Alzheimer’s and other dementia
Twelve years ago today, my father died from complications of Alzheimer’s disease. That morning I had received a call from the memory care unit where Dad had lived for several years. The nursing manager of that unit said if I wanted to see my father again before he died, I should come as soon as possible. (I had spent a week with him the month before and knew that his prostate cancer would most likely hasten his death.) I first called my husband at work to let him know I would find a flight from Seattle, WA to Medford, OR and be gone…for how long? I didn’t know. Then while on the phone with my brother and sister, I booked my flight online with a tentative return, threw the very minimum of clothing in an overnight bag, and headed to SeaTac International Airport.
If you have read my novel, Requiem for the Status Quo, you’ve pretty much read the account of what transpired for me at my father’s bedside; some of the happenings that day/evening were altered, but the gist of what transpired are contained in Chapters 41 & 42.
Upon my return to Seattle, my energy level was depleted yet still on alert. When you have a loved one with a debilitating disease, a state of alertness is the norm – the status quo of constantly being in a state of emergency, if you will. You keep waiting for the phone to ring with the latest development – such as it did for the last time on October 13, 2007 – but that phone number’s appearance on my Caller ID had ceased.
What hadn’t ceased was the business of dying – all the financial and estate matters one cannot ignore – but because of my father’s diligence and organization leading up to his Alzheimer’s diagnosis, much of what I needed to do on behalf of his estate and us survivors, was readily dispatched in the months that followed my father’s death.
But the “now what?” of life post-caregiving was front and center for me. Initially, I wanted absolutely nothing to do with anything having to do with dementia. I continued to financially support my local Alzheimer’s Association and participated in one more Walk to End Alzheimer’s, but that was it. Then my heart called and I became an Alzheimer’s Association caregiver support group facilitator and shortly thereafter, I entered the world of long-term care advocacy by becoming a Washington State LTC ombudsman, both of which I did for five years.
Then my heart spoke to me again, this time it said, “How about writing about your experience as Dad’s caregiver?” I ignored that thought until I no longer could – it wouldn’t leave me alone! I dragged out all of Dad’s records and my numerous journals, sat at my dining table, and over many months’ time, outlined how I would honor my father’s journey and my family’s experience within the pages of a book that might benefit others.
That was five years after my father’s death. My book was published five years later.
Now twelve years after the end of my father’s Alzheimer’s journey,
my book still manages to make its way into the hands of those who need it.
If you, or someone you know, needs encouragement and a renewed sense of hope,
please make your way to your favorite bookstore, or find it right here.
Blessings to you today, and always.
This week’s Good News story focuses on a commercial venture that offers a highly-discounted Caribbean cruise for Alzheimer’s patients and caregivers. (This is not a commercial for the cruise, rather, it’s a celebration of efforts to lighten the load of those on the dementia path that currently is approaching more than 50 million worldwide.) If you have ever traveled with someone with cognitive impairment, you know first-hand how difficult it can be to keep that someone engaged in activities that meet the impaired person’s needs. I am familiar with family members who have lost their loved one in an airport because of the unpredictability of a person’s behavior. Several years ago I flew in an airplane from Washington’s Dulles International airport to Seattle, seated two rows behind a woman who, quite frankly, should not have been traveling by herself, a person who could not sit still in her airplane seat, roaming down the middle aisle in an attempt to leave the airplane. As stressful as that was for the passengers, that stress doesn’t come close to the anxiety and stress experienced by the traveler who had no understanding of where she was, and no understanding of why she couldn’t simply leave the confines of the tubular travel vehicle. Alzheimer’s “exit-seeking behavior” at 35,000 feet is my October 2012 post that describes this harrowing experience.
But here’s the good news, the above Caribbean cruise – scheduled for April 2019 – is geared to the needs of both the person with dementia and her or his friendly caregiver. The staff and crew are trained to provide an optimal experience for one and all. Times of respite will be offered for the weary caregiver and adult day activities will be offered in abundance for the passenger with early-stage Alzheimer’s or similar dementia.
Now, if that isn’t good news, I don’t know what is.
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!
Today is release day for my debut novel.
On December 29, 2012, I first sat down to write that novel.
On the day of the fifth anniversary of my father’s October 13, 2007 death, I decided to write a novel inspired by my caregiving experiences as his Alzheimer’s care manager. I was certain novel writing would be a huge undertaking because up to that point, I had never written fiction. Because of the enormity of said project, I figured I would wait until the beginning of the following year – you know, a fresh start and all.
But the universe had other plans. My December 29, 2012 horoscope was what the universe used as the catalyst to get my attention. More than that, it shocked me into action. The horoscope so alarmed me, I cut it out of the newspaper, typed it out in large font, and after writing my novel’s very first page, I framed all three to memorialize the outstanding coincidence of what my Taurus-scope said. Here, for your enlightenment, is its wording:
Now’s perfect to start a new writing project; no need to wait until next year. Put down your thoughts without worrying about form, one word at a time.
I showed the horoscope to my husband and if it at all possible, he was more shocked than I at the horoscope’s content. He left me alone the remainder of the day, knowing the horoscope meant business, and so did I. I closed the door to my office, sat at my computer and started typing.
I didn’t know what I was doing. As I mentioned earlier, I had never written fiction. At that point, my personal blog, Living: the ultimate team sport was filled with 100s of non-fiction pieces, most of which centered around aging, long-term care, as well as numerous posts about Alzheimer’s disease, other dementia, and the caregiving struggles faced by families. But to write prose – with dialogue!!!!! – was beyond my skill set, and remained to be for quite some time.
The short of the long of it is that Requiem for the status quo was not the first title for the novel, there were many, the first being Have we met? Aren’t you glad I changed it to its current one? Not only were several titles tried on but my magnum opus went through many rewrites, most notably and importantly, the first draft contained a whopping total of 140,000 words. You see, I had a lot to say and I just kept typing until I had nothing more to add.
That’s an excellent way to get thoughts down on paper, but the first draft is by no means the final product that is pitched to agents and publishers. My now published novel is less than 68,000 words. Yes, lots of cutting and slashing took place over the years, to the point where not only am I proud of the finished product, but a publisher is also proud of it, Black Rose Writing.
I will close this post by providing glimpses of my father to you over the years. I hope you enjoy this montage that includes, from top left: My mother and father’s wedding day, 1947; my wedding day 2000 (my favorite photo of my dad and I); and the Desonier family circa 1971.
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.