My Zuzu by
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(163 Stories)

Prompted By Regrets

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I’ve written about my beautiful kid sister Laurie – my Zuzu – who died in 2015 at age 61,  after a long and painful battle with MS.   (See Take Care of Your Sister,  Look for the Helpers –  for Laurie)

If you’ve read my stories you know how gifted Laurie was,  and at the time of her illness an NIH research biologist working on the genetics of cancer.

But Laurie’s private life was quite tragic.   Her husband Andy was always a very difficult and belligerent guy,  and their only child,  a beautiful boy named Michael is severely autistic.

When Michael was diagnosed at age 2,  family and friends rallied in support.   My folks were ready with financial and whatever other help they could give to see that Michael had the best special schooling,  tutoring,  therapy and other available interventions.   But Andy very ungraciously refused all help and shunned any advice..

And then my sister’s MS diagnosis came on the heels of Michael’s,  and to our dismay Andy again refused help and advice.   He antagonized Laurie’s friends,  basically  forbade our visits,   and insisted on keeping Laurie home when it was obvious she needed 24/7 nursing care.

My parents didn’t live to see my sister become ill – and for that I am grateful.   But I was left with the unbearable burden of knowing she was suffering,  both physically and emotionally,   and I felt I had to intercede.

Laurie was living in another state,  and I started researching legal steps there I could take,  the medical and social services that could help,  and the possibility of bringing her to New York to be near me.   But my brother-in-law was her next of kin,  not I,  and Michael’s situation was another consideration,  so I felt my hands were tied.

Then fate intervened,  Andy suffered a heart attack at home,  called 911,  and the responders found my bedridden and incoherent sister in the house as well.   She and Andy were taken to the same hospital,  but Andy was soon transferred to a cardiac unit elsewhere.

By then Laurie’s  condition was dire –  incredibly Andy had stopped her neurologist visits and her medication thinking he knew best how to treat her.   Seeing this,  the hospital staff asked me to stand in as her temporary medical decision-maker which was possible while Andy himself was incapacitated.

Then I was asked to take the next step and petition the court to become my sister’s legal guardian,  which I did.   Thankfully Michael was able to become a resident in the county-run special needs program in which he had been a day student – a placement that has been a godsend as my nephew has gone on to thrive there.

Laurie spent several weeks in the hospital and when she was stable enough,  we transferred her to a wonderful nursing home.   There she spent two years under the care of an amazingly compassionate medical and nursing staff,   and eventually a caring hospice team.

I’m grateful for the loving care my sister had during the last years of her life,  but my greatest regret is that I didn’t act sooner,  and it will forever weigh on my heart.

Dana SusanLehrman

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: Multiple Sclerosis

Comments

  1. John Shutkin says:

    Heartbreaking story, Dana. And I am reticent to tell others how to feel. But I do think you are being unfair to yourself for your regrets with regard to Laurie. You were there for her — and much more — when you could be and, as you admit, before then your hands were tied, both due to the logistics and the law. Please just know what a caring, loving, compassionate sister you were.

  2. Betsy Pfau says:

    This is a most difficult story, but not of your making. I understand you felt powerless, but remember that Laurie taught us the difference between guilt and regret. Andy was in control; you were not. Fate intervened and you were finally granted the opportunity to get the proper care for both your sister and your nephew. You did all you could for both. Andy is the villain of the piece. You cannot regret the choice your sister made for her husband, only sorrow.

  3. My heart goes out to you, Dee, but I join in John’s sentiments. You did the best you could. Each and every story on this prompt has reminded me of a regret of my own, and yours made me wish I’d been able to save my brother from self-destructing. Sometimes things really are out of our hands despite our best intentions. And let’s not forget the 20/20 vision we now have. I wish you peace of mind, my friend.

  4. You sounded positively energized, not passive complacent. It’s very hard, almost impossible, to figure out how to deal with a difficult marital partner in a situation like that. For all your regret, it seems things went well in the end; what a blessing.

  5. Marian says:

    I can only echo the other comments, Dana, about what an outstanding effort you made to be there for your sister and nephew, despite the long odds. You can think about what you did do so selflessly when that old “regret” feeling starts upwelling.

  6. Suzy says:

    Oh Dana, my heart goes out to you! Your first Regrets story was so light-hearted, although the things you mentioned there were certainly regrettable. But this story is on a whole different level, and is almost unbearably painful. You did everything you could for both your sister and your nephew when you were finally allowed to. I know you regret that you didn’t act sooner, but it was not possible. I agree with Betsy that it is a cause for sorrow, but not regret.

    • Thanx Suzy, yes those years seeing my sister suffer were painful, as was the contentious court battle I fought against my brother-in-law for her guardianship.

      But I did achieve the best outcome possible for my sister and my nephew, and I appreciate the kind words from you all.

      It will always be a sorrow, but I’ll try to give up the regret.

  7. Laurie Levy says:

    Yours was a very tragic situation because there really wasn’t much you could do until your brother-in-law’s heart attack gave you an opening. Thank goodness you were able to find a good situation for your nephew. And the loving care you were able to provide for Laurie during the last years of her life is such a blessing. I understand how you regret that you were unable to intervene sooner, but once you could, you gave your sister peace of mind about her son at the end of her life. That’s no small thing.

  8. Khati Hendry says:

    Dana, I have to agree with everyone else–you were there when it was possible, and never stopped caring. This is a very sad situation, and so sorry everyone suffered. So often we feel guilty for not being able to save our family and friends from abusive situations, addictions, medical conditions, or for just surviving when they didn’t. But it is not your fault, it is just very sad. I’m so glad you were ultimately able to provide help for your sister and nephew, and hope you have some peace from that.

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