Alzheimer’s/Dementia

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/.

Discount book sale starts today!

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I am a member of an author group called AlzAuthors. This group is a compendium of authors who have personal experience on the Alzheimer’s caregiving path. To celebrate the group’s 3rd anniversary of existence as well as reaching out to those who might be looking for resources during June’s Alzheimer’s and Brain Awareness Month, many books are offered at a great discount and some are even free of charge!

href=”https://babyboomersandmore.files.wordpress.com/2018/06/requiem-for-the-status-quo-eimage.jpg”> Requiem was a 2018 Finalist in the National Indie Excellence Awards contest[/
This sale only runs from June 6th through June 12th so I encourage you to visit the site’s post that spotlights those books being discounted during this time. Click here to access the AlzAuthors post and grab yourselves a book or three for yourself or for someone you know who might benefit from the titles being offered. When you reach that site, clicking on each book’s cover takes you directly to the Amazon eBook purchasing discount.

I am privileged to be offering my own title at deep discounts during this sale. Requiem for the status quo is only $1.99 in eBook format on Amazon.com and if you’re craving the paperback version, my publisher, Black Rose Writing is offering that format at half-price. When you get to the checkout screen on my publisher’s website, be certain to put in the Promo Code ALZAUTHORS to receive the half-price discount.

Kindness Fridays

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Over the years I’ve discovered that when we are part of a community of people, our quality of life increases. The support of others can’t be beat. For me, community is like-minded people with a common thread through their lives that provide meaning and purpose for one’s day to day existence.

I found community in a writer’s group called AlzAuthors, a compendium of authors who have all been affected by Alzheimer’s disease and other dementia. All of us authors share our experiences through our non-fiction and fiction works to bring knowledge, comfort, and understanding to those on a similar journey to the one we have already completed. Trust me, we all wish such a group were not necessary; that the common thread we share didn’t involve the always fatal disease of Alzheimer’s and related dementia; but it is necessary and we’re filling a need that as of this writing doesn’t show any chance of abating.

I’ve never met any of these authors – I live in Washington State and the rest of the authors represent just about every state in our nation – but because of our common journeys, we are members of a community. Are we all politically aligned identically to each other? Probably not. What about religious practices, do we follow the same spiritual practices as every member of the group? Hardly, but it doesn’t matter. What we have in common does matter: we are dedicated to encouraging and helping families and individuals whose lives have been interrupted by Alzheimer’s disease. Speaking for myself, I am so glad that my novel, Requiem for the status quo, can reflect the good and the bad decisions I made and other individuals made, so that those who are still on the Alzheimer’s journey might do better because they know better. I hope you’ll get to know us AlzAuthors through our website and that you’ll become an AlzAuthors Reader Community once you’ve browsed through our bookstore. Click here to go directly to the AlzAuthors Bookstore to find a library of books – more than 140 as of today – that link directly to Amazon or other purchase outlets.

So that’s it. This week I celebrate the kindness I have found in the AlzAuthors Community. Sure beats going it alone.

Long-term care: squeaky wheels and raging forest fires

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Although now retired, over a twelve-year period I worked in long-term care (LTC) wearing three different hats:

  • My first job in this industry was in the corporate office of a very fine assisted living and memory care company. In time, I decided to work in one of the company’s facilities so I could spend more time with the residents and families who chose our company for their LTC needs;
  • When I left the company, I took several years off to care for my father who had Alzheimer’s disease. A few years after his death, I became a certified long-term care ombudsman for the State of Washington – an advocate for vulnerable adults living in LTC settings;
  • Concurrent with my ombudsman work I became a trained Alzheimer’s Association caregiver support group facilitator, providing a listening ear to those on the caregiving path.

Given all that experience, I’ve seen and heard of many unfortunate and nasty occurrences where residents and patients were denied the basic rights each living person should expect to receive, especially those dependent on others for their well-being and quality of life.

I’m sorry to say that some nursing homes, assisted living/memory care communities, and adult group homes do not employ sufficient staffing to meet the needs of their residents. I can confidently say that the government agencies that oversee the LTC industry are also understaffed. When complaints are called in, those government employees have to apply grease to the squeakiest wheels and must turn their fire hoses on the most out of control fires in their case files.

That’s where you and I come in.

We must be the squeakiest darn wheels we can be so our complaint(s) are attended to.

We also need to be the hottest, most devastating fire imaginable so that our vulnerable loved one’s rights are respected.

One grievous example. This is just one example of common issues that arise in LTC settings. The complaint process I mention later in this post provides a good starting point when issues arise.

Nursing home call lights are being ignored so that residents/patients are left to defecate and urinate in their adult sanitary garments on a routine basis. Not only is such an act demeaning to the poor soul with no option but to let go of his/her bodily wastes, but said wastes are sure to cause skin breakdown and a urinary tract infection that is not only extraordinarily painful but can also be life-threatening.

What does the family member/good friend do about this indignity? They need to complain vehemently to the administrator of said facility and when she/he does nothing or very little, family and friends contact the local area’s LTC ombudsman program. This website will direct you to ombudsman resources right where you live: National Long-Term Care Ombudsman Resource Center.

Your local ombudsman program will investigate, work with the facility’s staff, and if need be, get the full force of the law to come to the defense of those in need. State ombudsman programs are staffed by paid and volunteer employees, therefore their staffing levels are usually higher than many government agencies. These ombudsmen all receive the same extensive training required for such a vital role. Once you’ve reached a dead end at the facility, ombudsmen are your most active line of defense. They are passionate about what they do and they will ceaselessly advocate for you and your loved ones. Their proximity to appropriate resources and their intimate knowledge of residents’ rights laws makes them an approachable and viable alternative for the common man’s (yours and my) needs. Caveat: if you suspect criminal activities such as physical or sexual assault law enforcement needs to be immediately involved in the matter. Additionally, severe lack of care that endangers the lives and well-being of adults more likely than not will also require law enforcement involvement.

Adults in long-term care settings are a reflection of you and me. By that I mean they were once active and self-reliant adults, just like many of you reading this piece, but they now find themselves unable to fend for themselves and need you and me to step in for them. Imagine, if you will, being in their shoes, unable to speak up for yourself. If you or I ever find ourselves in a similarly vulnerable situation, wouldn’t you want an advocate to step in on your behalf?

Advocacy for vulnerable adults falls on all of our shoulders. You can make a difference in the life of your loved one. Won’t you please step up to become their most important advocate?