All of the books shown in this graphic are part of the AlzAuthors Caregiver Appreciation, week-long sale, starting today, November 7th. You’ll see my novel, Requiem for the status quo, in the upper right corner that is priced at 99 cents from Nov 7th through 13th. To link to all the books you see above, click on the AlzAuthors link here. Simply click on the book’s image and it will take you directly to its page on Amazon, making it extremely easy to purchase as many titles as you please. And don’t forget to gift others with titles as well. It’s so easy to do and the recipients of your gifts will be so pleased that you’ve thought of them.
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.
The Queen of Soul, Aretha Franklin, declared, how important it is to be granted respect in one’s life. A person deserves respect in youth and in adulthood, and those among us who are the most vulnerable deserve the highest degree of that honorable treatment.
I recently watched a special-interest show where a couple in their 60s were documented over a period of ten years, but not just any ten years: it was the decade following the wife’s Alzheimer’s diagnosis. The more time that passed in the documentary, the harder it was to watch her cognitive decline.
It was also very difficult to witness the effects of the wife’s illness on the husband: weight was gained, stress became unmanageable, and he even thought about ending his life. At the end of the episode, the CBS interviewer asked the husband if he still loved his wife, to which the husband responded that he loved the woman his wife used to be, but not the woman she had become. I tried to resist the way his sentiment made me feel.
I experienced the decline and loss of my father, and the decline and loss of my sister-in-law, both of whom died from complications of Alzheimer’s disease: Dad in 2007, my sister-in-law in 2012. My brother never stopped loving his wife as he performed the learn-as-you-go tasks of caring for someone with worsening cognitive impairment. Although a novice at caregiving, my brother managed to glom onto the concept of respecting the bride to whom he had committed for better or worse. Was it easy to love the person she had become, especially with her erratic and sometimes combative behavior? No, not easy, but he was wise enough to know that she was still the woman he married almost 25 years prior.
I had it easy, well, no, I didn’t. Being my father’s primary care person wasn’t at all easy, but throughout his declining health, he maintained that sweetheart of a personality he always exhibited throughout his life. I guess it was the luck of the draw that Dad kept his sense of humor and gentleness until the end. Being fully transparent with you, I have to say the typical behavior associated with cognitive decline really shook my foundation and there were times I verbally lashed out at him because I’m one of 6.8 billion people in this world (as of August 2018) who is far from a perfect specimen of a human being.
I allowed myself to hate the disease and everything it had done to my father and to my family, but I couldn’t stop loving the man, who, along with my mother, guided my path from infancy to maturity. I blame my father for not letting me get away with anything. I blame him for being strict about managing my finances. He’s the reason why I have a sense of humor so I blame him for that as well. And I blame both my parents for impressing upon me that I would never regret being kind towards others, that I should never judge others whose experiences are different from my own, that when all is said and done, we’re all equally flawed, and equally worthy of respect.
So I now blame Mom and Dad for helping me come to a compassionate place of not judging the aforementioned husband’s statement about the way he feels about his wife. I can hold kind thoughts towards him, knowing that everyone’s caregiving experience is different; that I have no right to consider my or my brother’s experiences as being more honorable than the husband’s.
Bottom line: respect is warranted regardless of the circumstances. We would all hope others would treat us with respect, isn’t that right? So I say this about that husband’s caregiving experience: You are a hero to many, and you are a hero to me. Bless you, for walking the difficult path you’ve been given. Bless you, for always doing what is best for your wife, and not what is most expedient.
My definition of a hero:
Ordinary people, doing the ordinary right thing, at an extraordinary time.
My novel, Requiem for the status quo, is a fictional treatment of my caregiving experiences with my father.
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 storybook.
My novel’s upcoming 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/.
The word, requiem, in the context of my novel, Requiem for the status quo, refers to an act of remembrance as it relates to the subject matter of my novel.
- Remembrance of how a loved one was prior to Alzheimer’s or other dementia taking over their lives;
- Remembrance of how the family caregiver’s life has been forever changed when his or her new normal looks nothing like the predictable normal the caregiver previously enjoyed; and
- Remembrance of how the technique that worked to calm and care for a loved one just one minute earlier must be discarded, while the scramble to discover what works now must begin in earnest.
I would truly love for my novel to become irrelevant. For some books found on the shelves of libraries and bookstores, the treatment of the subject matter has become antiquated. The content itself may still be extremely worthwhile for the reading public, but those readers can no longer trust that what is being presented is current and/or relevant.
That is my wish for my novel, a novel that was inspired by my own experiences as my father’s caregiver. I used literary license to change certain facts, but the storyline for both the primary character, Colleen, and her father, Patrick, and for all the other real-life characters found on its pages, is a direct reflection of the personal and professional opportunities that arose from my involvement with a disease that as of this date, is always fatal.
My suggestion to you and those whose lives have been touched either directly or tangentially by the cognitive issues that occur on the pothole and speedbump-filled dementia highway, is that you purchase or borrow a very readable and relatable story of people like you and me who may never escape a disease that sometimes destroys families, but oftentimes makes them stronger. Requiem for the status quo eBook is free for Kindle Unlimited subscribers and only $4.99 for those who are not. The paperback is currently offered on Amazon for under $15.
Please read it now before my wish for irrelevancy comes true.
Part one of a two-part series.
What’s a family to do? Mom moves into a rehabilitation center (RC) for extra care after an illness. When her rehabilitation period is nearing its end, Mom is still not able to live independently so she cannot move back to her apartment in town and can no longer remain at the rehab location. She needs more care than the RC can provide so new accommodations need to be arranged, and the family only has a week in which to do so.
The problem is, Mom is in no shape to accompany her family members to research such options so her family lovingly takes over to facilitate the move. In their minds, they are extending a huge favor to their 88-year-old mother, and they most certainly are.
The family finds a top-notch adult family home (AFH) that has the capability of caring for the family’s mother both now and in the future, chooses furniture from Mom’s previous apartment that will fit into the smaller personal space she will have in the AFH, chooses a variety of clothing the family feels Mom will be happy with, they set everything up at the AFH and relocate Mom to her new home, and with smiles on their faces the family steps back and awaits the gratitude that will surely pour forth from Mom’s mouth.
But Mom isn’t happy, as a matter of fact, Mom is furious with her family’s choices. Even though Mom knew in advance that the family was doing all they could to make the move as pain-free and carefree as possible, she hadn’t been involved in any of the decisions so, in place of gratitude, she is resentful. Mom is well aware that she doesn’t have the ability to schlep around town to find a new home, nor does she have the ability to return to her apartment to painstakingly sift through all her clothing and furniture to choose exactly what she wants to be moved to the AFH, but she’s still mad as hell feeling she has been overlooked in the process.
In my novel, Requiem for the status quo, Colleen’s father, Patrick, is able-bodied but his cognitive health is somewhat diminished at the time due to Alzheimer’s disease. Patrick is still able to tour several memory care units with his adult children, however, and he makes the final decision on where he wants to live. There are other characters in my novel, however, who move into a memory care residence without the luxury of making such decisions. As those who have been in this particular situation know, that task is a fly by the seat of your pants, learn as you go endeavor that is rarely without drama and trauma for everyone involved. But as Maya Angelou once said, When you know better, you do better. It’s far too easy to judge the well-intentioned actions of others. Unless and until each of us has been put in the tenuous position of having to make quick long-term care decisions with little or no experience in doing so, those on the outside need to support those whose lives have become a whirlwind of forced decisions and resultant stress.
Part Two on this topic will address what might have been if the loved one is somehow included in the emergent tasks at hand. Hindsight is 20/20, but perhaps going forward, all of us will be a bit more prepared if such instances crop up in our lives. Hope to see you Thursday for the conclusion of this series.
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.
I’m quite certain no one will be able to avoid being a member of some sort of medical support community at some point in their lives. Cancer, Parkinson’s, ALS, MS, heart disease, dementia – or any of the multitude of conditions that disrupt a person’s status quo – will eventually find most of us clinging to that common bond of support.
For my brother and I, it is Alzheimer’s disease that has been the defining community to which we both belong. My brother, Don Desonier, recently changed his career focus from family law to family caregiver consultant, a career that bloomed out of his experience with our father, to be sure, but more pointedly as a result of spousal care for his wife, Nancy, who died from a mixed dementia diagnosis on July 4, 2012. His company, Transitions in Dementia Care, provides support for a caregiver’s journey. “You don’t have to do it alone,” and “Helping you walk the path with dignity and hope” are the major tenets of his one-on-one work with individuals and families. As with all things in life, going it alone is rarely the healthiest path of least resistance a family caregiver might follow when strapped with the learn-as-you-go task of dementia caregiving. Consulting with professionals or like-experienced individuals can only enhance the caregiver’s efforts.
Several years after my father’s death, I immersed myself in providing Alzheimer’s Association group caregiver support. Concurrent with that work, I was a certified long-term care ombudsman for the State of Washington, advocating for those living in long-term care facilities. The two jobs complemented each other quite readily. When I thought I was ready, I wrote about my father’s caregiving experience, eventually publishing Requiem for the status quo, a novel that ushered my membership into the AlzAuthors writing community for which personal family Alzheimer’s experience, plus writing skills, can qualify a person for membership.
My five-year road to publication was fraught with challenges, not the least of which was trying to get into an industry that, quite frankly, was not enamored with the icky topic of Alzheimer’s disease or other dementia. Lisa Genova’s Still Alice was the big winner in the publishing world when it came to fiction about dementia. Her novel and an eventual movie filled the stories-about-Alzheimer’s gap that existed at the time, and she did so quite swimmingly. She is an extraordinary author (multiple book titles to her name) and her fictional Alzheimer’s story was done well.
But I too am privy to extraordinary literary contributors on the subject of Alzheimer’s and other dementia. The AlzAuthors bookstore contains a wealth of non-fiction and fiction titles that will most certainly meet the needs of adults and children who have experienced – or are experiencing – a life with dementia. I am personally reading each and every title – it will take me awhile because there are numerous titles – but one glance at the bookstore and you’ll be able to pinpoint the exact subject matter that will meet your particular situation and query. My own novel, Requiem for the status quo, will be added to the bookstore December 20th of this year.
As odd as it sounds, I celebrate the fact that Alzheimer’s is becoming quite mainstream.
That is a good thing because once it appears more commonly and intuitively into our lives, we will be better able to manage all that this disease dishes out. It is by no means a popular disease, but it is indeed a disease of the populous.
There is no sugar-coating dementia; I have not done so and I don’t pretend to paint a picture of good times and joy in my debut novel, Requiem for the status quo. But what I have succeeded in doing is to describe real people who seek solutions to their caregiving problems and who find those solutions amongst the counsel of others.
I completely understand that one of my recent reviewers found it a difficult book to read; she admitted that she is in the midst of a similar caregiving struggle with her mother so the subject matter more or less caused her to put the brakes on the completion of the novel. Thankfully, she indicated she would not delete the book from her eReader as she might pursue further reading at another time. I knew from the outset that the subject matter of my novel would be relevant, and it is, but I also knew some readers may require a little separation from their caregiving journey before being ready to read about someone else’s journey.
But this novel is not just for caregivers, it is also for those who endeavor to learn more about what it is like to have a loved one with Alzheimer’s or other dementia. One such reader said the following:
I have a dear friend whose mom died of Alzheimer’s, and she was her caregiver. So, now I’m dying to call her and say that I understand what she must have gone through and I want her to tell me all of her story! Oh my goodness! It’s so tough!!! Your writing is wonderful! Your story is educational and needful!! – Reader T.
And yet other readers have expressed that they wish they had had access to my novel while they were on their own Alzheimer’s caregiving journey for a family member. While Requiem for the status quo tells a story, it also assures the reader that the author – who herself was a family caregiver – stands in their corner and wants to lessen their load. The author, me, injected humor, hope, and encouragement as survival strategies were introduced in a storytelling, rather than clinical, manner.
All of us current and former caregivers have unfettered access to all the internet has to offer regarding latest treatments (few) and suggested ways in which to handle the new normals that creep up on us by the hour. What many of us lack, however, is a relatable story wherein we can find ourselves. Fortunately, that is changing as is evident in the Bookstore located on the AlzAuthors website, where both extraordinary non-fiction and fiction are offered, and where my novel will be spotlighted come December.
My greatest hope, dear readers, is that my personal caregiving experience, as altered and fictionally depicted in Requiem for the status quo, will reassure and support you as I remain now, and forever more, in your corner. I leave you with a few recently submitted comments/reviews:
In a couple of days, when I stop crying, I’ll write a review for you. I really wish this book had been around when my mother had Alzheimer’s. I would have asked some family members to read it … Wow, didn’t realize all this sorrow was still in me. I know you will help a lot of people with this amazing book. Good job, Irene. – Reader K.
My mother recently died from Alzheimer’s, and I could really relate to everything she (author) wrote about. All her information is very accurate, and I felt like she was on the journey with me. – Reader R.This is such a beautiful, heartfelt, and touching book and story. The author shares so clearly and bravely the trials of dealing with all of the decisions that have to be made in every stage of dementia or Alzheimer’s for each phase your loved one is going through. The unknowns of what your loved one is going through is heartbreaking to watch, but she shows that love can trump these unknowns with laughter, humor and the help of family and friends. No one expects this disease to touch their families, but it does inflict itself onto her father. The love that she shares with her dad, her sister, and eventually her brother who has been in denial shows us that the needs of someone with Alzheimer’s disease can be met with dignity and care. I highly recommend this book for anyone who has dealt with this disease, for anyone who is dealing with it right now, or for anyone who might have to deal with it in the future. Reader L.