News & Events

Stories that make a difference

As an author of a novel whose mission it is to make a difference in the lives of those faced with a horrendous terminal disease, I feel my stories-that-make-a-difference-detector is quite keen.

Ariel & Shya Kane’s new storybook, Being Here…Too, is one of those, and deserves 5 out of 5 stars. (Preorders now being taken for the Kindle version; both eBook and paperback will be released November 12, 2018.)

I was gifted with the opportunity to read the Kane’s latest book before its release, an opportunity I could not pass up given how impactful their books’ messages have been to me over the years. There is no woo-woo involved in what they offer a world conflicted and torn apart not by just political or global issues, but also those internal how do I live the best life I can live? struggles each of us face.

On page xviii, the following statement sets the tone for the direction readers can expect to go later in the book:

“life will support you if you let it”

The format of the book is such that each brief chapter contains a story of individuals who were not afraid to be honest/transparent about their failed efforts to make the best of their lives. In Chapter 8, co-author, Shya Kane, states, “…everyone has a terminal illness – it’s called life.” So very true. Many are those who have lost a loved one and/or prior to receiving their own terminal illness diagnosis had the mistaken notion that there’s always tomorrow, or I’ll live my life to the fullest another day when erroneously convinced another day, and another, will actually be granted us.

Living in the moment – “bypassing the mind to find the moment” – is where Ariel & Shya Kane suggest true fulfillment lies. We can either live life as a victim or as its author and my friends, after sixty-five years of life, I can declare that for me, fulfillment exists in the here and now, not in the past or the future. The stories presented within the pages of Being Here…Too will paint a clear picture of what it is like to be buried in thoughts that wipe out any chance of the present taking center stage in one’s life. Been there…done that…doesn’t work for me..at all.

The authors conclude the book by describing how dissatisfaction with life gets in the way of being fulfilled.

Over the years…we have come to realize that the only time life dominates you is when you are not living in the moment. When you are not being here, your hopes for the future create an illusion, a dream of how it will someday be better than it is now…

True freedom happens when the illusion dissolves and you live life directly in each moment – not as you would prefer it, but as it is.

The present is all we have, so why live elsewhere?

I hope you’ll not let another moment go by before securing your own copy of Being Here…Too.

 

 

 

The Alzheimer’s Community

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.

R-E-S-P-E-C-T

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.

 

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.