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.
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.
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/.
Today I celebrate an author friend who has been so supportive of my writing journey. Jill Weatherholt is a fabulous writer of inspirational romance novels. Second Chance Romance is the first in the Love Inspired series that will grab you from the very first page. The second in the series, A Father for Bella, will be released August 1, 2018, but is available for preorder right now. I already ordered my copy and can hardly wait for the continuation of a series that has warmed my heart and has me wanting more.
This delightful author friend of mine inspires kindness wherever she goes, and she certainly warrants a Kindness Friday spot on my blog today for it is today that Jill posted an essay I wrote that gives readers a peek at my personal caregiving experience with my father. You can view that post, here. I wrote about this personal experience of mine when Jill indicated she wanted to feature me yet again on her author site, and could I please write about a caregiving episode from my past.
It was my pleasure to do so, just as it is my pleasure to give you, my blog followers, a peek into this North Carolina author’s exceptional romance novel series. I certainly hope you will pick up your own copies of Jill’s two books in the Love Inspired series, and that you will perhaps gift others who also might be interested in receiving their very own copies. At the very least, be sure to share this post with your friends so they can have quick and easy access to her novels’ Amazon purchase links.
The best part about my own publishing experience has been the authors I’ve met along the way; what giving and loving individuals they have proven to be. My life is greatly enriched by them. Thank you, Jill, for your friendship.
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!
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.
Long distance relationships don’t always work out but the relationship I have with an Adelaide, Australia online magazine works to perfection. I’ve never wanted to be the selfish one in this relationship, but I feel I’ve received far more from it than they have.
A wee bit of history: I’ve been writing for this magazine off and on for some time and then late last year, Grandparents Day Magazine offered me my own column; my own byline. Now I’m guaranteed a page in every publication.
Then, just a couple weeks ago, the editors/founders of the magazine reached out to me wanting to promote a writers’ group to which I belong: AlzAuthors. AlzAuthors is made up of a compendium of authors who share their personal experiences with Alzheimer’s disease and other dementias to benefit others. Their motto is: To make a difference. One can sing a lonely song, but we chose to form a choir and create harmony.
So today’s celebration of kindness is two-fold: one, Grandparents Day Magazine generously reached out to me and the author group to which I belong; and two, AlzAuthors members chose to share their difficult Alzheimer’s disease journeys so that others could benefit from their vast experience – much of it learn-as-you-go. As a member of the AlzAuthors group, I can testify to the fact that once I had been through a family caregiving experience – for me it was for my father – I hoped it wasn’t for naught. Being able to share my experience with others through my novel’s publication just seemed right. The same can be said for the more than 150 books written by the AlzAuthors members.
And that, my friends, is my Kindness Fridays for this week.
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.
- 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.
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?
Those of you familiar with Goodreads know that authors give away tons of books on that site all year round. I figured, I’m an author, and I’m pretty generous, so I think I’ll give away some paperback books as well!
Go to Goodreads (you’ll have to be a registered user to participate) and enter my 6-book giveaway that starts today, December 1st, and runs through December 8th. It’s easy to register on Goodreads, you don’t even have to create a new user persona; you can register using your Facebook, Twitter, Google, or Amazon log-in information.
Once you’re a registered user, follow these steps:
- go to the Browse drop-down menu
- click on Giveaways
- towards right-hand side, click on Recently Listed
- filter by Print Giveaways – as opposed to Kindle Giveaways or All Giveaways
- and search for my novel, Requiem for the status quo.
Be certain to read the description of the giveaway that I’ve created. I want you to be clear on what it is I’m offering for free.
Goodreads does all the work in acquiring names and shipping information, they’ll notify me of the six randomly selected Giveaway winners, then I’ll send out a copy of my novel to six lucky winners within a week’s time.
You’ve got nothing to lose…what are you waiting for?
November is National Caregiver Appreciation Month, a time to recognize the long hours, sacrifice, and love all caregivers bring to the task of caring for a loved one with dementia or any long-term illness. In honor of their efforts, AlzAuthors is hosting an eBook sale and giveaway! This is a terrific way for caregivers who are looking for knowledge, guidance, and support to find carefully vetted books to help guide and inspire them every day.care
Consider this information from the Alzheimer’s Association:
- In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias, a contribution to the nation valued at $230.1 billion.
- Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.
- 41 percent of caregivers have a household income of $50,000 or less.
- Approximately one-quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.
Starting today through November 21st, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children’s literature. Many of our books are also available in paperback and audio, so be sure to check them out too. As a matter of fact, my novel is available on Kindle for just $2.99 through November 21st and if you prefer a paperback copy, my publisher is offering it at half price on my publisher’s site. Check it outhere!
According to the 2017 Alzheimer’s Association Facts and Figures research, there are more than 15 million Americans providing unpaid care for people with Alzheimer’s or other dementias. Some have assembled a team of family and friends so the responsibilities are evenly spread out, but that is not always the case. The solo caregiver manages—or tries to manage—everything on his own.
That’s where those who are on the outside looking in can become a caregiver’s hero.
OFFER TANGIBLE ASSISTANCE. We will never be wrong in assuming the caregiver needs help so rather than saying, “Call me if you need anything” we can ask, “What exactly do you need?” If we remember what we needed when we were on the mend from illness or surgery we should be able to come up with an endless list of concrete gifts of assistance.
MEALS. You need to cook for yourself and/or your household anyway so make a double recipe, pack that extra portion in a disposable dish, freeze it, and keep doing that for a week and deliver one full week’s worth of frozen meals to the caregiver who, receiving your food offerings, can look forward to not having to be creative in the kitchen at the end of the caregiving day. Engage others to sign up for this dinner on wheels program so the responsibilities are spread out amongst many.
ERRANDS. You’re running to the store for a few items; take the time to ask Sam if there’s anything he might need while you’re out. He may need a half-gallon of milk—and he might have needed it for the past several days—but embarking on that task proved impossible for him. With very little effort on your part you can make a huge difference in Sam’s well-being. Maybe the needed item is toilet paper; acquiring that for him makes you a genuine hero!
CHORES. The last task a time-strapped caregiver considers doing is housework or yardwork. You will not insult your friend or neighbor by offering to vacuum their house or clean their bathrooms. Or perhaps it’s a lawn that needs mowing or a flower bed, weeding; that sprucing up will provide the caregiver with a virtual—and literal—fresh view of their circumstances.
OTHER OPTIONS. Sam may turn down home improvement offers but he might say, “What I could really use right now is some help figuring out Nancy’s health insurance statements.” Or he might say, “My wife’s not much of a conversationalist anymore, I’d give anything to have an hour to talk with someone who is. Could you stop by later today for a visit? I’ll even talk politics if it means having someone else to talk to.”
WHAT I KNOW FOR SURE. The family caregiver has so much going on physically and emotionally, offers of assistance can be the salve that gets them through each day.
Grief: Your caregiving friend is grieving the loss of a person who is still with him. Unlike the sudden death of a family member, the Alzheimer’s caregiver suffers the prolonged loss of their loved one—oftentimes called ambiguous loss—because although physically present, the person with dementia is continuously leaving their loved one.
Exhaustion. Physical, emotional, and spiritual exhaustion sneak up on the solo caregiver and they are killers. The solo caregiver must put their needs above those of the one for whom they are providing care and sometimes they need you, the outsider, to help them prioritize those needs. Just like the airlines’ seatbelt instructions, the person meeting the need requires attention before the one requiring it.
BOTTOM LINE. You have so much to offer the time-strapped family caregiver; your gifts of kindness are more valuable than you could ever imagine.
Do you want additional insight into what caregivers with whom you are acquainted are facing? You can order Requiem for the status quo at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. And if you have already read my debut novel, please consider leaving a review on the online retailer’s website of your choice.
Silent Storm: What We Remember, What We Forget, What We Discover A Novelist Meditates on Writing about Alzheimer’s By Marita Golden I didn’t choose. I was called. That’s how inspiration, art, and creativity work sometimes. I am often asked why I wrote a novel about Alzheimer’s disease. I am not caring for anyone afflicted with […]
- Bionic hip
- Loss of independence
- Healthcare TLC
I received a new right hip this past Monday afternoon which rendered me fully dependent on the staff of a local hospital, Evergreen Health Medical Center in Kirkland, Washington. As a two-night inpatient at the hospital, I was reliant on staff for absolutely all of my needs.
If you can imagine everything you do during the course of a day requiring at least one medical person to provide intimate assistance, you can easily imagine all the tasks incumbent upon the nurses, certified nursing assistants(CNA), physical therapy personnel, food delivery staff, and even someone such as Barbara the housekeeper, at your beck and call.
My personality is such that I’d much rather be giving than receiving. Each time I pushed the nurse call button I carefully considered whether such a request was warranted: bladder full to rupturing, yeah, warranted; refill of my patient water carafe? Maybe I could wait and encumber the next person who walks into my room.
From the time I checked in for surgery at 11:30 Monday morning until I was discharged at 2:30 Wednesday afternoon, each person with whom I came in contact was fully dedicated to serving my needs. They noticed if my blankets were pushed asunder in my bed and straightened them comfortably around my body. When shuffling with my walker to the bathroom while wearing my backless hospital-issued gown they discreetly covered me up and made sure my dignity was kept intact.
Then there was the aforementioned employee who after knocking on my door said, “It’s just me, Barbara the housekeeper.” Upon granting the 60-something-year-old admission to my room, she said, “I want to be sure your room is clean and acceptable. You don’t need to do a thing, just lay there – and you (my husband) sit comfortably in the folding chair and I’ll work around you.”
I engage absolutely everyone I come across in conversation so it was quite natural for me to converse with Barbara the housekeeper. I asked her how long she had been working at Evergreen and it had been quite some time. “You must have seen lots of changes over the years.”
“Yeah, of course I have, but it’s good. I like what I do. I like all the people I get to meet over the course of a day.”
“I’m sure you’ve met those who, because of their circumstances, weren’t exactly the most friendly people you’ve encountered in your life.”
“Aw, sure, but you get that everywhere, not just in a place like this.”
True, so very true. As I’ve mentioned in past blog posts, each of us has a choice of whether to make or break someone’s day. I can tell you that there was not one employee at the hospital who broke my day, rather, each person made my stay there as palatable as it could possibly be. Mind you, the dings of call lights going off all day and all night from the nurses’ station directly across from my room weren’t the highlight of my stay, but those dings are far easier to accept when you realize that you initiated your share of call dings yourself and benefited from the responses of the dedicated medical personnel who had to answer such pleadings.
All in all, I’d have to say that if you have to go through the pain of getting a new and improved hip in order to lead a more comfortable life going forward, being treated with kindness during the process certainly renders the recovery far more appetizing. This former patient has no complaints whatsoever. She was treated like a queen.
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.
I am reblogging the attached article about Christina Britton Conroy’s book that truly appears to be one all of us Baby Boomers need to add to our bookshelves. Personally, it has been a delight to be one of the AlzAuthors’ newest members. I am in such good company. Coming December 20th, you’ll be able to view my introduction as a member of this enriching group of authors.
My father was the inspiration for my novel Requiem for the status quo.
I have held three author events since my novel’s release back in July and I have more planned before the end of the year. At the senior centers and independent bookstores where my events are hosted, each person attending is certainly there in support of my efforts, but more importantly, I believe their presence honors my father’s story, a story without a happy ending.
Here’s an excerpt from my novel that speaks of my fictional characters’ dilemma, but it also mirrors that which occurred in my real life experience with Alzheimer’s.
If it’s true that cancer is no respecter of persons, it is equally true that Alzheimer’s disease exhibits the same lack of respect. This disease is a murderer and I’m troubled by the millions of crimes it has gotten away with.
Alzheimer’s is also a robber, not only because it robs a person of his or her memories and future, but also because it exacts an emotional price that few can afford. To be sure, monetary costs are a challenging force to be reckoned with, but many family caregivers and their loved ones would no doubt conclude that the emotional toll on a person far surpasses even the costliest of care fees paid.
Until the person with Alzheimer’s or other dementia becomes blissfully unaware of the disease that is murdering him, he has a front row seat to all that is happening. My dad was the first to know when his senior moments became more than a quirk of the aging process. It grieves me to imagine what he went through when he was alone with his thoughts, witnessing first hand where those thoughts were taking him.
Yes, my father had a front row seat to the effects of a disease that is always fatal. Until he eventually became blissfully unaware, he lived with that fact every single day. If the caregiver thinks she or he has been dealt a bad hand in relation to Alzheimer’s, imagine if you possibly can how that hand plays out with the person diagnosed with the disease. I don’t know about you, but my imagination in such matters paints a picture I’d rather not see.
My very real reward for writing my novel is that my father is honored as a result of my efforts. Additionally, it is my sincere hope that those reading my novel and attending my author events manage to discover that they have a cheerleader in their corner…me.
I discovered something shocking during the weeks that followed my novel’s release:
Alzheimer’s disease is still a secret.
I know; we’ve all certainly read about it, especially when a celebrity is diagnosed with the disease. Every once and awhile there might be an Alzheimer’s Association commercial on television…that is assuming we don’t fast forward through it or walk out of the room. Another reason we’re familiar with the disease is that it is happening to so many people with whom we are acquainted – whether intimately or tangentially.
But it’s still a secret. The very definition of the word speaks to its intent: adj. not known or seen or not meant to be known or seen by others; n. something not properly understood; a mystery. from the Concise Oxford English Dictionary
In many of my promotional posts and boasts for my novel Requiem for the status quo, I’ve indicated that my book tour would probably look more like a senior center tour than what is normally the route for authors: readings and signings in major and independent bookstores. That’s the tact I took, approaching numerous senior centers in Western Washington. 25% of those I approached booked my author event on their activity calendars. But when I approached a major senior housing community foundation to get on their speakers’ calendar, I was told the residents pushed back at the foundation’s previous efforts to enlighten and inform when they hosted those who spoke to the reality of Alzheimer’s disease and other dementia.
Craig Boyack, author and author supporter – yes, author supporter – conducted a radio interview of two of the characters from my debut novel, Requiem for the status quo.
Patrick Quinn, father of the protagonist, Colleen Strand, has recently been diagnosed with Alzheimer’s disease and he’s having a difficult time trying to figure out how not to be a burden to his daughter, Colleen. He’s friendly with the radio host, even joking about a part of the male body that withers and needs medicinal support and encouragement from time to time. (Don’t worry, it’s G-Rated, you have to read the context of the interview to fully appreciate the sense of humor this fine, eighty-four year old man exhibits, even in the midst of his disease journey.)
Jonathan Quinn, Patrick’s son, who’s not too keen on what has happened to the father whom he at one time looked up to. Yes, Jonathan is embarrassed by his father’s forgetfulness and seems to think his father’s challenges are all about him, Jonathan, instead of the person who has a front row seat to every twist and turn the plaques and tangles of his diseased brain takes. Jonathan is firmly implanted on the road to denial and sadly, it gets in the way of his relationship with his father.
The interviewer is a fictional character, Lisa Burton, a character in one of Craig Boyak’s novels. The interview takes place on her show, Lisa Burton Radio. This different way of interviewing an author, in this case, me, and spotlighting the author’s novel, is so ingenious, you will be taken aback by how effective Craig’s blogging methods are.
Please, read the interview, and when you’ve done so, I hope you’ll purchase my book from any of the many online and brick and mortar book stores out there, including Barnes & Noble and Amazon. 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 also be available at most online book retailers on, or about, July 27th.
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.
Today is release day for my debut novel.
On December 29, 2012, I first sat down to write that novel.
On the day of the fifth anniversary of my father’s October 13, 2007 death, I decided to write a novel inspired by my caregiving experiences as his Alzheimer’s care manager. I was certain novel writing would be a huge undertaking because up to that point, I had never written fiction. Because of the enormity of said project, I figured I would wait until the beginning of the following year – you know, a fresh start and all.
But the universe had other plans. My December 29, 2012 horoscope was what the universe used as the catalyst to get my attention. More than that, it shocked me into action. The horoscope so alarmed me, I cut it out of the newspaper, typed it out in large font, and after writing my novel’s very first page, I framed all three to memorialize the outstanding coincidence of what my Taurus-scope said. Here, for your enlightenment, is its wording:
Now’s perfect to start a new writing project; no need to wait until next year. Put down your thoughts without worrying about form, one word at a time.
I showed the horoscope to my husband and if it at all possible, he was more shocked than I at the horoscope’s content. He left me alone the remainder of the day, knowing the horoscope meant business, and so did I. I closed the door to my office, sat at my computer and started typing.
I didn’t know what I was doing. As I mentioned earlier, I had never written fiction. At that point, my personal blog, Living: the ultimate team sport was filled with 100s of non-fiction pieces, most of which centered around aging, long-term care, as well as numerous posts about Alzheimer’s disease, other dementia, and the caregiving struggles faced by families. But to write prose – with dialogue!!!!! – was beyond my skill set, and remained to be for quite some time.
The short of the long of it is that Requiem for the status quo was not the first title for the novel, there were many, the first being Have we met? Aren’t you glad I changed it to its current one? Not only were several titles tried on but my magnum opus went through many rewrites, most notably and importantly, the first draft contained a whopping total of 140,000 words. You see, I had a lot to say and I just kept typing until I had nothing more to add.
That’s an excellent way to get thoughts down on paper, but the first draft is by no means the final product that is pitched to agents and publishers. My now published novel is less than 68,000 words. Yes, lots of cutting and slashing took place over the years, to the point where not only am I proud of the finished product, but a publisher is also proud of it, Black Rose Writing.
I will close this post by providing glimpses of my father to you over the years. I hope you enjoy this montage that includes, from top left: My mother and father’s wedding day, 1947; my wedding day 2000 (my favorite photo of my dad and I); and the Desonier family circa 1971.
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.
I’ve mentioned in previous posts that my “book tour” may look more like a senior center tour than a literary one. The reason: I want to reach those who could use a bit of what I have to offer. As my Author Bio states, I want to make a difference in the lives of others by writing novels that encourage those who just might need another cheerleader in their corner. At the bottom of each of my site’s pages is a section titled READERS CORNER. Each week I provide a new element of encouragement as my simple way of standing in my readers’ corner.
Yesterday I witnessed one small way in which someone was reached by my novel.
I had a haircut appointment with my wonderful stylist, Molly, of C.J. Salon. Molly has followed my entire publishing journey and is very familiar with the topic of my soon to be published novel, Requiem for the status quo. She finished up with her previous client and welcomed me into her chair. I did the reveal of my published novel which I had brought with me for a much anticipated Show and Tell moment. I also gave her several copies of my marketing brochure that provides a peek into the storyline and the lives of the characters. “Please hand them out to women who could possibly benefit from reading my novel.”
She grabbed one of the brochures, said, “I’ll be right back” and ran out into the parking lot to flag down her previous client. Turns out this client is fully-involved in a family member’s dementia journey and Molly felt she could benefit from reading my book. Turns out she was right. Her client was so excited, she hugged Molly and basically said, “This is what I’ve been looking for!”
That, my friends, was the highlight of my week – someone who wanted what I had to offer and just might benefit from the read. But you wanna know something else? My appointment was initially scheduled for 3 pm. The day before I found out I had a change of plans for my Friday, freeing up my morning, so I called C.J. Salon, asked if they had an earlier opening, and I grabbed it.
Molly’s client benefited from my change of plans – a change that initially was upsetting to me, but turned out to be just what was supposed to happen.
My oh my, I love how the Universe cooperates when its occupants are just going about their lives, oblivious to its whiles!
In less than two weeks, Requiem for the status quo will be released. It is currently available for preorder at Black Rose Writing; enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble and Amazon. 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.
Sheryl Sandberg, COO of Facebook and author of the book, Option B, speaks of the brutality of sudden loss, something with which she is very well-acquainted. Requiem for the status quo speaks of the equally as brutal protracted loss of someone suffering from Alzheimer’s or other dementia. I’m not interested in comparing the two because those of us who have suffered a life-changing loss have no reason to compete with each other.
Caregivers for a loved one with dementia witness the gradual loss of someone they love over an extended period of time.
Once my father was diagnosed with Alzheimer’s disease, it took four years for him to leave me. I was devastated the moment he took his last breath, but my heart was continuously ripped apart during the years leading up to that final breath.
48 months, 208 weeks, 1460 days, 35,040 hours, and 2,102,400 minutes of ongoing departures from my and his life.
Writing a novel just for the hell of it isn’t what I did when, on December 29, 2012, I started to write REQUIEM FOR THE STATUS QUO.
First and foremost, I sat down at my computer because I had something to say about how Alzheimer’s disease affected my father. Additionally, having graduated from the unofficial school of family caregiving, I figured someone just might benefit from the good – and the not-so-good – ways in which I managed my father’s illness.
Now thirteen years after my father’s initial Alzheimer’s diagnosis, my novel will hit the virtual and brick & mortar shelves of bookstores. It will also make its way in person to a number of senior centers and senior living communities in my area. As an event on their activity calendars, I will read passages from my novel that might just ring a bell in the minds and hearts of those gathered to listen to what this Baby Boomer has to say. Maybe what I share will inspire them to purchase REQUIEM which I will gladly sell to them at a highly-discounted price. And once they’ve read my novel, perhaps they will share it with someone else, and so on down the line.
Is REQUIEM about Irene Frances Olson and her father, Don Patrick Desonier? Read the rest of this entry »
I had the privilege of being my father’s caregiver during his multi-year struggle with Alzheimer’s disease that ended with his death in 2007. Five years after his death, I started writing my debut novel, Requiem for the status quo, to be released by an independent publisher, Black Rose Writing, on July 20th. And now five years since I started my novel, Requiem will be available to everyone in less than 30 days. My debut novel was inspired by my father’s and my caregiving journey and is dedicated to the man whose later years was robbed by a disease that is always fatal. The book’s dedication reads: Dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.
I am in the very distinct and healthy position of understanding that realistically, as a debut author I cannot hope to be an instant and resounding financial success. But that’s okay, because for me it has never been about the money, but very much about helping those who are experiencing or have experienced an Alzheimer’s caregiving journey similar to mine. For that reason, most of my “book tour” will encompass senior centers in the region, as well as senior living residential communities where I hope to hold readings and sell my novel to seniors at a highly-discounted price. I know it is said that when trying to fill an auditorium, it’s all about getting butts in seats, but for me, it’s about getting books into laps.
And that’s what I’m going to do.
Requiem for the status quo is currently available for preorder at Black Rose Writing, enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble right now, and Amazon will be providing preorder opportunities in the days ahead. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.
I’ve written several articles over the years about the importance of assembling a caregiving team when caring for a loved one – a team that doesn’t necessarily rely on family because not everyone has a participatory family when it comes to these matters. That was certainly the case for REQUIEM FOR THE STATUS QUO‘s Colleen Strand while taking care of her father, Patrick Quinn. She sought help from her brother but that was not something with which he chose to be involved.
REQUIEM, my debut novel, is now available for pre-order from my publisher, Black Rose Writing. You will receive a 10% discount with code PREORDER2017 if purchased before its release date of July 20th. Additionally, in the days ahead, both Amazon and Barnes & Noble will be offering a pre-order option leading up to the novel’s release. Ebook options will be available at most online book retailers as of July 27th.
Of all the life-changes we encounter during our journey, caregiving is one of – if not the most – difficult speed bumps to get over.
Caregiving: the ultimate team sport suggests how one might use the strengths of each team/family member to handle the varied needs during the caregiving journey.
Family dynamics that hamper caregiving success exposes the need to let go of stereotypes or childhood roles that don’t serve siblings well as adults. If ever there was a time to work together for the greater good, taking care of a family member with dementia or other terminal illness ranks right up there at the top.
Solo caregiving addresses the needs of the person who appears to be strapped with fulfilling all the roles needed for a successful caregiving venture. The solo caregiver need not settle into those roles, however. The help of other, well-meaning individuals, can lessen that daunting task. Certainly, much relies on the neighbor, coworker, even casual acquaintance, but said entities are a resource from which much assistance can be found.
Here are several more articles for the caregivers out there – and those acquainted with a caregiver – to provide some wisdom and encouragement through the tough times:
- The tethered caregiver
- Helping an Alzheimer’s caregiver
- Caregiving and the 36-hour day
- A normal day, caregiving style
- Caregiving: grief, guilt, exhaustion, and discrimination
- Long distance caregiving Part I and Part II
- Caregiver: put on your oxygen mask first
- Caregivers, learning from our mistakes and finally
- But how am I supposed to do that?
REASON ONE: You don’t have to know someone with Alzheimer’s disease to benefit from this novel. Let’s face it, when you pick up a novel wherein cancer, murder, courtroom drama, homelessness, financial devastation, or horror are part of the storyline, you don’t put down the book because none of those issues have personally affected you. I mean, when was the last time you picked up a Steven King novel and said, “Man, this is totally irrelevant to me, I’ve never been terrorized by a car named Christine, nor have I ever attended a prom where a girl named Carrie exercised her supernatural powers to ruin the evening for most everyone in attendance.” And even though no one – as of yet – has ever lived Under the Dome, you would still be glued to the pages of that novel (not so much the TV version) to discern how it would all turn out.
When you pick up a novel, you find yourself getting involved with the characters. While you’re wondering how the book may end, you read on to find out what’s going to happen next. Or maybe your eyes are opened about matters for which you previously knew very little and then you can’t wait to see where the storyline leads you. REQUIEM FOR THE STATUS QUO satisfies all of those curiosities.
REASON TWO: You do know someone with Alzheimer’s or other dementia – whether tangentially or intimately. You might be hesitant to read yet another technical treatise or article about the devastating effects of the condition, but you still want to learn more while being entertained at the same time. Did I say a novel about Alzheimer’s can be entertaining? Yes, and I’ll tell you why. The definition of entertainment isn’t just giggles and laughs – as Steven King’s novels clearly demonstrate. According to Merriam Webster, entertainment is also something diverting or engaging. Without a doubt readers will be engaged in the story of the Quinn family from page one when the patriarch of the family, Patrick, finds himself in a very inconvenient situation while stranded on an extraordinarily busy freeway in Seattle, Washington. And you will cheer for Patrick’s daughter, Colleen, as she struggles to redefine normalcy while craving even one minute of status quo. And believe or not, you will find humor in some of the least desirable circumstances faced by a variety of characters who are members of “Club Alzheimer’s.”
REASON THREE: You read Still Alice, by Lisa Genova – maybe you even saw the movie – and you became very sympathetic to those who have faced, are facing, and will face the ravages that Alzheimer’s disease has on families such as yours and mine. And if you were fortunate, you also read the memoir, Her Beautiful Brain, Ann Hedreen’s account of the challenges she faced raising a young family and caring for a mother who was “lost in the wilderness of an unpredictable and harrowing illness.” There is much to be gained by reading various genres on the subject, and quite frankly, not enough is being published in the fiction and memoir genres.
As of this writing, there are more than 5 million people in the United States with Alzheimer’s or other dementia, and worldwide, more than 44 million suffer with the disease. Alzheimer’s disease is not going away. The more awareness and compassion we possess, the more capable we will be of helping ourselves, and others, through this protracted disease journey.
MARK YOUR CALENDARS …
REQUIEM FOR THE STATUS QUO a Black Rose Writing release, will be available July 20th, 2017.
REQUIEM FOR THE STATUS QUO, to be released July 2017, contains fictional characters right out of yours and my reality. If your life hasn’t been impacted by caregiving for a loved one with Alzheimer’s or other dementia, you are at least tangentially connected to someone who has been.
- A parent’s senior moments transform into hair-raising episodes of wandering and getting lost at all hours of the day and night during varied seasonal temperatures that may very well threaten their lives.
- The husband who was Mr. Fixit for all home repairs, big and small, no longer knows how to use a screwdriver, and becomes combative when challenged.
- A sister’s successful writing career is derailed when she can no longer write coherently or understand the written word.
- The middle-aged next door neighbor pounds on your front door demanding entry to his home and threatens to call the authorities if you don’t immediately vacate the premises.
Variations of these scenarios abound, and within those story-like confines exist the caregivers who have been thrust into a role for which they were not prepared, derailing their status quo – their normalcy – beyond recognition. These same caregivers had very full lives before their days became what has become the caregiver’s 36-Hour Day. Any down time they enjoyed prior to stepping into their ill-fitting caregiver shoes has been filled with doctors’ appointments, loved one-sitting, and putting out fires. Carefully crafted family and retirement plans are no longer feasible because life as the caregiver once knew it no longer exists.
REQUIEM will give readers an intimate look at a caregiver’s day-to-day reality while also endeavoring to provide hope for what lies ahead. To be sure, there are no happy endings, but promises of resolution and lightness spring forth in the least likely of places and during some of the most awkward of times. Whether you are a caregiver, a former caregiver, or know someone who is, REQUIEM FOR THE STATUS QUO will become a most cherished and often-read bookshelf addition.
No one wants to be a member of a club characterized by a disease that robs a person of their cognitive function and is always fatal. Unfortunately, as of this writing, 5 million Americans (many more million in other countries) are living with Alzheimer’s disease or other dementias. Here are a few more facts extracted from the most current Facts and Figures document published by the Alzheimer’s Association:
- In 2016, 15 million Americans provided unpaid care for people with Alzheimer’s or other dementias;
- That equates to 18.2 billion hours of care valued at $230 billion;
- 1 in 3 adults dies with Alzheimer’s or other dementia;
- It kills more than breast cancer and prostate cancer combined;
- Since the year 2000, deaths from heart disease have decreased by 14% while deaths from Alzheimer’s disease have increased by 89%;
- Every 66 seconds, a person develops the disease.
My novel, REQUIEM FOR THE STATUS QUO, (Black Rose Writing publication, July 2017) spotlights one family’s experience in particular – the Quinn family – while also visiting other households affected by Alzheimer’s or other dementias.
- Eddie and Katherine, a couple in their 40s. Katherine has a combination Alzheimer’s/Lewy Body dementia, a type of dementia that causes somewhat violent behavior and speech;
- Frank and his son, Sean, the latter of whom suffers from a traumatic brain injury (TBI) incurred while on deployment in Afghanistan;
- Victoria and George, a couple in their 80s, trying to crawl through the maze of George’s Alzheimer’s disease;
- Rose and Sophia, sisters in their 50s, struggling with the effects of Sophia’s vascular dementia;
- Donna and Kelly, partners in their 60s, experiencing the devastating effects of Kelly’s Parkinson’s disease and the dementia associated with her disease.
These are characters like you and I. They were living their lives the best they knew how, being good people and doing good for others, yet Alzheimer’s still managed to grab them by the throat and refused to let go.
The storyline is a difficult one but the way in which I have portrayed all of these precious people will touch your heart, and at times, your funny bone. No, there’s nothing humorous about the disease, but people will be people, and when they’re confronted with the impossible, they can find – or create – a bright side onto which they can find redemption and community.
I look forward to introducing you to my characters. Just a few more months before they’ll become a part of your life.