Get your eBook copy today, only $1.99. Hurry, this price won’t last forever! And just in case you were wondering, yes, I have a story within this volume as well.
In a recent interview with Oprah Winfrey, New York Times columnist and author, David Brooks, eloquently responded to Oprah’s statement where she said, “I hear that authors write the books they need to read.” Mr. Brooks’ response:
We writers are beggars who tell other beggars where we found bread.
He further explained that statement by saying:
We found it here, we want to share it with you.
That is what the more than 200 AlzAuthors have in common. Each author may describe their quest or mission somewhat differently, but no doubt many of them would agree that the impetus to write about their personal experiences was a call to action they could not ignore.
As a member of the AlzAuthors community, I personally feel that the more mainstream the conversation surrounding the Alzheimer’s and dementia experience becomes, the more the AlzAuthors’ vision will be realized:
Our vision is to lift the silence and stigma of Alzheimer’s and other dementias.
May you find sustenance within the AlzAuthors community.
I recently listened to a TED talk wherein Valarie Kaur spoke of 3 Lessons of Revolutionary Love in a Time of Rage. She challenged me to find a connection in each face I meet along the way.
Five years after my father’s death from Alzheimer’s disease, I decided to share my family’s story so that others might find comfort in the commonality that exists from our shared stories. To be sure, with just under 6 million people in the United States diagnosed with the disease – and multitudes more globally – most of the world’s population has Alzheimer’s disease in common.
We don’t feel better that someone else has experienced or is experiencing this dreaded always-fatal disease, but we do find comfort in the fact that we are not alone. We can acknowledge that many walked this same path and came out on the other side; our active struggle will eventually come to an end.
After my father’s death in 2007, I was saturated in grief and happy to walk away from observing my father’s heart-rending decline. While gasping for breath through my tears, I also experienced a Phew! I’m glad that chapter of my life is over!
Not so fast.
Not only was that chapter not over, but forty-four additional chapters begged to be written. And so I jumped back into the world of dementia because my journey had not ended – it had merely changed its direction. As I mentioned in an earlier post, My extraordinary success as an author, within months of publishing my first novel, Requiem for the status quo, I was able to celebrate the fact that others benefited from my work of love; people saw their story in mine and dared to hope they too would become a caregiver survivor, as did I.
In the twelve years since my father’s death, I can’t meet someone without Alzheimer’s disease or other dementia becoming front and center because Alzheimer’s is everywhere. I absolutely hate that so many of us have that story in common, but I am glad that we can connect with each other within the commonality of our shared experiences.
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/.
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.