Caregiving

Why you should own a copy of REQUIEM FOR THE STATUS QUO

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REASON ONE: You don’t have to know someone with Alzheimer’s disease to benefit from this novel. Let’s face it, when you pick up a novel wherein cancer, murder, courtroom drama, homelessness, financial devastation, or horror are part of the storyline, you don’t put down the book because none of those issues have personally affected you. I mean, when was the last time you picked up a Steven King novel and said, “Man, this is totally irrelevant to me, I’ve never been terrorized by a car named Christinenor have I ever attended a prom where a girl named Carrie exercised her supernatural powers to ruin the evening for most everyone in attendance.” And even though no one – as of yet – has ever lived Under the Dome, you would still be glued to the pages of that novel (not so much the TV version) to discern how it would all turn out.

When you pick up a novel, you find yourself getting involved with the characters. While you’re wondering how the book may end, you read on to find out what’s going to happen next. Or maybe your eyes are opened about matters for which you previously knew very little and then you can’t wait to see where the storyline leads you. REQUIEM FOR THE STATUS QUO satisfies all of those curiosities.

REASON TWO: You do know someone with Alzheimer’s or other dementia – whether tangentially or intimately. You might be hesitant to read yet another technical treatise or article about the devastating effects of the condition, but you still want to learn more while being entertained at the same time. Did I say a novel about Alzheimer’s can be entertaining? Yes, and I’ll tell you why. The definition of entertainment isn’t just giggles and laughs – as Steven King’s novels clearly demonstrate. According to Merriam Webster, entertainment is also something diverting or engaging. Without a doubt readers will be engaged in the story of the Quinn family from page one when the patriarch of the family, Patrick, finds himself in a very inconvenient situation while stranded on an extraordinarily busy freeway in Seattle, Washington. And you will cheer for Patrick’s daughter, Colleen, as she struggles to redefine normalcy while craving even one minute of status quo. And believe or not, you will find humor in some of the least desirable circumstances faced by a variety of characters who are members of “Club Alzheimer’s.”

REASON THREE: You read Still Alice, by Lisa Genova – maybe you even saw the movie – and you became very sympathetic to those who have faced, are facing, and will face the ravages that Alzheimer’s disease has on families such as yours and mine. And if you were fortunate, you also read the memoir, Her Beautiful Brain, Ann Hedreen’s account of the challenges she faced raising a young family and caring for a mother who was “lost in the wilderness of an unpredictable and harrowing illness.” There is much to be gained by reading various genres on the subject, and quite frankly, not enough is being published in the fiction and memoir genres.

As of this writing, there are more than 5 million people in the United States with Alzheimer’s or other dementia, and worldwide, more than 44 million suffer with the disease. Alzheimer’s disease is not going away. The more awareness and compassion we possess, the more capable we will be of helping ourselves, and others, through this protracted disease journey.

MARK YOUR CALENDARS …

REQUIEM FOR THE STATUS QUO a Black Rose Writing release, will be available July 20th, 2017.

The Alzheimer’s caregiver: NOT a fictional character

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REQUIEM FOR THE STATUS QUO, to be released July 2017, contains fictional characters right out of yours and my reality. If your life hasn’t been impacted by caregiving for a loved one with Alzheimer’s or other dementia, you are at least tangentially connected to someone who has been.

  • A parent’s senior moments transform into hair-raising episodes of wandering and getting lost at all hours of the day and night during varied seasonal temperatures that may very well threaten their lives.
  • The husband who was Mr. Fixit for all home repairs, big and small, no longer knows how to use a screwdriver, and becomes combative when challenged.
  • A sister’s successful writing career is derailed when she can no longer write coherently or understand the written word.
  • The middle-aged next door neighbor pounds on your front door demanding entry to his home and threatens to call the authorities if you don’t immediately vacate the premises.

Variations of these scenarios abound, and within those story-like confines exist the caregivers who have been thrust into a role for which they were not prepared, derailing their status quo – their normalcy – beyond recognition. These same caregivers had very full lives before their days became what has become the caregiver’s  36-Hour Day. Any down time they enjoyed prior to stepping into their ill-fitting caregiver shoes has been filled with doctors’ appointments, loved one-sitting, and putting out fires. Carefully crafted family and retirement plans are no longer feasible because life as the caregiver once knew it no longer exists.

REQUIEM will give readers an intimate look at a caregiver’s day-to-day reality while also endeavoring to provide hope for what lies ahead. To be sure, there are no happy endings, but promises of resolution and lightness spring forth in the least likely of places and during some of the most awkward of times. Whether you are a caregiver, a former caregiver, or know someone who is, REQUIEM FOR THE STATUS QUO will become a most cherished and often-read bookshelf addition.

Club Alzheimer’s

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No one wants to be a member of a club characterized by a disease that robs a person of their cognitive function and is always fatal. Unfortunately, as of this writing, 5 million Americans (many more million in other countries) are living with Alzheimer’s disease or other dementias. Here are a few more facts extracted from the most current Facts and Figures document published by the Alzheimer’s Association:

  • In 2016, 15 million Americans provided unpaid care for people with Alzheimer’s or other dementias;
  • That equates to 18.2 billion hours of care valued at $230 billion;
  • 1 in 3 adults dies with Alzheimer’s or other dementia;
  • It kills more than breast cancer and prostate cancer combined;
  • Since the year 2000, deaths from heart disease have decreased by 14% while deaths from Alzheimer’s disease have increased by 89%;
  • Every 66 seconds, a person develops the disease.

My novel, REQUIEM FOR THE STATUS QUO, (Black Rose Writing publication, July 2017) spotlights one family’s experience in particular – the Quinn family – while also visiting other households affected by Alzheimer’s or other dementias.

  • Eddie and Katherine, a couple in their 40s. Katherine has a combination Alzheimer’s/Lewy Body dementia, a type of dementia that causes somewhat violent behavior and speech;
  • Frank and his son, Sean, the latter of whom suffers from a traumatic brain injury (TBI) incurred while on deployment in Afghanistan;
  • Victoria and George, a couple in their 80s, trying to crawl through the maze of George’s Alzheimer’s disease;
  • Rose and Sophia, sisters in their 50s, struggling with the effects of Sophia’s vascular dementia;
  • Donna and Kelly, partners in their 60s, experiencing the devastating effects of Kelly’s Parkinson’s disease and the dementia associated with her disease.

These are characters like you and I. They were living their lives the best they knew how, being good people and doing good for others, yet Alzheimer’s still managed to grab them by the throat and refused to let go.

The storyline is a difficult one but the way in which I have portrayed all of these precious people will touch your heart, and at times, your funny bone. No, there’s nothing humorous about the disease, but people will be people, and when they’re confronted with the impossible, they can find – or create – a bright side onto which they can find redemption and community.

I look forward to introducing you to my characters. Just a few more months before they’ll become a part of your life.

Kindness Fridays

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Have world events impacted you in such a way that you feel things are hopeless?

Are you overwhelmed to the point that you say to yourself, What could I possibly do to make a difference?

The answer is:

You can make a difference because kindness trumps all.

I recently wrote Ellen Degeneres to thank her for her ongoing efforts to spread kindness. Sure, at the end of each of her daily shows she says, Be kind to one another, but she puts force behind those words in what she does for others.  At the conclusion of my letter to her, I said the following:

We’re not charged with changing the entire world, but we can have an impact on the miniscule portion of the world to which we have access. You’re doing it, and I will continue to do what I can from my corner of the world. If everyone makes a fraction of a difference right from where they are, those fractions will add up to great things.

I’m glad I’m on the same kindness train as you, Ellen, and I’ll keep chugging along until I can’t chug any longer.

I sincerely believe that random acts or words of kindness can make a difference in the world in which we live. There are so many negative and hurtful words being thrust into our universe, can’t we just please try to balance out that hurt with words of encouragement, recognition, and nourishment?

Yes, nourishment. In all our daily interactions – be they via social media or in person – we can nurture the hurt that exists all around us. Our words, our smile, our actions may just change the life of someone forever. Haven’t you been on the receiving end of that type of transformative nourishment? Didn’t it feel good? Didn’t it fill the emptiness within you that hungered and thirsted for confirmation that you matter, that you aren’t a failure, that you have potential?

Let’s revisit how that felt and commit to quenching the thirst of each person with whom we come in contact.

April Fools’ memory

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My sister and I as teenagers, and the rest of the family
My novel, REQUIEM FOR THE STATUS QUO, contains a scene where Patrick Quinn – many years before his Alzheimer’s diagnosis – wakes up his high school aged daughters on April 1st and announces that local public high school students have the day off to honor April Fools’ Day. His daughters attend a parochial school – church based – and when they hear of said day off, they become incensed.

The girls get out of bed – anger seething below the surface of their drowsy bedheads – cross their arms, and they yell, “That’s not fair!”

Patrick agrees, April Fools’ Day is no reason to have a day off from school . . . then he claps his hands together, and barely stifling a laugh, he says, “Gotcha!”

That exact scene happened to my sister and I – thus the reason why I had to include it in my novel. My father had the keenest sense of humor – a funny bone that stayed with him even while the plaques and tangles in his brain leeched the very life out of him. As a family, we were very fortunate that his humor survived until the very end. That is not always the case, as readers will discover when they meet the other characters in my novel whose disease journey is far from cool, calm, and collected.

REQUIEM FOR THE STATUS QUO, release date: July 20 2017.

Black Rose Writing, publisher.

Deathbed promises and how to fulfill them

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Painting by artist, Mary Riesche
Painting by artist, Mary Riesche

Here’s another article 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.  Taking care of your mother is not solely defined as moving her into your home and taking care of all her basic needs until she dies.  Very few people have the ability or the means to provide 24-hour care in their home.  You made that promise with the best intentions and you can still honor your promise without dishonoring your father.  Keep in mind that loving your mother doesn’t guarantee your success as her caregiver.  Even adult children with a fabulous relationship with their parent struggle greatly in their efforts.  And if your relationship with your mother is tenuous at best, try picturing the scenario of you as caregiver and her as recipient of that care.  What effect will that have on her, you, and the remainder of your household?

Let’s clarify how best to care for your mother.

Why can’t caring for your mother mean that you’re honest enough to admit that you’re not the best caregiving option?  Do your best to find the care alternative that will provide her an optimal quality of life, e.g. adult daycare, errand and housekeeping services, assisted living.  Do the research and consult the experts to confidently fulfill your promise to your father by securing the best care solution for your mother.  If that solution involves selecting an assisted living facility, there are many resources available to you that can make this move a successful one for everyone involved.  As her son or daughter you will be able to lovingly help her transition into a residential location with like-minded older adults where she can receive the care that will fulfill the promise you made to your father.

Now imagine the NEW normal that your mother and your family can experience.

Your mother lives nearby in an assisted living residence.  She has companions with whom she enjoys spending time.  She receives three wholesome meals a day and when she, or you, feel like seeing each other, you’re just a short drive away!  The time she spends at your house will be as a pampered visitor – not an inpatient (or impatient) relative.  It’s probably difficult right now for you to see this as a viable option, but I think in time, you’ll find that everyone, including your father, will be pleased with the outcome.

Here are some links to get you started on your quest: www.alz.org; www.caregiver.com; www.ltcombudsman.org

I covet your input.  What success, or challenges in achieving success, can you share with us?  I look forward to hearing from you.

Do Not Ask Me To Remember

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Distraught manI’m reblogging this article I wrote in April of 2013 because it comes up in my blog stats as being extremely popular to many of you out there. I can only conclude that it’s popularity remains high because there are so many caregivers in the world who are tangled up in a daily life that centers around those with Alzheimer’s disease or other dementia. I hope many more will be encouraged – and pleasingly challenged – by what I have to say in this post.

Walk in Their Shoes… Just for a Minute.  The attached article contains encouraging advice that caregivers worldwide need to read, and re-read, from time to time.

Those of us who have been caregivers to loved ones with Alzheimer’s or other dementia know very well the frustrations felt when we come to the realization that we’re not sufficiently equipped to handle that which this disease presents us.  We’re walking in caregiver shoes, fully incapable of walking in those of the person with dementia.  If we could, we would shriek at what we see and experience.

So we get frustrated – understandably so.  We raise our voices in anger – and feel guilty immediately thereafter.  We complain to others about the one we’re taking care of – because we crave to be heard and understood by someone!

English: PET scan of a human brain with Alzhei...
PET scan of a human brain with Alzheimer’s disease (Photo credit: Wikipedia)

Do not ask me to remember is a loaded statement and one which should give us pause.  We know the person with dementia is not able to remember the previous five seconds, so why do we ask them to remember where and when they were born?  Why do we think that repeating an answer LOUDLY AND WITH EMPHASIS will help the loved one remember this tenth time you’ve answered their same question?  Why do we think they will understand our logical explanations about circumstances when their ability to understand anything requiring organization of thought is a function forsaken long ago by the brain that they’ve been stuck with?

Because we’re human – and we want order out of chaos, and we want the one for whom we are providing care to finally “get it.”  And we want them to understand that this ain’t no cake walk for me so why aren’t you appreciating all that I do for you?

Because they don’t remember.