News & Events

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.

Caregiver Guilt

Those delightful people who provide care for a loved one with an incurable illness know they have a limited amount of time in which to do all they can to make the life of their family member or friend as comfortable as they possibly can. Not only is their time limited, but so are their skills.  The reality of the matter is that there is no such thing as a perfect caregiver. For the ever-growing number of us learn-as-you-go caregivers, perfection in caregiving is an unreachable goal.

The learn-as-you-go caregiver will make mistakes but I am confident very few of those mistakes will be irreparable or life-threatening. We major on the minor, however, all the while failing to congratulate ourselves on all we have done well, even when those positive efforts far outnumber the bungled efforts we commit along the way.

The performance ideal Failure is Not An Option does not serve most people well and is an ideal that presents a disservice to you and me as volunteer caregiver-learners – that’s who we are when we find ourselves in a situation where “winging it” is the norm. Fortunately, much help can be found on the internet – whether reading about other people’s care-giving experiences through blogs or books, such as is offered by AlzAuthors, or locating nearby support groups that cater to the illness that has claimed those for whom we provide care. Help is out there and we need to seek all we can.

The next time you raise your voice at your care-receiver, or miss the cues she or he is trying to send you regarding their immediate needs, or you admit to yourself and anyone who will listen, that you wish you could walk away from your ever-present responsibilities, go easy on yourself. Think of how you would console someone else who expressed similar sentiments to you as a result of their own life’s circumstances. Would you shame them or unfriend them?

No, you would not. You would treat them with kid gloves. You would provide words of encouragement, reminding them that they are only human and they are doing the very best they can.

You see, when you are doing your very best…you are doing your very best. Nothing more is required of you.

 

Discounted books about Alzheimer’s disease

What a great way to spend the Longest Day!

Starting Friday, June 21st, the longest day of the year AND The Longest Day as celebrated in honor of those who have Alzheimer’s or other dementia or who have lost their lives to this always fatal disease, several AlzAuthors will be discounting their books so you will want to fill your shelves – virtual or otherwise – with several excellent sources of support.

These authors will generously discount their books for an entire week. Set your calendars so you don’t forget!

The link to these discounted books will be provided soon!

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.

 

Alzheimer’s: it’s everywhere

There is never a time I mention the word, Alzheimer’s, where the person I am speaking with doesn’t say, “Oh, my (fill in the blank) had/has Alzheimer’s disease.” The most recent occurrence for me was yesterday.

I was lying on a medical procedure table awaiting anesthesia – light, conscious anesthesia. I was asked about my career; I said I was retired but that I was a published author so retirement wasn’t really applicable to me.

“What’s your book about?” I gave a brief book blurb about Requiem for the status quo, indicating that my novel was my creative treatment of my real-life experience as my father’s caregiver after he was diagnosed with Alzheimer’s disease.”

The anesthesia was administered but the conversation continued unabated as the doctor told me about the fate that befell his mother.  The entire procedure suite joined in the conversation, all of us bemoaning the fact that there was yet a cure and – most likely – that such a cure would probably not be realized in our lifetimes. We aren’t being fatalistic in our assessment but without any proof to the contrary, it’s difficult to be optimistic, isn’t it?

But I am hopeful. How about you?

Link to Amazon book

 

Six engaging books about Alzheimer’s disease

AlzAuthors is a community of more than 200 extraordinary authors who have written about Alzheimer’s disease and other dementia. Today I am spotlighting those books written by the community’s supportive management team, of which I am a member. Please take time to visit the six books spotlighted below. I truly believe you will be glad you did. Let AlzAuthors light your way through Alzheimer’s and dementia.

Alzheimer’s Daughter – a memoir by Jean Lee. A poignant accounting of a family’s life after both parents were diagnosed with Alzheimer’s disease on the same day.

Blue Hydrangeas – an Alzheimer’s love story by Marianne Sciucco. A touching account of a couple’s journey into Alzheimer’s and of the love that never succumbed to the disease.

Somebody Stole My Iron: A Family Memoir of Dementia by Vicki Tapia. This engaging memoir offers useful information from experts within the field of Alzheimer’s research, personal lessons the author learned along the way, and ideas and tips for managing the day-to-day ups and downs of dementia.

Weeds in Nana’s Garden by Kathryn Harrison. A heartfelt story of love that helps explain Alzheimer’s disease and other dementias geared toward the children in our lives.

Motherhood: Lost and Found – a memoir by Ann Campanella. A memoir of the ordinary and extraordinary courage of those who endure debilitating and even crushing illness, and those who suffer with them when they do so.

Requiem for the Status Quo by Irene Frances Olson. A novel that explores the delicate balance of families upended by Alzheimer’s disease and how they manage their loved one’s needs with their own.

Women’s Alzheimer’s Movement (WAM)

Who would have thought when I started my publishing journey to honor my father’s life – a life that was cut short because of the scourge of Alzheimer’s disease – I would one day be featured as part of Maria Shriver’s efforts to combat Alzheimer’s disease in women? But I am!

The Mission of Women’s Alzheimer’s Movement (WAM): Every 65 seconds, a new brain develops Alzheimer’s. Two-thirds of the brains with Alzheimer’s belong to women, and no one knows why that is. The Women’s Alzheimer’s Movement is determined to find out. Founded by Maria Shriver, The Women’s Alzheimer’s Movement is a nonprofit organization that is dedicated to raising awareness about women’s increased risk for Alzheimer’s and to educating the public — women and men — about lifestyle changes they can make to protect their brain health. Through our annual campaigns and initiatives, we also raise dollars to fund women-based Alzheimer’s research at leading scientific institutions, so that we can better understand this mind-blowing disease and hopefully get closer to a cure.

My contribution, Where the Rubber Meets the Road: Personal Caregiving, is a transparent look at the challenges every dementia caregiver faces, even for a personal caregiver who had years of professional memory care experience, as did I. If you know of someone who could use some encouragement – whether they are caring for someone with dementia or another debilitating illness – I hope you will share my Women’s Alzheimer’s Movement piece with them; doing so would honor my father, and all those current and future caregivers who just might need some additional support in their corner.

Fiction meets real life

When I made the decision to write about my caregiving experiences for my father, the first genre I thought of was fiction. To be sure, there are far more memoirs written about an individual’s family caregiving experiences than novels, but I chose what arguably, at least from a genre perspective, might be the most difficult.

It really doesn’t make sense that I chose fiction because up until the point I put fingers to keyboard and typed Chapter One of Requiem for the status quo, 100% of my writing over the years had been non-fiction. Ack! What did I think I was doing, taking on a genre about which I knew nothing?

What I was doing – wonderful readers of this post – was jumping into the deep end to honor my father and help others. Plain and simple, that sums up my efforts.

Now I’ve jumped into the deep end again, this time re-releasing my paperback through my publishing arm, Words Matter Press. My eBook is still available through Amazon via my original publisher, but the paperback version is now mine-all-mine. Please purchase the eBook, I mean, it’s only $4.99 or free to Kindle Unlimited subscribers, but if you’re looking to get your hands on the paperback version, I will be releasing that 2nd edition at some point this spring. I feel certain you will benefit from what you find within my novel’s pages.

Dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve. I love you, Dad.

Gone, but NEVER forgotten

They are not dead who live in lives they leave behind. In those whom they have blessed, they live again. – Maya Angelou

My father was born March 12, 1918. He died on October 13, 2007.

I like to believe I honor Dad with the way I live and what I’ve done with my life. One of those honoring aspects was writing my novel, Requiem for the status quo, a book that with literary license chronicles my caregiving days after my father was diagnosed with Alzheimer’s disease.

Don Patrick Desonier is a legend in my eyes, and I know I can say the same for those of my siblings, and the many people who knew him well. He left this earth more than twelve years ago, but he will never be forgotten.