From the AlzAuthors Blog: Blogger Heidi Hess Saxton

When the Unthinkable Becomes Inevitable: The Awful Dawn of Dementia

By Heidi Hess Saxton

Up to this point in my life, most of my blogging has been for parents of adopted, foster, or special needs children. Back in 2002, when my husband and I first became foster parents (and later adoptive parents), we really had no idea what we were in for. Which was probably a good thing, because I’m not sure we would have had the courage to move forward with it, had we known.

Now, as I’m entering the sixth month of caring for my mother, a dementia patient, I’m realizing that this is a lot like that. Lots of dirty laundry and temper tantrums, interspersed with moments of sweetness and delight. The tumultuous relationship we had during my teen years is gone. These past six months have been the sweetest, yet in many ways also the hardest – for both of us. But even the hard times are not without their rewards. For instance, when my daughter is being her snarky teenage self, she will do for her “Mammy” what she would never do in a million years for “Mean Old Mom.”

From the AlzAuthors Blog: Vina Mogg Blogs about Life as an Alzheimer's Caregiver in "Seaglass Life"

By Vina Mogg

Not Alone

At a caregiver’s conference in Orlando I read a poem I had written during the opening assembly. Three things that happened there marked my writing journey.

A Florida State Representative, Mark Pfaford, key advocate for the Florida's Alzheimer's Disease Initiative (ADI), a bill that provides services to meet the needs of individuals and families affected by Alzheimer's disease, spoke to me after the reading, saying, “Your words give a face to the bill we support.”

An elderly man in the audience stood up and asked, “Where can I go for help? Who can help me care for my wife?”

Three women approached me in the lobby, telling me, “Your poem says exactly what I am feeling inside.”

Each cry isolated calls out the same question:

Am I alone?

Who will help me?

At that moment I asked myself, Who will be a voice for these people?

A voice deep inside me answered, “Here am I. Send me.”

From the AlzAuthors Blog: Alzheimer's Blogger and Advocate Amie McGraham

LIFE, REPURPOSED

By Amie McGraham

The year I turned fifty, I transitioned from a successful thirty-year sales and marketing career to the role of primary caregiver for my mother, returning to the island home of my childhood three thousand miles away. Mom has had Alzheimer’s for the past few years and, while she’s aware that she’s slowly slipping away, refuses to recognize this because of her religious beliefs. Disease of any type is a topic we never talk about. For her, to acknowledge dementia would be to admit that disease is real: that God’s plan has been altered.

I was raised in this religion. Based on faith healing, it rejects medicine, doctors and hospitals; prohibits alcohol, tobacco, caffeine and drugs. My parents divorced when I was eleven and I divorced myself from religion, beginning a twenty-five year spiral into a life of alcoholism, half measures and wanderlust; unfulfilled careers and relationships. Eventually, I clawed my way out and began rebuilding my life.

Repairing the relationship with my mother is part of my recovery. Immersion into the world of Alzheimer’s caregiving initially felt like a labyrinth in which all roads seemed to lead to frustration, anger and impatience. Sometimes it seemed more like a duty. But caregiving, I’ve discovered, is truly the best form of service. It's taken a while to embrace this; longer to actually live it. In caring for my mother -- actually living with her for the first time since my reckless departure from her life at age thirteen -- I have developed real compassion. For my mother. For others. And for myself.

It's the Book Blogger Hop! Week of June 16-22

This is something new for me and it looks like fun.

Each week, the Book Blogger Hop starts on Friday and ends on Thursday, with a weekly prompt featuring a book related question. The Hop’s purpose is to give bloggers a chance to follow other blogs, learn about new books, befriend other bloggers, and receive new followers to their own blogs. 

Here's this week’s question:

How do you organize your blog in terms of what is in your side bar? 

Do you have categories and defined sections in your side bar?

  (submitted by Elizabeth @ Silver's Reviews)

I'll go first. 

If you look at the right side of my blog you'll see I've organized my sidebar into different sections. At the top is my book trailer for Swim Season, which I'm so excited about. It's my first one and the bright young man who made it with me did a super job. Then you'll see my AlzAuthors badge, which identifies me as an author writing in the Alzheimer's  and dementia genre. I am a founding member of AlzAuthors, dedicated to helping those on the dementia journey find great sources for understanding and support. I also display my Books Go Social Ambassador's badge. BGS is a great group for authors and I keep active with it each week. Below that there's a link to translate my blog into different languages, and  a link to follow the blog. Then you'll see my most popular posts, followed by other pages on the blog. I try to keep my blog  as clean and simple as possible. How'd I do? How do you organize your blog? If you don't have a blog, how do you like to see a blog organized? Please reply in the comments.

About the Book Blogger Hop

The Book Blogger Hop was originally created by Jennifer from Crazy-For-Books in March 2010 and ended on December 31, 2012. With Jennifer’s permission, Ramblings of a Coffee Addicted Writer relaunched the hop on February 15, 2013.

Book Blogger Hop Week of May 26 - June 1

 

This is something new and it looks like fun.  

About the Book Blogger Hop
The Book Blogger Hop was originally created by Jennifer from Crazy-For-Books in March 2010 and ended on December 31, 2012.

With Jennifer’s permission, Ramblings of a Coffee Addicted Writer relaunched the hop on February 15, 2013.

Each week the hop starts on Friday and ends on Thursday. There will be a weekly prompt featuring a book related question. The hop’s purpose is to give bloggers a chance to follow other blogs, learn about new books, befriend other bloggers, and receive new followers to their own blogs.

Here's this week’s question:
(submitted by Kristin @ Lukten av Trykksverte)

 

What is the most fun part/aspect of being a book blogger?

 

I'll go first:

 

I love to read and I love books. Sharing my love of good books and great authors with others who appreciate the same enhances my reading experience. Through blogging, I get to share my favorite reads with others, and by following other book bloggers I learn of new books and authors I might enjoy.  It's a great way to keep on top of what's out there, in the vastness of the literary world, where millions of books and millions of authors fight for my attention. I blog primarily for my fellow authors in Clean Indie Reads, sharing their new releases, and for AlzAuthors, spotlighting books and other blogs in the dementia genre so those in need  of knowledge and support can easily find meaningful resources.

 

What do you find is the most fun about book blogging? I look forward to your comments.  

AlzAuthors: Elaine Pereira, I Will Never Forget

By Elaine Pereira, MA OTR/L CDC DP

My mother’s was a story that needed to be told. She was a kind, brilliant and talented woman all of my life until dementia took hold distorting her persona and leaving an agitated, bewildered and compromised person in its wake.

In what would be her final months, as my mother continued her rapid descent into Alzheimer’s clutches, her once strong voice faded away. Our quiet visits together afforded me the opportunity to reflect on the vivacious life that defined her. I was determined to remember her as the strong, courageous and gifted lady who was my mom.I Will Never Forget was written in tribute not only to my mother but to everyone going through this struggle. Too many sons and daughters have witnessed their parents’ very essence evaporate as their memories are chipped and chiseled away. My mother’s story is everyone’s story. I simply chose to put in black and white the colorful stories of her life for all to remember.

I was not a full-time caregiver for my mother. She had made it crystal clear that she never wanted to live with her “kids” if she could no longer care for herself, even when her “kids” were whittled down to one - just me - after the premature deaths of both of my brothers.

Regardless of whether you’re caring for a loved one at home or allocating daily care to an assisted living facility, Alzheimer’s leaves a permanent mark on everyone. You are forever changed, no matter how you experience the journey.

AlzAuthors: Molly LeGrand and The Upside of Aging

By Molly LeGrand

I’ve worked in Long Term Care as an Activities Assistant for ten years. This role has offered a unique perspective on Alzheimer’s as I typically will meet the person after a diagnosis. And just like I would with a new friend or colleague, I begin to get to know them, and I get to know them with Alzheimer’s.  I was fortunate to start my career in the aging services with a mentor dedicated to the teaching of resident’s rights and the promotion of quality of life. These concepts have become my foundation as I grow in the field.

My motivation to write about Alzheimer’s is personal.  This diagnosis can be an extremely emotional time not only for the person but also their family and loved ones. I saw writing my blog The Upside of Aging as an opportunity to not only join in on a well-established conversation but as a possibility to share my more positive experiences with people living with Alzheimer’s.   I don’t offer medical advice, but I do hope to bring some clarity to an often misunderstood disease.

AlzAuthors: Blogger Lisa B. Capp, Caregiver "Survivor"

by Lisa B. Capp

Everyone knows someone touched by dementia or Alzheimer’s disease.

We write, because today these diseases cannot be prevented, slowed or cured. We seek answers because their manifestation is often irrational, frightening and perplexing. And, as human beings, we continually reach from darkness to find light, whether you’re someone living with dementia or you’re caring for a loved one with the disease.

Millennials grew up watching their parents shoulder the responsibility of a grandparent’s care or worse, witness to early onset of a parent. In the absence of a cure, millennials will likely become the primary caregivers to their own aging baby boomer parents; those who possess a cruel knowing of how this disease will change their lives.

Our world has faced many health crises and with enough time, talent and resource has moved the needle on many. My hope: We can do the same one day for dementia. I write, striving to make a contribution to caregivers struggling everyday in their role. My blog shares a caregiver “survivor” story of the 18-year dementia journey I shared with my mother, Vera.

“The day the wheels fell off” refers to the day my family was left with only one option – to involuntarily commit our otherwise healthy mother to a locked psychiatric ward so professionals might stabilize her psychotic delusions and hallucinations. My mother’s case presented little evidence of the more traditional memory loss and confusion that the media conditioned me to expect.

The role of primary caregiver fell to me; it was just geography. With a family steeped in the Italian-American tradition of cross-generational care there were ongoing expectations, compounded by feelings of falling short, wrapped around a perpetual sense of guilt and conflict. My family, like others, was beset by long-term strains. But as her illness deepened, we unified in the dedication to our mother’s care.

Sharing a home with my mother after my dad’s death, decline began and nighttime always bred apprehension. Women walked across the roof in high heels piercing the ceiling where she laid in bed, and winged monkeys pried at her bedroom windows. Late night screams and emergency room visits were commonplace.

From my blog:

Sentinel

As a caregiver to someone with dementia
  It’s difficult to remember what they were
   Before the tangles and the plaques

If I close my eyes
  And push the dementia away
   I see her from the seat of my bike 

 

 







She’s strong and vibrant
  Standing behind me
   Ready to catch, if I fall

I will stay with her
  Standing sentinel
   Witness to this long and slow descent

About the Author

A transformation champion working with senior leaders of business, government and non-profit organizations across five continents focused on change. I helped organizations that wanted to change their vision, their strategy, their results or their very place in the world. It proved more difficult to help myself on the transformational journey of dementia that my mother and I shared.

Connect with Lisa B. Capp

Website & blog
LinkedIn
Twitter
Facebook
Pinterest
Follow AlzAuthors at alzauthors.wordpress.com

AlzAuthors: Mum Has Dementia

by N.

I originally set out to write my blog Mum Has Dementia after recounting a story about Mum getting stuck in the bath - it was a lighthearted chat with my sister, overheard by an acquaintance with a background in social media, who suggested blogging.

I'm a doctor (GP / family medicine depending on where you are in the world) with a busy medical practice, and have always wanted to write, indeed, have always been writing, usually stories about the people I meet through work and their increasingly complicated lives. At the time of the blogging suggestion, I'd entered a writing competition with the British Medical Journal, and was fortunate to be shortlisted and published on their website.

Suddenly it seemed I had an opportunity to write about something that was very close to home and to share my writing in a way that may be genuinely constructive - I felt that if only one person out there read my blog and felt less alone then it would be worth it.

My blog is about my mum and her struggle with dementia (or, more accurately, my struggle with her dementia). If you have at some point searched the internet for 'parents with dementia', 'grandparent with dementia' or 'close acquaintance / family friend / some bloke I know with dementia' and found little that felt relevant, then my blog might be the place for you. If you’ve typed 'My mum is demented' into a search engine and meant it in the literal sense (as opposed to your mum having just had a massive go at you because you hadn’t tidied your room / told her she looked nice / taken her shopping) then there may be something useful for you here. 

The dearth of relevant, accessible internet chat about dementia seems totally out of keeping with the increased public recognition of the disease. Unless I’m just not looking hard enough – but who wants to look hard for this stuff when you’ve got so much else to worry about on a daily basis. I - vainly - just want to hear about somebody who is like me and how they are coping. I don’t want a spiritual experience; a cosy reflection on Pastor John’s sermon and how it was loosely relevant to Alzheimer’s (believe me – I just found one of those). I don’t want to be preached to or have the virtues of caring for someone with Alzheimer’s extolled to me by an evangelist. I just want a clear, perspective on how it feels to watch your parent lose their grip on reality without losing yours. And an acknowledgement that there are tiny moments of comedy to be found lurking in the mire of Alzheimer’s disease.

My sense of humour is already pretty dark. Being a doctor helps me understand some of the mechanics of the diseased brain but leaves me pretty helpless in the face of application forms for Personal Independence Payments. The hard outer shell that one develops as a practicing doctor, toughened by years of breaking bad news and watching bleak life stories unfold, has enabled me to find comedy in really quite inappropriate scenarios and believe me, that is the most useful skill I have in facing this disease.

I am an anonymous blogger so no headshot I'm afraid. The reasons for this are two-fold. Firstly my parents live nearby and my father, despite being a very sociable, gregarious man, likes to keep his private life private. I think he would struggle with me documenting details about mum's illness and broadcasting them to the world.

The second reason is that some of the comments I make in my blog do not sit particularly comfortably with my role as a compassionate family doctor - I do not want my patients to feel that my professional capabilities are compromised or for them to know details about my life.

I have found the anonymity to be very liberating but it does provide barriers to publicising one's work. What I do know is that those who have responded positively to my blog have done so without any sense of moral obligation because they are 'my friend' - very few of my friends know about it. 

As a result, I can be completely honest, sometimes brutally so. This is one of the key issues in dealing with a diagnosis of Alzheimer's in the family - how honest can we be with ourselves and each other? How do we acknowledge our darker thoughts and stop them overwhelming us. The answer, trite as it may seem, is through laughter and sharing. If we laugh at a problem we neutralise it and if we share our stories we reduce the sense of isolation. This is where initiatives such as the AlzAuthors blog are so important.

Please visit Mum Has Dementia here.

#AlzAuthors: Pippa Kelly, Dementia Writer & Advocate

by Pippa Kelly

The first article I ever wrote about my mum’s dementia appeared in 2006 in a national newspaper here in the UK. It recounts the terrible decision my siblings and I took to sell our parents’ house and put mum in a nursing home when her condition – and subsequent refusal to move – threatened not only her health but that of our dad, who had become very frail.

What strikes me now, when I read my own words, is how raw it all was. I can hear the confusion in my writer’s voice, and the seemingly endless grief that comes when you love someone with dementia. But most of all I hear, and re-live, my guilt. As I wrote, I kept looking back and seeing mum’s increasingly erratic behaviour for what it was (a symptom of her illness) not what I’d thought it was (her strong and not always easy character becoming more extreme with old age). 

It was a one-off piece and I returned to writing on other topics for national papers until, two years after mum died in 2012, I launched my website. I wasn’t sure what it should focus on and, to give myself scope, I set up three tabs – three hats for myself – of Writer, Campaigner, Mum.

I used Twitter to spread the word about my blogs and within months it became clear that the ones that attracted the most comments and attention from my growing readership were those on dementia and its social, emotional and psychological impact. Much to my surprise I was fast becoming known as a specialist dementia blogger (I even won a major award). I discovered that the more I researched and wrote about the condition, the more I began to appreciate the complexity of its effects, not just on those who have it and their immediate family and friends, but on wider society. 

My newfound knowledge came too late for it to be of use to my mum, but freed from the emotions I’d experienced as she succumbed to dementia, I was able to combine it with my understanding of what others were going through to connect with them, gain their trust and tell their stories. 

Since then I’ve met many people who have dementia and even more who love and care for someone who does. I always walk away from these encounters with a renewed sense of hope in humankind. The individuals share a common desire: to spread the word about what dementia is and to show that, though a diagnosis is a shock, it can also be a relief because you know what you are dealing with – an illness, which though incurable, can be managed for a while with practical coping mechanisms and support from friends, loved ones and the wider community.

As I write, a primetime TV programme featuring a couple I have met is being aired on the BBC. Over the course of almost two years, Chris Roberts and his wife Jayne allowed CCTV cameras into their house in North Wales and used video diaries to record their daily lives coping with Chris’s Alzheimer’s. He was diagnosed five years ago, aged just 50.

The Panorama documentary is searingly honest and, at times, painful to watch as Chris’s condition worsens and Jayne struggles to come to terms with the fact that she is losing him. She knows they both need some respite but says she can’t risk Chris going into a care home for a week “and me not wanting him back”. Her candour is breath-taking. I know, from experience, how much it will help others in the same situation – as they hear what she has to say, witness her sadness, see Chris’s frustration – to know that they are not alone.

Connecting people, sharing stories, gathering information is what I’m about. I’m a journalist, after all. But to do so on a topic this close to my heart, has changed my life. That sounds melodramatic, especially coming from a buttoned-up Brit, but it’s true. Though unpaid, my dementia blogging is by far the most rewarding job of my 33 years as a professional writer, and I’m delighted to contribute to the #AlzAuthors blogI spend hours talking to people who have set up enterprises, charities and clubs (such as the wonderful Healthy Living Club in south London) to enhance the lives of those with dementia. “Doesn’t it depress you,” friends sometimes ask, “writing constantly about such an awful thing?”

The answer is no, quite the reverse. Don’t get me wrong. Dementia is cruel, its effects are ugly, and sometimes my interviews reduce me to tears. A few days after her husband died from Lewy Body dementia in 2015, 65-year-old Jan Inman rang to tell me her story. Her love for Ron was humbling. She told me that when she nursed him in the last three months of his life, she “fell in love with him all over again”. Though we’ve never met, Jan and I exchange news on Facebook and, strange as it sounds, we count each other as friends. 

I have made countless friendships (real-life and online) through my dementia writing, nearly all with people affected in some way by this remorseless condition, several are Americans. I value them highly; we know the dark places in the depths of our souls that exposure to a loved one with dementia unearths. We understand the joy of living for the moment and hearing someone we thought we’d lost utter a word, or giggle or sing. 

I often tell others in what I call my dementia community that they “do” – they roll up their sleeves, put together business plans, raise funds and make a difference. I merely observe and then write. It’s my lot in life, I suppose. If, by tapping out a few words I can join some dots, make one or two connections, reach out to lonely carers and frightened individuals living with dementia and help them feel less alone, I’ll have achieved more than I ever dreamed I would. 

About the Author

Pippa Kelly is an award-winning blogger and writer on elderly care and dementia based in London http://pippakelly.co.uk/. Her short stories and articles have appeared in numerous UK national newspapers and magazines including The Times, The Sunday Express, The Sunday Telegraph, The London Evening Standard, The Spectator, The Guardian, Mslexia. She also blogs for the Huffington Postand mariashriver.com and you can follow her on Twitter and Facebook.

AlzAuthors: Need Info on Alzheimer's and Dementia? Ask a Caregiver

What do you know about Alzheimer’s? Anything? 
 

What should you know about Alzheimer’s? A lot. 
 
This is not just our parents’ and grandparents' disease. It’s a problem that has far-reaching complications, not only wreaking havoc in the life of the one afflicted but in the lives of all those surrounding him or her: spouse, children, grandchildren, siblings, friends, caregivers, and the greater community. Its impact is exponential: For each one of the 5.4 million Americans diagnosed with Alzheimer’s, there are another 5.4 million (at the very least!) affected (see Alz.org). These people are our families, neighbors, co-workers, friends, and acquaintances. As our lives intersect and intertwine, this disease affects all of us.

June is Alzheimer’s and Brain Awareness Month. Take some time to learn more about this illness, to understand what it means to those who love someone afflicted, to those who dedicate themselves to see that they are cared for and ensure that their lives continue to have meaning and dignity.

There are many ways to become educated about a condition or disease. With Alzheimer’s, there are hundreds of books and blogs available to explain it, advise what to do about it, how to handle it, and offer solutions and support for caregivers.  

Many of them are written by experts in the field - scientists, physicians, psychologists, etc. - which offer practical, useful information but may lack insight into the emotional toll of the disease and leave important questions unanswered.  

What may be more helpful and meaningful are the memoirs and blogs written by caregivers and sometimes - but not often enough -  the individual affected, and works by authors who prefer to share their experiences through the lens of fiction. 

 

While expert contributions have their place, stories that enlighten through the careful balance of useful facts and a cast of relatable and realistic characters may be a better way to shed light on this disease. This presentation brings the reader inside the heads of the Alzheimer’s person, their caregivers, spouse, children, and other loved ones. It’s up close and personal, not clinical and removed.  

Many of these stories are spotlighted in AlzAuthors. Please  visit each author's page. There is much to be gained by taking a peek at what we've put together. We are all experts on our own experiences, and share a wealth of information.

Alzheimer’s is a frightening possibility, but to meet it without knowledge or an understanding of its implications increases despair and hopelessness, and strips one of the power to make competent decisions and take advantage of necessary supports and resources. 

Knowledge gained from those who have walked the walk can be as practical and useful as any expert's self-help or how-to manual.

AlzAuthors: Blogger Jane Gayer's Dementia City

by Jane Gayer

It doesn’t matter where we live, what religion we are, how much or how little we have, what language we speak or the color of our skin. Throughout the world, Alzheimer’s is the same monster and we are all just trying to figure out how to deal with it.

You couldn’t write a script with a more compelling storyline of love, laughter, sorrow and loss than what’s being lived right now by Alzheimer’s families around the globe.

This is our family's story, simple and real.

My name is Jane, and Joe, my husband of 35 years, was diagnosed with Dementia/Alzheimer’s about two and a half years ago.

I wouldn’t call myself a writer. In fact, I’m dyslexic, which makes writing an interesting challenge. My career was in business management. That fed my purse, but to feed my soul, I was an abstract artist, designer, and an actor and director in Community Theater.

I can find humor in most things. To me, life is a comedy and is better set to music than tears. But, I also know that sometimes life can be a dark comedy filled with pain and loss. Someone said to me once, “Don’t you ever take anything seriously?” The answer, “Not if I can help it.”

I decided to personify my husband’s disease and call at “Al” and think of him as our “uninvited guest”, the hanger-on, the guy who doesn’t know when to go home. So Al is a metaphor, an image, a symbol of what we must live with and struggle through every day.

I wasn’t sure writing a blog was the right thing to do, that it might somehow become an

embarrassment or humiliation for Joe and for our family. I didn’t know how people would react to so much openness about our struggles; would they think I was trying to garner sympathy or just indulging in our troubles? Would writing about my life provide psychological relief, or would it make things worse?

I have always been able to see the humor in life’s experiences (good or bad) and laugh about them. But Alzheimer’s is serious business. Would I offend readers by making light of all the craziness that comes with it?

I decided I would have to focus on my own experiences with this disease, to speak solely from the point of view of a caregiver. I would never be able to feel what Joe was feeling much less capture it in print. 

I’ve often questioned what I write, fearing I might be in denial or becoming paranoid. Are things really the way I think they are? (This disease can often play tricks on the caregiver.)

With that said, here I am, with 44 posts hanging out there in the vastness of cyberspace. So I asked myself, “Would I do it again?”

The answer is simply, “Yes.”

This little blog is now read in over 25 countries. It truly is “Al” over the world. The responses from readers have been heart-warming and serve as a lifeline for me.

So welcome to our world.

Visit Jane's blog Dementia City.

The Twelve Days of Giveaways - Day Three: Ava Mallory!

It's giveaway time!

It's day three of the 12 Days of Giveaways 

and that means it's my day to host a giveaway.

Two winners will win an e-copy of my

new release 'Tis the Sneezin'! 
 (Winners will be chosen at the end of the giveaways.)

All you have to do to win is follow these prompts.

I'm not the only author hosting giveaways on this blog tour. There are plenty of other Sci-fi/Paranormal/Fantasy and Romance/Mystery authors taking part in the festivities.

 To find out what the other authors are offering, 

follow the blog tour. Here’s the map!

Remember: Giveaways end at midnight 

Christmas Day so don’t delay!

Hop on board! Meet some fabulous authors and win

 some great prizes! Good luck and Happy Holidays!

***
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