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Some Favorite Authors Write about Alzheimer’s

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Authors Write about Alzheimer’s

Some of our favorite authors, including Five Authors who write about Alzheimer’s have banned together and determined to inform others about Alzheimer’s. They are discussing what keeps folks silent when they need help and how to raise the awareness about the plight of so many Caregivers.

Since November is National Alzheimer’s Disease Awareness Month and National Caregiver Appreciation Month, these Five authors have taken the challenge to raise awareness about the disease and the Caregivers who help our loved ones.

They each want others to know the importance of memory checks and awareness about Alzheimer’s. Most of all they want others to understand and know the contribution that the Caregiver makes in the lives of those who have Alzheimer’s.

Each of the Authors, including: Marianne Sciucco, Jean Lee, Vicki Tapia, Shannon Wierzbitsky  present Five Stories about Alzheimer’s and offer the opportunity for others to Enter a giveaway to win a paperback copy of each of their books: Alzheimer’s Authors Giveaway

Meet the authors on Facebook: Alzheimer’s Authors Ending the Isolation of Alzheimer’s

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12 Ways to Reach Out to Caregivers During National Caregivers Appreciation Month

Reach-Caregiversby Marianne Sciucco, author of Blue Hydrangeas, an Alzheimer’s love story

Chances are you know someone caring for an ill or disabled loved one.

This could be due to an illness such as Alzheimer’s, Parkinson’s, cancer, stroke, or a variety of other conditions. Some provide live-in care, others visit daily or weekly, and some oversee care from a distance or care provided by hired aides or a nursing facility.

No matter how the caregiver performs his or her role, caregiving is a tough job, requiring resources that are often scarce: time, money, support, and assistance.

The CDC tells us that more than 34 million unpaid caregivers provide care to someone age 18 and older who is ill or has a disability, and an estimated 21 percent of US households are impacted by caregiving responsibilities.

Almost all of this work is unpaid, typically provided by family members, and often performed around the clock with no breaks. In addition, many caregivers juggle other responsibilities such as jobs, raising children, and managing their own households.

November is National Caregivers Appreciation Month, and a great time to reach out to those providing care and help lighten their load.

In recognition of those who work tirelessly and selflessly to care for a loved one, here are 12 ways to reach out to caregivers, to offer assistance and let them know you care. These people need support, and often that support doesn’t cost much, if anything, and takes little time.

  1. Ask if you can sit for them a little while so they can run errands, take a break, see the doctor, or attend church or a caregiver’s support group, whatever they need to do to take care of themselves.
  2. Going to the grocery store? Call and ask if there’s anything you can pick up for them.
  3. If your employer allows, donate paid sick time, vacation days, or personal time to a coworker caring for a relative who is hospitalized or needs post-hospital care.
  4. Volunteer to mow the lawn, weed the garden, rake the leaves, or shovel the snow.
  5. Share the bounty, whether from your vegetable or your flower garden. Fresh produce and fresh flowers are cheerful.
  6. If you have the skills and tools, offer to change the oil in their car and rotate the tires.
  7. Again, if you have the skills and tools, offer a free haircut to the caregiver and/or their loved one.
  8. Walk their dog.
  9. Ask if they’d like you to wash and clean out their car.
  10. Volunteer to take out the trash and bring the barrels out to the curb on trash day.
  11. Double cook a meal, preferably one of their favorites, and send over a dinner.
  12. Include them in your prayers.

For more information about caregiving and caregivers please follow #AlzAuthors during National Caregivers Appreciation Month, November 2015, or find us on Facebook.

 

About the Author

Marianne SciuccoMarianne Sciucco is not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, she dreamed of becoming an author when she grew up, but became a nurse to avoid poverty. She later brought her two passions together and writes about the intricate lives of people struggling with health and family issues. Her debut novel, Blue Hydrangeas, an Alzheimer’s love story, is a Kindle bestseller, IndieReader Approved, a BookWorks featured book, and winner of IndieReCon’s Best Indie Novel Award, 2014. A native Bostonian, she lives in New York’s Hudson Valley, and when not writing works as a campus nurse at a community college. She can be reached via her website, Facebook, and Twitter.

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Filed Under: Faces of Alzheimer's, Guest Post, Recommended Reading Tagged With: Alzheimeir's Authors Giveaway, Alzheimer's Authors, Ending Isolation of Alzheimer's

“Still Alice” The Movie Review

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Still-Alice-MovieI remember how excited I was to read “Still Alice” the book by Lisa Genova. Most Alzheimer’s books are written by Wives or Husbands, Sons or Daughters or some other relative who was Caregiver for a loved one with Alzheimer’s. Caring for someone with Alzheimer’s dementia makes such an impact on the Carer’s life that it is common to want to share that experience through a book.

“Still Alice” the book was written by Neuroscientist and debut novelist Lisa Genova who researched her subject matter so well that the book became an all-time Bestseller and thrilled caregivers thirsting for more knowledge of this disease. I haven’t seen the movie, myself, but can hardly wait till I have a chance to see it.

One of our regular contributors has seen the movie and shares her Review of the Movie.

“Still Alice” The Movie Review

a Review by Beth Kelly

Who are we but a composite of our collected memories and experiences? If we lose the knowledge of those experiences, if we lose grasp on those memories, are we still ourselves?

In the film Still Alice Julianne Moore plays Alice, a middle-aged linguist, professor, mother, and wife who finds her mind succumbing to early-onset Alzheimer’s disease, leading her to question if she is losing herself to the disease as well. The film (still available online as well as from platforms like DTV and CinemaNow) earned Moore her first Academy Award for Best Actress.

Alice Howland defines herself by her intelligence and the life that intelligence has given her. She’s had a brilliant career of teaching and lecturing on linguistics. She has three grown children who are each exceptional in their own way (a lawyer, a medical student on the way to becoming a doctor, an aspiring actress) and a husband who has also carved out a career in academia. So when she begins forgetting things – a word here, a name there, a class topic before a lecture – the diagnosis comes as a shock. She’s just turned 50 and still considers her brain one of her greatest assets. The thought that it might all unravel is too painful to bear.

But there’s no denying the disease. And she is not the only one to be affected by it. Her children have lives of their own, as does her husband. Putting those things to the side to take care of Alice is not in anyone’s game plan. Especially when it becomes apparent that her mental degeneration is happening much more rapidly than anyone could prepare for. As the weeks and months go by Alice forgets more and more of her life and the people in it, though she struggles to hold on to as much as she can. She fights her mind, she fights to hold on to memories, in order to keep herself from losing absolutely everything.

At one point her youngest daughter asks her what it is like to suffer through a disease like Alzheimer’s. Alice’s response is brutal but honest.

“It’s not always the same. I have good days and bad days. On my good days I can, you know, almost pass for a normal person. But on my bad days I feel like I can’t find myself. Um. I’ve always been so defined by my intellect, my language, my articulation, and now sometimes I can see the words hanging in front of me and I can’t reach them and I don’t know who I am and I don’t know what I’m going to lose next.”

Of course, in this story Alice isn’t the only one coming to terms with loss. Her husband has to accept the fact that he will lose the partner he has built his life with. At first he doesn’t want to believe the diagnosis and denies it, and it is only Alice’s anger towards him that convinces him he needs to be concerned.

Her children have to be tested to see if they carry the risk of early-onset Alzheimer’s as well, and what that could mean to their own children and spouses one day. It isn’t easy on anyone and this film takes the time to show that. It doesn’t sugar coat things.

When Alice decides she wants to opt-out later on when her memory has gone so far that she can’t remember her oldest daughter’s name, it isn’t a surprising move considering the fact that she was someone who “lived a life of the mind” as a professor (and also confessed earlier on to her husband she’d rather have cancer than deal with Alzheimer’s).

When she attempts to follow through on that plan after the disease has progressed, it is terribly sad but also very understandable. She is not a person who wants to live a life she can’t recognize or remember. But by the time she tries to take this option it is already too late for her to make that choice.

In many films, Alzheimer’s never moves beyond the background of the story. Its typically suffered by secondary characters with whom the main characters may interact with briefly before going about their lives. Or, an important character may have Alzheimer’s, but all the film shows is a fuzzy memory. In Still Alice the disease is front and center. From the moment the first symptoms show up (Alice forgets meeting new people, can’t remember words or names, and even gets lost on a campus she has been on hundreds of times before), this film attempts to give as honest and realistic a portrayal of early-onset Alzheimer’s as possible. Alice’s memory loss isn’t immediate and it does go back and forth in severity, sometimes from day to day. One minute she can hold an almost normal conversation, and the next she can’t remember where the bathroom is in her own home.

Julianne Moore shows the pain and confusion Alice feels as she deals with her degeneration in as intense and human way as possible. Sometimes she smiles, sometimes she cries, sometimes she gets angry and yells at whoever will listen. She uses technology like her phone to help her remember important dates, locations and people, but it isn’t always enough. As time passes and the disease progresses she grows quieter, more childlike, needing a caregiver and her youngest daughter to watch over her every moment.

Still Alice is a beautiful, tragic, but ultimately hopeful film. Not because it has a fairytale happy ending, but because even in the end, when she can remember very little of the life she has led or the people that have filled it, Alice can remember one important, singular truth. Her youngest daughter asks, after reading her a passage from a play, what the passage was about. And Alice’s only response is “love.” It was about love. Her memories and her life and the people who populated it, all of the actions she took and the places she went, everything that made up the self she was so desperate to hold on to. In the end, it was all about love.

Author: Beth Kelly

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Still Alice: by Lisa Genova | Summary & AnalysisSidekick – Still Alice: by Lisa GenovaStill Alice

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 Creating Moments of Joy The 36-Hour Day Understand Alzheimer’s Alzheimer’s Treatments

Filed Under: communication, Guest Post, Recommended Reading, The Stages Tagged With: Still Alice the Movie Review

Alzheimer’s and Brain Awareness Month

06/09Leave a Comment

 Alzheimer’s and Brain Awareness Month 

Did you know that June is Alzheimer’s and Brain Awareness Month?  Five of our Favorite Authors have teamed up to Promote awareness for Alzheimer’s during the month of June. Author: Marianne Sciucco shares an article and information about the authors, their books and their contributions to Alzheimer’s Awareness.  

Alzheimers-Month

Beyond Still Alice: 5 Books on Alzheimer’s You May Not Have Heard Of

What do you know about Alzheimer’s? Anything? What should you know about Alzheimer’s? Something.

This is not just our parents’ disease. It’s a problem that has far-reaching complications, not only wreaking havoc in the life of the one afflicted but in the lives of all those surrounding him or her: spouse, child, grandchild, sibling, friend, caregivers, and the greater community. Its impact is exponential: For each one of the 5.3 million Americans diagnosed with Alzheimer’s, there are another 5.3 million (at the very least) affected. (Alz.org) These people are our family, neighbors, co-workers, friends, acquaintances. As our lives intersect and intertwine, this disease affects all of us.

June is Alzheimer’s and Brain Awareness Month. Take some time this month to learn more about this illness, to understand what it means to those who love someone afflicted, to those who dedicate themselves to seeing they are cared for, and ensure their lives continue to have meaning and dignity.

There are many ways to become educated about a condition or disease. In regard to Alzheimer’s, there are hundreds of books available to explain it, advise what to do about it, how to handle it, and offer solutions and support for caregivers. These are excellent resources.

However, stories that enlighten through the careful balance of useful facts and a cast of relatable and realistic characters may be a better way to shed light on this and many other medical issues. This type of presentation enables the reader to get inside the head of the Alzheimer’s patient, their caregivers, spouse, children, and other loved ones. It’s up close and personal, not clinical and removed.

Here are five titles to get you started. Three are memoirs, two are novels. Two are written by women who did double duty at the same time, caring for both mother and father as they suffered with dementia and Alzheimer’s. Another is the story of a woman healing her relationship with her mother after an Alzheimer’s diagnosis. One is written by a novelist wanting to pay tribute to those who rise to the difficult challenge of serving as caregiver to a loved one with this disease. One is written by a nurse who worked with hundreds of Alzheimer’s patient and their families.

Alzheimer’s is a frightening possibility, but to meet it without knowledge or an understanding of its implications increases despair and hopelessness and strips one of the power to make competent decisions and access necessary supports and resources. Knowledge gained through literature can be as practical and useful as any self-help or how-to manual.

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Jean Lee, Alzheimer’s Daughter, a memoir

Alzheimers-Daughter“I wrote what I needed to read as I traveled through the caregiving journey.”

What would you do if both parents were diagnosed?

At the time of their diagnosis, Ed Church struggles to his feet, yelling, “How dare you use the A. word with me,” while Ibby wags her finger at the doctor scolding, “Shame on you.”

They defend each other, Ibby by asserting, “We’re not leaving our home,” and Ed reassuring, “We’re just fine.”

About his driving Ed states, “I’m an excellent driver, I’ve never had an accident.”

After Rosie moves them to assisted living, convinced they are on a second honeymoon, they break the news, “We’ve decided not to have more children.”

In the late stages, they politely shake Rosie’s hand, inquiring, “Now, who are you?”

In Alzheimer’s Daughter readers journey with the author from her first suspicions that something is awry to a decade later as she is honored to hold Ed and Ibby’s hands as they draw their last breaths.

Available on Amazon in paperback and Kindle 

Visit Jean’s Author Page and blog

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Vicki Tapia, Somebody Stole My Iron, A Family Memoir of Dementia

“I wrote my story to offer hope to others whose lives have been intimately affected by this stole-irondreadful disease, to reassure them that they’re not alone.”

How would you cope if your loved one’s mind gradually slipped away?

Navigating the waters of dementia can be frightening, unleashing a myriad of emotions for everyone involved, precipitating anxiety and grief, anger and frustration, extreme sadness and feelings of hopelessness. After Vicki Tapia’s mother was diagnosed with Alzheimer’s disease, followed closely by her father with Parkinson’s disease-related dementia, she struggled to find practical, helpful information to light her way. Somebody Stole My Iron began as a diary to help her cope, but emerged as a road map for others. It offers a glimpse into her family’s life as they rode the waves of dementia, sometimes sailing, other times capsizing. This engaging memoir offers useful information from experts within the field of Alzheimer’s research, personal lessons the author learned along the way, and ideas/tips for managing the day-to-day ups and downs of dementia.

Somebody Stole My Iron chronicles the tenacity of Tapia’s mother as she fought her way through the tangled and bewildering labyrinth called dementia. Above all, it is a story of holding on and ultimately learning to let go, transcending the pain and turmoil to discover both an abiding love and a tender compassion.

Available on Amazon, Barnes & Noble, Praeclarus Press Visit Vicki’ Author Page

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Maria Hoagland, Still Time, a novel

still-time“Medical and family drama are intriguing to me, but it wasn’t the unusual that grabbed my attention for this book. I wanted to spotlight the stalwart courage and strong character that are revealed when someone has to rise to a difficult challenge. I believe we all have it in us to confront our trials, face them head-on, and gracefully endure, and what better way to show that than a mother and caregiver who sacrifices her all for someone she loves?”

Thrust into the chaos of her mother-in-law’s hoarding and forgetfulness, LDS church member Alyssa Johnston wishes she could retreat to a simpler time when her kids were small and almost anything could be fixed with a hug. But reassurance and a quick distraction no longer erase the pain of a missionary son who is struggling, a young teen who is bullied, or a daughter who is distant. As Aly’s own life and relationship with her husband plunge out of control, she wonders if her faith will be enough to keep her family—or herself—from falling apart. Still Time is a deeply moving story about a woman’s faithful journey into the next phase of her life. You will laugh with Aly, feel her sorrow, and see yourself in Maria Hoagland’s realistic, heartfelt portrayal of a woman’s struggle to keep her family safe and hold back time as long as she can.

Available on Amazon, Barnes & Noble, iBooks, and Kobo

Visit Maria’s Author Page and blog

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Lisa Hirsch, My Mom My Hero, a memoir

“My mother touched me greatly after she showed signs of Alzheimer’s. As a long distant caregiver,Mom-Hero speaking to her every day, I found myself falling in love with her. I wrote down everything she said so I would never forget it. This is now my book, My Mom My Hero.”

When Lisa found out her mother, Ruth, had been diagnosed with Alzheimer’s disease, her love, appreciation, and caring for her mother was transformed. My Mom My Hero tells the story of this loving mother-daughter relationship. This is an uplifting and inspirational book for anyone going through the difficult and often lonely ordeal of caring for a loved one who suffers from this devastating illness.

Available on Amazon

Visit Lisa’s Author Page and blog

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Marianne Sciucco, Blue Hydrangeas, an Alzheimer’s love story, a novel

blue-hydrangeas“This is a story I wrote from the heart after witnessing the pain and heartbreak of many couples and families struggling with Alzheimer’s disease. The characters are loosely based on one couple I met in my work as a registered nurse. Blue Hydrangeas is my attempt to bring consolation and understanding to all who encounter Alzheimer’s.”

What if the person who knew you best and loved you most forgot your face, and couldn’t remember your name?

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. He 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.

Available on Audible, Amazon, Barnes and Noble, iBooks, Kobo, Smashwords

Visit Marianne’s Author Page and blog

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marianne-sciucco Author: Marianne Sciucco originally wrote this post for her blog http://mariannesciucco.blogspot.com. She says: “I’m not a nurse who writes but a writer who happens to be a nurse. A lover of words and books, I dreamed of becoming an author when I grew up, but became a nurse to avoid poverty. I later brought my two passions together and write about the intricate lives of people struggling with health and family issues.”

Filed Under: Books Reviewed, Guest Post, News Tagged With: 5 books to read, Alzheimer's and Brain awareness, Guest Post: Marianne Sciucco

Celia and Nonna – Author speaks about new book

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Celia and Nonna

CELIA AND NONNA

A new children’s book, beautifully written and illustrated, aims to help families and carers dealing with dementia explain the situation to children.

The Author: Victoria Lane, has graciously agreed to share a little about the process she went through as she wrote the story of Celia and Nonna. 

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This story began with a very strong memory. The starting point for Celia and Nonna was that sense of nostalgia, or loss, for all the lovely things that Celia and her beloved grandmother used to do together – but can’t any more, due to Nonna’s advancing dementia.

So I had the first half of the story, but I did not want it to be about loss. I wanted to create a positive story.

So Celia finds her own way to make the changing relationship with her Nonna still special, with a creative solution that I hope will inspire other kids and parents in a similar situation.

Celia and Nonna grew out of a time in my life when I had both ageing parents to help care for, and little kids as well. I was part of the “sandwich generation,” with caring responsibilities at both ends of the spectrum. When my Dad was in a nursing home, and I was taking my young children to visit, it was very hard to explain to them why he was no longer at home.

I’m a journalist, so the first thing I did was some research on this difficult situation. I tried to find some children’s books on the topic that I could talk through with my children. But children’s books about dementia are few and far between, so I ended up writing one myself. As a journalist, I have spent more than 25 years writing non-fiction. So it was a big change for me to start writing for kids. But this was an important story that needed to be told.

Celia and Nonna is that rare thing: a heartwarming story, simply told, that has layers of meaning tucked away beneath the surface. With this story, parents and carers can begin the conversation with children to help explain the changes affecting their relative with Alzheimer’s or dementia, reassure them, and find a new way to connect. Because life is always changing.

by: Victoria Lane

Celia and Nonna, written by Victoria Lane and illustrated by Kayleen West, is published by Ford Street Publishing. It is now available with FREE online shipping at Fishpond.

About the Author: Victoria Lane is an award-winning journalist and writer. She has worked in London, New York, Sydney and Melbourne, including 17 years at the international news agency Reuters covering economics and financial news. For more info about Celia and Nonna, including many highly recommended reviews, please visit Victoria at:  Facebook Page, Victoria Lane Web site,  Twitter (@VThieberger)

Young children can become confused when coping with a loved one who has dementia. They’re general attitude about medical conditions is that they “caused it,” or “they will get it.” So every child coping with a loved one who has dementia needs to know it isn’t their fault and they will not “catch” this disease. And to that, they should have the reassurance that the family member with dementia still loves them even if their behavior is inappropriate at times.

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 What’s Happening to Grandpa? Always My Grandpa Still My Grandma What’s Wrong With Grandpa? Why Did Grandma Put Her Underwear in the Refrigerator? When Your Parent Becomes Your Child The Gift of Alzheimer’s Garden Flowers Coloring Book

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Filed Under: Caring for the Caregiver, Guest Post, Recommended Reading Tagged With: author notes, Book Review, children's book

A List of Recommended Reading by Category

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Best Books about Alzheimer’s Dementia by Category

Alzheimer's Reads

 

One of the first things I did after my Mom’s diagnosis was to gather a stockpile of books. I had no idea how to handle her odd behavior or cope with my severe fatigue from arguing with her with little nor no results..

Reading and learning is important! It will improve your disposition and turn everything around for you, the caregiver. If the person with dementia is still able to read it will help them too. Being in the dark about all that is happening doesn’t help anyone.

Read more… to see this book-list by Category. It will help you decide which book you need now…and perhaps other books for later!

A full collection of books with information about Diagnosis, Signs and Symptoms, Caregiving and more

[Read more…]

Filed Under: Care Tips, Common Questions, Recommended Reading, The Caregiver Tagged With: Read dementia by category

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