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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

Alzheimer’s Authors

It’s official: as of today, I am a member of the AlzAuthors writer’s group and boy am I in good company. This is what the group is all about, the following extracted directly from the AlzAuthors website:

Our Purpose

We are AlzAuthors. In some way, each of us who have come together on this site have been affected by Alzheimer’s Disease/dementia. We share our experiences to bring knowledge, comfort, and understanding to others on this journey.

Our books were written with a common goal: To make a difference!

We hope our words might offer support while making the pathway of others traveling this road a little less painful and lonely.

How it all began

AlzAuthors was founded in 2016 by four daughters of dementia who met over the internet because of their books, and formed a friendship and a mission to create a space where caregivers can find solid support, and those who share their stories can find the proper audience. These four founders were Jean Lee, Vicki Tapia, Shannon Wiersbitzky and Marianne Sciucco.

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Speaking for myself and no doubt for other family members who have cared for a loved one with Alzheimer’s disease or other dementia, the Alzheimer’s Club is not a place in which you ever want to land. And to be truthful with you, I’m thrilled that I am a member of the AlzAuthors writers’ group but wish none of us in the group had a reason to belong. We’re writers, employing our personal Alzheimer’s experience to help others. If it weren’t for this opportunity that was created by the four founders of this group, we might feel just a bit at odds with ourselves, not being able to share so that we might benefit others.

And as my AlzAuthors badge indicates, I absolutely had to write my novel, Requiem for the status quo, because:

It just seemed to me that what I experienced as my father’s caregiver was meant to go further than the confines of my own heart and experience.

Requiem for the status quo was dedicated to my father: Don Patrick Desonier

 

 
 
 
 
 

Goodreads Giveaway: REQUIEM FOR THE STATUS QUO

Those of you familiar with Goodreads know that authors give away tons of books on that site all year round. I figured, I’m an author, and I’m pretty generous, so I think I’ll give away some books as well! On my author site, you’ll find a very easy way to enter the giveaway on the far right side of each page. Just click on Enter Giveaway.

Otherwise, go to Goodreads (you’ll have to be a registered user to participate) and enter my 6-book paperback giveaway that starts today, December 1st, and runs through December 8th. It’s easy to register on Goodreads, you don’t even have to create a new user persona; you can register using your Facebook, Twitter, Google, or Amazon log-in information.

Once you’re a registered user, follow these steps:

  • go to the Browse drop-down menu,
  • click on Giveaways
  • on the right-hand side click on Recently Listed,
  • filter by Print Giveaways – as opposed to Kindle Giveaways or All Giveaways – and
  • search for my novel, Requiem for the status quo

Be certain to read the description of the giveaway that I’ve created. I want you to be clear on what it is I’m offering for free.

Goodreads does all the work in acquiring names and shipping information, they’ll notify me of the six randomly selected Giveaway winners, then I’ll send out a copy of my novel to six lucky winners within a week’s time.

You’ve got nothing to lose…what are you waiting for?

 

 
 
 
 
 
 

National Caregiver Appreciation Month eBook Sale & Giveaway November 15-21 — AlzAuthors

November is National Caregiver Appreciation Month, a time to recognize the long hours, sacrifice, and love all caregivers bring to the task of caring for a loved one with dementia or any long-term illness. In honor of their efforts, AlzAuthors is hosting an eBook sale and giveaway! This is a terrific way for caregivers who are […]

via National Caregiver Appreciation Month eBook Sale & Giveaway November 15-21 — AlzAuthors

Rewarding Alzheimer’s family caregivers

November is National Caregiver Appreciation Month, a time to recognize the long hours, sacrifice, and love all caregivers bring to the task of caring for a loved one with dementia or any long-term illness. In honor of their efforts, AlzAuthors is hosting an eBook sale and giveaway! This is a terrific way for caregivers who are looking for knowledge, guidance, and support to find carefully vetted books to help guide and inspire them every day.care

Consider this information from the Alzheimer’s Association:

  • In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias, a contribution to the nation valued at $230.1 billion.
  • Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.
  • 41 percent of caregivers have a household income of $50,000 or less.
  • Approximately one-quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.

Starting today through November 21st, you can take advantage of this excellent opportunity to check out some of our books at reduced prices, ranging from free to $2.99. We offer a variety of genres, including fiction, memoir, non-fiction, and children’s literature. Many of our books are also available in paperback and audio, so be sure to check them out too. As a matter of fact, my novel is available on Kindle for just $2.99 through November 21st and if you prefer a paperback copy, my publisher is offering it at half price on my publisher’s site. Check it outhere!

All books on the AlzAuthors website are written from a deep place of understanding, experience, knowledge, and love. May you find one – or two, or more! – to help guide you on your own dementia journey.
 
Click on this link, that takes you to the promo post on the AlzAuthors website, and then click on the individual book covers to visit the book’s Amazon page.