assisted living

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

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.

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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Good news abounds in Harrison, Arkansas, and a 5th grader is the one who set this story in motion.

Ruby Kate Chitsey spends lots of time in nursing homes because her mother is a nurse practitioner and Ruby Kate loves to join her mother while she’s at work. Ruby noticed something at nursing homes that wasn’t getting the attention she felt it deserved. Wait until you read this brief story about how this young girl took charge of making life in nursing homes better for those who live within.

Hurry while supplies last! Discounted price!

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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.

Grandma and Grandpa pods

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I wrote this article five years ago and I’m posting it again today because it is one of the most viewed posts on my blog. Financial figures are five years old so current, 2018/2019 figures will be considerably higher.

I read a fabulous article in the “Home” section of today’s Seattle Times newspaper.  It’s a throwaway section that I always read before I toss it into the recycle basket.

Publicity photo of Will Geer and Ellen Corby a...
Publicity photo of Will Geer and Ellen Corby as Grandpa and Grandma Walton from the television program The Waltons. (Photo credit: Wikipedia)

All of us are getting older – there’s no cure for that other than not growing older by leaving this earth before you’re ready – so where are all of us going to live – especially Granny and Pappy who can no longer safely live on their own?

Long-term care (LTC) facilities have priced themselves out of most households’ bank accounts and the alternative solution of having grandparent sitters is cumbersome and expensive in itself.  What’s an adult child to do?  If you have space on your property to have a guest house newly built or better yet, if you’re willing to turn your sunporch or guesthouse into accommodations for mom and dad, the original outlay of funds will pay for itself because you will have avoided the need for a facility’s ultra-expensive long-term care services.

One company that makes the pods spotlighted in the Seattle Times’ article is called Home Care Suites.  Disclaimer: I am not advocating for this company’s product.  I am merely pulling information out of the article and presenting it to the reader so you can do research that applies to your situation and your budget.

The pods made by this company range in size from 256 to 588 square feet with prices ranging from $42,000 to $83,000.  This is no drop in the bucket but let’s consider the cost of facility care.  Genworth (who sells long-term care insurance) states that the average monthly fee for assisted-living (AL) was $3,300 in 2012.  I think that’s a very naive figure based on my experience of having worked in the LTC housing industry.  Maybe Genworth’s lower number is just the cost for monthly rent – but what about care services?  Cha-ching!!!  Now you’re looking at double that amount and the cost will only go higher as care needs increase.  But even at only $3,300 per month, that amounts to $158,400 for a four-year period.  See how do-able the pod concept seems now?

Many of the AL service needs are simple monitoring of a resident – tasks that you can do for your loved one: waking them up, helping them get dressed, a certain amount of medication assistance, meal provision.  Many seniors living in AL facilities don’t need the massive hands-on care of bathing assistance, toileting services, physical therapy, etc.  I know for a fact that if a family member has the time – and a little patience – they can provide these lower acuity services on their own for quite some time before securing hands-on medical care for the elder member of their household.

Skipping ahead to after Grandma and Grandpa/Mom and Dad have passed on, you now are left with an added structure on your property which you can transform back into the porch or game room of its earlier existence, or simply leave as is as a guest room that may accommodate someone else in your family.  I have to believe that your initial investment in constructing a pod is an investment that you won’t regret.  And don’t forget – the costs for such a project aren’t necessarily out of your own pocket.  Perhaps Grandma or Grandpa are willing to pull some of their savings out from underneath their mattress and contribute to the cost of this alternative living arrangement that would certainly be more attractive to them than a lengthy stint at an AL facility or nursing home.  Just saying.