Personal Struggles

The limited value of worrying.

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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 Life was 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.

Meet Sue Anne W. Kirkham, author of Loving Zelda – A Stepdaughter’s Caregiving Journal

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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/

Twitter: @SueAnneKirkham1

LinkedIn: Sue Anne Kirkham

12 years ago seems like yesterday

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Twelve years ago today, my father died from complications of Alzheimer’s disease. That morning I had received a call from the memory care unit where Dad had lived for several years. The nursing manager of that unit said if I wanted to see my father again before he died, I should come as soon as possible. (I had spent a week with him the month before and knew that his prostate cancer would most likely hasten his death.) I first called my husband at work to let him know I would find a flight from Seattle, WA to Medford, OR and be gone…for how long? I didn’t know. Then while on the phone with my brother and sister, I booked my flight online with a tentative return, threw the very minimum of clothing in an overnight bag, and headed to SeaTac International Airport.

If you have read my novel, Requiem for the Status Quo, you’ve pretty much read the account of what transpired for me at my father’s bedside; some of the happenings that day/evening were altered, but the gist of what transpired are contained in Chapters 41 & 42.

Upon my return to Seattle, my energy level was depleted yet still on alert. When you have a loved one with a debilitating disease, a state of alertness is the norm – the status quo of constantly being in a state of emergency, if you will. You keep waiting for the phone to ring with the latest development – such as it did for the last time on October 13, 2007 – but that phone number’s appearance on my Caller ID had ceased.

What hadn’t ceased was the business of dying – all the financial and estate matters one cannot ignore – but because of my father’s diligence and organization leading up to his Alzheimer’s diagnosis, much of what I needed to do on behalf of his estate and us survivors, was readily dispatched in the months that followed my father’s death.

But the “now what?” of life post-caregiving was front and center for me. Initially, I wanted absolutely nothing to do with anything having to do with dementia. I continued to financially support my local Alzheimer’s Association and participated in one more Walk to End Alzheimer’s, but that was it. Then my heart called and I became an Alzheimer’s Association caregiver support group facilitator and shortly thereafter, I entered the world of long-term care advocacy by becoming a Washington State LTC ombudsman, both of which I did for five years.

Then my heart spoke to me again, this time it said, “How about writing about your experience as Dad’s caregiver?” I ignored that thought until I no longer could – it wouldn’t leave me alone! I dragged out all of Dad’s records and my numerous journals, sat at my dining table, and over many months’ time, outlined how I would honor my father’s journey and my family’s experience within the pages of a book that might benefit others.

That was five years after my father’s death. My book was published five years later.

Now twelve years after the end of my father’s Alzheimer’s journey,

my book still manages to make its way into the hands of those who need it.

If you, or someone you know, needs encouragement and a renewed sense of hope,

please make your way to your favorite bookstore, or find it right here.

Blessings to you today, and always.

Status Quo or Same-O Same-O

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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.

This Week’s Good News!

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When on the receiving end of a generous act of kindness that saved a loved one’s life, not everyone is given the opportunity to pay it forward in a meaningful way. Oftentimes, such heroic acts fall into the category of a chance encounter so there would be no opportunity to reconnect with that lifesaver again, right? Fortunately, another chance encounter happened for Becca Bundy, the mother of the young girl who received optimal medical treatment by a first responder on the scene three years earlier. Who would have guessed this mother would be able to return a life-saving favor to that same, first responder, years later?

Sustenance for the family caregiver

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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.

My extraordinary success as an author

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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.

All I can say is, “You’re very welcome.”

 

 

This Week’s Good News!

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This story from The Week really made my day when I read it. I hope you feel the same way!

Dan Laguardia went to a California dealership with plans to trade in his 2005 Toyota Scion and buy a new auto. Then he saw another customer walk out crying and asked a salesman what had happened. Laguardia, 49, discovered that Kayla Cooper – a struggling 22-year-old nursing student with two jobs – was upset because she couldn’t afford a down payment and didn’t know how she was going to get to work. Knowing he had to do something, Laguardia asked the salesman to call Cooper and then offered her his old Scion for free, no strings attached. The delighted Cooper called the gift “the biggest blessing of my life.”

A wealth of books about Alzheimer’s disease

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AlzAuthors is a community of more than 200 extraordinary authors who have written about Alzheimer’s disease and other dementia. Today I am spotlighting those books written by the community’s supportive management team, of which I am a member. Please take time to visit the six books spotlighted below. I truly believe you will be glad you did. Let AlzAuthors light your way through Alzheimer’s and dementia.

Alzheimer’s Daughter – a memoir by Jean Lee. A poignant accounting of a family’s life after both parents were diagnosed with Alzheimer’s disease on the same day.

Blue Hydrangeas – an Alzheimer’s love story by Marianne Sciucco. A touching account of a couple’s journey into Alzheimer’s and of the love that never succumbed to the disease.

Somebody Stole My Iron: A Family Memoir of Dementia by Vicki Tapia. This engaging memoir offers useful information from experts within the field of Alzheimer’s research, personal lessons the author learned along the way, and ideas and tips for managing the day-to-day ups and downs of dementia.

Weeds in Nana’s Garden by Kathryn Harrison. A heartfelt story of love that helps explain Alzheimer’s disease and other dementias geared toward the children in our lives.

Motherhood: Lost and Found – a memoir by Ann Campanella. A memoir of the ordinary and extraordinary courage of those who endure debilitating and even crushing illness, and those who suffer with them when they do so.

Requiem for the Status Quo by Irene Frances Olson. A novel that explores the delicate balance of families upended by Alzheimer’s disease and how they manage their loved one’s needs with their own.

This Week’s Good News!

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You know what they say about death and taxes, “Nothing is certain except death and taxes.” What isn’t certain is how the deceased will be honored at their funeral or memorial service. I recently experienced a very touching and affirming memorial for my sister-in-law that was certainly sad, but let me tell you, no one left that service without feeling even more love for an extraordinary person who left this earth, far too early.

This particular story out of Nebraska spotlights the person of honor at her memorial service, Margaret Hubl. Margaret was a quilter all her life and left a legacy reaching near and far. What the family and the community chose to do to honor her legacy will bring a huge smile to your face and make you feel good all over.