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.

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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.

AlzAuthors: T.A. Sorenson, Where's My Purse?

by T.A. Sorenson

Where’s My Purse? is a recounting of the 10-year journey through Alzheimer’s with my mother. Even though this disease is challenging, I opted to approach Mom’s circumstances from a positive angle - celebrating what was right with her world, instead of what wasn’t. Let me explain.

Writing WMP was to-date my most challenging undertaking, as well as the most cathartic. My mom, JoAnn, had always been equal parts best friend, anchor, parent, and confidant. But over the course of one year, I observed this beautiful, active, light experience moments of simple forgetfulness that quickly accelerated into a total shut down of her memory process. I knew that two relatives on my mother’s side had been diagnosed with Alzheimer’s when I was a child, but the notion of it being genetically passed on was never entertained. Needless to say, this new scenario was both heartbreaking and scary.

Diagnosis:  Alzheimer’s disease.  Now what?

Each and every day millions of individuals are facing this exact situation and have no idea what to do. My first instinct in the new role as caregiver was to scour the Internet in search of information, but what I really wanted was to hear directly from someone who had actually been through it. There was no one in my world to speak to about the diagnosis and jumping from one medical website to the next, left me with only one takeaway - more confusion. Allowing frustration to take over, all I kept thinking was “how on earth could this be happening to me?” And then it hit me - it wasn’t.

Despite my best efforts to deal with everything, I made plenty of mistakes, the largest of which was feeling sorry for myself.  My mom was diagnosed with Alzheimer’s; it was never about me. From that “Aha” moment going forward, my focus shifted solely toward Mom and my attitude on the positive. Knowing the disease was never going away, my only mission was to make my mother as happy and safe as I could, while celebrating each day I had left with her. Individuals have questioned me, wondering how I could possibly find a bright spot as it relates to Alzheimer’s disease. What I will say is that of course I was sad. But at the end of the day, my mind & abilities remained intact and thankfully still are. JoAnn didn’t have that luxury, so spending time licking my wounds didn’t make sense for me. Because I adopted that newfound positivity, I became a much more effective caregiver and was better equipped to handle what was to come.

Just as each individual is unique, there is no one-size-fits-all with Alzheimer’s albeit there are many common threads. Keeping that in mind, Where’s My Purse? offers the reader 7 separate stories written from varying perspectives. Each contributor bravely opens up to share their personal story to help those seeking support and accessible information. The feedback has been wonderful and the comment I receive most often from my readers is that they feel like they’re sitting with me having a private conversation and getting answers to their questions. Mom was always there to help everyone and I can’t think of a better way to honor her.

Join me while I walk you through my very private journey with my loving mother, JoAnn.  I’m hopeful that by offering you a glimpse of my experiences, as well as suggestions on how to exercise humor and grace, it may help you to better cope with your loved one’s challenges. Perspective is everything and altering mine was just what the doctor ordered.

“You will never experience personal growth, if you fear taking chances. And, you will never become successful, if you operate without integrity.”

Writing “Where’s My Purse” has been a challenging exercise, due to the sensitive nature of the content. At times I have struggled with the notion that some may perceive me as “insensitive,” which I am not. Looking at select situations with a comedic eye helps ME cope, and that’s how my mom would want it. I was raised in a home where laughter was used as a defense mechanism, a vehicle for communication and our pharmaceutical of choice. When we learned that Mom had Alzheimer’s, I found myself drowning in a sea of self-pity, yet JoAnn was the one who drew the short straw. In other words, I was making it about me. The only obvious solution was to change MY perspective. Once that adjustment was made, I became a highly effective advocate for her and found peace.

Connect with T.A. Sorensen

About the Author

T.A. Sorensen resides in the Pacific Northwest with her husband, where she works as a designer. After spending two years in Colorado and twelve years in Toronto, Canada, they returned to be closer to her family in her beautiful birthplace.

AlzAuthors: Maria Shriver - We Can Handle the Truth

“Denial is the worst form of the truth”

During the time it takes for you to read this piece, try to put your denial impulse aside and take a hard look at the truth about Alzheimer’s. Because the fear that causes you to deny things — like our risk of getting this mind-blowing disease — can actually be the motivator you need to stop ignoring the facts and join me in doing something about it.

So here’s the truth: Our WebMD and Shriver Report Snapshot: Insight into Alzheimer’s Attitudes and Behaviors, revealed that almost all of us (96 percent) have heard of Alzheimer’s disease ... so we can no longer deny that it exists. Nearly four in five of us know, or have known, someone that has been diagnosed with it, which tells us that the vast majority of us not only know about it, they actually have experience with someone who has had or is living with Alzheimer’s.

But even with all of that first-hand experience, we aren’t doing much about it. Although 67 percent of people say they would actually like to know their risk for getting Alzheimer’s disease, when offered a list of ways to do that, more than one in four say they wouldn’t do any of them. Although two-thirds acknowledge that an Alzheimer’s diagnosis would cause their family great financial harm, nearly half say they have never considered the financial implications if they, or someone in their family, were to get the disease.

We know the risks and the reality, but we are in denial and unprepared as a nation to deal with it.

Why are Americans choosing to turn off and tune out when the risk-filled, pocket-emptying truth is right in front of us? Because denial is a protective mechanism. It keeps you safe until you are ready to handle the truth.

I have been fighting on the frontlines of Alzheimer’s since my own father was diagnosed with the disease in 2003. I get denial. Like millions of others I first denied what was happening to him. Then, I got scared. But after that, I got busy. I wrote What’s Happening to Grandpa, executive produced The Alzheimer’s Project on HBO and the Oscar-award winning Still Alice, producedThe Shriver Report: A Woman’s Nation Takes on Alzheimer’s,testified before Congress, created The Women’s Alzheimer’s Challenge and created a place for anyone connected to the disease to share their own personal stories of Alzheimer’s and Caregiving on MariaShriver.com and this May launched Move for Minds and —all of which I have done with the goal of starting a conversation and getting people to act. Fighting this disease gave me the drive to push through my fear and land in a place of hope.

What am I hopeful about? I am hopeful about the exciting research that is happening in labs across the globe. Some of the world’s best and brightest are looking for a cure everyday, some even say they’re getting closer — as the new cover of Time magazine implies.

But until a “miracle” drug is found, let’s not deny that someone in this country gets Alzheimer’s every 67 seconds. Let’s not refuse to act because there is no cure. There is no cure for cancer and still there are millions of people fighting it every single day. We need to fight the fear our denial is protecting us from and find the hope. Hope will allow us to accept the truth — that as many as 16 million people could have this disease by 2050 — and act on it.

I am hopeful that people now understand the connection between cardiovascular health and brain health. I am hopeful about the cutting-edge research that is showing a relationship between the foods we eat and their impact on our brain. I am hopeful that people are getting the message that our brains and our bodies are connected and what is good for our bodies is also good for our brains.

I am hopeful about companies like WebMD, Equinox, Vimmia and so many more, that are joining us in this fight. The truth is that getting educated, getting empowered and getting engaged is the way to stop the fear and find the hope.

I am hopeful that children of Boomers who might suspect that their parents are struggling with memory will get them to a doctor earlier because they are now more aware of what Alzheimer’s is and isn’t. If you’re wondering what the early signs are, just this week, the Alzheimer’s Association listed them for you. The fact is, every day 10,000 Baby Boomers turn 65. The time you waste denying that someone you love might have Alzheimer’s is time wasted getting them into a clinical trial or getting a new drug that could slow its progression. When I speak to anyone connected to this disease, one of the biggest regrets they have is the time they spent in denial. There’s so much shame around Alzheimer’s but the truth is you can sit down and have a conversation with your spouse, your parents your loved ones about what they would want to do if Alzheimer’s showed up at your door today. Those who plan do better.

And I’m hopeful that women — the economic engine of this country — will join me in this fight because the vast majority of people diagnosed with Alzheimer’s are women. In fact, as The Shriver Report first reported, a woman in her early 60s is twice as likely to develop Alzheimer’s as she is breast cancer over the remainder of her life. Which is why I am excited about the mobilization of women through The Women’s Alzheimer’s Challenge — we’re raising money to fund research on women’s brains to get the answer. And we won’t stop until we do.

In fact, I am excited about all of the people who are engaged in this fight — spouses, children, political leaders. I am thrilled that the federal government just increased the amount of money devoted exclusively to Alzheimer’s research. It’s still not enough.

In an election cycle where it seems like we have nothing in common, one thing we all DO have in common is that we all have brains. And I haven’t met a person who isn’t terrified of losing theirs. So let’s brainstorm.

They say the truth can set you free. The truth about what Alzheimer’s is and isn’t and what we can and cannot do can set us free as a nation. I have faith in our country and I know we can handle the truth and be brave enough to use our fear to propel us into action.

The best way to break through denial is to challenge it. We have the facts, we have the figures. And we have the fight. Let’s go and face it together.

A modified version of this piece appeared on MariaShriver.com.