Literary Lagniappe

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Writing Sara’s Point of View by Marianne Sciucco

8 Comments

My novel, Blue Hydrangeas, is the story of a pair of retired Cape Cod innkeepers struggling with Alzheimer’s disease.  A nursing facility is everyone’s solution for what to do about Sara, but her husband, Jack, can’t bear to live without her.  He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer’s disease.

Jack and Sara retired years ago to the house of their dreams, and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas.  Jack has made an impossible promise: He and Sara will stay together in their beautiful home no matter what the disease brings.

However, after nine years of selfless caregiving, complicated by her progressing Alzheimer’s and his own failing heart, he finally admits he can no longer care for her at home.  With reluctance, he arranges to admit her to an assisted living facility, but on the day of admission, Sara is having one of her few good days, and he is unable to follow through.  Instead, he takes them on an impulsive journey to confront their past and reclaim their future.  In the end, he realizes that staying together at any cost is what truly matters.

So many readers have asked how I was able to write from Sara’s point of view.  After all, she has advanced Alzheimer’s.  How could anyone know what it is like to live with dementia?

Writing Sara’s point of view was tricky because her Alzheimer’s is portrayed in different stages, from the very earliest phase to advanced disease.  Fortunately, as a nurse with years of experience working in both hospitals and nursing homes, I had a lot of practice working with dementia patients.  I relied on my interactions with my Alzheimer’s patients to form Sara’s point of view.

Still, I could only guess what was going on in their heads.  So many were unable to articulate ideas, words, memories, anything.  Yet many could participate in simple conversation, and made pleasant conversational partners, such as the lovely woman I met while working in a hospital rehabilitation unit who inspired this character.  My interactions with these patients and their families formed the backbone of my novel and the creation of its characters, especially Sara.

But in order for me to actually get into Sara’s head, I had to do some genuine research about what types of cognitive disabilities people have during the different stages of Alzheimer’s.  I read many self-help books, for example The 36-Hour Day; novels, including  The Notebook, by Nicholas Sparks; and memoirs, such as  Iris, by John Bayley, and The House on Beartown Road, by Elizabeth Cohen, all excellent books.

An invaluable resource was Thomas DeBaggio’s Losing My Mind.  DeBaggio, a career newspaperman and renowned herb farmer, developed the disease and actually wrote a book while in its early stages, describing what he was going through.  This is perhaps the only book that discusses Alzheimer’s from the patient’s point of view and created a public record of, and insights into, his decline.  His book was very insightful for me and helpful in coming up with Sara’s perspective.

Recently, I stumbled upon another amazing book, My Mom, My Hero, by Lisa R. Hirsch, based upon her internationally popular blog http://mommyhero.blogspot.com, which confirmed my portrayal of Sara’s disease is accurate.

I also surfed the internet, browsing through such obvious websites as the Alzheimer’s Association http://www.alz.org/index.asp, the Alzheimer’s Foundation of America http://www.alzfdn.org/, and the National Institute on Aging http://www.nia.nih.gov/.  I also discovered some other not-so-well-known sites – The Alzheimer’s Poetry Project  http://www.alzpoetry.com/index.php and The Alzheimer’s Prevention Registry http://endalznow.org/, both excellent sources.

In the end, though, it all came down to imagination, for even after all of my reading, the research, the interviews, and the intimate care of those living with this disease, I could only imagine what it is like to be in its throes.

They say Alzheimer’s disease is the fastest growing threat to health in the United States.  I pray for a cure, and a future without it.  I also donate five percent of the profits from sales of this book to The Alzheimer’s Prevention Registry to help end this horrific disease.

***Leave a comment to enter to win a copy of Blue Hydrangeas!***

Contest ends July 7, 2013 at 11:59 p.m. EDT

Final BH Cover3

Please take a look at Blue Hydrangeas:  amazon.com/author/mariannesciucco

Now available for Kindle.  Soon to be released in print through Create Space.

Coming this summer for Nook, iBookstore, iTunes, and Smashwords.

Please follow me here:

Find me on facebook http://www.facebook.com/marianne.sciucco.1 and Twitter @MarianneSciucco

You may also drop me a line at mariannesciucco@gmail.com

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Author: Lisa Fox

World-renowned neurosurgeon, master chef, secret member of American royalty, seducer of legions of beautiful, outrageously sexy angels and demons and vampires and werewolves and the occasional pirate, Lisa Fox has done it all… in her own mind. In reality, she can generally be found at her desk with a cup of coffee close at hand. Or maybe a martini. It really depends on the day.

8 thoughts on “Writing Sara’s Point of View by Marianne Sciucco

  1. This sounds like a beautiful story Marianne. Thanks for hanging out with us today!

  2. Sounds like you really went full out on the investigation of this horrific disease. I look forward to reading your book. I my father was touched by this dementia. However he was not diagnosed as Alzheimer’s disease. This was a very trying time for my mother, she was not a well person herself and yet they didn’t have the money to put him in a facility. I believe even if she had the funds she would not of done so. Myself and hubby talk about this often, since we are both over 65 wondering how we will handle this situation in the future. It’s really scarey to think about and of course very difficult for the families to watch and handle something like this. Once one gets older we often look back and think about our memories and relate these experiences with our children. I can’t imagine how I would feel if I knew I was heading in that direction and able to control myself and thoughts. I too hope something is found to help this disease, since our population is heading in that direction. My mother often said – there is no gold in them golden years. I think about her statement more every day.

    • Thanks for your comment, Susan. I am so sorry to hear about your father. This is a heartbreaking disease. Please follow me on Twitter. I post lots of information on living with Alzheimer’s. God bless you and your family. I really like your mom’s comment about the golden years. Sometimes this is so true. Marianne
      @mariannesciucco

  3. Glad I came across this. There’s no pleasant way to describe the disease and glad you also wrote about what it takes to get in someone else’s POV. I’m writing a series of novels about a young fashion designer and the growth of her career. I’ve done a fair amount of research and I’m going to interview some fashion designers, too. Nothing heavy duty. In the end, characters are quite similar with hopes, dreams, and the need to battle obstacles.

  4. Thanks for writing, DD. As writers we have the opportunity to explore being other people, which is wonderful, but there’s also the responsibility of portraying other people’s experiences in a realistic and respectful way. That’s why it’s so important to do our research and to learn about the day-to-day realities of the lives we write about through our characters. Readers want to identify with our characters, and to learn something about another life or something they have not or never will experience. That’s the magic of fiction. I wish you the best in your writing and research. Remember: you are not alone. Marianne

  5. I have not read this novel yet but I plan to purchase it ASAP. My father is dealing with my institutionalized stepmother with end stage Alzheimers. I know the novel will be great from the point of a nurse which I have been myself for 35 years and while growing up and living in southern Alabama the hydrangea is my all time favorite flower where there were many in our flower beds in the front lawn of of home where we grew up. Thank you for bringing this issue front and center in a novel format that I know is going to make me smile, laugh and CRY…

    • Thank you, Gwenda, for your kind words. I’m sorry your family must deal with this horrific disease and wish you and your father strength and peace as you accompany your stepmother on her journey. I hope the story is helpful for you. Marianne

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