Stellar Alzheimer’s Resource

As a an individual and a published author who always strives for truthfulness, I would not say the following if I didn’t believe it:

AlzAuthors offers the most comprehensive collection of books and blogs about Alzheimer’s disease and other dementia.

And in the spirit of full-transparency, I am on the Board of Directors for AlzAuthors but would not be on the Board if I didn’t believe in this organization’s Mission and Vision:

A community of authors sharing Alzheimer’s and dementia stories to light the way for others to lift the silence and stigma of Alzheimer’s and other dementias.

I was recently privileged to lead our entire management team through the legal maze of applying to be a non-profit corporation with IRS 501(c)(3) tax-exempt status. Almost without exception, our management team has footed every bill that has come our way and we have gladly done so. Blessedly, late last year and early this year, we were on the receiving end of benefactors who believed in our work and generously helped us become a more global presence in the world. Their generosity encouraged us to think bigger.

Alzheimer’s and other dementias seem to be here to stay for now, but so are we. We will endeavor to always fulfill our Core Commitments as we move forward to make an impact in the lives of those affected by a disease that is always fatal.

CONNECT writers and readers by providing easy access to books, blogs, and other resources.

HONOR the personal journeys of those impacted by Alzheimer’s and other dementias.

PROMOTE works from around the world, welcoming a diversity of experiences.

ADVANCE the understanding Alzheimer’s and other dementias through collective knowledge.

ENCOURAGE healing by embracing the power of vulnerability, letting others know they are not alone.

Daily Bread

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.

Connection through stories

Stories can help us see no stranger. – Valarie Kaur

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.

 

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.

 

Solo caregiving struggles

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. 

 

 

 

 

 

September World Alzheimer’s Month Book Deals

September is World Alzheimer’s Month

Several of the AlzAuthors group of writers who have written fiction or non-fiction books on the subject of Alzheimer’s or other dementia are offering special, discounted offers to those who would like to get ahold of a select group of books being offered September 27 – 30, 2017.

I am a member of this group of writers and am offering a total of eight free copies of my novel, Requiem for the status quo: four (4) free Kindle eBooks and four (4) free paperback books (the latter available to residents of the United States only). All you need to do is Like/Follow my author Facebook page, then write a comment in the AlzAuthor post that appears on that page.

In order to get in the drawing for a free Kindle eBook or free paperback copy,  you must indicate in the comment section which format you would prefer: Kindle eBook or paperback. Please don’t say you don’t care which format you receive; for accounting and distribution purposes I will only put your name in one of the drawings so be sure to specify your preference.  

All those Liking my page and posting a comment indicating their format preference will have their names entered into a drawing that will take place at Noon, Pacific Standard Time, on Saturday, September 30th. I will Messenger the winners through FB to request either your e-mail address (for eBook sending) or postal delivery address (for paperback book shipment) so that I can send out your complimentary book copies the first week of October.

But I am not the only author offering great deals on books – all the books contained within the graphic on this post are discounted during the September 27 – 30th timeframe. Be sure to go to the AlzAuthors website, click on the Bookstore tab, locate the author and their book being offered at a discounted price, click on the photo of their book and you will be directed to the site where their discounted book can be purchased. Since I am personally offering free copies of my novel – as opposed to doing so through an Amazon.com promotion – you will not find Requiem for the status quo in the AlzAuthors bookstore during this promotion.

 

REQUIEM release notes

I discovered something shocking during the weeks that followed my novel’s release:

Alzheimer’s disease is still a secret.

I know; we’ve all certainly read about it, especially when a celebrity is diagnosed with the disease. Every once and awhile there might be an Alzheimer’s Association commercial on television…that is assuming we don’t fast forward through it or walk out of the room. Another reason we’re familiar with the disease is that it is happening to so many people with whom we are acquainted – whether intimately or tangentially.

But it’s still a secret. The very definition of the word speaks to its intent: adj. not known or seen or not meant to be known or seen by others; n. something not properly understood; a mystery. from the Concise Oxford English Dictionary

In many of my promotional posts and boasts for my novel Requiem for the status quo, I’ve indicated that my book tour would probably look more like a senior center tour than what is normally the route for authors: readings and signings in major and independent bookstores. That’s the tact I took, approaching numerous senior centers in Western Washington; 25% of those I approached booked my author event on their activity calendars. But when I approached a major senior housing community foundation to get on their speakers’ calendar, I was told the residents pushed back at the foundation’s previous efforts to enlighten and inform when they hosted those who spoke to the reality of Alzheimer’s disease and other dementia.

Damn. Continue reading “REQUIEM release notes”

The family caregiver’s hope quotient

Each person reading this post has experienced a time when their hope quotient was at an all time low.

The definition of hopeless: 1) feeling or causing despair about something; 2) inadequate, incompetent.

When life happens, as it always does regardless of our preferences, we’re bound to find ourselves unable to manufacture even a modicum of hope to get us through the circumstances in which we find ourselves:

  • The loss of a job and the financial repercussions resultant from that loss.
  • Crimes against our body or our property.
  • Relationship disruptions.
  • The devastating diagnosis of a debilitating disease: cancer, ALS, Alzheimer’s disease.

Hope isn’t what a person feels when the rug has been yanked out from underneath them and their very existence as they knew it, maybe even just five minutes earlier, takes an irreversible turn.To be sure, that’s how quickly hope can take a nosedive. Equally as quick, we can not imagine we will ever feel happy again, nor can we imagine not being overwhelmed with how life has showed up. In an instant, our level of hope took a nosedive. Continue reading “The family caregiver’s hope quotient”

The brutality of loss

Sheryl Sandberg, COO of Facebook and author of the book, Option B, speaks of the brutality of sudden loss, something with which she is very well-acquainted. Requiem for the status quo speaks of the equally as brutal protracted loss of someone suffering from Alzheimer’s or other dementia. I’m not interested in comparing the two because those of us who have suffered a life-changing loss have no reason to compete with each other.

Caregivers for a loved one with dementia witness the gradual loss of someone they love over an extended period of time.

Once my father was diagnosed with Alzheimer’s disease, it took four years for him to leave me. I was devastated the moment he took his last breath, but my heart was continuously ripped apart during the years leading up to that final breath.

48 months, 208 weeks, 1460 days, 35,040 hours, and 2,102,400 minutes of ongoing departures from my and his life.

Continue reading “The brutality of loss”

My Alzheimer’s family caregiving journey

My father during WWII

I had the privilege of being my father’s caregiver during his multi-year struggle with Alzheimer’s disease that ended with his death in 2007. Five years after his death, I started writing my debut novel, Requiem for the status quo, to be released by an independent publisher, Black Rose Writing, on July 20th. And now five years since I started my novel, Requiem will be available to everyone in just 30 days. My debut novel was inspired by my father’s and my caregiving journey and is dedicated to the man whose later years was robbed by a disease that is always fatal. The book’s dedication reads: Dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.

I am in the very distinct and healthy position of understanding that realistically, as a debut author I cannot hope to be an instant and resounding financial success. But that’s okay, because for me it has never been about the money, but very much about helping those who are experiencing or have experienced an Alzheimer’s caregiving journey similar to mine. For that reason, most of my “book tour” will encompass senior centers in the region, as well as senior living residential communities where I hope to hold readings and sell my novel to seniors at a highly-discounted price. I know it is said that when trying to fill an auditorium, it’s all about getting butts in seats, but for me, it’s about getting books into laps.

And that’s what I’m going to do.

Requiem for the status quo is currently available for preorder at Black Rose Writing, enter discount code PREORDER2017 before July 20th for a 10% discount. You can also preorder Requiem at Barnes & Noble right now, and Amazon will be providing preorder opportunities in the days ahead. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.