Caregiver Support

The Alzheimer’s Community

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I have been closely involved in matters regarding Alzheimer’s disease and other dementia for eighteen years now: long-term care (LTC) housing, memory care, Alzheimer’s support group facilitator, and Washington State LTC Ombudsman. But it took me becoming a published author of a novel that focuses on a family’s Alzheimer’s disease experience before I finally found my Alzheimer’s community.

AlzAuthors is a group comprised of over 170 published authors (as of this writing) who have published fiction and non-fiction books reflective of their personal Alzheimer’s experience. The six members of the AlzAuthors Management Team (Team) is the Alzheimer’s community about which I speak.

The Team’s motto says it all:

We can sing a lonely song, or form a choir and create harmony.

Without exception, the authors featured on our site and each member of our Management Team had the experience of struggling with the learn-as-you-go-task of caring for someone with cognitive impairment. We all made mistakes, and we learned from them, but we also had successes, and we celebrated them.

As a recent addition to the AlzAuthors Management Team, I became even more convinced that my personal Alzheimer’s community resides within this group. The support, the kindness, the giving nature reflected within the Team is incomparable in my experience, and we are not just keeping it to ourselves. AlzAuthors is spreading their influence into numerous parts of the world…which is kinda why they asked me to join the team as their Global Outreach Coordinator. The six of us know our presence is evident in more countries than just the United States, but our imagination and passion is boundless so we have set out to become a household word in small and large communities throughout the world.

Why AlzAuthors? Because this 100% volunteer group has brought together some of the best books on Alzheimer’s and other dementia in one central location: our bookstore. We’ve categorized those books to make the personal caregivers’ or professionals’ shopping experiences an easy one with categories such as: Caring for Parents or Grandparents, Caring for Spouses or Partners, Living with Dementia, and Children and Teen books, to name a few. We know a caregiver’s “free” time is limited or non-existent, so we’ve done our best to make their shopping experience an easy one. They simply click on the cover of the book they’re interested in and they are taken directly to Amazon to make the paperback, eBook, or audiobook purchase.

We’re working hard so you don’t have to.

And finally, we understand the journey of unpaid (family & friend) caregivers because:

  • We have experienced the loss of a loved one with dementia.
  • We know the pain of being forgotten.
  • We all have witnessed decline.
  • We have provided countless hours of caregiving.
  • We know many others have experienced the same and we believe in the power of sharing those stories.
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Kindness Fridays

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This week’s kindness spotlights the Women’s Fiction Writers Association (WFWA) a fabulous group for writers of women’s fiction. Most if not all the administrative staff is volunteer – the reason why their kindness is this week’s selection. As a member of this organization, I was given the opportunity to have a podcast recorded for their Hear Me Roar program because I’m a debut author. Although my novel, Requiem for the status quo was released a year ago, it was my debut publishing effort.

This podcast is approximately 30 minutes in length, and although my novel is certainly the focus, much attention was spent on the prevalence of Alzheimer’s and other dementias in the world. Perhaps this podcast will keep you company on your commute in the next few days; although it may seem a bit choppy, I think it’s worth hanging in there to hear my, and the host’s, provocative discussion.

Dynamite storybook for seniors with dementia

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I was asked to write a story or two for an anthology of short, short, stories that would be read to seniors with cognitive impairment. I jumped at the opportunity. That anthology, The Mighty Ant, is now available in paperback on Amazon.

I am one of 33 contributors to this collection of short stories for seniors who suffer from dementia and other related memory or cognitive disorders. This book is the culmination of a project from editor and contributor, Jessica Bryan, who is a caregiver and advocate for caregivers. Several years ago she began to notice that her mother, who suffers from Alzheimer’s disease, lost focus and could no longer read lengthy books. Jessica began reading to her mother and found that simple, short stories were easier for her to understand. The Mighty Ant is filled with these kinds of fiction and non-fiction stories.

The proceeds from the sales of the books will be donated to a local Council on Aging. The generous contributions of authors like myself have come from all over the world. The result is a book with different perspectives, reminiscences, and tales that reflect not only local culture, but a variety of customs, ethnicities, and lifestyles.

I am honored to have my two stories titled, A Neighborly Friendship and A Sweetheart of a Story included in this collection. A Sweetheart of a Story was selected as the final story in the book because the editor felt it was the perfect selection to provide a sweet ending to the anthology. Buy a copy or ten or more for yourself and others…perhaps your local memory care community would love to include the reading of this book to their senior activity schedule! Currently only $12 for this 322-page large print storybook.

 

My novel’s 1st anniversary

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Requiem for the status quo‘s anniversary is the perfect opportunity to announce my involvement with a fabulous project focused on Alzheimer’s disease.

I am one of over 150 authors from around the world who will be represented at the Alzheimer’s Association – Western Carolina Chapter’s Dementia Education conference in Charlotte, N.C., this August. I, and over 25 other AlzAuthors, have donated copies of their books, which will be given away in a raffle to conference attendees.

I wanted to support this cause because during my caregiving experience in the early 2000s, I most definitely could have used more fiction about Alzheimer’s to normalize my day-to-day stresses, and some up-to-date non-fiction to help my learn-as-you-go caregiving experience. Something else from which I surely could have benefited is the non-profit, AlzAuthors. AlzAuthors.com is a nonprofit website that shares information on books and blogs about Alzheimer’s and dementia. I am proud to say that I, too, am a member of this fine organization. Had it been available prior to my father’s death from Alzheimer’s disease, I no doubt would have tapped into its resources.

AlzAuthors started in 2015, when Founders Jean Lee from Ohio, Vicki Tapia from Montana and Marianne Sciucco from New York, who had also written books about Alzheimer’s, met in cyberspace. They discussed the growing need for resources about dementia. A year later, after Shannon Wierbitzky joined the team, the group started a website and published posts from 60 authors. In 2017, Canadian Kathryn Harrison and Ann Campanella from North Carolina joined the administrative team.

Since that time AlzAuthors has published weekly posts, sharing resources about books and blogs that focus on Alzheimer’s and other dementias. The site has grown to include over 150 AlzAuthors from around the world and has a bookstore with a vast collection of top books for individuals, doctor’s offices, assisted living facilities and other eldercare services. AlzAuthors also has a thriving presence on Facebook, Twitter, Instagram, and Pinterest. AlzAuthors Jean Lee and Ann Campanella, whose memoirs were recently named to Book Authority’s Best Alzheimer’s Books of All Time List, will share “The Story Behind the Stories” of AlzAuthors at the Alzheimer’s Association conference.

“Together We Can,” the Dementia Education Conference held by the Alzheimer’s Association – Western Carolina Chapter, will take place on Wednesday, Aug. 29, from 8:00 a.m. to 4:00 p.m.at the Friendship Missionary Baptist Church, 3400 Beatties Ford Road in Charlotte, N.C. The event is geared for healthcare professionals, caregivers, people living with Alzheimer’s or related dementia and members of the general public. Attendees will learn more about research, caregiving practices and tools to assist in the journey with Alzheimer’s. For more information, visit ALZ.org/NorthCarolina or call 800-272-3900.

For more information about AlzAuthors. visit their website: https://alzauthors.com/.

National Alzheimer’s Month Book Deals

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September is World Alzheimer’s Month. READ THIS ARTICLE CAREFULLY TO DISCOVER HOW YOU CAN WIN A FREE COPY OF MY NOVEL, Requiem for the status quo.

Several of the AlzAuthors group of writers who have written fiction or non-fiction books on the subject of Alzheimer’s or other dementia are offering special, discounted offers to those who would like to get ahold of a select group of books being offered September 27 – 30, 2017.

I am a member of this group of writers and am offering a total of eight free copies of my novel, Requiem for the status quo: four (4) free Kindle eBooks and four (4) free paperback books (the latter available to residents of the United States only). All you need to do is Like/Follow my author Facebook page, then write a comment in the AlzAuthor post that appears on that page.

In order to get in the drawing for a free Kindle eBook or free paperback copy,  you must indicate in the comment section which format you would prefer: Kindle eBook or paperback. Please don’t say you don’t care which format you receive; for accounting and distribution purposes I will only put your name in one of the drawings so be sure to specify your preference.

All those Liking my page and posting a comment indicating their format preference will have their names entered into a drawing that will take place at Noon, Pacific Standard Time, on Saturday, September 30th. I will Messenger the winners through FB to request either your e-mail address (for eBook sending) or postal delivery address (for paperback book shipment) so that I can send out your complimentary book copies the first week of October.

But I am not the only author offering great deals on books – all the books contained within the graphic on this post are discounted during the September 27 – 30th timeframe. Be sure to go to the AlzAuthors website, click on the Bookstore tab, locate the author and their book being offered at a discounted price, click on the photo of their book and you will be directed to the site where their discounted book can be purchased. Since I am personally offering free copies of my novel – as opposed to doing so through an Amazon.com promotion – you will not find Requiem for the status quo in the AlzAuthors bookstore during this promotion.

 

Dementia caregivers: 21st century heroes

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Those family members who have had, or who currently have, a family member or close friend with Alzheimer’s or other dementia, you are my hero.

You took on the task of showing your love and compassion by signing up to become a family caregiver which at its best is a learn-as-you-go, long-term commitment. Your efforts make a difference in the life of your loved one. They may not be able to express their appreciation for all that you do, but please know that the essence of who they are acknowledges your kindness.

Your name and/or identity may be lost to them, but you are still a vital part of their lives, and your friendly and loving demeanor goes far toward affirming them and making them feel valued and loved.

Thank you for all that you have done, continue to do, and will remain doing in the future. It is an honor to be in your company.

Requiem for the status quo was released by Black Rose Writing on July 20th. You can order Requiem at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.

Reader discoveries

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To celebrate my novel’s release, I held a giveaway on a Facebook readers group, A Novel Bee, and made some extraordinary reader discoveries.

I gave the members of that group 24 hours to leave a comment on my giveaway announcement if they wanted to be entered into my contest to pick one lucky (hopefully lucky) reader to receive a complimentary copy of my novel, Requiem for the status quo.

I received 37 entries, and a considerable percentage of those readers’ entries made mention of their own personal Alzheimer’s/dementia caregiving journey. Here are just a few of those comments:

  • I am a geriatric care manager, can’t wait to read it!
  • My friend just had to put her mom into a caregiving rest home because she could no longer handle her. She was becoming quite violent. It is a horrendous disease.
  • I love that you are writing inspiring stories! Many of us are or were caregivers and the hopelessness we feel when we dont see them getting better can be overwhelming. Your compassion is so sweet and much needed in todays world. Im really excited to find a new author I can enjoy!
  • I would be honored to read this book, my father had Alzheimer’s disease. I want to tell you that the cover is totally amazing !!!!!
  • I would love to win. My husband has Alzheimer’s/ dementia so it is if special interest to me.

Even as familiar as I am with the statistics for this disease – 44 million diagnosed worldwide as of this writing – it still astounds me to hear the personal stories associated with it. Like every terminal disease known to man, Alzheimer’s and other dementia are very personal diseases. The brain – the very essence of a person’s being – is the initial body part affected. What we say, how we behave, and who we are resides in the various, vital parts of our brain. Our brain is the grand traffic director of all things me.

It’s no wonder the very long goodbye associated with this disease is so devastating to the one diagnosed, as well as for the one caring for her or him. It’s very personal, isn’t it?

I am of the belief that family dementia caregivers are 21st century heroes. Additionally, all caregivers, not just those on a dementia caregiving journey are the best of the best. They are:

Ordinary people, doing the ordinary right thing, at an extraordinary time.

I am honored to be in your company.

Requiem for the status quo will be released by Black Rose Writing on July 20th. You can order Requiem at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.