Alzheimer’s and dementia
by Sue Anne W. Kirkham
How it all began:
It was late October when my husband, Jack, and I showed up at my father and stepmother’s townhouse to walk their two dogs—a duty we’d taken on several months earlier, after they announced they no longer felt up to the task. At 84, my father suffered from respiratory and circulatory problems; at 81, my stepmother showed early signs of dementia, with some Parkinson’s-like tremors erupting, just to keep things interesting. I was determined that they not be forced by these circumstances to give up their pets. On this day, Dad greeted us at the door with another shocker. “We have to move into assisted living.” No hello. No how ya doin? Just this stark declaration.
Dad and Zelda had always been younger than their years in every respect. He continued his career as a psychologist into his late 70s, and the warm, witty, delightful woman he married in 1972 had always been active and ready for a new adventure. Each enjoyed absorbing hobbies, and they eagerly traveled the globe together for most of their 32-year marriage.
As Jack and I herded the pups that chilly autumn day, I remained troubled by the prospect of a radical change in lifestyle for my beloved father and stepmother. So I hatched a plan: leave my dreary clerical position and devote myself to lightening their load and injecting some sparkle back into their lives. I would carve out a new weekday vocation as companion/housekeeper/social director/exercise coach/assistant cook.
I kept a journal from Day One as, over the next 18 months, Zelda suffered incremental losses of mental acuity. Less noticeably, my father’s COPD was cranking toward a dramatic climax that none of us anticipated. While I focused on finding enough fingers to plug the ever-multiplying holes in the home-front dike, Dad’s staunch self-sufficiency propelled him through his own physical deterioration. Meanwhile, I watched Zelda—former organizer of Fourth of July kitchen band marches—fade into confusion. To be at her side through the slow, agonizing loss of her Self would prove to be the most affecting experience of my life. It soon became clear that the course I was chronicling was strewn with striking contrasts: moments of high hilarity and wrenching despair; snapshots of the struggle for dignity in the face of decline; arcs of mood between fear and optimism, gratitude and resentment. Hobbling my efforts to navigate these troubled waters was the crushing blow of friends and family members challenging my motives, questioning my trustworthiness.
This enterprise had much to teach me about life and death, human limitations, faith, and endurance. The struggle, as they say, was real. But the joys and rewards were every bit as genuine.
Why I wrote about it:
As my time with Dad and Zelda ended, a fresh commitment shaped my mission: I had been seeking a book topic I felt passionate about. This was that subject. I would share our experiences, unique amidst all the universal similarities, to promote understanding and support others confronting the challenge of caring for those who once cared for us. I chose the memoir format because, as dementia robbed Zelda of her voice, my journal became the story; it painted a complete and authentic picture for readers. Memoir also allowed for the interweaving of family history, a fleshing out of characters, and a means of affirming through narration the individual’s continuing worth, untainted by the loss of physical and cognitive abilities.
ABOUT THE AUTHOR
Sue Anne Kirkham is a freelance writer who blogs atwww.yourrecipesforlife.com. She has published print articles on aging and family relations as well as online profiles of inspiring everyday heroes, and essays on health-conscious living and the peculiarities of contemporary culture.
FOLLOW THE AUTHOR:
FOLLOW THE AUTHOR:
Author website: www.lovingzelda.com
Author Facebook page: @LovingZeldaCaregiving/
LinkedIn: Sue Anne Kirkham
How often have you felt defeated because your day-to-day existence is somewhat routine and boring?
The life of a family caregiver, attending to a loved one with a disease or malady that is all-encompassing, is never Same-O Same-O. Any semblance of status quo flies out the window shortly after taking on this learn-as-you-go caregiver role. The boring life about which the family caregiver used to complain no longer exists as she or he memorializes that long-abandoned way of living. My memorial to status quo existed while attending to my father during his Alzheimer’s journey.
Requiem for the Status Quo speaks of that memorial to things that once were.
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!
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.
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.
This week’s story comes to us from the UK where a supermarket chain pulled out all the stops to keep a woman on staff, regardless of her limitations. It is not often that a person’s company feels like family, but that was definitely the case for Ms. Salomon’s working experience.
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 andmen — 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.
The eBook and audiobook of Requiem for the status quo will continue to be available on Amazon until the end of 2019. I am going to self-publish the paperback version through my publishing arm, Words Matter Press so as of March 1, 2019, you will not be able to purchase a paperback copy for your bookshelf until Words Matter Press’s Spring 2019 release on Amazon.
In the meantime, the Amazon paperback price for the month of February has been reduced so those who want to add this book to their library can do so at a discounted price before supplies run out. If you are a Prime member, shipping is FREE!
Let these recent reviews encourage you to get your copy today!
Rubies My mother recently died from Alzheimer’s, and I could really relate to everything she wrote about. All her information is very accurate, and I felt like she was on the journey with me.
Boy do I have a book for you. The paperback of Requiem for the status quo is discounted until the end of February. For only $13.95, you can add this book to your To Be Read (TBR) list!
If the Ebook is more to your liking, it is currently just $4.99 or free to Amazon Unlimited subscribers. It will always be available, but the paperback will not be, at least until later this year.
Requiem for the status quo was picked up by a publisher two years ago this month. The eBook and audiobook will continue to be available on Amazon through Black Rose Writing until the end of 2019. I am arranging for different publishing options for the paperback version, however, and will be releasing that paperback later this year.
In the meantime, my publisher and I reduced the paperback price for the month of February so those who want to add this book to their library can do so at a discounted price. If you are a Prime member, shipping is FREE! When I self-publish my novel I’ll be sure to send out an announcement so you’ll again have access to the paperback version through Amazon. And of course, the eBook is still available on Amazon and will continue to be available forever and a day. (I will self-pub the eBook at the end of the year.)
Let these recent reviews encourage you to get your copy today!
Jill W. I’ve never written a review when I’m only halfway through a book, but I wanted the author to know sooner rather than later, how much her book has affected me emotionally. My family has been dealt the dreaded card of dementia so reading REQUIEM FOR THE STATUS QUO has been difficult since we’re living Coleen and Patrick’s nightmare now. I find myself only able to read pieces at a time because the author has done a superb job of making Patrick and his family’s battle with this horrible disease, so real. Last night as I read, I found myself laughing and then crying. This book is a must read for anyone touched by Alzheimer’s or dementia.
Ann C. Irene Frances Olson writes believable fiction. Her characters are kind, funny and endearing — even in their flaws. When Colleen takes over her father Patrick’s caregiving because of his advancing memory issues, the reader can’t help but be moved by the tender relationship between them. The effervescent Colleen finds herself in a challenging life situation — pulled between her father’s condition, her working life, her brother’s disdain for her father’s illness and her own desire for companionship. Having experienced the devastation that Alzheimer’s can bring to a family, it was both heartbreaking and a joy to follow Colleen’s path. Yes, there was loss, but the author helps us see the beauty and courage in facing the inevitable challenges of aging and how it’s possible to do it with grace and love.
Jason This book is about the many faces of Alzheimer’s, from those how bear the thief in their brain to those who must cope with and care for loved ones. The story is straightforward and written with love, it is a daughter’s anthem of love for her father while also being a support for others facing the journey of incremental loss. Colleen describes it best when she identifies Alzheimer’s as a thief robbing us of our memories and our future. If you or a loved one are walking this journey, this story is sure to give both a sense of how to make this journey possible and how to mourn with others on the path.
Guess what the currency of media is? OUR ATTENTION.
Don’t invest in bad news, invest only in the good!
Ron Robert doesn’t believe in giving up even after being diagnosed with Alzheimer’s disease. He was a retired man who was extremely bored with his life and when he received the diagnosis so many of us fear, he enrolled in University to get off his butt and once again get involved in life. Read this astounding article that contains some of the best news about Alzheimer’s I’ve heard in quite some time.
All of the books shown in this graphic are part of the AlzAuthors Caregiver Appreciation week-long sale, starting today, November 7th. You’ll see my novel, Requiem for the status quo, in the upper right corner that is priced at 99 cents from Nov 7th through 13th. To link to all the books you see above, click on the AlzAuthors link here. Simply click on the book’s image and it will take you directly to its page on Amazon, making it extremely easy to purchase as many titles as you please. And don’t forget to gift others with titles as well. It’s so easy to do and the recipients of your gifts will be so pleased that you’ve thought of them.
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.
This week’s kindness spotlights the Women’s Fiction Writers Association (WFWA) a fabulous group for writers of women’s fiction. Most if not all the administrative staff is volunteer – the reason why their kindness is this week’s selection. As a member of this organization, I was given the opportunity to have a podcast recorded for their Hear Me Roar program because I’m a debut author. Although my novel, Requiem for the status quo was released a year ago, it was my debut publishing effort.
This podcast is approximately 30 minutes in length, and although my novel is certainly the focus, much attention was spent on the prevalence of Alzheimer’s and other dementias in the world. Perhaps this podcast will keep you company on your commute in the next few days; although it may seem a bit choppy, I think it’s worth hanging in there to hear my, and the host’s, provocative discussion.
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 large print storybook.
Requiem for the status quo‘s 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/.
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!
September is World Alzheimer’s Month. READ THIS ARTICLE CAREFULLY TO DISCOVER HOW YOU CAN WIN A FREE COPY OF MY NOVEL, Requiem for the status quo.
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.
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.
Those family members who have had, or who currently have, a family member or close friend with Alzheimer’s or other dementia, you are my hero.
You took on the task of showing your love and compassion by signing up to become a family caregiver which at its best is a learn-as-you-go, long-term commitment. Your efforts make a difference in the life of your loved one. They may not be able to express their appreciation for all that you do, but please know that the essence of who they are acknowledges your kindness.
Your name and/or identity may be lost to them, but you are still a vital part of their lives, and your friendly and loving demeanor goes far toward affirming them and making them feel valued and loved.
Thank you for all that you have done, continue to do, and will remain doing in the future. It is an honor to be in your company.
Requiem for the status quo was released by Black Rose Writing on July 20th. You can order Requiem at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.
I gave the members of that group 24 hours to leave a comment on my giveaway announcement if they wanted to be entered into my contest to pick one lucky (hopefully lucky) reader to receive a complimentary copy of my novel, Requiem for the status quo.
I received 37 entries, and a considerable percentage of those readers’ entries made mention of their own personal Alzheimer’s/dementia caregiving journey. Here are just a few of those comments:
- I am a geriatric care manager, can’t wait to read it!
- My friend just had to put her mom into a caregiving rest home because she could no longer handle her. She was becoming quite violent. It is a horrendous disease.
I love that you are writing inspiring stories! Many of us are or were caregivers and the hopelessness we feel when we dont see them getting better can be overwhelming. Your compassion is so sweet and much needed in todays world. Im really excited to find a new author I can enjoy!
- I would be honored to read this book, my father had Alzheimer’s disease. I want to tell you that the cover is totally amazing !!!!!
- I would love to win. My husband has Alzheimer’s/ dementia so it is if special interest to me.
Even as familiar as I am with the statistics for this disease – 44 million diagnosed worldwide as of this writing – it still astounds me to hear the personal stories associated with it. Like every terminal disease known to man, Alzheimer’s and other dementia are very personal diseases. The brain – the very essence of a person’s being – is the initial body part affected. What we say, how we behave, and who we are resides in the various, vital parts of our brain. Our brain is the grand traffic director of all things me.
It’s no wonder the very long goodbye associated with this disease is so devastating to the one diagnosed, as well as for the one caring for her or him. It’s very personal, isn’t it?
I am of the belief that family dementia caregivers are 21st century heroes. Additionally, all caregivers, not just those on a dementia caregiving journey are the best of the best. They are:
Ordinary people, doing the ordinary right thing, at an extraordinary time.
I am honored to be in your company.
Requiem for the status quo will be released by Black Rose Writing on July 20th. You can order Requiem at Barnes & Noble and Amazon as well as all online and brick and mortar chain and independent bookstores. Be sure to shop around for the best price, you won’t be sorry you did. And for those of you with eReaders, the eBook will be available at most online book retailers on, or about, July 27th.
Two years ago today, my sister-in-law died from Alzheimer’s disease.
Four and a half years post diagnosis, Nancy Satterberg Desonier was liberated from the cognitive chains that stifled her creative and loving essence, and dramatically shut down her stately and classic physical body.
Another thing happened on July 4, 2012: Nancy’s caregiver husband, my brother Don Desonier, lost his bride of almost 25 years. Don didn’t feel liberated – he would have gladly continued on his wife’s disease journey as the supportive and attentive husband that he was – but he could celebrate the fact that this devastating disease was done robbing he and Nancy of a quality-filled life, and he could take comfort in the fact that his wife’s suffering had come to an end.
I celebrate Nancy today and the thousands upon thousands like her whose lives were cut short by Alzheimer’s and other dementia.
I also celebrate my brother Don and all the caregivers who provided loving support to a loved one who has passed from this disease. You are a hero to many, and you are a hero to me.
The attached article from a blogger that I follow contains extraordinary prose on how dementia can fool, frustrate, and reward, all in one sitting.
Please take the time to read her accounting of how Alzheimer’s has encroached on her family.
It’s not often – or ever – that I would tout the beauty and benefits of mice, especially since where I live in a very rural part of my city, mice are a force with which to be reckoned during their annual winter attempts to seek warmth in crawl spaces, attics, and home interiors.
Today, however, I am making a one-time exception because it appears that mice brains have become very valuable in the medical and science worlds’ attempts to map the human brain, and mapping the human brain contributes to the effort of solving brain diseases such as Alzheimer’s. I’ll leave it up to you to read the full article, attached above, because my efforts at summarizing scientific jargon would fall short of doing that science justice.
What I will say, however, is that I am extraordinarily excited that valid attempts are being made to decipher the science of our brains; attempts that generate hope in the lives of those of us who have personally experienced the destruction of a loved one’s brain by Alzheimer’s – a disease that I’ve been known to call “a murderer.” Read my article, Alzheimer’s disease is a murderer to understand the full impact of my feelings on the subject matter.
I know that a lot of behind the scenes research is being done to eradicate a disease that is always fatal, but we aren’t always privy to what that research looks like. I’ve read numerous horrific statistics about the numbers of people who have – and will have – Alzheimer’s in the years to come. Part of those statistics include the detailed monetary impact on society as a whole, as well as the personal and emotional costs to each of us who have dealt with, and who have yet to deal with, the disease’s intrusion into our lives.
I congratulate the Seattle Times and the New York Times, for publishing the above article. And I sincerely thank the Allen Institute for Brain Science for taking on a task whose efforts will benefit every last one of us in this country, and around the world.
You are my hero Paul Allen. Keep up the good work.
If the monster called Alzheimer’s is going to get you, you may as well be prepared.
How I’m Preparing to Get Alzheimer’s, is a 6 minute and 24 second video recorded in June 2012 at TED Global in Edinburgh, Scotland. This brief talk by Alanna Shaikh will do more to wake you up about this disease than anything you’ve heard thus far.
If there is even the slightest chance that one of us will get Alzheimer’s or other dementia – and trust me, there’s more than the slightest chance – then we’d better start shaping what Alzheimer’s will look like for you and me. Here’s an example.
Ms. Shaikh’s father has Alzheimer’s and she talks about the various hobbies and interests held by her father when he was healthier and how those interests carry through during the Alzheimer’s disease process. He was a college professor at a state school and as Alanna put it, “he knows what paperwork looks like.” Now in the depths of his disease, someone can put any type of form in front of him and he will gladly fill it out, arbitrarily writing his name or numbers on the various lines provided, and he’ll check the boxes littered throughout the form. He flourishes in that engagement of his time.
What happens, however, when your favorite hobby pre-disease is reading and editing academic journals, racing cars, or using electric shop tools to make beautiful well-crafted furniture? How will those hobbies or skills survive the disease process? Not very well. So Alanna has come up with three things that she’s doing now to prepare her for the possibility of the Alzheimer’s monster invading her life.
Please watch Alanna’s video. I think you will be impressed by her thought process.
Caring for a loved one with Alzheimer’s or other dementia, in this instance a spouse, is a difficult task and so very unpredictable. Sometimes the unpredictability brings heartache and extreme difficulty.
sometimes the unpredictability results in a heart filled with renewed promise of goodness and beauty. Celebrating every victory that comes our way – regardless of how small some may think it to be – is reason to strike up the band, blow up the party balloons, and relish the joy that exists in that very moment.
The attached 7 minute film depicts a positive take on being an adult child-caregiver for ones mother. The same could have been filmed of a spouse-caregiver because the message is the same.
Please make every effort to watch this film straight through without distraction. I believe you will conclude – as I did – that what is depicted is beautiful beyond measure.
There is no denying that caregiving is extremely difficult. But there are certain opportunities inherent with the task that create a link between the carer and the one being cared for that might not have been possible without dementia’s onset.
As the adult daughter most involved with my father’s care management, I can conclude that through all the difficulties of his Alzheimer’s journey, there was a certain richness to our relationship that might not have existed without the intrusion of Alzheimer’s in his and my life. I would have preferred that he had never suffered and died from this disease – don’t get me wrong – but I’m grateful for the deeper relationship that resulted from it.
I feel blessed to have been on the caregiving journey with my father. And my, oh my, do I still miss him.
The Seattle Times newspaper has a Saturday column, Faith & Values, that spotlights a variety of religious denominations. One week there might be an article by a Catholic priest, another week, from a Rabbi, another, an Imam from the Islam faith. On Saturday, January 11th, the one who submitted her article is a minister with the Northwest Ministry Network (Assemblies of God), Jodi Detrick.
Ms. Detrick quotes several of the more well-known scriptures from the Bible that focus on hope, one of which is: “But hope that is seen is no hope at all. Who hopes for what they already have?” Romans 8:24
In my experience, I’ve found that there are many messages of hope out in the universe, and not all of them come from a spiritual text. Take Astronaut Mark Kelly’s response to Diane Sawyer on ABC’s 20/20 program a couple years ago. When talking about his wife Gabrielle Gifford’s chances for recovery from a gunshot wound to her brain, Diane Sawyer suggested that he was holding out too much hope for his wife’s successful recovery from the bullet’s onslaught. His response:
“You can’t have too much hope! That’s not practical!”
Isn’t that the truth? How limiting it would be to portion out a wee bit of hope, but not invest fully in that state of being. “In other words, it’s OK to be filled with anticipation for things that seem way out of sight and out of reach … Uncertainty is where hope does its best work,” says the columnist Jodi Detrick. Two years after the 20/20 interview, Gabrielle Giffords is doing “miraculously” better and she would argue that her day-to-day life is very complete, and very worthwhile. Thank goodness neither she, nor her husband, gave up hope!
“Hope outlasts disappointments. Not everything we hope for, happens, it’s true … Unrealized expectations can be an open door to new possibilities – options we hadn’t previously considered.” Jodi Detrick again. I agree with her statement because I’ve experienced those other possibilities. I’ve certainly couched my hopes and dreams to look a certain way, only to discover that the options I hadn’t previously considered managed to transform my hope into something better than I could have imagined.
Interestingly enough, the first hope that Jodi Detrick mentioned when she listed the types of dreams that hopeful people think about, was writing a book. I happen to be writing a book about the effects of Alzheimer’s on family caregivers and the ones for whom they are providing care – a project I started on December 29th, 2012. In the year since then, my novel has been through numerous edits – some of a substantive nature, and many that were grammar related. The mission for my book has always been to put a personal face on Alzheimer’s disease; to expand on the impressive, yet horrific, statistics on this fatal condition by making it more personal, and therefore more real.
One of my first “friendly editors” happens to have the same name as the protagonist in my book, Colleen. When Colleen read the very first draft of the very first 150 pages of my book, her first question was, “Who is your reader?” I insisted then, and I insisted for the past year, that my reader is the current or former caregiver, or the soon-to-be-caregiver who will find themselves amongst the millions of family members caring for a loved one with Alzheimer’s or other dementia. “But does the caregiver have time for the luxury of reading a novel? Or does the caregiver even want yet something else that reeks of the challenges they are currently facing?”
Crap. Of course not. But I kept on structuring the novel in my original – and stubborn – way. My second friendly editor was a coworker who was dying of cancer. Dennis wanted me to hurry up and finish my book so he could read it – “before it’s too late.” I gave him what I had. A week later I met with him and one of the constructive suggestions he gave me was, “You should be considering this novel as a textbook.” My response: “Dennis, I’m not writing a textbook. I’m not even writing non-fiction. I chose fiction as the genre because I don’t have any sophisticated initials that signify astute knowledge, such as: MD, PhD, MSW (Masters of Social Work), and the like.”
Dennis responded, “I do have a MSW and I think your novel should be required reading for medical professionals and others directly involved in Alzheimer’s care.” I continued writing, thinking that a textbook might be a secondary use for my novel, but it would primarily be a vehicle that provides hope and promise for those intimately involved on the Alzheimer’s disease journey. (Didn’t I tell you I can be a little stubborn?)
Fast forward ten months. I had lunch two weeks ago with a friend of mine, Gwen, and a woman who lives in the same apartment building as she. This woman, Liz, works for a company that provides a remarkable early-detection testing and monitoring system for those suspected of having mild cognitive impairment. I’m not here to promote the company, I’m merely providing the background of the person I met.
My friend, Gwen, brought up the fact that I was writing a novel about Alzheimer’s with a focus on the caregiver and patient journey. Immediately, Liz suggested that the founder of her company, who among other qualifications, has a PhD in Clinical Psychology, should read my manuscript. The Curriculum Vitae for each member of this company’s scientific advisory board contains more initials after their names than letters in the alphabet. These professionals know their stuff and most of it focuses on Alzheimer’s and other dementia.
I insisted that if the founder were to read my manuscript, Liz had to pave the way and do so without putting any pressure or sense of obligation on this very busy doctor. She met with him and that afternoon, Liz e-mailed me his contact information. Phew! Very long story, short, he is now in possession of the first 150 pages (the much revised version which I printed and overnighted to him) and he is taking it with him on vacation. What?!
Indeed, what? Also – what does this mean? Can I throw all caution to the wind and have even greater hopes that he and/or his advisory board will provide valuable input so that my manuscript carries more credible weight? Can I also wonder if my manuscript’s exposure to these professionals may segue into what my now deceased friend, Dennis, suggested it should be? Required reading? Whoa! The institutions of higher learning to which these professionals are attached, to name a few, are: Duke University Medical Center, University of Washington (Seattle) Medical Center and Memory Disorder Clinic, Stanford University School of Medicine, and UC San Diego School of Medicine.
I know what you’re thinking. “Aren’t you getting way ahead of yourself Irene? You could be setting yourself up for a huge disappointment.” My response to that is: Haven’t you heard? Hope outlasts disappointments.
And so I keep on hoping.