News & Events

Delightful stories for adults with cognitive impairment

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.

 

REQUIEM Anniversary

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/.

Discounted books about Alzheimer’s!

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

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

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

Discounted books!

If you want to take advantage of a limited-time discounted book sale, you are in for a treat!

From June 6th through June 12th, numerous books in the AlzAuthors bookstore are available for free or highly discounted prices. Details forthcoming.

My novel, Requiem for the status quo, is one of those books. For only $1.99, you can purchase my novel in eBook format on Amazon or if you prefer paperback, my publisher will offer my novel at half price. For the latter, when you get to the checkout page, be certain to enter the code ALZAUTHORS to receive the 50% discount.

But I’m getting ahead of myself, the sale doesn’t start until June 6th so why bother teasing you at this point? I’m not teasing you, rather, I’m suggesting you post this sale on your calendar and set reminders so you can plan on picking up a book or two or three written by authors who have been on the Alzheimer’s/dementia caregiving journey whose mission it is to encourage and benefit those who are – or have already been – on that same journey. As stated on the AlzAuthors website in the About section: One can sing a lonely song, but we chose to form a choir and create harmony.

I hope you’ll continue to follow this book sale countdown. I’m quite certain you won’t be disappointed.

Requiem: a story for now, but hopefully not forever

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.

 

A family’s dilemma: Part Two

In Part One of this two-part series, 88-year old Mom is less than enthusiastic about the new living situation in which she finds herself. Although she was not physically or medically capable of doing the legwork required to find an assisted living situation to meet her needs, she feels left out because all control was taken away from her by her family. (This scenario assumes a cognitively healthy family member, fully capable of making determinations that are important to her.)

Going forward, and for those of you who might yet face this family dilemma, let’s propose a few actions that might have helped Mom to be more accepting. That said, I still remain supportive of the family’s decisions because in most cases, they come from a pure heart of wanting to do what is in the best interests of their loved one.

  • Discuss options with Mom: an assisted living community (ALC) with perhaps numerous floors and many residents or a maximum of five other residents in an adult family home (AFH). If Mom likes a more intimate environment, you might push an AFH that guarantees far few residents but most likely a smaller living space, e.g. a private bedroom in a home with shared bathroom and common spaces such as living room, dining room, and such. An ALC may offer larger private spaces and a broader choice of activities so if Mom is quite the socialite, that option may be best suited for her.
  • Once Mom’s preferred type of living situation is determined, the family can call around to discern availability of said space and if time permits, the family can tour locations, take photos (common spaces, available apartments, dining room) meet with staff to learn about their programs and learn of the particulars needed to become a resident.
  • Meet with Mom to discuss all you’ve found, including basic prices, provide a photo review, and glean which of the locations she might be most interested in. Caveat: Basic prices will not be the final monthly financial outlay. Once a medical assessment is conducted to discern current and potential future needs, the true price will be arrived at.
  • When Mom voices her preference for location, if at all feasible set up a phone call with the administrator of said location so that Mom can have a one-on-one phone meeting. (Or a conference call with no more than one family member participating.) Then, reminding Mom that time is of the essence, let her tell the administrator that she would like to make her new home at that location. This benefits everyone: Mom feels in control because she is, and if things go sour after moving in, she will have been the one to decide the location, not you. You’ll thank me for taking that extra step should that happen.
  • Once you’ve found the place for Mom, sit down with her to discover which pieces of furniture and which items of clothing she wants waiting for her at her new place. This is a laborious task, to be sure, but it is well worth the effort to avoid disagreements once Mom gets settled…I know there’s no guarantee Mom won’t change her mind once she moves in, but asking her preference before the move will put you in good graces with her and you’ll feel glad you allowed her the control that she fears is slipping away…which it most certainly is.

These few suggestions aren’t the be all and end all of a successful transition into long-term care, but when time permits, you’ll be glad you followed a path that might make Mom’s future – and therefore, your future – a more peaceful one. I will admit that taking the necessary steps outlined above in such an abbreviated period of time is hellish on those involved because let’s face it, you have a life too, right? But short-term inconvenience and stress serve everyone concerned: Mom’s move into long-term care is a more pleasant one for her and your relationship with Mom will be on more stable ground going forward.

One final word: try to imagine being in your Mom’s place – you very well may be some day. How would you like your transition into long-term care to play out? If you’re like me, you’ll want to retain as much control as you can while you’re still able. Is that too much to ask for your future?

My novel, Requiem for the status quo, addresses the situation outlined in this two-part series, as well as the following:

  • Family dynamics during stressful times
  • Solo vs team caregiving
  • What Alzheimer’s and other dementia look like from the perspective of the person diagnosed with the disease
  • Treating family members with the respect they deserve while fighting a terminal illness
  • End of life decisions being put in place prior to a person’s cognitive level being compromised
  • and much, much, more

A family’s dilemma: Part One

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.

A comfort that escaped the grasp of Alzheimer’s disease

Honoring Dad: Walk to End Alzheimer’s

I loved my father. He was a gentle soul with a sense of humor that stayed with him all through his Alzheimer’s journey that ended on October 13th, 2007.

I am very aware that a lingering sense of humor is a gift that is not bestowed on everyone affected by cognitive impairment. As is too often the case, dementia has its way with its victims and transforms them into a person cloaked in contrary behaviors that might reveal themselves in anger, cussing, and even violence. Fortunately, that was not the case for my father.

Dad was a birth-to-the-grave Roman Catholic who raised all three of us children in the faith. Although none of us kids currently follow that particular religion, it most definitely shaped the spiritual paths in which we now find ourselves.

During one of my many visits with Dad, I sensed he was despondent and might benefit from a Catholic ritual that he instilled in us kids throughout our growing up years: recitation of the rosary. Using actual rosary beads for counting purposes or one’s fingers, participants recite a multi-part repetition of several prayers.

“Dad, how about we say the rosary?”

“Oh, Irene, I would really love that. Is it okay if we just use our fingers instead of a rosary? I’m not sure where mine is.”

“Works for me, how about you lead us?” Not only did Dad lead us—he never faltered. He knew each prayer; he counted out each one on his fingers and was able to complete the ritual with me to both his and my satisfaction.

Saying the rosary with my father was one of the most intimate and gratifying moments of my caregiving days with him. His eyes remained closed throughout but I kept mine open so I could watch every word that came out of his mouth and marvel at the ingrained memory of prayers that shaped his lifetime of goodness and kindness. It was a father/daughter moment rich in tradition, spirituality, and love.

The reward? Shortly thereafter Dad’s despondency lifted to be replaced by a lightness that boosted his spirit and his well-being. Another reward? Reliving this memory I am still able to recreate the feeling of closeness and connection shared with a man who was, and still is, a most excellent example of all that is good in the world.

Alzheimer’s disease could not rob him of that.

My novel, Requiem for the status quo, was dedicated to my father. Stories of his and my journey can be found among its pages.

 

 

 

An author’s gratitude

Happy New Year, and thank you for reading my novel, Requiem for the status quo. By doing so, you have honored my father, Don Patrick Desonier, to whom my novel was dedicated. My family’s story was one that simply needed to be told, and although it was published as fiction, Requiem certainly reflects some of the personal experiences that stood out most during my father’s disease journey.

I waited until five years after my father’s passing to start writing my novel because quite frankly, I needed to lock away – both figuratively and literally – my many journals into which I jotted down notes and difficult sentiments. The mourning period wouldn’t have been complete, however, without sharing the ins and outs of my father’s illness. You don’t go through a family caregiving journey without learning some lessons – both about yourself and the disease that robbed a loved one of a sound mind and body in his later years.

Visit www.alzauthors.com for more titles on this subject matter.

To be sure, I felt that if others could benefit from the mistakes I made and the lessons I learned then by Gawd, I needed to sit down and learn how to become a writer. And that’s what I did. The first version of my novel was 140,000 words which equates to approximately 525 pages in length. Now I knew I was no James Michener, Ken Follett, or Stephen King so over a four year period I sliced and diced it down to 68,000 words – a palatable 206 pages in length.

It was those 206 pages that eventually got published by Black Rose Writing and elicited countless five-star reviews. Reviews are the bread and butter of those who make products, whether that product is the latest electronic gadget or the heartfelt novel of a debut author like me. If you have yet to write a review, I covet a few minutes of your time to do so before another minute goes by. I’ll even make it extraordinarily easy for you. Simply click right here to be immediately taken to the Amazon page where my novel appears.

You don’t have to be super creative in your review, just write how you felt about the characters I chose to include in my attempt to further people’s general knowledge of how dementia affects the patient and their loved ones. You didn’t even have to fall in love with my writing style – I know I’m not an experienced writer with dozens of published books to my name. But if you benefited at all from what Requiem had to offer, I sure would love to hear from you via your review on Amazon.com.

I hope 2018 treats you well. My wish for you is that you be clothed in health, wholeness, and happiness and that you spread the same to others you encounter.

If Alzheimer’s disease isn’t a secret, why are we whispering?

This article that I posted in 2015 on my personal blog, Living: the ultimate team sport, still holds true today. I felt we all could stand to be reminded of the great need for increased Alzheimer’s funding.

Alzheimers Research Funding Lags Other Diseases- Dementia – AARP.  The January/February 2015 AARP Bulletin focuses on the prevalence of Alzheimer’s disease in America.  The cover contains photos of fifteen celebrities who died from the disease.  Some of those spotlighted may surprise you because their cause of death was not broadcast to the media.

What a shame.

Quiet 2It’s a shame that the stigma attached to the disease still manages to relegate Alzheimer’s to the closet.  Cancer used to be that closeted disease – so much so that many years ago people shied away from even mentioning the word, preferring to call it “The Big C.”  Before Alzheimer’s disease, cancer was the whispered disease but now the populous embraces each and every body part afflicted, even those considered of a private nature: breast, ovary, prostate, rectum.

Alzheimer’s disease and other dementia are centered in the brain: grand central station for the essence and identity of the human body.  When speaking of someone with Alzheimer’s we don’t even need to employ gentle euphemisms such as might be the case for cancer-ridden bodies: booby, reproductive system, male gland, and such.  You can say the word b-r-a-i-n as loud as you please and no one will accuse you of saying an inappropriate word, but that all changes when your brain, or that of a loved one, starts to fail.  We glibly address their symptoms as brain farts or senior moments, not wanting to come to terms with the fact that the body’s very center of person-ness is at risk.Quiet 3

But we take every opportunity to walk or run to raise money for cancer, whether 5K in an hour or 60 miles in three days.  (I’m a strong proponent, believe me.) We carry signs asking for a cure for body parts about which one used to only speak in the privacy of ones doctor’s office.  The U.S. government “has committed some $5.4 billion this fiscal year to cancer research, about $1.2 billion to heart disease and $3 billion to research on HIV/AIDS. Research funding for Alzheimer’s will reach only about $566 million.”  The good news is that all that attention and funding has worked.  Whereas in the past, cancer almost always claimed the life of its victim, current survival rates are off the charts.  And heart disease no longer means heart failure and eventual death.

Alzheimer’s disease is always fatal.

No one has survived the disease to become its biggest spokesperson.

No one.

Shameful.

The above AARP article shines a spotlight on one young person who is doing his best to bring Alzheimer’s out of the closet and front and center.  Seth Rogen stated the following to a Senate hearing last year.

Americans whisper the word “Alzheimer’s” because their government whispers the word “Alzheimer’s.  It needs to be yelled and screamed to the point that it finally gets the attention and the funding it deserves and needs.Shouting emoticon

You see, yelling and screaming worked for cancer, HIV/AIDS, and heart disease.  It didn’t work for my father, however.  Prostate cancer killed him because Alzheimer’s disease rendered his body unable to withstand the very treatments that would have saved his life.

I’m not bashing cancer survivors; I’m not bemoaning treatments that extend the lives of those suffering from heart disease.  I’m just begging for equal treatment for a fatal disease that hasn’t received any substantive good news since it was first discovered in 1906.

All of us can say we know of someone who beat cancer; none of us can say the same about Alzheimer’s disease.

A few resources for the reader: Alzheimer’s Association, Alzheimer’s Foundation of America, National Institute of Neurological Disorders and Stroke