Look for the Helpers – for Laurie by
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(165 Stories)

Prompted By Caregiving

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My sister Laurie spent the last two years of her life in a Rockville, MD nursing home –  at 59 she may have been the youngest patient there.  I was Laurie’s medical  decision-maker then and eventually her court-appointed legal guardian.

Laurie was strikingly beautiful, her looks and her persona unforgettable.  I always thought of her as truly a Renaissance woman – a gifted artist and an avid museum-goer,  a wonderful cook and a green thumb, fluent in several languages, a writer and reader of poetry, a teller of jokes,  holder of a Harvard PhD,  and an NIH research biologist.

But the ravages of end-stage multiple sclerosis had compromised that body and that mind.

Danny and I drove down from New York to see her as often as we could,  and each time my heart broke a bit more seeing my once vital sister now so frail,  so diminished,  so small in her large hospital bed.

Grateful  for small blessings,  we would take her outdoors and push her wheelchair around the beautiful grounds, pointing out the flower beds and the chirping of the  birds,   We talked and we sang to her,  but Laurie, who had once been so clever, so articulate, so opinionated and sometimes so argumentative, now barely spoke.  Yet once when Danny told a joke, she laughed,  but whether she really understood us,  we couldn’t know.

As Laurie’s guardian I was called by a nurse or doctor or social worker almost daily with questions and reports about her appetite, her weight, her temperature, a proposed change of meds, or any new problem.  I would usually defer medical questions to the wonderful nursing staff who I came to know and trust,  and I went down to Rockville regularly to attend meetings with her treatment team and eventually her hospice team.

My sister died on July 22, 2015 at the age of 61, and although her death was expected and her suffering had ended,  I grieved and I grieve still.

But I’ll be ever grateful for those who helped us through that terrible time – in Maryland all the compassionate caregivers at Potomac Valley Nursing Center,  and the wonderful JSSA hospice team,  and in New York our friends and family and my rabbi who comforted and advised me when I had some hard decisions to make.

Mr Rogers told us in times of tragedy to look for the helpers,  and we found them.

I read this at Laurie’s funeral.

SISTER

My poet-sister,  silent now,  let me be your voice.

I’ll speak of the child you were,  the sweet girl-child with the ten-year bigger sister.  Was I too busy then with my urgent teenage needs,  too busy for a little sister?

“When you’re five,  you’ll grow another toe.”  I said.  Was I cruel to tell you that?

But I read to you,  again and again,  all your favorite books  – The Most Wonderful Doll in the World who had so many beautiful dresses,  and Heidi who went to live with her grandfather in the mountains,  and Horton the elephant who heard a tiny Who.

And I took you window shopping and told you all my secrets.

”These are the dishes I’ll buy when I get married.”,  I said knowingly at 16,  showing you the ones with the berry pattern that I liked best.

And then for weeks you pestered  me.

”Take me to Macys again,”  you said,  “to see your berry dishes.”

But that I could, my little sister.

Dana Susan Lehrman

Profile photo of Dana Susan Lehrman Dana Susan Lehrman
This retired librarian loves big city bustle and cozy country weekends, friends and family, good books and theatre, movies and jazz, travel, tennis, Yankee baseball, and writing about life as she sees it on her blog World Thru Brown Eyes!
www.WorldThruBrownEyes.com

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Tags: Sisters, Multiple Sclerosis, Nursing Homes
Characterizations: moving

Comments

  1. Your little sister was indeed a beauty, Dana! I would even go so far as to say hauntingly beautiful and hope you don’t mind. I am so very sorry about her struggle, and your loss. Of course you know how lucky you are to have had such an extraordinary human being in your life. Your poem is exquisite, and I admit it made me cry. I love your writing . . . succinct and powerful!

    • Thanx BB, yes my sister was hauntingly beautiful, which phrase hints at a underlying sadness in her being.
      My husband took the photo when she was 18 or 19 and it captures her perfectly

      Laurie and I were quite different, perhaps partly due to our ten-year age difference, and the fact that my college years were spent in the relatively innocent early 60s when I lived at home to boot; while hers were in the LSD-laden 70s, living out-of-town at Cornell.

      Two unhappy marriages and an autistic child followed, and then her tragic illness and death.

      I, like you, did the best I could to help ease the way for someone I loved.

      • Not to go off on too wide a tangent, but your husband is a talented photographer to have captured Laurie’s depth and complexity. And not that it was, but the photo also looks like it could have been shot with infrared film, which captures a different wavelength than ordinary film.

        • Thanx! He’s just an amateur, not all his shots look that good and I think my sister was very photogenic!

          But your heart would really break if you saw how Laurie looked the last few years of her life. And the image of you brushing your mother’s hair reminded me of my sister’s. She always had thick, rich chestnut brown hair that she always wore long, but in the nursing home it wasso unmanageable they cut it very short, a sad reminder of something else she had lost.

  2. Suzy says:

    Dana, I am so sorry for your loss. May her memory be for a blessing. I know we Jews say that whenever anyone dies, but those words really do make sense. The poem you read at her funeral made me cry, especially when I got to the line “Take me to Macy’s again.” So sweet, and I’m tearing up again as I type this.

  3. Betsy Pfau says:

    Dana, you have mentioned your sister before, but writing about her now really grabbed my heart. As Suzy wrote, I, too, teared up as I read your story. What a heartbreaking loss. Such a talented, smart, beauty. Though, based on your comments, her life wasn’t easy, even before the diagnosis. Ten years is a huge age difference, so you were more mother than big sister to her, growing up (and, as you said, involved in your own teenaged stuff).

    It sounds like she was given wonderful care and you were involved in every decision, even from afar. MS is a terrible disease and she was taken young. Your tribute to her is lovely. Now that you have shared her story, we all mourn with you, dear Dana.

    • Thank you so much Betsy.
      Yes my sister’s life was not easy – bad luck, bad choices, her own childhood illness, unhappy marriages, an autistic child and then MS – who knows what was avoidable, what was not? Who of us has the answers?

      Should I have intervened sooner, done more? I agonize over it still.

  4. Laurie Levy says:

    Your sister was truly beautiful, Dana. MS is such a robber of a person’s real self. One of my lifelong friends is living with it. Always fiercely independent, bright, and an avid reader, she struggles now to complete a book or to shuffle painfully slowly across a room. So glad your sister was blessed by what Mister R called “the helpers” and by having you as a sister. Your tribute from her funeral is so moving.

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