AlzAuthors: Candace Minor Comstock, Remember Joan

by Candace Minor Comstock

In the winter of 2007, I found myself with a rare commodity, time. Major change had come my way as my role of mother had altered, and my role of daughter had ceased. My daughter got married, and my mother died of Alzheimer’s disease within two months of each other. Joy and sorrow intertwined. That winter, with this newfound time, I started something I had often talked about. I began to write a book. My wonderful husband bought me a laptop, and I typed a lot. I’m an educator, fortunate to work less days of the year than most. It took four years of winter breaks, spring breaks, summers, fall breaks, and weekends to accomplish my story.

Remember Joan is the account of a daughter beside her mother as they face a life disrupted by Alzheimer’s disease. The book begins with a wedding and ends with a funeral. Embedded between these two ceremonial rituals are two tales, the story of Joan’s decline and death due to Alzheimer’s and the story of my life as the daughter of Joan. In the end, this book is not only a tribute to Joan’s life, but a tribute to all who try to create a celebrated life with the people that surround them.

I took detailed notes throughout my mother’s disease. The trek across the Alzheimer’s experience is thorough. The reader will enter the lunacy and loss, the practical and painful, gaining insight and specifics through each stage. It’s not completely gloomy as there are often many funny tales to tell surrounding Alzheimer’s. In fact, humor, instilled by Joan, has always been the family’s favorite coping strategy when damage control was necessary. The decline in the later stages was tough, and folks close to Joan were challenged in ways never imagined. Oddly enough though, I found the final days of my mother’s life as beautiful as something so sad could be.

To offer the reader a break from the intensity of disease discourse, the Alzheimer’s chapters

alternate with stories from the past of the people that make up a family. Both constructive and noxious relationships are examined. I wanted people to know pre-Alzheimer’s Joan, my mother who encouraged feminism, excelled in the world of wit, and smiled at all who crossed her path. It’s noteworthy to meet my sexist father who broke the rules, often for enhanced amusement, and my two big brothers, the hippie and the scientist. I loved writing about my husband; our love story is enchanting and gave me strength. My kids, both the biological and the school children, provided some awesome narratives. And the power of best girlfriends is celebrated too. By writing this book, I could record my wonderfully warped life and introduce readers to the characters that filled my world. I could to the best of my ability illustrate the passage of each stage in this terrible disease. But most importantly, I could honor the woman I called Mom.

“Throughout the book, Comstock returns to the theme of community, giving credit and gratitude to the friends and family members who helped with her mom’s care and supported Comstock through the process, and these are among the memoir’s strongest moments… [It is] an affectionate portrait of a damaged but enduring family that has suffered a profound loss but continues to adapt, survive and move forward.” --Kirkus Reviews

#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: Ron Cooper, Fran's Song: My Mother’s Triumph over Alzheimer’s

by Ron Cooper

Every day in the Alzheimer’s ward of Mom’s nursing home, she and her fellow residents engaged in exercises to strengthen their minds. One day, the activities aide held up a flash card of a tree and asked Mom and her companions to identify it. They answered in a chorus, “Tree!”

“Good!” the aide said.

Then the aide held up a picture of a rose. It was a black-and-white drawing, but still these people with tenuous memories recalled a symbol of beauty and nature.

Clara identified it as a “flower” and several of her friends agreed. Mom didn’t respond. You could tell that she was thinking. The aide pressed for more specifics, and Mom answered: 

“A rose is a rose is a rose.”

For a split second, Fran Cooper had defeated this deteriorating disease that makes a mockery of your remembrances and steals your yesteryear, bit by agonizing bit. This, I thought, needs to be chronicled! I got out my notebook. And so began a remarkable year of watching Mom interact with fellow residents of her memory care unit, singing, praying, loving.

I wrote my book to dispel the common myths surrounding Alzheimer’s. It’s simply not true that Alzheimer’s steals everything. As memories fade, the mind still ponders the wonders of life. The heart still loves intensely. The spirit still worships and prays. And the urge to sing is stronger than ever, and the notes are sweeter, more poignant. 

And so it was with Mom. She gave me thoughtful advice on the eve of my wedding. She exchanged sweet love letters with dad. She voiced her faith through prayer, and was a song leader in her memory care unit. At one Christmas pageant, she held the audience spellbound with her beautiful rendition of “Silent Night, Holy Night.” Many years after her diagnosis, Mom was still able to say and do some remarkable things.

In “Fran’s Song: My Mother’s Triumph over Alzheimer’s,” I wanted to honor

my mother’s memory as a special loved one with a steadfast faith and a lovely voice, not just someone losing her mind and failing to remember my name. Her story was not about my loss, but instead her new life in a most sacred space.

I also wanted to help others, so that in some small way family caregivers might be inspired by Mom’s unique journey. There is no reason we should walk this journey alone. Those living with Alzheimer’s need companionship, a gentle hand, respect, dignity and a good quality of life.

Feedback on my book has been positive, and many readers have been inspired by Mom’s story. One woman who faced the painful decision of placing her mom into an Alzheimer’s ward wrote,

“Thank you for the book, ‘Fran's Song.’ It really lifted my spirits and gave me some insights into my mom's world.” 

An Amazon.com reviewer observed, “May this angelic lady with the angelic voice inspire you and may you receive peace from this book.”

I earnestly hope that readers of “Fran’s Song” are comforted during the hectic days of caregiving. These dear loved ones think, feel and love like us all. It just may not be apparent at first, but I assure you there is life, love and laughter inside. And it's in abundance!

About the Author

Ron Cooper, a newspaper journalist for 25 years, turned to full-time freelance editing and writing in 1997. He has ghostwritten and edited several memoirs, including one about a young stroke victim, a six-year cancer survivor, and a Fortune 1000 CEO.

Recently, Ron published his second book titled, "Fran's Song: My Mother's Triumph over Alzheimer's" in tribute to his mother, Frances Cooper. "Fran's Song" lovingly recounts his mother’s new life in a new home, a memory care unit where song and prayer reigned and hope and love were in abundance.

Ron's first book, "Heart Happy: 50 Stories, Poems and Whimsical Writings to Inspire You!," was released in 2011. "Heart Happy" is an inspirational collection of simple acts of kindness and expressions of goodwill from grocery checkout lane to a busy highway. "Heart Happy" is available as eBook in the Kindle Store.

Connect with Ron Cooper

Website

Twitter

Purchase Fran's Song: My Mother’s Triumph over Alzheimer’s

Kindle     Paperback

AlzAuthors: Irene Mackay, Raising Children's Awareness of Dementia

My name is Irene Mackay, author of “The Forgetful Elephant,” which explains the memory loss aspect of dementia to young children in a way they can understand.

When my Mum was diagnosed with Vascular Dementia in 2010, I had no idea what dementia was. I wish I had, as I would have handled and coped with her behaviour towards me so much better. Following her diagnosis, I wanted to learn more about dementia and help others who had this illness, so I went to work with Alzheimer Scotland as a Home Support Worker.

There, one particular gentleman whom I gave support to had a little grand-daughter who was always there during my visits. Elyse was 3 years old at the time, and couldn’t understand why her grandpa behaved the way he did or why he could no longer remember who she was. This got me thinking that there must be many children in the same situation as Elyse, so I did a bit of research to find out if anything was available to give some sort of explanation to young children. When I couldn’t find anything, I decided to do something about it, and wrote “The Forgetful Elephant.”

When a family member or someone close to us is diagnosed with dementia, it can be a very difficult time. More often than not, it is a grandparent who is affected by this illness; therefore there will be young children involved. It can be difficult enough for adults to understand the effects dementia has on someone, so we might think it would be easier not to try to explain this to a child as we want to protect them. The child may already be aware that Grandma/Grandpa is behaving differently, but they don’t want to mention it. They may even be frightened if the person with dementia gets angry and perhaps think it is their fault. I used to blame myself for the way my Mum behaved towards me, and my concern is that young children will do the same.

After self-publishing my book, I wanted to get out in to the community and speak to children about dementia and read the story to them, so I began to approach my local Primary Schools. I am delighted to say I have visited many schools, reading my book to children and offering a question and answer session which enables them to talk openly about dementia. The feedback I receive from teachers and parents after my visits is always positive. Very often the teachers who are present during my sessions are amazed by what the children already know about this illness, by the questions they ask, and how many children actually have a relative with dementia.

I have also had the privilege of visiting Northern Ireland where an organization called DEED (Derry Engaging and Empowering Dementia) are using my book as a tool to educate children in their community about dementia. The Ulster Girl Guides also adopted my book as a way for the girls to earn their badge by talking to The Brownies about dementia.

I am very proud of what I have achieved over the past four years. It hasn’t always been easy, as so many people still don’t think we should talk to children about dementia, and I have had many doors slammed in my face. On the other hand, I have received many emails and messages through Social Media telling me how my book has helped families, and congratulating me on the work I am doing, which makes it all worthwhile.

 My Mum sadly passed away in August, 2014. I am thankful her strength, passion and determination live on in me and help me to continue with my campaign to raise children’s awareness of dementia in her memory.

You can find out more about me, my campaign and my resources on my website. You can also follow me on Twitter.

AlzAuthors: Blogger Kathleen Brown's Alzheimer's: Hope and Help for Caregivers

by Kathleen Brown

My name is Kathleen Brown. I’m a wife, mother, grandmother, writer, and Texan through and through. What I write about is caring at home for someone with Alzheimer’s. Trust me: I have experience. 

My father hid the first signs of Mom’s Alzheimer’s for a couple of years, maybe more. Even after their family doctor made the diagnosis, Dad refused to accept it. In spite of his failing eyesight, he made it plain he would not allow any “outsiders” to come into their home to help him care for her. He vowed never to put Mom in a care facility. 

So I became Mom’s caregiver. 

In the beginning, I was sure there must be some kind of how-to manual, something to tell me, “You can do this. I did it. Here’s how.” But I found most caregiving information was written by and/or for professionals, and didn’t address the special needs of those who cared for family members in their homes. I felt isolated and alone, certain one day Mom’s needs would finally be too great and I’d be powerless against Alzheimer’s. 

Challenges and questions—my days were filled with them. But gradually I realized I was also seeing answers, ways of doing the things that had to be done. That day I dreaded never came. Challenge after challenge, I found solutions. 

I write today to share those solutions. I call them miracles—ways of solving problems I never could have come up with alone. I also write about the positive mindset that can allow other caregivers to find their own answers, unique to their situation and the person they care for. In brief, that mindset is this: If we feel a situation is impossible to deal with, we won’t bother looking for a solution. But if we believe an answer exists, if we expect to find one, we’ll keep our eyes and mind open and working. We’ll find what we need. 

After Mom died, I waited a long time to begin my blog and the book on which the blog is based. Like most caregivers, I was slow to process the long journey through Alzheimer’s. But now the writing gives me peace. It reinforces my conviction that, with the Lord’s help, Dad and I did a good job. We kept Mom present in her own life and with us, really with us, for as long as we possibly could. 

Those who comment on my blogposts often say they appreciate my willingness to write about all of Alzheimer’s, the parts most people know about and the parts that even some caregivers don’t want to discuss. Readers are glad to see practical “how-to” information in the posts, about daily realities like incontinence, hygiene,crisis behavior. And they appreciate hearing about caregiving from the perspective of someone like themselves, someone who took on the job as an untrained family member or friend.

Have I helped caregivers? Yes, I believe I have, by giving them the help I searched for and telling them what I so desperately wanted to hear: “You can do this. I did it. Here’s how.”

About the Author

Kathleen Brown is a writer and speaker who lives and works in her home state of Texas. Her experience with Alzheimer’s began when she was suddenly thrust into the role of caregiver for her mom. Desperate for help and encouragement, she found virtually no information about at-home caregiving. So she stepped onto the Alzheimer’s road with no map or guidebook. Now, by means of her blog, Alzheimer's: Hope and Help for Caregivers, and her book, A Time for Miracles – Finding Your Way Through the Wilderness of Alzheimer’s, she shares her caregiving experience with others who, though unprepared and inexperienced, care at home for a loved one with Alzheimer’s.

AlzAuthors: Vicki Tapia, ‘ Fess Up or Cover Up?

by Vicki Tapia

It starts small. Misplaced keys that turn up in odd places, making you wonder if gremlins have taken up residence in your home. Forgotten appointments you’re sure you didn’t make, until someone points them out on your calendar. Other odd happenings disregarded, still niggling in the back of your mind.

More time passes, and you begin to think someone rewrote your familiar cookie recipe in an alien language, because the words have begun to lose their meaning. They look like a jumble of disconnected letters. You walk into the laundry room to wash a load or two, but have no idea how to operate your washing machine; you then ask yourself, what are all those buttons for, anyway? You become lost walking your dog around the neighborhood you’ve lived in for over 40 years and spend over an hour finding your way home. A truly frightening experience! Would this be the day your anxiety turned to panic?

AlzAuthors: Carol Bradley Bursack, author of Minding Our Elders -Caregivers Share Their Personal Stories

by Carol Bradley Bursack
 
It Started With Joe. 

My neighbor Joe’s wife died. Joe was in his 80s, his only child lived across the country and he was totally deaf. How could I not help? My children were then young. We grew to love Joe, but I had no way of knowing that he would become my charge for over five years. Still, I don’t see that I could have done things differently.

After Joe’s death, my own elders started falling like dominoes into my caregiver’s arms. First, my childless aunt and uncle moved to our community to be close to family. Before long, my uncle started having strokes and my aunt died of cancer. Meanwhile, my in-laws’, as well as my parents’, health began to crash. At one time, I was running between care-settings six or seven hours a day, six days a week and a few hours on Sunday's when I had some backup. I never thought about the fact that this could go on for two decades.

My example echoes that of many. We go into caregiving – usually gradually – thinking in the short term. For most people, caregiving lasts much longer than anticipated. I now know that I should have taken better care of myself from the start. I hope, through my work with caregivers, that I can help them do what I didn’t do. I hope to help them learn the importance of self-care.

During the mid to later years of caregiving, I wrote Minding Our Elders: Caregivers Share Their Personal Stories, though the “Epilogue” was written after my last three elders died.

For years, I combined freelance writing with caregiving, but eventually I had to return to the “real” work force even though I still had three elders who needed me and an ill son. We do what we must. I learned, on-the-fly, the skills needed in the modern world – mostly technical. Eventually, through my job as librarian/news researcher at a newspaper, I was able to write an elder care column, also titled “Minding Our Elders.” Now, "Minding Our Elders" is a full-service writing business. 

Minding Our Elder’s is a portable support group. As the name implies, I am a strong advocate for caregivers, but also elder dignity.

Grieving begins when adult children begin to see their parents' decline. They need support through the whole process. Minding Our Elders: Caregivers Share Their Personal Stories brings that support to the caregiver. Three in the morning and you can't call a friend? No problem. The storytellers in the book understand. Read one story. Read two. Feel the comfort and support of others who have gotten through this. Tomorrow is another day.

Through my book, I offer emotional support. Through my newspaper column, I give practical advice and resources. Through all of my work - my blog, column, caregiver’s forum, speaking, and my role as writer and forum moderator for major caregiving websites - I offer support from the caregiving trenches. My website and blog bring it all together at www.mindingourelders.com and www.mindingoureldersblogs.com.

The responses that I’ve received from readers have been humbling and gratifying. The reward of knowing that my elders’ suffering, particularly that of my dad who had dementia and inspired my first book, makes me aware that this is a team effort between those for whom I’ve provided care and my own dedication to carry on their legacy while I attempt to help others navigate their caregiving journey.