Health & Wellness

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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Sorrow Passes and We Remain

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I found a letter dated July 28, 1883, written by Henry James to his friend Grace Norton, in a reference book. He wrote a letter of encouragement to her as she was desolate, depressed, and determined not to live. I post portions of it here should anyone out there feel as Grace did, in need of life-saving encouragement.

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You are not isolated, verily, in such states of feeling as this – that is, in the sense that you appear to make all the misery of all mankind your own; only I have a terrible sense that you give all and receive nothing – that there is no reciprocity in your sympathy – that you have all the affliction of it and none of the returns.

I don’t know why we live, but I believe we can go on living for the reason that life is the most valuable thing we know anything about and it is therefore presumptively a great mistake to surrender it while there is any yet left in the cup.

Sorrow comes in great waves, but it rolls over us, and though it may almost smother us it leaves us on the spot and we know that if it (sorrow) is strong, we are stronger, inasmuch as it passes, and we remain.

My dear friend, you are passing through a darkness in which I myself in my ignorance see nothing but that you have been made wretchedly ill by it; but it is only a darkness, it is not an end, or the end.

Don’t think, don’t feel, any more than you can help, don’t conclude or decide – don’t do anything but wait. Everything will pass … and the tenderness of a few good people, and new opportunities, and ever so much of life, in a word, will remain.

You are marked out for success, and you must not fail. You have my tenderest affection and all my confidence.

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 sister, Mary

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It’s National Sisters Day so naturally, I need to write about my sister, Mary.

Gosh, I wish my sister and I didn’t live 765 miles away from each other; this photo expresses exactly how I feel.

We visit each other, but not often enough, and when we do visit each other, it’s just not the same. If we lived next door to each other we could pop into each other’s homes, take walks together, and talk face to face instead of by telephone.

We’re not getting any younger, nor are our husbands. Having close proximity to each other would guarantee in-person support for when life takes a toll on our bodies and minds, and let’s face it, regardless of how healthy you think you are, life happens when you least expect it. Our mother’s death, while she slept, is proof of that. So is our father’s diagnosis of Alzheimer’s disease that took his life four years later.

My sister, Mary, and I are creatives: she’s an artist (paints and such) who holds gallery events, and I’m a writer and a published author. In so many respects, Mary is just about my most ardent supporter, as I am of her. When we’re neglecting our craft, we remind each other of the passion that brought us to this place, and that what we produce needs to be in the hands of others to benefit them.

Yep, Mary is my best friend and best friends should live closer to each other so they can have a front row seat to what life sends their way. I don’t at all predict my imaginary neighborhood will ever come to pass, but what I can predict is how close Mary and I will remain on this unpredictable and impermanent journey called life.

 

 

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/.

Kindness Fridays

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Hiking always makes me feel good to be alive, even though my joints and muscles complain more often than not at the completion of each hike.

There’s so much goodness found in the mountains, streams, lakes, and forests of the Pacific Northwest. Along with that goodness is the kindness that oozes out of every beautiful sight we behold:

  • the sweet and varied songs of the birds that are hidden from sight, but not by hearing;
  • the welcome shade provided by trees that have been around longer than my timespan on this earth and that will remain long after I’m gone;
  • the flowers and berries, both common and unique, that serve to add color to the landscape, thus softening the feel of the dirt, rocks, and rooty trails that receive our eager feet;
  • the top of the mountain vistas – what my husband and I call the payoff – that await our sweaty, achy, bodies, making us forget the out of breath effort it took to get there; and
  • the people we meet along the way who love hiking as much as we do.

At yesterday’s vista view, we met a young man who with his wife, moved to Seattle from Utah. Just three weeks into his Washington State experience Matt is in love with what our state has to offer. His wife’s job is what prompted their move: she is in her medical residency at Seattle Children’s Hospital. She has the overnight shift so Matt is taking advantage of her daytime sleep schedule to explore the new place in which he lives.

Matt is a microbiologist who is putting off looking for a job for a few weeks while he acquaints himself with his new home. We recommended he enjoy the best weather the Seattle area has to offer before getting anywhere near a laboratory. We also told him we felt certain he would have no problem finding work in his field given the renowned medical community in the area. We had a simply delightful conversation with this man who, after I mentioned my family’s history with Alzheimer’s, offered the promising breakthrough just discovered regarding a virus that might contribute to the disease.

Whether Baby Boomers like ourselves, young children, or everyone in between, the hiking community just seems to give off kindness vibes – a kindness that provides lasting benefits for these late-in-life hike enthusiasts. I know this has been a far different Kindness Fridays to which you may be accustomed, but I hope you enjoyed it nonetheless.