. If I had thought clearly, I would have labeled it stupid, invasive, clueless or all three at once. I regretted the words as soon as they escaped.

So imagine my shock when she answered simply, “Emancipated.”

I blinked. “Emancipated?” I asked. “Why?”


And she told me. She told me how before she knew about the quick terminal illness, she’d been diagnosed with a slow, progressive one. How the thought of the slow, progressive one – which would day by day drain her body, her mind, and her bank account – terrified her with its inevitable debility and dependence. How she was afraid she would exhaust her friends and family in her demands for care. How she was afraid of what her world would look like when she ran out of funds. How she was terrified of her quick mind slipping away without even the ability to recognize the loss.

But now she would go quickly. With her loved ones around her, her finances intact, with even a little left for the people who mattered most to her. She would have medical care that would keep her as free of pain as it could until the end. An end coming in quick months with her mind able to appreciate each day she had left, instead of slow years where one day would bleed memoryless into the other.

And in that paradox was her emancipation. Her freedom.

“I see,” I said once she had explained. And I did. With so much depth and clarity that I could feel its resonance in the moment it happened, clear through my body and down to my feet resting on the braided rug beside her bed. Understanding struck in that moment: a gift wrapped in the orange glow of the vanishing afternoon sun. I did not need to ponder to find appreciation, there was no slow realization. I was blessed to see and feel it all in that single glorious instant.

I wracked my brain for her, pulling up every trick I’d learned in my years in the field to make a piece of steak edible for her. She didn’t want hamburger – nothing chopped or ground. She wanted steak, and I wanted her to have it.

And as I left, walking down her stairs while the sunset painted the sky radiant reds and yellows, I savored the moment when “I have to go see this patient,” became “I got to go see this patient.” Because what I wanted to remember most was that moment of transition – when my sour outlook was swept away by a joyous one, when an inconvenience became a celebration. I

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ms_lorelei 5 pts

so so very kind and generous with your words, dear lady.

You make me feel wonderful!

And...I hope your father's journey is as peaceful as it can be. And yours also, as you help him.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

Many people have asked, and yes...she did.

We came up with some preparation strategies, some swallowing strategies and a few other ideas and she was able to get a few tasty bites of steak down.

And I was so, so grateful.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

Real Life with Kids 5 pts

I always know that coming to read something of yours is going to be a special few moments of discovery and reflection.
My father will most likely be entering hospice within the next year and I hope that someone can see past his crustiness (not that this woman was crusty!) to help him like you helped this woman.
Thanks for another beautiful interlude.
Cate

You can read Cate's stuff over at http://reallifewithkids.com Twitter: http://twitter.com/reallifewkids

Mausburger 5 pts

Great story! I remember hearing on "Speaking of Faith" on NPR a someone commenting that in our society, people who are ill seem to be reservoirs of knowledge about how to live well.

At the risk of sounding shallow, did she get to eat the steak? If so, how did you do it?

@benevolentprof
http://lifeconsidered.blogspot.com

ms_lorelei 5 pts

..was a gift.

As are your generous and kind words.

Thank you, Shanon.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

sharmstro 5 pts

"a gift wrapped in the orange glow of the vanishing afternoon sun"

Loved this. Love your writing. Thanks for sharing your gift with us.

Shanon

ms_lorelei 5 pts

...a blessing.

That I was so so lucky to receive.

Thank you so much for your lovely comment.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

I've worked with many patients with ALS. And you're so right - asking the questions is immeasurably difficult.

We're afraid of making you dwell on something you don't want to.

Or afraid our attempts at support will come out like pity.

Or afraid of saying the wrong thing.

Or afraid of facing our own fears.

Yet what we might get from asking the questions so outweighs the risk of blundering.

You're right. We should ask. If for no other reason than in that circumstance, you deserve more than anyone else to talk.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

I felt so clumsy for asking the question, because it seemed - when she told me she was dying - like the answer was obvious and I wasn't paying attention.

But the answer was anything from obvious and I would not have been so privileged to receive it had I not asked.

What you have gone through though is a journey that so many are terrified of ever having to make. And you're right - we don't get to choose. We just find ourselves there and the only choice is function or not function, and...how could we not function for our children?

Much love to you and all those people who found themselves on that road with you. Much much love.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

is simply an incredibly kind thing to say.

I'm so glad you liked her story. It felt so good to share it.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

I don't write about my profession often from this perspective, but the few times that I have, people have enjoyed it so much.

I think perhaps we forget that everyone is a patient at some point, and as a patient it's good to think that people out there care so much that they'd remember them.

And I'm so glad you enjoyed it. Thank you for commenting.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

I'm sorry that it was so stressful! Well, mostly sorry a supervisor made it worse.

I've done all ends of the spectrum, and you're absolutely right - there is an emotional component of working with very ill adults that doesn't exist in most school-aged populations. But kids, especially the ones with the harder conditions, can make my heart ache too.

And thank you for the kind words. I'm so, so glad you enjoyed it.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

...my lovely friend. I am so glad you enjoyed it.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

A wonderful one.

I am very honored to have been the recipient.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

...lovely friend.

I am thrilled too.

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

...you lost both of those important people before you should have.

But yes, it was an incredible gift she gave me.

I wonder if she knows?

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

ms_lorelei 5 pts

...how much those interruptions can give us.

And I'm so glad I paid attention to this one.

Thank you Also-Lori!

Lori, speech pathologist, writer, and business owner, blogs home-family-working-mom drama at In Pursuit of Martha Points. ( http://inpursuitofmarthapoints.com )

Amanda_Magee 5 pts

It is amazing how subtle shifts to perspective can entirely change our lives. What a blessing for you! Thank you for sharing this incredible story!

Amanda

http://amandamagee.com

Peppy 5 pts

What a beautifully written article - and touching experience! What really grabbed me was your question ... you should never feel bad about it because questions help validate the persons feelings.

At least, that is my experience. I have Lou Gehrig's disease - a slow descent into paralysis leading to death. I wish people would come right out and ask the questions I see in their eyes. Questions lead to understanding and, as your experience shows, a potential to share insights that will help someone else look at life differently.

I'm sure your conversation stayed with that patient too.

Peppy

Blueyedame 5 pts

What you thought you might regret turned into a life enhancing and changing moment for you.
My son passed away in my arms after a 5 yr battle with hodgkins disease (intentionally not capitalized). We called that time "cancer world" My 2 younger sons were raised there too. Dad, Grandparents Aunts, Uncles..etc. were all there and no one got to choose. It isn't about choice.
Realizing that early on made the journey more ...tolerable I guess.
Everyone put into that world should ask the hard questions of those in it with us. Especially the more closely involved. Camaraderie is an immeasurable asset.
She gave you a beautiful answer to a beautiful question. You both came away enriched.
That is beautiful.

justlinda 9 pts

The story itself is inspirational, but your presentation of it is beautiful. I love your writing here.

( http://justlinda.net )JustLinda

fabulously imperfect

Twitter @JustLindaSTL

bellebeandog 5 pts

I'm completely serious when i say that I've still been thinking about her, and have wanted to ask you if you had any follow-up visits with her.

I sparkled and hearted you. :)

Liz ( http://www.bellebeanchicagodog.com )

a belle, a bean & a chicago dog ( http://www.bellebeanchicagodog.com ) / @bellebeandog ( http://twitter.com/bellebeandog )

Nobody wants to be Ethel 5 pts

thank you for a lovely written blog. I admire your writing. I also am in the health care field andI never think events like you wrote are important or that other bloggers would want to read. But they are and you have given me something to consider for future writing.

The Patty Beat can be found at  http://pattyabr.wordpress.com ( http://pattyabr.wordpress.com/ ) where The Fearless Cook resides ready to take on your most feared items in the kitchen.

trigirl13 5 pts

I'm a peds speech path. I did long-term acute for 3 months and it was the most stressful time of my life. Mostly because of my supervisor, but I was just really sad to be surrounded by so many unhappy people; and to have patients pass away. I wish I had the strength you do. Your post is lovely :)

-julie

http://tri-ingtobeathletic.blogspot.com

sherrikuhn 5 pts

This post is so wonderful, and something we all needed to read. So happy to see you over here with this wonderful post!

Sherri blogs at Old Tweener ( http://www.oldtweener.blogspot.com/ ), where she writes about parenting and anything else that makes her laugh (or cry) while living in those years between changing diapers and wearing them.

alexandraRS 5 pts

Alexandra  ( http://www.gooddayregularpeople.com/ ) keeps a humor blog, Good Day, Regular People.com ( http://www.gooddayregularpeople.com/ ), where she writes of small town life, raising 3 boys.

The gift you both gave to each other.

Fantastic.

SO happy to see this story shared here.

Cheryl @ Mommypants 5 pts

You know how much I love this post. So thrilled you get to share it here.

Much love to you

xo

Mommypants ( http://www.mommypants.com/ )

writingdianet 5 pts

My daddy took years to go. My father-in-law passed away in a month. Your hospice patient was very wise.
I think it is so cool that you made her wish come true. And what a gift you got in return.

Lavender Luz 6 pts

My dad always told us (and still does) to "love our interruptions."

This post proves his point.

I've volunteered with Hospice, and you did well the one thing that's called for: you were present with this person.

Beautiful, Lori.

From,
another Lori

Write Mind Open Heart ( http://www.writemindopenheart.com/ )...yin-yanging my way.@LavLuz
Examiner ( http://tinyurl.com/oaexaminer )for Open Adoption.
( http://twitter.com/LavLuz )