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.
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/.
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.
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.
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 & Noble and 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.
Life as a Caregiver and Dealing With Stress Caring for Aging Parents – AARP. The attached article, written by Dr. Nancy Snyderman, chief medical editor for NBC News, shows us that even doctor-caregivers are not immune from the stress brought on by caregiving. A year after Nancy and her siblings moved their parents to live near her, Dr. Snyderman became “one of almost 44 million U.S. adults caring for an older friend or family member.”
Statistics show that caregivers tend to patients who are loved ones, an average of 20 hours each week – many times on top of part-time or full-time employment. Before long, Dr. Snyderman came to the realization that she had forgotten to check in on how she was doing. She gained weight, she slept only a few hours a night, and she experienced burnout – not unlike what many of us have felt as caregivers – or former caregivers – for family members.
In my article, Caregiver: put on your oxygen mask first, I address the importance of caring for yourself first, and the patient second. “No way,” you say, “my mom/dad/spouse come first; they need me!” You’re absolutely correct – they do need you, but if you get sick or disabled, you can’t be there for them. That’s why you need to place the oxygen mask on yourself first, and then on the person for whom you are providing care.
Most of us learn the hard way. We get burned out and emotionally or physically incapacitated, and then we start taking care of numero uno. Do yourself – and your loved one – a favor. If you’ve been ignoring the signs of stress that are enveloping you, stop being such a hero and start taking care of yourself. You will benefit from such care, and so will your loved one.
Fellow blogger, Don, talks about his caregiving journey with his wife in which he swore off getting sick because – quite frankly – he couldn’t afford to be sick when his caregiving duties required that he be healthy and available 24/7.
One could argue that just being worried about getting sick might make one sick, but fortunately, that was not the case for Don. Having read many of his articles, it appears that he knew what was required of him as a caregiver – the same thing that is required of all of you who are still on your caregiving journey: assemble a team, spread out the duties, and seek emotional and physical support in whichever form you need.
First and foremost, please read Don’s article attached above. After you have done so, I hope the three articles below will also prove beneficial towards providing direction on how one might assure a successful medical and mental health caregiving journey. When you take care of yourself, you’ll be better equipped to take care of your loved one.
A recent article by Jim Fitzgerald of the Associated Press focuses on a few electronic methods that might relieve some of the struggles experienced by caregivers who try to balance their frantic personal lives with the oftentimes emergent needs of their loved ones. For the purposes of my article, I am only looking at the type of monitoring put in place by a family member to check on an elderly person’s well being; primarily a family member with Alzheimer’s or other dementia.
Beleaguered caregivers getting help from Apps is an eyeopening look at how Smartphone Apps, and other electronic devices, can provide some sort of relief to lessen the caregiver’s load. Many of those who are long-distance caregivers, such as I was for my father several years ago, might benefit from being able to monitor their family member’s safety and well-being from a distance.
But does such monitoring invade the loved one’s privacy? Of course it does; but I guess one could say that the benefits outweigh the disadvantages of such monitoring. Or do they? What comes to my mind is the elderly person’s gradual loss of independence – an aspect of life that many of us would equate to being a requirement for our own quality of life. But I digress.
At best, I think electronic monitoring serves as a stop-gap or interim measure of caregiving before hands-on care is put into place. The Pillbox App keeps a very tentative watch on whether or not a loved one – say a parent – has taken his medication properly. If the parent does not have compromised executive function, it’s certainly easy to “fake it” so that the daughter can feel as though all is well ten miles away. In reality, however, medication mismanagement might be taking place, carried out by the parent.
The Alzheimer’s Association Comfort Zone program requires that a loved one wear a GPS device at all times so that family members can monitor their comings and goings throughout the day. The system is of no benefit if the person doesn’t wear the pager; and if the person has dementia, there’s a strong likelihood of that happening. I’m being the devil’s advocate here, simply pointing out that the system is only as good as the cooperation required to use it. HOWEVER, and this is a demonstrative HOWEVER, it appears to be a very worthwhile system that provides numerous benefits. Other than taking away ones right to privacy, it definitely serves as a safety net for when mom, dad, spouse, or other loved one, are heading into trouble.
I’m skeptical of Comfort Zone but I’m also its fan. I’ve linked the Comfort Zone website above so that the reader can determine if such a system is worthwhile in his or her situation. My skepticism comes about because I wish more attention and financing would be spent on a cure for Alzheimer’s and other dementia so that these current monitoring methods become a thing of the past. A world without Alzheimer’s sounds just as desirous as a world without cancer, or MS, or Lou Gehrig’s disease, to name a few. More disease control financing = more cures.
One final word: I’ve already experienced two family members with Alzheimer’s and all the caregiving migraine headaches associated with those experiences. So please know that I’m a proponent of worthwhile practices that ease the caregiver’s burden. Unfortunately, there is absolutely no fail safe method out there that will give caregivers true peace of mind. Even placement in a long-term care facility is not a 100% guarantee that mom, dad, sis, or gramps will receive the best care possible. I’m sorry to burst your bubble – but it’s true.
In my post, President Obama says the “A” word: Alzheimer’s, I provided some Alzheimer’s statistics that focus on those who are predicted to be diagnosed with Alzheimer’s or other dementia in the years to come. I also talked about caregiver statistics.
One statistic that really resonates with me is the following: a new caregiver is set into action every 33 seconds because someone will develop Alzheimer’s every 33 seconds. In actuality, the stats are far greater than that. Caregivers are “created” every second of the day because there are countless diseases requiring the assistance of someone just like you and me – an unpaid caregiver for a loved one. I use the distinction of “unpaid” so as not to be confused with those who work as caregivers in the health care industry.
The following statement is attributed to former First Lady of the United States, Rosalynn Carter:
There are only four kinds of people in the world – those who have been caregivers,
those who are currently caregivers,
those who will be caregivers, and
those who will need caregivers.
I really don’t think there’s any way around it. How about you? Have you dodged the caregiver or being-cared-for bullet yet?
The article above by a fellow blogger who recently lost his wife due to complications of dementia, echos my sentiments about the need to invite others to join you on your caregiving journey. Walking the path alone is not only inadvisable, but in most instances, it’s impossible. With so many unknowns waiting around the corner, every caregiver needs to enlist the help of those who can effectively support him or her, and as a result, provide much needed assistance to the one being cared for.
I’m a firm believer of team support, as I stated in my article: Caregiving: The Ultimate Team Sport. Another article, Solo Caregiving, provides encouraging ways in which to recruit team members when there are no family members on which to rely.
Taking care of yourself is not selfish. Developing a team of caregiver-helpers goes a long way towards taking care of numero uno – YOU!
Sally Abrahms’ article linked above does a fantastic job of addressing some common emotions felt by the family caregiving community – those who provide free caregiving services to their loved ones. Let’s look at the three emotions she mentions and also look at the struggles many caregivers experience at their place of employment.
Grief. We grieve the loss of the person who is still with us. “When someone dies, it is an overwhelming and horrible experience, but it is the end of something,” says Suzanne Mintz, cofounder of the National Family Caregivers Association. “But with a caregiver, the grief is perpetual; it goes on and on and on.” Until you’ve experienced the ambiguous loss of your loved one, you can not say that you understand that particular type of grief. This ambiguous loss may result from a loved one’s dementia, debilitating disease, or other conditions that rob the patient of their physical or cognitive abilities. Ms. Mintz states that when one person receives a diagnosis, you both receive the diagnosis. You both experience the gradual loss of the life you once had and you know it won’t be coming back. That is a grief that keeps on giving because as time goes on, more and more of one’s previous abilities disappear right before your eyes.
Guilt. “I wish this would all be over so I can get my life back.” Oh my gosh, did I just say that? Many of you have felt that way and then struggled to rid yourself of the ensuing guilt. But guilt is constant – whether it manifests itself in believing that you are not doing enough for your loved one, not doing enough for your family, feeling negative towards the one receiving your care – it is constant. And it is normal. These negative feelings don’t make you a bad person. Rather, they are proof that you are a sensitive, aware and evolving being who hasn’t yet perfected the art of living.
Exhaustion. Physical, emotional, and spiritual exhaustion sneak up on you and if not attended to early enough, they are killers. In my article, Caregiver: put on your oxygen mask first, I address the need to place yourself as more important than the person for whom you are providing care. “Gee, that’s pretty darn selfish!” Not at all. If you get what I’m talking about, you’ll agree that your loved one’s care is fully reliant on your ability to provide it. You can’t do so if you are on the brink of exhaustion, or worse, you die before your loved one, which is more common than you would like to think. You need a caregiving team. That team may consist of other family members and/or neighbors and acquaintances. You can’t do it all by yourself. If you’re a solo caregiver, check out the article, Solo Caregiving. This article provides tips on how to get the help that you need from those around you.
Discrimination. According to the recent report, Protecting Family Caregivers From Employment Discrimination, “roughly 42% of U.S. workers have provided unpaid elder care in the past five years” and that number is expected to rise to about 49% by the year 2017. With so many family caregivers out there, especially with the incidences of Alzheimer’s and other dementia on the rise, we all hope that employers will be more inclined to help their employees. But discrimination does occur in the workplace in the form of: limited schedule flexibility, denied leave or time off, and even dismissal from ones job.
The Family Medical Leave Act (FMLA) protects some caregivers but is an imperfect protection that is not required of employers with fewer than 50 employees. Additionally, of those employers required to adhere to FMLA guidelines, the employee must have been with their company for at least twelve months and have worked at least 1,250 hours during the previous year. With no FMLA protection, your job is at risk – especially in an economy when so many other workers would be glad to put in the hours that you’re not able to fulfill.
A word to employers. I know that it’s hard to maintain success while some employees just aren’t pulling their weight. But I think you’ll agree that some of you need to be more sensitive to the struggles experienced by your caregiver employees – employees who have never let you down prior to this difficult time in their lives. These exhausted souls can’t tread water fast enough – won’t you help them? Please do what you can to make reasonable accommodations that will lessen this temporary turn of events in your employees’ lives.
I congratulate Chris MacLellan, the Blogger whose article is linked above, for coming to the realization that:
- caregiving is a noble and worthwhile job; and
- caregiving can be bad for one’s health.
All of us at one time or another have turned the focus away from our own well-being onto that of others to the detriment of our emotional and physical health. That doesn’t mean that we shouldn’t attend to the needs of others – we must if we’re to be a supportive society – but it’s important to be aware of what we personally need in order to remain healthy. It’s a difficult balance to reach, but it can be done.
My article, “Caregiver: put on your oxygen mask first” addresses the mistaken notion that we can do it all. We can’t. Our reserves will always run low and our fuel tank will always near empty unless we feed ourselves with that which sustains us. Chris discovered what he needed to do. I hope we all come up with the winning formula that allows us to take care of ourselves while we take care of others.