I received a new right hip this past Monday afternoon which rendered me fully dependent on the staff of a local hospital, Evergreen Health Medical Center in Kirkland, Washington. As a two-night inpatient at the hospital, I was reliant on staff for absolutely all of my needs.
If you can imagine everything you do during the course of a day requiring at least one medical person to provide intimate assistance, you can easily imagine all the tasks incumbent upon the nurses, certified nursing assistants(CNA), physical therapy personnel, food delivery staff, and even someone such as Barbara the housekeeper, at your beck and call.
My personality is such that I’d much rather be giving than receiving. Each time I pushed the nurse call button I carefully considered whether such a request was warranted: bladder full to rupturing, yeah, warranted; refill of my patient water carafe? Maybe I could wait and encumber the next person who walks into my room.
From the time I checked in for surgery at 11:30 Monday morning until I was discharged at 2:30 Wednesday afternoon, each person with whom I came in contact was fully dedicated to serving my needs. They noticed if my blankets were pushed asunder in my bed and straightened them comfortably around my body. When shuffling with my walker to the bathroom while wearing my backless hospital-issued gown they discreetly covered me up and made sure my dignity was kept intact.
Then there was the aforementioned employee who after knocking on my door said, “It’s just me, Barbara the housekeeper.” Upon granting the 60-something-year-old admission to my room, she said, “I want to be sure your room is clean and acceptable. You don’t need to do a thing, just lay there – and you (my husband) sit comfortably in the folding chair and I’ll work around you.”
I engage absolutely everyone I come across in conversation so it was quite natural for me to converse with Barbara the housekeeper. I asked her how long she had been working at Evergreen and it had been quite some time. “You must have seen lots of changes over the years.”
“Yeah, of course I have, but it’s good. I like what I do. I like all the people I get to meet over the course of a day.”
“I’m sure you’ve met those who, because of their circumstances, weren’t exactly the most friendly people you’ve encountered in your life.”
“Aw, sure, but you get that everywhere, not just in a place like this.”
True, so very true. As I’ve mentioned in past blog posts, each of us has a choice of whether to make or break someone’s day. I can tell you that there was not one employee at the hospital who broke my day, rather, each person made my stay there as palatable as it could possibly be. Mind you, the dings of call lights going off all day and all night from the nurses’ station directly across from my room weren’t the highlight of my stay, but those dings are far easier to accept when you realize that you initiated your share of call dings yourself and benefited from the responses of the dedicated medical personnel who had to answer such pleadings.
All in all, I’d have to say that if you have to go through the pain of getting a new and improved hip in order to lead a more comfortable life going forward, being treated with kindness during the process certainly renders the recovery far more appetizing. This former patient has no complaints whatsoever. She was treated like a queen.
I am reblogging the attached article about Christina Britton Conroy’s book that truly appears to be one all of us Baby Boomers need to add to our bookshelves. Personally, it has been a delight to be one of the AlzAuthors’ newest members. I am in such good company. Coming December 20th, you’ll be able to view my introduction as a member of this enriching group of authors.
I have held three author events since my novel’s release back in July and I have more planned before the end of the year. At the senior centers and independent bookstores where my events are hosted, each person attending is certainly there in support of my efforts, but more importantly, I believe their presence honors my father’s story, a story without a happy ending.
Here’s an excerpt from my novel that speaks of my fictional characters’ dilemma, but it also mirrors that which occurred in my real life experience with Alzheimer’s.
If it’s true that cancer is no respecter of persons, it is equally true that Alzheimer’s disease exhibits the same lack of respect. This disease is a murderer and I’m troubled by the millions of crimes it has gotten away with.
Alzheimer’s is also a robber, not only because it robs a person of his or her memories and future, but also because it exacts an emotional price that few can afford. To be sure, monetary costs are a challenging force to be reckoned with, but many family caregivers and their loved ones would no doubt conclude that the emotional toll on a person far surpasses even the costliest of care fees paid.
Until the person with Alzheimer’s or other dementia becomes blissfully unaware of the disease that is murdering him, he has a front row seat to all that is happening. My dad was the first to know when his senior moments became more than a quirk of the aging process. It grieves me to imagine what he went through when he was alone with his thoughts, witnessing first hand where those thoughts were taking him.
Yes, my father had a front row seat to the effects of a disease that is always fatal. Until he eventually became blissfully unaware, he lived with that fact every single day. If the caregiver thinks she or he has been dealt a bad hand in relation to Alzheimer’s, imagine if you possibly can how that hand plays out with the person diagnosed with the disease. I don’t know about you, but my imagination in such matters paints a picture I’d rather not see.
My very real reward for writing my novel is that my father is honored as a result of my efforts. Additionally, it is my sincere hope that those reading my novel and attending my author events manage to discover that they have a cheerleader in their corner…me.
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.
Craig Boyack, author and author supporter – yes, author supporter – conducted a radio interview of two of the characters from my debut novel, Requiem for the status quo.
Patrick Quinn, father of the protagonist, Colleen Strand, has recently been diagnosed with Alzheimer’s disease and he’s having a difficult time trying to figure out how not to be a burden to his daughter, Colleen. He’s friendly with the radio host, even joking about a part of the male body that withers and needs medicinal support and encouragement from time to time. (Don’t worry, it’s G-Rated, you have to read the context of the interview to fully appreciate the sense of humor this fine, eighty-four year old man exhibits, even in the midst of his disease journey.)
Jonathan Quinn, Patrick’s son, who’s not too keen on what has happened to the father whom he at one time looked up to. Yes, Jonathan is embarrassed by his father’s forgetfulness and seems to think his father’s challenges are all about him, Jonathan, instead of the person who has a front row seat to every twist and turn the plaques and tangles of his diseased brain takes. Jonathan is firmly implanted on the road to denial and sadly, it gets in the way of his relationship with his father.
The interviewer is a fictional character, Lisa Burton, a character in one of Craig Boyak’s novels. The interview takes place on her show, Lisa Burton Radio. This different way of interviewing an author, in this case, me, and spotlighting the author’s novel, is so ingenious, you will be taken aback by how effective Craig’s blogging methods are.
Please, read the interview, and when you’ve done so, I hope you’ll purchase my book from any of the many online and brick and mortar book stores out there, including Barnes & Nobleand Amazon. 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 also be available at most online book retailers on, or about, July 27th.
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 & Nobleand 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.
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.
To celebrate my novel’s release, I held a giveaway on a Facebook readers group, A Novel Bee, and made some extraordinary reader discoveries.
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 & Nobleand 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.
To celebrate my own book’s July 20th release, a book that’s about Alzheimer’s disease and other dementia, I am tooting the horn of other authors who have done the same, a few of whom I know personally.
There’s a high degree of sadness surrounding this list because almost without fail, those authors who have written memoirs, story collections, fiction, and non-fiction books have done so because of their own personal Alzheimer’s journey.
Ann Hedreen,Her Beautiful Brain – A Memoir. Ann lives in Seattle, Washington, and has provided valuable support to me through my own publication journey. To quote Amazon.com:
Her Beautiful Brain is Ann Hedreen’s story of what it was like to become a mom just as her beautiful, brainy mother began to lose her mind to an unforgiving disease.
I can not imagine the struggle Ann endured while being a new mother whose time and energy was already spread so thin when life happened to her and her household, in a manner hardly believable to so many of us.
Collin Tong, Seattle journalist, Into the Storm – Journeys with Alzheimer’s, a compilation of true stories that starts with the very personal story of Collin’s caregiving journey with his wife, Linda. Collin’s support of my project, telling me not to give up when so many agents and publishers wouldn’t give me the time of day, inspired me to keep on keepin’ on. His story collection is amazing. Again, quoting Amazon:
In his compelling new anthology, Into the Storm: Journeys with Alzheimer’s, twenty-three writers, journalists, educators, health practitioners, social workers, clergy and other family caregivers from across the United States share their intimate stories of caring for loved ones with Alzheimer’s disease and dementia.
Each of the twenty-three stories are gems that you do not want to miss. I know you will be as impressed as I was by each and every one of them.
The next entry contains numerous authors and their books, found in one central location: AlzAuthors. The purpose for their site states:
We are AlzAuthors. In some way, each of us who have come together on this site have been affected by Alzheimer’s Disease/dementia. We share our experiences to bring knowledge, comfort, and understanding to others on this journey.
Click on this link to the AlzAuthors Bookstore to discover a wealth of informational and engaging books that will meet the needs of those who are caring for parents or grandparents, spouses or partners, those living with Alzheimer’s and dementia, fiction books, books for children and teens, and those offerings that provide helpful information for one and all.
3rd Act Magazine, not a book, but a publication addressing the third act of one’s life, usually heavy on those of us who are Baby Boomers. This publication has so much to offer its readers. I, for one, am pleased that the subtitle of their magazine reads, Aging with Confidence. You got that right! You’re not done with us yet; we have so much to offer the world that is spread out before us.
And yes, all of the above-mentioned projects prove that a lifetime of experience – the good and the not so terribly good – equates to having something to say, and not being afraid to say it. Which brings me to my part in that effort:
Requiem for the status quo is currently available at just about any bookstore you can walk into or find online. If a particular store doesn’t currently stock my novel, simply request that they order one for you and you should be able to get your hands on it in short order. You can order Requiem at Barnes & Nobleand Amazon. 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. Additionally, would you like your local library to carry my novel? Simply ask them; quite often they are quite willing to accommodate individual requests.
Requiem for the status quo is dedicated to my father, Don Patrick Desonier, who wore his disease with the dignity it did not deserve.
I’ve mentioned in previous posts that my “book tour” may look more like a senior center tour than a literary one. The reason: I want to reach those who could use a bit of what I have to offer. As my Author Bio states, I want to make a difference in the lives of others by writing novels that encourage those who just might need another cheerleader in their corner. At the bottom of each of my site’s pages is a section titled READERS CORNER. Each week I provide a new element of encouragement as my simple way of standing in my readers’ corner.
Yesterday I witnessed one small way in which someone was reached by my novel.
I had a haircut appointment with my wonderful stylist, Molly, of C.J. Salon. Molly has followed my entire publishing journey and is very familiar with the topic of my soon to be published novel, Requiem for the status quo. She finished up with her previous client and welcomed me into her chair. I did the reveal of my published novel which I had brought with me for a much anticipated Show and Tell moment. I also gave her several copies of my marketing brochure that provides a peek into the storyline and the lives of the characters. “Please hand them out to women who could possibly benefit from reading my novel.”
She grabbed one of the brochures, said, “I’ll be right back” and ran out into the parking lot to flag down her previous client. Turns out this client is fully-involved in a family member’s dementia journey and Molly felt she could benefit from reading my book. Turns out she was right. Her client was so excited, she hugged Molly and basically said, “This is what I’ve been looking for!”
That, my friends, was the highlight of my week – someone who wanted what I had to offer and just might benefit from the read. But you wanna know something else? My appointment was initially scheduled for 3 pm. The day before I found out I had a change of plans for my Friday, freeing up my morning, so I called C.J. Salon, asked if they had an earlier opening, and I grabbed it.
Molly’s client benefited from my change of plans – a change that initially was upsetting to me, but turned out to be just what was supposed to happen.
My oh my, I love how the Universe cooperates when its occupants are just going about their lives, oblivious to its whiles!
In less than two weeks, Requiem for the status quo will be released. It 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 & Nobleand Amazon. 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.
February 10, 2000, four years before diagnosisWriting a novel just for the hell of it isn’t what I did when, on December 29, 2012, I started to write REQUIEM FOR THE STATUS QUO.
First and foremost, I sat down at my computer because I had something to say about how Alzheimer’s disease affected my father. Additionally, having graduated from the unofficial school of family caregiving, I figured someone just might benefit from the good – and the not-so-good – ways in which I managed my father’s illness.
Now thirteen years after my father’s initial Alzheimer’s diagnosis, my novel will hit the virtual and brick & mortar shelves of bookstores. It will also make its way in person to a number of senior centers and senior living communities in my area. As an event on their activity calendars, I will read passages from my novel that might just ring a bell in the minds and hearts of those gathered to listen to what this Baby Boomer has to say. Maybe what I share will inspire them to purchase REQUIEM which I will gladly sell to them at a highly-discounted price. And once they’ve read my novel, perhaps they will share it with someone else, and so on down the line.
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 less than 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 & Nobleright now, and Amazonwill 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.
I’ve written several articles over the years about the importance of assembling a caregiving team when caring for a loved one – a team that doesn’t necessarily rely on family because not everyone has a participatory family when it comes to these matters. That was certainly the case for REQUIEM FOR THE STATUS QUO‘s Colleen Strand while taking care of her father, Patrick Quinn. She sought help from her brother but that was not something with which he chose to be involved.
REQUIEM, my debut novel, is now available for pre-order from my publisher, Black Rose Writing. You will receive a 10% discount with code PREORDER2017 if purchased before its release date of July 20th. Additionally, in the days ahead, both Amazon and Barnes & Noble will be offering a pre-order option leading up to the novel’s release. Ebook options will be available at most online book retailers as of July 27th.
Of all the life-changes we encounter during our journey, caregiving is one of – if not the most – difficult speed bumps to get over.
Caregiving: the ultimate team sport suggests how one might use the strengths of each team/family member to handle the varied needs during the caregiving journey.
Family dynamics that hamper caregiving success exposes the need to let go of stereotypes or childhood roles that don’t serve siblings well as adults. If ever there was a time to work together for the greater good, taking care of a family member with dementia or other terminal illness ranks right up there at the top.
Solo caregiving addresses the needs of the person who appears to be strapped with fulfilling all the roles needed for a successful caregiving venture. The solo caregiver need not settle into those roles, however. The help of other, well-meaning individuals, can lessen that daunting task. Certainly, much relies on the neighbor, coworker, even casual acquaintance, but said entities are a resource from which much assistance can be found.
Here are several more articles for the caregivers out there – and those acquainted with a caregiver – to provide some wisdom and encouragement through the tough times:
REASON ONE: You don’t have to know someone with Alzheimer’s disease to benefit from this novel. Let’s face it, when you pick up a novel wherein cancer, murder, courtroom drama, homelessness, financial devastation, or horror are part of the storyline, you don’t put down the book because none of those issues have personally affected you. I mean, when was the last time you picked up a Steven King novel and said, “Man, this is totally irrelevant to me, I’ve never been terrorized by a car named Christine, nor have I ever attended a prom where a girl named Carrie exercised her supernatural powers to ruin the evening for most everyone in attendance.” And even though no one – as of yet – has ever lived Under the Dome, you would still be glued to the pages of that novel (not so much the TV version) to discern how it would all turn out.
When you pick up a novel, you find yourself getting involved with the characters. While you’re wondering how the book may end, you read on to find out what’s going to happen next. Or maybe your eyes are opened about matters for which you previously knew very little and then you can’t wait to see where the storyline leads you. REQUIEM FOR THE STATUS QUO satisfies all of those curiosities.
REASON TWO: You do know someone with Alzheimer’s or other dementia – whether tangentially or intimately. You might be hesitant to read yet another technical treatise or article about the devastating effects of the condition, but you still want to learn more while being entertained at the same time. Did I say a novel about Alzheimer’s can be entertaining? Yes, and I’ll tell you why. The definition of entertainment isn’t just giggles and laughs – as Steven King’s novels clearly demonstrate. According to Merriam Webster, entertainment is also something diverting or engaging. Without a doubt readers will be engaged in the story of the Quinn family from page one when the patriarch of the family, Patrick, finds himself in a very inconvenient situation while stranded on an extraordinarily busy freeway in Seattle, Washington. And you will cheer for Patrick’s daughter, Colleen, as she struggles to redefine normalcy while craving even one minute of status quo. And believe or not, you will find humor in some of the least desirable circumstances faced by a variety of characters who are members of “Club Alzheimer’s.”
REASON THREE: You read Still Alice, by Lisa Genova – maybe you even saw the movie – and you became very sympathetic to those who have faced, are facing, and will face the ravages that Alzheimer’s disease has on families such as yours and mine. And if you were fortunate, you also read the memoir, Her Beautiful Brain, Ann Hedreen’s account of the challenges she faced raising a young family and caring for a mother who was “lost in the wilderness of an unpredictable and harrowing illness.” There is much to be gained by reading various genres on the subject, and quite frankly, not enough is being published in the fiction and memoir genres.
As of this writing, there are more than 5 million people in the United States with Alzheimer’s or other dementia, and worldwide, more than 44 million suffer with the disease. Alzheimer’s disease is not going away. The more awareness and compassion we possess, the more capable we will be of helping ourselves, and others, through this protracted disease journey.
MARK YOUR CALENDARS …
REQUIEM FOR THE STATUS QUO a Black Rose Writing release, will be available July 20th, 2017.
REQUIEM FOR THE STATUS QUO, to be released July 2017, contains fictional characters right out of yours and my reality. If your life hasn’t been impacted by caregiving for a loved one with Alzheimer’s or other dementia, you are at least tangentially connected to someone who has been.
A parent’s senior moments transform into hair-raising episodes of wandering and getting lost at all hours of the day and night during varied seasonal temperatures that may very well threaten their lives.
The husband who was Mr. Fixit for all home repairs, big and small, no longer knows how to use a screwdriver, and becomes combative when challenged.
A sister’s successful writing career is derailed when she can no longer write coherently or understand the written word.
The middle-aged next door neighbor pounds on your front door demanding entry to his home and threatens to call the authorities if you don’t immediately vacate the premises.
Variations of these scenarios abound, and within those story-like confines exist the caregivers who have been thrust into a role for which they were not prepared, derailing their status quo – their normalcy – beyond recognition. These same caregivers had very full lives before their days became what has become the caregiver’s 36-Hour Day. Any down time they enjoyed prior to stepping into their ill-fitting caregiver shoes has been filled with doctors’ appointments, loved one-sitting, and putting out fires. Carefully crafted family and retirement plans are no longer feasible because life as the caregiver once knew it no longer exists.
REQUIEM will give readers an intimate look at a caregiver’s day-to-day reality while also endeavoring to provide hope for what lies ahead. To be sure, there are no happy endings, but promises of resolution and lightness spring forth in the least likely of places and during some of the most awkward of times. Whether you are a caregiver, a former caregiver, or know someone who is, REQUIEM FOR THE STATUS QUO will become a most cherished and often-read bookshelf addition.
No one wants to be a member of a club characterized by a disease that robs a person of their cognitive function and is always fatal. Unfortunately, as of this writing, 5 million Americans (many more million in other countries) are living with Alzheimer’s disease or other dementias. Here are a few more facts extracted from the most current Facts and Figures document published by the Alzheimer’s Association:
In 2016, 15 million Americans provided unpaid care for people with Alzheimer’s or other dementias;
That equates to 18.2 billion hours of care valued at $230 billion;
1 in 3 adults dies with Alzheimer’s or other dementia;
It kills more than breast cancer and prostate cancer combined;
Since the year 2000, deaths from heart disease have decreased by 14% while deaths from Alzheimer’s disease have increased by 89%;
Every 66 seconds, a person develops the disease.
My novel, REQUIEM FOR THE STATUS QUO, (Black Rose Writing publication, July 2017) spotlights one family’s experience in particular – the Quinn family – while also visiting other households affected by Alzheimer’s or other dementias.
Eddie and Katherine, a couple in their 40s. Katherine has a combination Alzheimer’s/Lewy Body dementia, a type of dementia that causes somewhat violent behavior and speech;
Frank and his son, Sean, the latter of whom suffers from a traumatic brain injury (TBI) incurred while on deployment in Afghanistan;
Victoria and George, a couple in their 80s, trying to crawl through the maze of George’s Alzheimer’s disease;
Rose and Sophia, sisters in their 50s, struggling with the effects of Sophia’s vascular dementia;
Donna and Kelly, partners in their 60s, experiencing the devastating effects of Kelly’s Parkinson’s disease and the dementia associated with her disease.
These are characters like you and I. They were living their lives the best they knew how, being good people and doing good for others, yet Alzheimer’s still managed to grab them by the throat and refused to let go.
The storyline is a difficult one but the way in which I have portrayed all of these precious people will touch your heart, and at times, your funny bone. No, there’s nothing humorous about the disease, but people will be people, and when they’re confronted with the impossible, they can find – or create – a bright side onto which they can find redemption and community.
I look forward to introducing you to my characters. Just a few more months before they’ll become a part of your life.
Have world events impacted you in such a way that you feel things are hopeless?
Are you overwhelmed to the point that you say to yourself, What could I possibly do to make a difference?
The answer is:
You can make a difference because kindness trumps all.
I recently wrote Ellen Degeneres to thank her for her ongoing efforts to spread kindness. Sure, at the end of each of her daily shows she says, Be kind to one another, but she puts force behind those words in what she does for others. At the conclusion of my letter to her, I said the following:
We’re not charged with changing the entire world, but we can have an impact on the miniscule portion of the world to which we have access. You’re doing it, and I will continue to do what I can from my corner of the world. If everyone makes a fraction of a difference right from where they are, those fractions will add up to great things.
I’m glad I’m on the same kindness train as you, Ellen, and I’ll keep chugging along until I can’t chug any longer.
I sincerely believe that random acts or words of kindness can make a difference in the world in which we live. There are so many negative and hurtful words being thrust into our universe, can’t we just please try to balance out that hurt with words of encouragement, recognition, and nourishment?
Yes, nourishment. In all our daily interactions – be they via social media or in person – we can nurture the hurt that exists all around us. Our words, our smile, our actions may just change the life of someone forever. Haven’t you been on the receiving end of that type of transformative nourishment? Didn’t it feel good? Didn’t it fill the emptiness within you that hungered and thirsted for confirmation that you matter, that you aren’t a failure, that you have potential?
Let’s revisit how that felt and commit to quenching the thirst of each person with whom we come in contact.
My sister and I as teenagers, and the rest of the familyMy novel, REQUIEM FOR THE STATUS QUO, contains a scene where Patrick Quinn – many years before his Alzheimer’s diagnosis – wakes up his high school aged daughters on April 1st and announces that local public high school students have the day off to honor April Fools’ Day. His daughters attend a parochial school – church based – and when they hear of said day off, they become incensed.
The girls get out of bed – anger seething below the surface of their drowsy bedheads – cross their arms, and they yell, “That’s not fair!”
Patrick agrees, April Fools’ Day is no reason to have a day off from school . . . then he claps his hands together, and barely stifling a laugh, he says, “Gotcha!”
That exact scene happened to my sister and I – thus the reason why I had to include it in my novel. My father had the keenest sense of humor – a funny bone that stayed with him even while the plaques and tangles in his brain leeched the very life out of him. As a family, we were very fortunate that his humor survived until the very end. That is not always the case, as readers will discover when they meet the other characters in my novel whose disease journey is far from cool, calm, and collected.
REQUIEM FOR THE STATUS QUO, release date: July 20 2017.
First of all, take a deep breath and shed the mantle of guilt you’re wearing. Now let’s address your dilemma.
When your father was on his deathbed you made a promise to take care of your mother in her old age. Now she is at the point of not being able to care for herself and you realize that you’re absolutely not cut out for – nor are you capable of – taking her under your roof to provide the care that she needs. What’s a dutiful son or daughter to do?
I’m not advocating that you break your promise to your father but I am suggesting that you consider redefining what that promise looks like. You promised your father that you would take care of your mother and that’s exactly what you’re going to do. Taking care of your mother is not solely defined as moving her into your home and taking care of all her basic needs until she dies. Very few people have the ability or the means to provide 24-hour care in their home. You made that promise with the best intentions and you can still honor your promise without dishonoring your father. Keep in mind that loving your mother doesn’t guarantee your success as her caregiver. Even adult children with a fabulous relationship with their parent struggle greatly in their efforts. And if your relationship with your mother is tenuous at best, try picturing the scenario of you as caregiver and her as recipient of that care. What effect will that have on her, you, and the remainder of your household?
Let’s clarify how best to care for your mother.
Why can’t caring for your mother mean that you’re honest enough to admit that you’re not the best caregiving option? Do your best to find the care alternative that will provide her an optimal quality of life, e.g. adult daycare, errand and housekeeping services, assisted living. Do the research and consult the experts to confidently fulfill your promise to your father by securing the best care solution for your mother. If that solution involves selecting an assisted living facility, there are many resources available to you that can make this move a successful one for everyone involved. As her son or daughter you will be able to lovingly help her transition into a residential location with like-minded older adults where she can receive the care that will fulfill the promise you made to your father.
Now imagine the NEW normal that your mother and your family can experience.
Your mother lives nearby in an assisted living residence. She has companions with whom she enjoys spending time. She receives three wholesome meals a day and when she, or you, feel like seeing each other, you’re just a short drive away! The time she spends at your house will be as a pampered visitor – not an inpatient (or impatient) relative. It’s probably difficult right now for you to see this as a viable option, but I think in time, you’ll find that everyone, including your father, will be pleased with the outcome.
I’m reblogging this article I wrote in April of 2013 because it comes up in my blog stats as being extremely popular to many of you out there. I can only conclude that it’s popularity remains high because there are so many caregivers in the world who are tangled up in a daily life that centers around those with Alzheimer’s disease or other dementia. I hope many more will be encouraged – and pleasingly challenged – by what I have to say in this post.
Walk in Their Shoes… Just for a Minute. The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.
Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us. We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia. If we could, we would shriek at what we see and experience.
So we get frustrated – understandably so. We raise our voices in anger – and feel guilty immediately thereafter. We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!
PET scan of a human brain with Alzheimer’s disease (Photo credit: Wikipedia)
Do not ask me to remember is a loaded statement and one which should give us pause. We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born? Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question? Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with?
Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.” And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?
I’ve been authoring this blog, Baby Boomers and More, for five and a half years. Perhaps that’s a record for blog ownership, I’m not sure, but what I do know is that I thoroughly enjoy writing about matters of significance. I guess that’s why my blog has survived as long as it has: there are a heck of a lot of things going on in the world that fall into that category.
My website address remains the same: http://www.babyboomersandmore.com, but with a broader emphasis on life as it unfolds for all of us born within a certain year bracket:
iGen (after 2000)
Millennials (1980-2000)
Gen X (1965-1979)
Baby Boomers (1946-1964) and
The Greatest Generation (before the end of WWII).
Yes, there are many differences between the generations but we have one major characteristic in common: although as individuals we are strong in many ways, we still need each other to get to the finish line.
With that change in overall focus comes a new, primary blog identification:
Living: the ultimate team sport
If we consider all the people with whom we come in contact as being members of the same team, we will do all we can to support them. We’ll bolster rather than compete; we’ll pick them up rather than step over them as a means to an end; we’ll exhibit respect for each other’s talents while nurturing our own; we’ll not take advantage of weaknesses in order to falsely boost our own strengths. In short, we’ll stand by our teammates and want only the very best for them.
Another goal of mine: write more succinctly, at least after this particular post. 🙂 I know you’re all busy and have better things to do than read my oftentimes lengthy magnum opuses. I’m newly committed to being as succinct as possible, somewhere along the lines of an article I wrote on December 27, 2016: Don’t go there. Let’s face it, as a writer, I should be able to use an economy of words to get my point across to those who’ve chosen to follow me.
And one last thing: the header images you’ll see at the top of my blog (which will cycle through randomly) are from photos I took during a few of my hikes around the Pacific Northwest. Hiking is my passion, so I’m pleased to provide snapshots of views I have been privileged to see.
With that, I’ll sign off for now, so very glad to be a member of your team.
If I can’t do anything useful, at least I would like to do as little harm as possible. Wherever You Go, There You Are, by John Kabat-Zihn
Lainey Piland photo
Do no harm is a practice found in various aspects of society – including the Hippocratic Oath – and it was the underlying principle of Mahatma Gandhi’s revolution and his personal meditation practice. But what does it mean? Is it really as simple as doing no harm? You tell me.
Do no harm: Don’t do anything while driving that will piss off other drivers.
Do no harm: Don’t speak ill of others behind their back.
Do no harm: Don’t use social media to bully or anger an individual or a group of people.
Do no harm: Don’t ignore the server or courtesy clerk who’s working as hard as he/she can for you. Engage them in conversation; make their day by respecting what they do.
Do no harm: Don’t be unkind to anyone; think of how it felt when someone was unkind to you.
Do no harm: Don’t litter or do anything that harms the environment, regardless of how small.
Do no harm: Don’t put off a kindness such as sending a card to someone for no reason at all – or for every reason you can think of. Your card and message may be just what that person needs that day.
Do no harm: Don’t ignore the impulse to turn around to the person behind you while in line to say, “I’m not in a hurry, why don’t you go before me.” You may not be in a rush and he or she may be; think how your thoughtfulness will impact the remainder of their day.
Do no harm: Don’t keep compliments to yourself. For example, if your spouse or friend looks nice, tell him or her. It doesn’t do the person any good if you keep it to yourself. Your lack of attention may cause harm.
Do no harm: Don’t expect someone else to make a difference; you make a difference in whatever way you can, even if doing so is an inconvenience. Your inconvenience may be just what the world needs at that very moment in time.
Do no harm: What I have provided above barely scratches the surface of how we can do no harm. Please add your input in the comments section below to provide all of us with examples of how we might improve our personal corner of the world.
My wish for you: health, joy, and peace in the New Year.
I’m in a medical humor kind of mood so here’s something to tickle your funny bone if it needs tickling:
Mr. Smith was brought to the hospital and taken quickly in for heart surgery. The operation went well and as the old man regained consciousness he was reassured by a hospital staff person – who was also a Catholic nun – that everything went well.
“Mr. Smith, you’re going to be just fine,” said the nun, gently patting his hand. “We do need to know, however, how you intend to pay for your stay here. Are you covered by insurance?”
“No, I’m not,” the man whispered hoarsely.
“Then can you pay in cash?” persisted the nun.
“I’m afraid I cannot, Sister.”
“Well, do you have any close relative?” the nun questioned sternly.
“Just my sister in New Mexico, but she’s a humble spinster nun, just like yourself.”
“Oh, I must correct you, Mr. Smith, nuns are not spinsters, they are married to God.”
“Wonderful,” said Mr. Smith, “In that case, please send the bill to my brother-in-law.”
Happy Friday everyone! Here’s this week’s positive encouragement to make a better world for yourselves, and others. Having a sense of community with those who live in the same neighborhood is a very good thing.
Lately, it seems everywhere I look I read articles about the importance of neighborhood connections. In the past few days I wrote two articles specifically addressing that concept: The importance of good neighbors, and Positive community activism.
The attached article above, written by Froma Harrop, compares today’s community with that which existed in the movie It’s a wonderful life, an annual Holiday classic. George Bailey’s bank customers and neighbors were people with whom he had a connection, “of varying incomes, education, and ethnicity. Each of them was an individual, not just a useful provider of a good or service.” Ms. Harrop goes on to say that the middle ring of society – as existed in George Bailey’s life – has been weakened over the years. Her article outlines her belief…
The longer our lifespan, the more likely each of us will need to be cared for. But one need not be elderly to require such care. Many illnesses strike without thought for a person’s stage in life.
Actor/comedian, Seth Rogen’s mother-in-law was diagnosed with Alzheimer’s in her 50s, an age that many consider to be the prime of life. The successful actor’s finances, plus those of several other family members, supported the care of which his wife’s mother was in need. In time, he, his wife, Lauren, and many others established Hilarity for Charity:
In 2012, Seth and Lauren (along with some amazing friends), created Hilarity for Charity. They later established the Hilarity for Charity Fund as part of the Alzheimer’s Association, through which monies raised are directed to help families struggling with Alzheimer’s care, increase support groups nationwide, and fund cutting edge research. Since its inception, Hilarity for Charity has raised more than $5 million to support these efforts.
One of the ways in which they provide this support is through caregiving grants that provide hours of home care for those struggling to survive the demands of a disease that is always fatal. Could you, or someone you know, benefit from such grants? Please avail yourself of the information provided on the Hilarity for Charity website.
When us kids would say something cruel about someone, my dad would offer the following: “It’s too bad everyone isn’t as perfect as us.”
Dad knew how to get through our childhood – and childish – brains, and in our later years, he continued to impact my life and that of my brother Don, and my sister, Mary.
Without a doubt, the combination of mom’s and dad’s parenting styles really and truly prepared us for adulthood and made us the well-rounded, caring, accepting adults I believe we’ve grown up to be. When Dad died from Alzheimer’s on October 13, 2007, a huge void was left in our lives.
My brother, the father:
My wonderful brother Don, and our dad in June 2005, a year after dad’s Alzheimer’s diagnosis.
Some would say that at 39 years of age, my brother got married later than most. What can I say? He found the love of his life, Nancy Satterberg, in 1987. I’m pretty sure up to that point, no one else qualified for the love Don had for his wife. My brother was, and is, an involved and loving part of his three stepchildren’s lives. Just the other day, his youngest son, who is preparing for his upcoming wedding, told Don that he always considered him as his second dad; not a stepdad, not a replacement for his biological father, rather, a second dad. Per and his siblings, Sten and Kirsten, were fortunate in that way. Don was also a caregiver for his wife who died from Alzheimer’s on July 4, 2012. He was the epitome of an involved, loving, attentive provider of care for the wife with whom he would have celebrated his 25th wedding anniversary in September of 2012.
My husband, the father:
Celebrating the evening he retired: April 28, 2016
Jerry has two daughters, Lainey and Kirstin, and lest you think he ever hoped and wished for a son rather than those two, you would be sorely mistaken. There were no gender limits when it came to actively participating in his daughters’ lives. Hell no! There were hikes, softball games, soccer matches, woodworking training…you name it, he shared his knowledge and interests with them and they benefitted greatly as a result. My husband’s reserved and unassuming manner camouflages the extraordinary love he has for Lainey and Kirstin. His care about their well-being, happiness, and health is evident in all that he does for them, and in the ways he thinks about them and talks to them. Unlike myself, who tends to be a bit overbearing and sometimes far too transparent, my husband exhibits strength and concern by the way he demonstrates his commitment and dedication to his daughters, to me, and to all those whom he considers dear to him. Jerry is a man of few words but when he speaks, every spoken word is worthy of your undivided attention. I’m the luckiest woman alive to have him as my husband.
Happy Father’s Day in absentia, Dad.
Happy Father’s Day fabulous brother of mine.
Happy Father’s Day Jerry – the man with whom I chose to spend my life on February 10th, 2000.
Older people are no different from any of us. People with dementia are no different from us. They all, we all, have the same feelings and needs.
They want to laugh and be silly, they want to be listened to and be taken seriously, they want to be reassured and loved, they want to love and be helpful, make a contribution, just like everyone else.
I learned that here.
It is my hope that all of us learn that same lesson so that whomever is in our lives, so that all those with whom we come in contact, we’ll be able to recognize ourselves in them and perhaps treat them with the respect for which all of us yearn.
Dedicated to unappreciated care partners worldwide. Thank you for all you do. Dear random person who sees my care partner from time to time and feels the need to point out s/he has bruises all over her/his body that look frightening and s/he has really declined a lot since the last time you saw her/him and…
Source: ON LABELS, ROLES AND MARRIAGE WITH ALZHEIMER’S This linked article does a fabulous job of putting a spotlight on the roles we take on when we become caregivers. Does our original role as: wife, husband, son, daughter, brother, sister, disappear when that role-shift takes place?
I’ve known numerous caregivers in my life. I was one.
A younger me with my dapper dad
Before I became a caregiver, I was a daughter. Was I still a daughter once my role as a caregiver became a 24/7 occupation?
It didn’t feel like it when:
I had to cut up my father’s food for him
I had to pack adult protective underwear when I took him on a walk in the park … just in case
I had to correct him for behavior unbecoming of an adult
I took him to a doctor appointment and spoke to the doctor on my father’s behalf
I tucked him in for a nap so I could get things accomplished without him being tethered to me wherever I went …
Was I his parent? Was I his caregiver?
No. I was his daughter. I took on a variety of roles during the years of my father’s decline with Alzheimer’s, but I was always his daughter. As a matter of fact, never had I felt more like a daughter than during the five years of his illness.
During one of my walks in the park with dad, on his last Father’s Day as it turned out to be, two young men rode their bikes toward us and as they got right up to us, one of the men said, “Happy Father’s Day, Sir.”
That young man saw a daughter and a father, not a caregiver and an old man.
Dad took his parenting role very seriously. By the time I was on my own, he had been actively mentoring and caring for me for twenty-one years.
Norcalmom writes a blog that tells it like it is when operating as the primary caregiver for a loved one. She has a full household, with children of varying ages, a mother-in-law with Alzheimer’s, a husband whose work schedule pulls him out of the home during many of the caregiving opportunities, and yet this daughter-in-law manages her household in ingenious ways.
Whether it’s purchasing and installing locks so her MIL doesn’t escape from the house at inopportune times (which, frankly, means any attempted escape from the house) or finding activities to occupy her MIL so Norcalmom can get things done, e.g., making dinner for the family, she puts on her thinking cap, listens – truly listens – to what may interest the oldest member of her household, and does what is needed to get the job done.
Her MIL is very much intrigued with sparkly things, specifically, glitter. In her eyes, if she spots specks of gold-colored glitter, it is not glitter she is feasting her eyes on it is the real deal: GOLD!
Please, click on the link provided at the beginning of this mini-post of mine, and feast your eyes on the treasure within.
I received a new right hip this past Monday afternoon which rendered me fully dependent on the staff of a local hospital, Evergreen Health Medical Center in Kirkland, Washington. As a two-night inpatient at the hospital, I was reliant on staff for absolutely all of my needs.
I am reblogging the attached article about Christina Britton Conroy’s book that truly appears to be one all of us Baby Boomers need to add to our bookshelves. Personally, it has been a delight to be one of the AlzAuthors’ newest members. I am in such good company. Coming December 20th, you’ll be able to view my introduction as a member of this enriching group of authors.
My father was the inspiration for my novel Requiem for the status quo.
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.
Craig Boyack, author and author supporter – yes, author supporter – conducted a radio interview of two of the characters from my debut novel, Requiem for the status quo.
To celebrate my novel’s release, I held a giveaway on a Facebook readers group, A Novel Bee, and made some extraordinary reader discoveries.
To celebrate my own book’s July 20th release, a book that’s about Alzheimer’s disease and other dementia, I am tooting the horn of other authors who have done the same, a few of whom I know personally.
I’ve mentioned in previous posts that my “book tour” may look more like a senior center tour than a literary one. The reason: I want to reach those who could use a bit of what I have to offer. As my Author Bio states, I want to make a difference in the lives of others by writing novels that encourage those who just might need another cheerleader in their corner. At the bottom of each of my site’s pages is a section titled READERS CORNER. Each week I provide a new element of encouragement as my simple way of standing in my readers’ corner.
I’ve written several articles over the years about the importance of assembling a caregiving team when caring for a loved one – a team that doesn’t necessarily rely on family because not everyone has a participatory family when it comes to these matters. That was certainly the case for REQUIEM FOR THE STATUS QUO‘s Colleen Strand while taking care of her father, Patrick Quinn. She sought help from her brother but that was not something with which he chose to be involved.
REASON ONE: You don’t have to know someone with Alzheimer’s disease to benefit from this novel. Let’s face it, when you pick up a novel wherein cancer, murder, courtroom drama, homelessness, financial devastation, or horror are part of the storyline, you don’t put down the book because none of those issues have personally affected you. I mean, when was the last time you picked up a Steven King novel and said, “Man, this is totally irrelevant to me, I’ve never been terrorized by a car named Christine, nor have I ever attended a prom where a girl named Carrie exercised her supernatural powers to ruin the evening for most everyone in attendance.” And even though no one – as of yet – has ever lived Under the Dome, you would still be glued to the pages of that novel (not so much the TV version) to discern how it would all turn out.
REASON TWO: You do know someone with Alzheimer’s or other dementia – whether tangentially or intimately. You might be hesitant to read yet another technical treatise or article about the devastating effects of the condition, but you still want to learn more while being entertained at the same time. Did I say a novel about Alzheimer’s can be entertaining? Yes, and I’ll tell you why. The definition of entertainment isn’t just giggles and laughs – as Steven King’s novels clearly demonstrate. According to Merriam Webster, entertainment is also something diverting or engaging. Without a doubt readers will be engaged in the story of the Quinn family from page one when the patriarch of the family, Patrick, finds himself in a very inconvenient situation while stranded on an extraordinarily busy freeway in Seattle, Washington. And you will cheer for Patrick’s daughter, Colleen, as she struggles to redefine normalcy while craving even one minute of status quo. And believe or not, you will find humor in some of the least desirable circumstances faced by a variety of characters who are members of “Club Alzheimer’s.”
REQUIEM FOR THE STATUS QUO, to be released July 2017, contains fictional characters right out of yours and my reality. If your life hasn’t been impacted by caregiving for a loved one with Alzheimer’s or other dementia, you are at least tangentially connected to someone who has been.
No one wants to be a member of a club characterized by a disease that robs a person of their cognitive function and is always fatal. Unfortunately, as of this writing, 5 million Americans (many more million in other countries) are living with Alzheimer’s disease or other dementias. Here are a few more facts extracted from the most current Facts and Figures document published by the Alzheimer’s Association:
Have world events impacted you in such a way that you feel things are hopeless?
Yes, nourishment. In all our daily interactions – be they via social media or in person – we can nurture the hurt that exists all around us. Our words, our smile, our actions may just change the life of someone forever. Haven’t you been on the receiving end of that type of transformative nourishment? Didn’t it feel good? Didn’t it fill the emptiness within you that hungered and thirsted for confirmation that you matter, that you aren’t a failure, that you have potential?
I’m reblogging this article I wrote in April of 2013 because it comes up in my blog stats as being extremely popular to many of you out there. I can only conclude that it’s popularity remains high because there are so many caregivers in the world who are tangled up in a daily life that centers around those with Alzheimer’s disease or other dementia. I hope many more will be encouraged – and pleasingly challenged – by what I have to say in this post.
I’ve been authoring this blog, Baby Boomers and More, for five and a half years. Perhaps that’s a record for blog ownership, I’m not sure, but what I do know is that I thoroughly enjoy writing about matters of significance. I guess that’s why my blog has survived as long as it has: there are a heck of a lot of things going on in the world that fall into that category.
If we consider all the people with whom we come in contact as being members of the same team, we will do all we can to support them. We’ll bolster rather than compete; we’ll pick them up rather than step over them as a means to an end; we’ll exhibit respect for each other’s talents while nurturing our own; we’ll not take advantage of weaknesses in order to falsely boost our own strengths. In short, we’ll stand by our teammates and want only the very best for them.
I’m in a medical humor kind of mood so here’s something to tickle your funny bone if it needs tickling:
Lately, it seems everywhere I look I read articles about the importance of neighborhood connections. In the past few days I wrote two articles specifically addressing that concept: The importance of good neighbors, and Positive community activism.
The attached article above, written by Froma Harrop, compares today’s community with that which existed in the movie It’s a wonderful life, an annual Holiday classic. George Bailey’s bank customers and neighbors were people with whom he had a connection, “of varying incomes, education, and ethnicity. Each of them was an individual, not just a useful provider of a good or service.” Ms. Harrop goes on to say that the middle ring of society – as existed in George Bailey’s life – has been weakened over the years. Her article outlines her belief…
The longer our lifespan, the more likely each of us will need to be cared for. But one need not be elderly to require such care. Many illnesses strike without thought for a person’s stage in life.
Black, brown, or white.
In the book A Different Perspective on Alzheimer’s and Other Dementias: Practical Tools with Spiritual Insights, author Megan Carnarius relayed a conversation she had with one of the employees she supervised in a long-term care facility who was moving out of state. Ms. Carnarius asked this young caregiver what she had learned from her job of four years. This is what she said,
Norcalmom writes a blog that tells it like it is when operating as the primary caregiver for a loved one. She has a full household, with children of varying ages, a mother-in-law with Alzheimer’s, a husband whose work schedule pulls him out of the home during many of the caregiving opportunities, and yet this daughter-in-law manages her household in ingenious ways.
Living: the ultimate team sport 