Spotlight on Care is an extraordinary podcast developed by the University of California at Irvine Mind Institute.
I was honored to participate in this podcast service very recently and provide it to you at this time. It is only 25 minutes long, a perfect length to grab your attention and then let you be on your way. If you know of a family caregiver who might also benefit, please share it with them.
How about family caregivers who live near their loved one?
This Spotlight on Care audio podcast, only 25 minutes in length, will encourage you greatly. I was the long distance caregiver for my father who died in 2007 from Alzheimer’s disease. This recent podcast produced by the University of California at Irvine MIND institute provides a snippet of how I succeeded, or failed, in my efforts to make my father’s experience as carefree as possible. I was just like you: figuring it out as I went along, picking and choosing methods that might help both my and my father’s experience. Looking back, I can celebrate that I did my best, and that’s all that matters.
Doing your best doesn’t demand perfection, just your best.
I know you’re busy, and this Holiday season has perhaps caught you unawares, so here are two inexpensive book gifts that make the gift giving so very, very easy. If you purchase the eBook version, an email is easily sent to the recipient so they can claim their book, right when you want them to!
Requiem for the Status Quo is a novel that celebrates the lives of caregivers of family members with Alzheimer’s disease and other dementia. A Jagged Journey is a story about a diverse group of perfectly imperfect people. If you know someone who is imperfect, or perhaps you yourself are among the rest of us who are still trying to figure life out, this book is a perfect addition to ones’ bookshelf.
I wrote Requiem to share my family’s Alzheimer’s caregiving experiences with those who might benefit from those experiences. I chose the fiction genre, not memoir, so that along with our family’s actual episodes, I could include those from other families’ lives to represent a well-rounded representation of the highs and lows of the family caregiving journey.
I was my father’s primary long-distance caregiver – caregiving that I carried out in person numerous times for several years at his southern Oregon memory care community, and daily from my home in the Seattle, Washington area. Additionally, as an Alzheimer’s Association support group facilitator and a State long term care ombudsman, I met many family caregiver heroes who I believed deserved to have their stories told.
Journey is a different kind of novel, one that spotlights the challenges of being a fallible human being in a world where what we believe might change from time to time – oftentimes for the better. But the not-so-good changes also exist, because as humans we don’t always get it right. Fortunately, lessons can be learned nonetheless.
But why should you purchase either of these books? Although I believe in my work as a writer, I am painfully aware that readers have millions of titles from which to choose, but I sincerely believe you will be glad that you chose mine as a Holiday gift for yourself or for others. And if by chance you aren’t interested in my novels, please pass this post along to someone who might be. Be well. Stay well, y’all.
Both books are EXTREMELY affordable in any format you might desire. I hope you will consider exploring their pages.
Oh my goodness…you know how it is…the first of November creeps up on us and before we know it, all the traditional Holidays of the year are upon us and we’re wondering where the time has gone.
It’s been awhile since I’ve looked forward to Holiday celebrations but this year I’m geared up and ready. Well, not ready as in I’ve got it all figured out and organized, but ready as in I’m very much up for it. Why is that? Well, for me, I am always looking for a reason to celebrate – whether I’m celebrating an actual occasion or just noting a positive improvement of sorts in my daily life.
During my father’s decline from Alzheimer’s disease, I got into the practice of celebrating every small positive element that came my way. I realized early on in my father’s disease process that big reasons to celebrate weren’t always forthcoming so I committed myself to celebrating even the smallest of victories, and there were many! Doing so guaranteed many opportunities to party, rather than just the few and far between grandiose reasons to don the party hats. My first novel, Requiem for the Status Quo, is a reflection of that period in my life where my celebrate-as-often-as-you-can philosophy was born.
This year has had its ups and downs, hasn’t it? I am quite certain I’m not the only person reading this post that saw illness invade the calm of loved ones’ lives; who experienced loss of some sort that left you reeling; or who questioned whether goodness and mercy had become qualities of the past.
As we near the end of the current year, I hope you are privy to more good than bad and that your reasons to celebrate far outnumber those that make you want to hit something…or someone. Finding that renewed focus, that light at the end of the tunnel, might seem more difficult than not, but if you’re able to do so even just one time before the calendar year expires, give it all you’ve got and do your happy dance! Who knows? Your good vibes just might rub off on others!
I wrote and published my first novel, REQUIEM FOR THE STATUS QUO, in 2017. This novel was a work of love to fictionalize the experience my family went through after my father was diagnosed with Alzheimer’s disease. It’s not just about my family, however, it’s about other people who were unfortunate enough to fall into the category of being a family dementia caregiver. I met them, and sufficiently altered their stories so others could benefit from what was arguably one of the most difficult chapters of their lives.
But it’s not all gloom and doom. So many of the reviews written about my book describe how this novel not only acted as a user-friendly caregiver guide of sorts, but it also stoked the fires of hope that had fizzled out over time.
My 2nd Novel of which I am equally proud.
I sat on A JAGGED JOURNEY for a few years before I realized that its time had come and the story I brought forth within its pages was a story of every-person. We have all had not-so-proud moments in our lives – some of us more than others – but we have also managed to climb out of those times and made decisions in our lives for which we were grateful.
If you are looking for a novel that you can sink your teeth into and walk away as a satisfied reader, please consider one or both of my novels. They are VERY reasonably priced on Amazon and if your local bookstore does not have it in stock, they can certainly order it for you.
I thank you in advance for considering my literary offerings.
October 13th 2007, my father died from complications of Alzheimer’s disease. That morning I had received a call from the memory care unit where Dad had lived for several years. The nursing manager of that unit said if I wanted to see my father again before he died, I should come as soon as possible. (I had spent a week with him the month before and knew that his prostate cancer would most likely hasten his death.) I first called my husband at work to let him know I would find a flight from Seattle, WA to Medford, OR and be gone…for how long? I didn’t know. Then while on the phone with my brother and sister, I booked my flight online with a tentative return, threw the very minimum of clothing in an overnight bag, and headed to SeaTac International Airport.
If you have read my novel, Requiem for the Status Quo, you’ve pretty much read the account of what transpired for me at my father’s bedside; some of the happenings that day/evening were altered, but the gist of what transpired are contained in Chapters 41 & 42.
Upon my return to Seattle, my energy level was depleted yet still on alert. When you have a loved one with a debilitating disease, a state of alertness is the norm – the status quo of constantly being in a state of emergency, if you will. You keep waiting for the phone to ring with the latest development – such as it did for the last time on October 13, 2007 – but that phone number’s appearance on my Caller ID had ceased.
What hadn’t ceased was the business of dying – all the financial and estate matters one cannot ignore – but because of my father’s diligence and organization leading up to his Alzheimer’s diagnosis, much of what I needed to do on behalf of his estate and us survivors, was readily dispatched in the months that followed my father’s death.
But the “now what?” of life post-caregiving was front and center for me. Initially, I wanted absolutely nothing to do with anything having to do with dementia. I continued to financially support my local Alzheimer’s Association and participated in one more Walk to End Alzheimer’s, but that was it. Then my heart called and I became an Alzheimer’s Association caregiver support group facilitator and shortly thereafter, I entered the world of long-term care advocacy by becoming a Washington State LTC ombudsman, both of which I did for five years.
Then my heart spoke to me again, this time it said, “How about writing about your experience as Dad’s caregiver?” I ignored that thought until I no longer could – it wouldn’t leave me alone! I dragged out all of Dad’s records and my numerous journals, sat at my dining table, and over many months’ time, outlined how I would honor my father’s journey and my family’s experience within the pages of a book that might benefit others.
That was five years after my father’s death. My book was published five years later.
Now almost fifteen years after the end of my father’s Alzheimer’s journey,
my book still manages to make its way into the hands of those who need it.
If you, or someone you know, needs encouragement and a renewed sense of hope,
please make your way to your favorite bookstore, or find it right here.
Your parent is diagnosed with Alzheimer’s disease or other dementia and as their biological child you wonder, “Will that be my fate?”
In 2019, an article of mine, Me Worry? Not on your Lifewas published on the CogniHealth website, a company that in partnership with Alzheimer Scotland, developed a caregiver aid for those – especially family members – providing care for a loved one with Alzheimer’s disease or other dementia. (Please note that the linked post references an extraordinary non-profit that I am still a part of but no longer serve in a managerial capacity, having retired from doing so.)
I chose the topic of whether or not dementia might be passed along to biological family members because as a daughter who witnessed the decline of her father as a result of dementia, I certainly had an opinion on the matter. Does one need to worry their entire life about the chance of acquiring Alzheimer’s disease?
I hope you will read my article that while transparent and painfully clear, also provides many rays of hope and encouragement for those in similar circumstances.
At the very least, I am certain you will come away with a clearer understanding of how little value worry contributes to ones’ life.
My recent post, Caregiving: The Ultimate Team Sport assumes the person providing care for a loved one has a wealth of family members upon which to draw for support. When that is not the case, it can be difficult – but not impossible – to find willing team members to provide that support. This article provides advice to the solo caregiver and his/her friends, business associates, neighbors, and community contacts.
THIS IS NOT AN ALL-ENCOMPASSING INFORMATIONAL POST, BUT IT IS A START.
CAREGIVER: BE BOLD – ASK FOR WHAT YOU NEED.
Those people with whom you have contact probably know that you’re the only one carrying the ball when it comes to caregiving but they can’t possibly understand the degree of difficulty you are experiencing. Assuming that to be the case, your friends, business associates, and neighbors may not feel the need to reach out to you with assistance. Now is the time to be very transparent with them and tell them what you need. Easier said than done, I know, but a challenge worth pursuing. Here’s just one suggestion – one that could provide respite and community support.
DINING ALONE IS A DRAG – NOW’S THE TIME TO ASK FOR WHAT YOU WANT
If you are able to leave the house for a meal, there is no shame in inviting yourself to dinner. If these are true friends/acquaintances of yours, they will welcome you into their home. Once you’ve invited yourself a couple times, true friends and valuable neighbors will start to invite you into their dining room on an ongoing basis. Besides, they’ve probably been wondering what they could possibly do to help you out in your situation and you’ve just presented a very easy way for them to do so. Heck – they’re going to cook dinner for themselves anyway; one or two extra people aren’t going to throw a huge wrench into their meal plans.
!!!ATTENTION WELL-MEANING FRIENDS & NEIGHBORS!!!
I think the rule of thumb in these situations is to assume that your solo caregiver friend needs a hand with something, so ask him what he needs. Let’s look at the difference between the following offers of assistance.
Hey Sam, call me if you ever need some help.
Hey Sam, could you use a little extra help around the garden? I’m all caught up with my yard work and would like to help you in any way I can.
Hey Sam, we always cook for a crowd and always have some leftovers. I’d like to give you some leftovers in disposable containers that you can freeze and use any time you don’t feel like cooking for yourself. (Especially needed for the caregiver not at liberty to leave their loved one alone.)
In the 1st example, you’re leaving it up to Sam to feel comfortable enough to inconvenience you (in his mind) with a request for help. I know I’m being somewhat judgmental when I say the following, but I’m gonna say it anyway: The first example of help is an empty offer – an offer that doesn’t carry much weight. Why? It comes across as an expected social comment without any true meat on its bones. You’re basically doing the minimal amount of due diligence while forcing the caregiver to ask for help. In the 2nd and 3rd examples, you’ve given Sam an offer of tangible, definable assistance that shows that you really mean it when you say you’re willing to help out. If neither of those offers fit within Sam’s current needs, you’re still making it easier for him to ask for help with something else: “Wow Larry, thanks so much for your offers but what I could really use is help figuring out the health insurance issues that have kept me awake at night. Can you come over for a cup of coffee, and between the two of us, maybe we can make some sense of this mess in which I find myself.”
Friends, work associates and neighbors – your solo caregiver friend needs help and you could be just the right person with the skill that he needs. Some day you may find yourself in a similar situation and will know first hand how difficult it is to be a solo caregiver. If it takes a village to raise a child, it must take at least that to help someone with the burden of being a solo caregiver.
What’s a pitcher without a catcher? A quarterback without a receiver? A point guard without a center? Individuals – that’s what they are – they are not a team. Caregiving should never be an individual effort because quite frankly, one person cannot do it all.
Take a deep breath; think happy thoughts; and do your best.
Whether the primary caregiver actually does hands-on-care or is the primary “manager” of a loved one’s day-to-day life, that caregiver needs all the support he or she can get. For the purposes of this article we’re going to assume that the loved one, Mom, lives in a long-term care (LTC) facility cared for by professionals. As with every sports team, there is a General Manager of the team – responsible for the overall smooth running of the team, and then there are the individual team members without whom there would be no support whatsoever. Let’s look at the responsibilities of each person on the team. GENERAL MANAGER: whether self-assigned or chosen, the GM is usually Mom’s primary contact/visitor. He or she will also be the main point of contact with the staff at the LTC facility and as such, should definitely be on the “approved list” of people with whom the care staff can discuss every aspect of Mom’s care. Getting on the approved list might involve one or both of the following:
Facility Care Plan/Residential Agreement. Because of the restrictions resulting from the enactment of HIPAA anyone other than the actual patient/resident must be given permission to receive confidential information regarding another individual’s health condition. There is usually a section on LTC facility agreements and/or care plans wherein a primary family member is listed and approved as the person who can have access to all confidential information regarding the resident’s/loved one’s care. Similarly you’ll want to be on the approved list for Mom’s doctors so you’re able to freely communicate with medical personnel regarding any ongoing health concerns. If Mom is able, she will need to sign the necessary documents that indicate her decision to allow that confidential health information be shared with you.
Power of Attorney for Health Care. This legal document allows someone, usually a family member, to speak on behalf of a loved one who may not be able to do so on her own. I’m not a lawyer so I’m not offering any advice regarding this document but the attached link will give you a thumbnail sketch addressing when the appropriateness of such a document comes into play.
Now back to the General Manager’s duties: the GM needs to play on the strengths of each team member.
Alzheimer’s Walking Team: myself, my hubby and my brother
Hold a family meeting – even involving those living out of town using virtual means – to discuss the strengths that each possesses and ones’ willingness to exercise those strengths. Once those team members’ tasks have been assigned or volunteered for, it’s up to the General Manager to provide oversight to assure each task is being accomplished, and to discern if any team member needs assistance completing tasks. As you can see, taking on the role of General Manager carries a lot of responsibility and quite frankly, anyone who assumes this role needs to be good and ready to carry a heavy load. The good news, however, is that the GM is not alone – there are additional members of the team.
FINANCE MANAGER. Your older sister is a finance whiz who’s very comfortable crunching numbers. She gets to take over the day-to-day system of bill paying, investment monitoring, and the like. You might even arrange for all mail to go to this sister’s home so that she has immediate access to timely financial information, in addition to online access of course.
INSURANCE MANAGER. One of your brothers who works in the health insurance industry understands the ins and outs of private insurance and as it relates to Medicare. Congratulations, his strength will contribute greatly to the whole, but you don’t have to work for an insurance company to excel at this task. Some of us – yes, I’m one of them – really “gets it” when it comes to reconciling Explanations of Benefits (EOB) documents from health insurance companies. The Insurance Manager will work hand in hand with the Finance Manager to assure that any balances due a particular medical professional or institution is paid. This can really get sticky when attempting to make sure that everyone who is responsible for paying a part of the medical service – private insurance companies and Medicare – have paid their part prior to sending out a check for the balance, but effective Finance & Insurance Managers can successfully get the job done.
TRANSPORTATION MANAGER.Your other sister has recently retired, or has a very flexible work schedule, and has the ability to take Mom to the various doctor appointments that occur each month. Terrific.
Anyone need a cab?
That sister will be doing the running around with Mom and can make sure each appointment is scheduled, attended, and summarized. Since she’s going to these appointments with Mom, she can sit in on the appointment and bring up issues about which the family has concerns; she can take notes on what transpires during the doctor visit; then she can report the medical updates to the family so everyone is on the same page every step of the way. This sister will also need to be on the approved HIPAA document that the physician’s office requires in order for her to communicate and interact in such a way as to be on top of Mom’s ongoing health care.
FAMILY DYNAMICS THAT GET IN THE WAY OF EFFECTIVE MANAGING. Let’s face it, not every family gets along well enough to avoid the bumps in the caregiving road. If family dynamics were strained to begin with, you can certainly expect those dynamics to be heightened in stressful situations – and caring for Mom is certainly one of them. My article “Family dynamics that hamper caregiving success,” an article of mine from 2011 that addresses family dysfunction and offers advice on how to lessen its impact on your caregiving team.
A team’s success is attainable – but each member has to dedicate themselves to the task at hand for that to happen.
Here’s a post from the past that draws lots of attention. Bringing it into the present today.
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. aking 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.
My first novel, Requiem for the Status Quo, released in July of 2017, speaks of the brutal protracted loss of someone suffering from Alzheimer’s or other dementia. Caregivers for a loved one with dementia witness the gradual loss of someone they love over an extended period of time.
Once my father was diagnosed with Alzheimer’s disease, it took four years for him to leave me. I was devastated the moment he took his last breath on October 13th, 2007, but my heart was continuously ripped apart during the years leading up to that final breath.
48 months, 208 weeks, 1460 days, 35,040 hours, and 2,102,400 minutes of ongoing departures from my and his life.
The characters in my novel have a front row seat to their loved one’s measured departure from this earth. That departure might appear as more-than-a-senior-moment of forgetfulness; an inability to perform simple tasks; struggling to come up with the name of the spouse to whom a person has been married for half a century; or the complete change in personality from a loving spouse to an actual threat to the other spouse’s life.
Loss is a life event from which recovery has no prescribed length of time, but recovery does eventually occur. In time, we live a minute where we can truthfully acknowledge that during that brief snippet of time, we didn’t feel the pain and despair as deeply as before. When that happens, dear friends and readers, I encourage you to celebrate that moment because if you wait for the big events for which you might hold a celebration, you just might be waiting for a very long time.
Celebrate even the smallest of victories and joys that come your way. Doing so will guarantee you many more reasons to be grateful, to experience joy, and perhaps to even witness the life-giving feeling that hope can bring.
I wrote Requiem for the Status Quo to honor my father, other loved ones like him, and all those current caregivers who are just trying to mess up less today than they did yesterday.
Perfection isn’t possible, but when you’ve done your best, you’ve done your best.
I celebrate you.
Requiem is available where all books are sold, or readily ordered if not currently in stock. On Amazon, the eBook is $1.99 and the paperback, is less than $7.
Are you struggling to find a gift for a friend or loved one? Look no further, I am offering both of my novels at a highly discounted price but the sale ends Christmas Evening.
A Jagged Journey and Requiem for the Status Quoare so very affordable right now: Paperback only $7.99 and the eBook is a mere 99 cents! Ebooks are so very easy to gift to someone else; you go to the book’s page on Amazon, choose the Buy for Others option – it looks like this, and you simply enter the person’s email address and you can even set a date as to when you want the eBook gift announcement to arrive in their Inbox! Don’t wait any longer, order the paperback or the eBook now as these prices won’t last, but the book supplies will! And if you’ve yet to purchase either of these novels for yourself, what are you waiting for?!!!
I started blogging about my Mom, Amie, after she moved in with us―after the Alzheimer’s, the congestive obstructive pulmonary disease (COPD), and the schizophrenia nearly killed her living alone. I wrote close to twenty-five posts, after which, I compiled them into my book, The Dementia Chronicles. I hoped our story would help others who found themselves as a caregiver for someone they loved.
During a visit from Phoenix with my sister and grandmother, Mom fell down the last step of our stairs and broke her hip. Within two years of that visit, Mom had moved from Phoenix to Friday Harbor, Washington to live in a separate home on our island property.
Back in May 2003, on our wedding day, Bob had to assist my Mom to walk a mere five-hundred feet from her house to our backyard where we held the ceremony. A month later, Mom was in the ER experiencing her first respiratory attack after having smoked for fifty years.
For a spell, Mom kept at bay what doctors later diagnosed as COPD. In 2010, during another visit to the ER, x-rays showed scarring within and around her bronchial tubes, invading her lungs. Mom declined steadily after that with cognition red flags frequently appearing.
By 2013, she complained of electricians stealing her checks, hackers breaking into her old college records and stealing her social security number―two of the many stand-out issues she insisted were true. By September 2014, she could no longer drive so we disabled the car engine and lied to her, telling her the car was broken and that I would drive her anywhere she wanted to go.
Mom was furious. Her anger became exacerbated, exhibited by bouts of paranoia and more detailed hallucinations. As she grew physically weaker, we knew we had to move her into our home. So, in November 2014 we set out to revamp our garage into a studio apartment. It turned out beautifully―complete with an enormous stone fireplace to keep her warm. It was so wonderful, my husband, Bob, threatened to move down there himself.
Mom fought against the move, but the only other choice was putting her into a memory care facility. With few choices on the island where we live, she would have gone to a facility on the mainland―a four-hour ferry ride or costly thirty-minute flight away – not viable options.
After transitioning her to the studio apartment, Mom tried to escape. I found her huddled by our front door gasping for air, holding her cane and, sitting dutifully next to her dog, Teddy, his own leash in-hand.
But, the hallucinations grew stronger.
Within a month of the move, the big hallucination occurred. She believed someone had snuck into her apartment, shimmied across the floor on his back over to her fireplace and had stuffed crumpled newspaper into the chimney flue causing smoke to billow. It was a cold October but she opened all her windows to air out the room anyway. There was no smoke. There was no man stuffing newspaper. What there were, were sounds―tinny “plunks” whenever the gas fireplace kicked on and off.
After a month of fighting the hallucinations and failing, I started Mom on anti-psychotics and anti-anxiety meds. Within a few days, the visions calmed.
When she normalized, I learned many things, like, how much Mom loved grilled cheese sandwiches and chocolate shakes. The in-home nurses told me I had earned an unofficial OTJ nursing degree.
One month later, after I finally figured out how to manage our lives with Mom’s, she died. I didn’t go out or to church for four months.
I still have moments when I hear Mom call for me―that’s how PTSD is. I remember screaming, anger flaring about anything and everything for six months after she died―fortunately, it was short-lived. But this is the thing, if I had a choice to do it again, I’d do it all over, the same way, but with more chocolate shakes and grilled cheese sandwiches for Mom.
AUTHOR BIO
Susan Wingate is a #1 Amazon bestselling author of over fifteen novels, many of which are award-winners. She writes across both fiction and nonfiction genres and typically sets her stories in the Pacific Northwest where she is the president of a local authors association. She writes full-time and lives in Washington State with her husband, Bob.
June is Alzheimer’s and Brain Awareness Month, a time to increase understanding of what dementia is and how it impacts the lives of those it touches. It’s also a great time to work to decrease the stigma and silence that too often accompanies an Alzheimer’s diagnosis.
Each June AlzAuthors hosts a book sale and giveaway to help caregivers and those concerned about dementia find knowledge, guidance, and support offered through shared wisdom and experience. AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience. I’m proud to be a part of this growing non-profit organization, and I’m excited my eBook, Requiem for the Status Quo, is a part of this sale for only 99 cents, but only for a week!
June 15th through June 22nd you can take advantage of this biannual opportunity to purchase excellent resources on the dementia diseases for free or at reduced prices. AlzAuthors offers a variety of genres, including fiction, memoir, non-fiction, and children’s and teen literature. Most are available in Kindle and ebook, and many are available in paperback and audio. I would like to encourage you to build a library of carefully vetted books to help guide and inspire you every day.
These books are written from a deep place of solidarity, vulnerability, and love. May you find one – or two, or more! – to help guide you on your own dementia journey. Click here for the sale’s discounted offerings.
Nearly 500,000 individuals are diagnosed with dementia every year. Year after year. As stunning as that figure is, it does not take into account the family members and caregivers who are subsequently affected by each diagnosis. When they are included, the numbers rise to an even more incredible level.
What this means in our society is a rapidly ballooning population of people faced with painful scenarios and the need to make vital end-of-life decisions for those who no longer can—a role for which most are largely unprepared. Sadness, confusion, guilt, anger, and physical and mental exhaustion become the norm for these families as the disease enters its final stage. The toughest decisions I ever made were about the life and death of my mother, who had lost her voice in decisions to dementia. But, I was one of the lucky ones: My 30 years as a doctor specializing in the care of older people and end-of-life care had prepared me to face these decisions. Yet, even with that advantage, I struggled. And my siblings struggled. The challenges that dementia and end-of-life decisions present can be – and usually are – overwhelming. When I looked for a resource to help my siblings, I found none. My personal experience compelled me to fuse my clinical knowledge, with everything I learned helping to care for my mother, into a book to help others. My family’s experiences guided me in what the book should include. As I reflected, I also realized the growth, hope, lessons, and transformation that occurred during living with a beautiful woman with dementia. While the sometimes-overwhelming nature of caregiving sent me to the bookstore looking for a guide, when writing the guide, I wanted to acknowledge the experience, strength, hope, and love that also accompanied the journey.
This book is laid out as a guidebook. Each chapter includes stories of families I’ve met and worked with during the last 30 years. These stories are meant to illustrate a common issue, concern or situation that occurs in late-stage dementia, and I hope that by seeing how others have met these challenges, others will see a way forward. This guidebook deals with the emotional aspects of being a surrogate decision-maker, communication with others at a challenging time of life, and the all-encompassing grief experienced in the process. Additionally, it provides information on dementia, its progression and the potential change in goals of care that occur as the disease moves from a chronic to a terminal stage. Finally, the book provides a view of the joy and fulfillment that can accompany assisting in the dignified death of someone you care for.
Author Bio
Anne Kenny, MD, author of Making Tough Decisions about End-of-Life Care in Dementia, published in 2018 by Johns Hopkins University Press, is a Professor of Medicine with specialty training and board certification in Geriatric Medicine, and Palliative and Hospice Care. She has been a practicing physician for over 30 years and has been recognized by her peers as a “Top Doc” in Geriatric Medicine. She has been honored with a Brookdale National Fellow and the prestigious Paul Beeson Physician Faculty Scholar awards. Dr. Kenny has worked clinically as a geriatrician in nursing homes, assisted living, rehabilitation, and clinical outpatient settings. Dr. Kenny has found joy in her work with individuals and their families managing issues related to the diagnosis of dementia. Her experience in partnering in the care of these families touched close to home when her own mother was diagnosed with dementia. Dr. Kenny joined with her mother and her brothers and sister to provide the best care for her mother during the early and middle years following her mother’s diagnosis. Her expertise, coupled with her mother’s playful spirit and her sibling’s openness, support, intelligence, and compassion, allowed for the highest functioning and independence of her mother for several years. Dr. Kenny’s expertise and experience in inpatient and outpatient Palliative and Hospice care were called on when her mother reached the final stages of living with dementia. The Kenny family worked together for their mother’s graceful exit from this planet.
In addition to her clinical practice, Dr. Kenny lectures to both healthcare professionals and the public on aging-related issues including navigating dementia, exercise, nutrition, hormone therapy, death and dying, and frailty. She is an educator of medicine and research skills. She has over 100 scientific publications and presentations focused on improving the care and functioning of older adults.
This post is about anticipatory vs sudden death. I know that doesn’t sound like a very positive post in honor of my sixty-seventh birthday, but this subject matter weighed on my heart the other day so I decided to write about it.
The last time I saw my mother was the 3rd week of August 1994. She died one month later. Mom and Dad visited their adult children during the month of August: my brother and I in the Seattle, WA area, and my sister in Northern California. What a gift that was – the impact of that gift not fully appreciated until Mom was taken from us during her sleep on September 24, 1994 – a life-changing shock to my father who found her, an occasion for us kids to receive the worst news possible by telephone.
The last time I saw my father was October 13, 2007 at his bedside as cancer and Alzheimer’s disease leeched the life from him. When my father was diagnosed with Alzheimer’s four years earlier, we knew there was no cure; we had time to prepare for the inevitable, an inevitability accelerated by a cancer that was not operable due to my father’s frail condition resultant from the slow deterioration of his body by Alzheimer’s disease.
Which death was more difficult, the fully unexpected one, or the expected one?
There is no comparison, and by that I mean you cannot compare grief in that manner. Grief is grief and although the shock of my mother’s death was a jolt to our emotional systems, so too was the slow death that occurred for my father. The outcome was the same: someone we all loved no longer existed, but more importantly, we became painfully aware that whether a person is seventy-seven years old when they die, as was our mother, or eighty-nine years old as was my father, life is short.
The child who succumbs to an illness, the teenager killed in an automobile accident, the newly married sweethearts starting out on their journey as a couple, the sixty-something-year-old or centenarian whose days come to an end, all those lives are valuable and their ending won’t always be anticipated.
It may be trite to say live each day as though it were your last, but trite or not, that’s what each of us needs to do. I do so without being morbid about it – rather, I have gotten into the habit of living and loving fully, always respecting and honoring those with whom I come in contact, and spreading kindness and truth wherever I go. Because, as I’ve said: life is precious.
GRANNY CAN’T REMEMBER ME: A CHILDREN’S BOOK ABOUT ALZHEIMER’S
by Susan McCormick
Granny Can’t Remember Me, my lighthearted picture book about Alzheimer’s disease and dementia, was motivated by our family’s experience with my mother’s Alzheimer’s. My sons witnessed her agitation when she knew her memory was failing, yet we learned how to shape our conversations so they were pleasurable for all. My boys always started a visit with my mom with, “Hi, Granny, it’s me, James, or it’s me, Peter.” This set my mother up to know she was the grandmother and this was her grandchild. If not for those clear introductions, my sons would be greeted with, “Which one are you?” I wrote this book for children like mine, who need coping skills for this sometimes scary and sad all-too-common family situation.
We learned not to ask any questions, because this would make my mother anxious and worried. Before her Alzheimer’s progressed, my lawyerly mom would try to figure out why she didn’t know the answer, and she would often try to fake an answer or turn the conversation away from the question. This upset her. So, my boys would just state the facts and start a conversation. “Today is Friday and it’s root beer floats and milkshakes day. I love root beer floats and milkshakes.” Then my mom could join in with, “I love chocolate milkshakes best of all.” In the book, six-year-old Joey doesn’t ask his Granny what she ate for lunch because he knows she can’t remember.
Another trick was to have a story my boys knew my mother enjoyed, usually about Albert, our huge, slobbery Newfoundland dog. The boys could say, “Albert got stuck in the pantry and ate an entire bag of flour.” Then my mom would say, “Oh, Albert, what a dog! What a mess!” They could tell the same story over and over; my mom always loved it and couldn’t remember that she’d heard it before, which always presented an interesting conversation topic. Alternatively, they encouraged my mom to tell her favorite stories. In Granny Can’t Remember Me, Joey hears Granny’s stories again and again, how Mom cut Uncle Jim’s hair playing barbershop or when Jim got a bump on his head playing catch with rocks.
We never questioned anything my mom said. When I told her James wanted to learn to drive a manual transmission but couldn’t find a car with a stick shift, my mom brightened and said, “My car is a stick shift, he’s welcome to borrow it.” Instead of telling my mom she hadn’t driven in years and that her car was long gone, I said, “Thank you, I’ll let him know.” She beamed, knowing she was helping. In Granny Can’t Remember Me, Joey knows his grandmother’s dog was alive long before he was born, but he doesn’t tell this to Granny, he just goes along with her story.
These methods, not asking questions, going with the flow of the mind of the person with dementia, and telling favorite stories, served my boys and our family well. In the book, though Granny can’t remember Joey likes soccer and rockets and dogs, with the endearing stories of her Three Best Days, Joey knows she loves him just the same. Granny Can’t Remember Me shows a boy’s acceptance and love for his grandmother despite her unfortunate illness. I hope the story helps other families dealing with dementia as well.
Author Bio
Susan McCormick is an author and doctor who lives in Seattle. She also wrote The Fog Ladies, a cozy murder mystery with spunky senior sleuths set in an elegant apartment building in San Francisco. She graduated from Smith College and George Washington University Medical School, with additional medical training in San Francisco and Washington, DC. She served as a doctor for nine years in the US Army before moving to the Pacific Northwest. She is married and has two boys. Her mother and father-in-law had Alzheimer’s disease.
I am not a writer, I happen to be a woman, mother, spouse, sister, grandmother, aunt, and a friend who has tried her hand at writing. I wrote a novel, Requiem for the Status Quo, to honor the father for whom I provided care when he had Alzheimer’s disease – a disease that took his life on October 13, 2007. I didn’t set out to be a novelist – arguably, I’m really not a novelist at all – but I knew it was imperative that I do something important for future Alzheimer’s caregivers and to use whichever vehicle was needed to accomplish that something. For me, it was writing a book.
Then what? What else could I possibly do to magnify the impact I set out to make regarding the disease that takes everyone it settles on, and forever changes the family members associated with its victims?
What I did was join AlzAuthors, a digital and community platform that uses the art of storytelling to light the way for those impacted by Alzheimer’s disease, to advance understanding of the disease, and to lift the silence and stigma of Alzheimer’s and other dementias. As a newly published author and a survivor of dementia caregiving, I was extraordinarily impressed – and still am – with the organization founded by three daughters of Alzheimer’s who sought a place of refuge and resources for their own caregiving journeys.
Then a funny thing happened – one of those founders asked me to join the management team of five, an invitation I gladly accepted, and with the guidance of a business consultant, who just happens to be my own daughter, AlzAuthors went from being a growing community of authors to a 501(c)(3) non-profit organization.
Then something else happened: although not serious, my health took a debilitating turn that now requires me to step back from my AlzAuthors responsibilities. Only the patient knows what she can handle, and what I know is that my focus needs to be on my health, as well as on the precious family that means so very much to me. I am still an AlzAuthor and I very much support AlzAuthors’ non-profit mission, but I will do so from a slightly removed distance.
Of this I am certain, and I quote Pico Iyer when I state:
In an age of acceleration, nothing can be more exhilarating than going slow.
In an age of distraction, nothing is so luxurious as paying attention.
In an age of constant movement, nothing is so urgent as sitting still.
I completed another novel with a message I feel is of great importance that I will publish later this year. Currently, however, I have more important matters on which to spend my time and energy.
Now is my time for sitting still – focusing on me, and focusing on my family. That is the latest chapter I am writing for my life, hoping to get it right, once and for all.
Leave it to Reno, Nevada to figure out how to use dance to benefit those with cognitive impairment. This story spotlights a wonderful dance club that is making a grand impact on the lives of those with dementia and their loved ones.
Fourteen years ago, my mother was diagnosed with an aggressive form of breast cancer. She was a brilliant woman who’d spent the majority of her career in the legal field as a very sought-after court reporter. But as her disease progressed to her brain, her physical and mental health slowly declined. The woman I knew, the one who could add columns of numbers in her head and spell medical terms longer than her arm, slowly lost the ability to balance her checkbook and manage her meds.
It soon became evident that someone would have to step in and help my father manage her care.
Unlike a lot of caregivers, I was fortunate. I have two sisters and a brother. All of us agreed to give one week a month to come “take care of Mom.” But I lived 8 hours away and had to make the long drive alone. Added to the strain of doing my part for Mom, I had a husband, a drama business, and two teenagers still living at home.
For two years, I juggled Mom’s care and my family. It was the most wonderful thing I’ve had the privilege of doing. It was also the most stressful, exhausting, and one of the saddest times in my life. When Mom’s thoughts were clear, we’d reminisce about old times, or I’d ask questions about her childhood. I did my best to collect her knowledge of our family tree. But as cancer progressed in her brain, the good days became fewer and her thinking became more like that of someone suffering from Alzheimer’s disease.
Mom had little notebooks everywhere with jottings that made no sense and her actions became dangerous. One day she drove her motorized wheelchair to the curb, slid into her old Lincoln, left her scooter on the side of the road, and drove herself to Walmart. When she got to the store, she realized that without help, she couldn’t get to the motorized cart she needed to navigate Walmart. She sat in the Walmart parking lot for thirty minutes, had a good cry, then turned around and drove home. Fortunately, she didn’t wreck the car, she found her way home, and her scooter was right where she left it.
To keep from crying about Mom’s deterioration, I learned to laugh. Humor became my key to surviving the horrible process of watching pieces chip off of this person I’d always thought was invincible. Watching Mom deal with her impending death taught me a lot about how I wanted to die. There were things I wanted to do and so many things I wanted to say while I still could. Most importantly, I gained a deeper appreciation for each day and the importance of faith, friends, and family.
But I wasn’t sure what to do with the stress I felt for how much time taking care of Mom was taking away from caring for my family. We’d just moved to a new city. My teenage children were adjusting to a new home, new school, and trying to make new friends. The burden of taxiing them to all of their activities fell to my husband. Every time I missed one of their activities, I was swamped with guilt. When I was with Mom, I felt like I was failing my kids. And when I was with my family, I worried that Mom’s care would fall through the cracks.
While this fictional story does not depict the exact journey I had with my mother, many of the feelings portrayed in the three-book series come from the ups and downs I experienced during the caregiving process. When I did the research into the different types of dementia, I realized the dilemmas that arose during my intense period of caregiving were not unique to me. Millions of you are currently sacrificing your time, money, and efforts to care for an aging parent. Your struggle is real.
My prayer is that this three-book series will give you permission to laugh, rest, and to ask for help when you feel pulled in a thousand different directions. That you will experience love on the deepest level when you give love to another—whether or not they give love to you. That by your loving actions you will teach your children what it means to love, even when it’s difficult. That you’ll find something to laugh about every day. And that, in the end, you’ll forgive yourself for feeling like you failed everyone who had you sandwiched between two impossible choices.
Lynne Gentry Author Bio
Lynne Gentry is an actor/director turned award-nominated fiction author who loves using her crazy imagination to entertain audiences with her books. Her varied works range from the highly-praised time travel series (Carthage Chronicles) to two laugh-out-loud romantic comedy series (Mt. Hope Southern Adventures and the Women of Fossil Ridge). She recently released a co-written medical thriller (Ghost Heart) with author friend Lisa Harris. RT Reviews calls Lynne Gentry a Top Pick author and one to watch. Readers say her writing is extraordinary and her stories exceptional. When Lynne is not creating enchanting new worlds, she’s laughing with her family or working the cancer wards with her medical therapy dog. Find out more about Lynne and her books at www.lynnegentry.com.
Your parent is diagnosed with Alzheimer’s disease or other dementia and as their biological child you wonder, “Will that be my fate?”
An article of mine, Me Worry? Not on your Lifewas recently published on the CogniHealth website, a company that in partnership with Alzheimer Scotland, developed a caregiver aid for those – especially family members – providing care for a loved one with Alzheimer’s disease or other dementia.
I chose the topic of whether or not dementia might be passed along to biological family members because as a daughter who witnessed the decline of her father as a result of dementia, I certainly had an opinion on the matter. Does one need to worry their entire life about the chance of acquiring Alzheimer’s disease?
I hope you will read my article that while transparent and painfully clear, also provides many rays of hope and encouragement for those in similar circumstances.
At the very least, I am certain you will come away with a clearer understanding of how little value worry contributes to ones’ life.
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.
Twelve years ago today, my father died from complications of Alzheimer’s disease. That morning I had received a call from the memory care unit where Dad had lived for several years. The nursing manager of that unit said if I wanted to see my father again before he died, I should come as soon as possible. (I had spent a week with him the month before and knew that his prostate cancer would most likely hasten his death.) I first called my husband at work to let him know I would find a flight from Seattle, WA to Medford, OR and be gone…for how long? I didn’t know. Then while on the phone with my brother and sister, I booked my flight online with a tentative return, threw the very minimum of clothing in an overnight bag, and headed to SeaTac International Airport.
If you have read my novel, Requiem for the Status Quo, you’ve pretty much read the account of what transpired for me at my father’s bedside; some of the happenings that day/evening were altered, but the gist of what transpired are contained in Chapters 41 & 42.
Upon my return to Seattle, my energy level was depleted yet still on alert. When you have a loved one with a debilitating disease, a state of alertness is the norm – the status quo of constantly being in a state of emergency, if you will. You keep waiting for the phone to ring with the latest development – such as it did for the last time on October 13, 2007 – but that phone number’s appearance on my Caller ID had ceased.
What hadn’t ceased was the business of dying – all the financial and estate matters one cannot ignore – but because of my father’s diligence and organization leading up to his Alzheimer’s diagnosis, much of what I needed to do on behalf of his estate and us survivors, was readily dispatched in the months that followed my father’s death.
But the “now what?” of life post-caregiving was front and center for me. Initially, I wanted absolutely nothing to do with anything having to do with dementia. I continued to financially support my local Alzheimer’s Association and participated in one more Walk to End Alzheimer’s, but that was it. Then my heart called and I became an Alzheimer’s Association caregiver support group facilitator and shortly thereafter, I entered the world of long-term care advocacy by becoming a Washington State LTC ombudsman, both of which I did for five years.
Then my heart spoke to me again, this time it said, “How about writing about your experience as Dad’s caregiver?” I ignored that thought until I no longer could – it wouldn’t leave me alone! I dragged out all of Dad’s records and my numerous journals, sat at my dining table, and over many months’ time, outlined how I would honor my father’s journey and my family’s experience within the pages of a book that might benefit others.
That was five years after my father’s death. My book was published five years later.
Now twelve years after the end of my father’s Alzheimer’s journey,
my book still manages to make its way into the hands of those who need it.
If you, or someone you know, needs encouragement and a renewed sense of hope,
please make your way to your favorite bookstore, or find it right here.
In celebration of the many former and current family caregivers in the world, and in honor of their loved ones with Alzheimer’s or other dementia, AlzAuthors has released the eBook of Volume II of Alzheimer’s & Dementia Caregiving Stories. The introductory price is only $1.99. Be sure to get your copy now!
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.
AlzAuthors is celebrating their four year anniversary as an entity by offering many discounted books for an entire week, but that’s not all. The Longest Day – which starts this discounted week-long period – is known in the Alzheimer’s community as a day to celebrate and honor those with the disease, and those who have passed from the disease.
AlzAuthors honors each caregiver – past and present – who has experienced the struggles inherent with helping a loved one with Alzheimer’s disease or any other disease under the dementia umbrella; they are offering this discounted book purchasing opportunity to everyone who might benefit. If you know of someone in that category, please share this post with them – you will be doing them a great favor. Clickright here to discover the discounted prices, then click on the book cover (or covers) of the books you wish to purchase, and you’ll be directed to the purchase page for each book. It’s that easy!
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.
A lot of time and effort go into writing a book. Regardless of the genre, much needs to take place prior to that work of art arriving in the public’s eye to be consumed. The writing process is grueling: outlining; picking character names – developing those characters to become who you need them to be, killing off characters that don’t add anything to the storyline or content; researching anything and everything having to do with absolutely every topic you decided to include within the front and back covers of your project; pounding out page after page of your shitty first draft – because every first draft is shitty; editing, cutting and pasting, throwing out your manuscript and then retrieving it from the garbage because you can’t bear to give up on something that initially seemed to mean so much to you.
But the preparation for my novel began years before I knew I would even be writing it.
My life changed forever when my father was diagnosed with Alzheimer’s disease. Up until that point, AD was something that happened to other people. Just like everyone else, I was afraid of it – had friends whose parents or other loved ones were diagnosed with it – but just like everyone else, I really and truly did not think it could get close enough to harm me, but it did. You see, I had hoped my professional work in the assisted living and memory care field would be as close as I would ever get to the dreaded disease that is always fatal, but I was wrong.
As my author bio states: Having previously worked in memory care, she was not new to the disease, nor was her family immune.
Years after my father’s death I chose to prolong my involvement with all things dementia, venturing forth into one of the most competitive fields around because it appears that everyone … everyone … has a story to tell, and many have chosen to tell it. With well over 8 million books currently available on Amazon and just a fraction of those touted as Best Sellers, a person would be crazy to even think about adding to those numbers!
Or that person would be brave.
Bravery sounded better than crazy to me, knowing that putting myself out there would leave me vulnerable, exposed before every critic who, although a reader and not an author, would not shy away from tearing apart my completed labor of love. But I wanted something positive to result from my father’s and my family’s Alzheimer’s experience so rather than shying away from risking failure, you know, doing nothing that might prove disheartening, I chose to lay my heart out on the line.
And I am a success.
I am a success, not because Requiem for the status quo made it to Oprah’s book club and/or the New York Times’ Annual Top Books list, and certainly not because of any wealth publishing a novel has brought me…relatively few authors make money in this field. I am a success because I let my love for my father be translated into a novel, creatively based on my own family’s experience, so that others – whether a million in number or just a thousand – could find some encouragement and hope through the ashes of my family’s grief.
And guess what, others read my story and told me time and again how much it resonated with them; how my writing seemed to mirror what they too went through, or were currently going through. Readers thanked me for my story … they thanked me! If that isn’t success, then I don’t know what is.
This Spotlight on Care audio podcast, only 25 minutes in length, will encourage you greatly. I was the long distance caregiver for my father who died in 2007 from Alzheimer’s disease. This recent podcast produced by the University of California at Irvine MIND institute provides a snippet of how I succeeded, or failed, in my efforts to make my father’s experience as carefree as possible. I was just like you: figuring it out as I went along, picking and choosing methods that might help both my and my father’s experience. Looking back, I can celebrate that I did my best, and that’s all that matters.
A Jagged Journey is a story about a diverse group of perfectly imperfect people. If you know someone who is imperfect, or perhaps you yourself are among the rest of us who are still trying to figure life out, this book is a perfect addition to ones’ bookshelf.
I wrote Requiem to share my family’s Alzheimer’s caregiving experiences with those who might benefit from those experiences. I chose the fiction genre, not memoir, so that along with our family’s actual episodes, I could include those from other families’ lives to represent a well-rounded representation of the highs and lows of the family caregiving journey.
Journey is a different kind of novel, one that spotlights the challenges of being a fallible human being in a world where what we believe might change from time to time – oftentimes for the better. But the not-so-good changes also exist, because as humans we don’t always get it right. Fortunately, lessons can be learned nonetheless.
During my father’s decline from Alzheimer’s disease, I got into the practice of celebrating every small positive element that came my way. I realized early on in my father’s disease process that big reasons to celebrate weren’t always forthcoming so I committed myself to celebrating even the smallest of victories, and there were many! Doing so guaranteed many opportunities to party, rather than just the few and far between grandiose reasons to don the party hats. My first novel, Requiem for the Status Quo, is a reflection of that period in my life where my celebrate-as-often-as-you-can philosophy was born.
October 13th 2007, my father died from complications of Alzheimer’s disease. That morning I had received a call from the memory care unit where Dad had lived for several years. The nursing manager of that unit said if I wanted to see my father again before he died, I should come as soon as possible. (I had spent a week with him the month before and knew that his prostate cancer would most likely hasten his death.) I first called my husband at work to let him know I would find a flight from Seattle, WA to Medford, OR and be gone…for how long? I didn’t know. Then while on the phone with my brother and sister, I booked my flight online with a tentative return, threw the very minimum of clothing in an overnight bag, and headed to SeaTac International Airport.
Your parent is diagnosed with Alzheimer’s disease or other dementia and as their biological child you wonder, “Will that be my fate?”
My first novel, Requiem for the Status Quo, released in July of 2017, speaks of the brutal protracted loss of someone suffering from Alzheimer’s or other dementia. Caregivers for a loved one with dementia witness the gradual loss of someone they love over an extended period of time.
Are you struggling to find a gift for a friend or loved one? Look no further, I am offering both of my novels at a highly discounted price but the sale ends Christmas Evening.
and you simply enter the person’s email address and you can even set a date as to when you want the eBook gift announcement to arrive in their Inbox! Don’t wait any longer, order the paperback or the eBook now as these prices won’t last, but the book supplies will! And if you’ve yet to purchase either of these novels for yourself, what are you waiting for?!!!
ABOUT AMIE, by Susan Wingate
June is Alzheimer’s and Brain Awareness Month, a time to increase understanding of what dementia is and how it impacts the lives of those it touches. It’s also a great time to work to decrease the stigma and silence that too often accompanies an Alzheimer’s diagnosis.
by Dr. Anne Kenny
GRANNY CAN’T REMEMBER ME: A CHILDREN’S BOOK ABOUT ALZHEIMER’S
Author Bio
by Lynne Gentry
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.
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.
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.
My life changed forever when my father was diagnosed with Alzheimer’s disease. Up until that point, AD was something that happened to other people. Just like everyone else, I was afraid of it – had friends whose parents or other loved ones were diagnosed with it – but just like everyone else, I really and truly did not think it could get close enough to harm me, but it did. You see, I had hoped my professional work in the assisted living and memory care field would be as close as I would ever get to the dreaded disease that is always fatal, but I was wrong.
Living: the ultimate team sport 