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.

AlzAuthors: Michael Ellenbogen, From the Corner Office to Alzheimer’s

by Michael Ellenbogen

Imagine having a mysterious illness take over your mind. Over the next 10 years you try to navigate a health care and social system that is not equipped to address what is happening to you. As you slowly lose your ability to think and remember, you have to try to hide the losses to protect yourself and your family financially. You encounter doctors who are at best baffled, and order a series of nonspecific, redundant, and uninformative studies. And, to top it off, it takes months to approve and schedule tests and appointments. Treatment that might have helped is delayed for years. Your spouse and family are increasingly worn down. Research options are barely mentioned.

In 2008, at the age of 49, I was diagnosed with Alzheimer’s disease after struggling to get a diagnosis since my first symptoms at age 39. I was a high-level manager with a Fortune 500 company. Difficulty with work-related tasks eventually led to my early retirement.I am interested in motivating those with Alzheimer’s to raise their voices and reduce the stigma surrounding the disease. I believe that my diagnosis with Alzheimer’s disease is not the end for me, because I have so much more to give to the world. I wrote about my journey with the disease in my latest book entitled From the Corner Office to Alzheimer’s.

As one of the more than 5 million people living with this debilitating disease, I currently live every day to make a difference. In fact, I now advocate for education and the eradication of this disease. I am 100 percent open about the condition because I want others to learn and become educated about something that most people are not even aware of.

As a world-renowned Alzheimer’s and dementia advocate, I have been featured in nationally syndicated TV, radio and other media outlets and have written for blogs, newspapers and websites and shared my personal perspective as a guest speaker.

I currently serve on the Pennsylvania Alzheimer’s Disease Planning Committee and other advisory councils. I’m a regular speaker at the Advisory Council on Alzheimer’s Research, Care and Services and have been featured in the Alzheimer’s Disease International’s 2012 World Alzheimer’s Report. Today I serve on many committees and advisory groups in hopes to change and have an impact to the world of dementia.

While I love tinkering with electronics, boating and writing, I can no longer do any of these things. I constantly wonder if every new cognitive misstep is related to the disease or if it is something that also happens to the average person.

This disease has robbed me of my skills and I continue to decline daily as I slowly become a child again. While I continue to do the one thing I can do, Advocating for Dementia change, I am not sure how much longer I will be able to do this. I can assure you I am not going down without a fight. I still try to live life to the fullest the best I can.

If you want to know what it is like to walk in the shoes of one person with Alzheimer’s, read this book, whether you are a patient, care partner, doctor, or other health provider. It is raw and scary, as well as inspiring, given the self-disclosure. As well as describing sometimes painfully and in harrowing detail what we are doing wrong, it can tell us a great deal about what we need to do differently going forward.

Connect with Michael Ellenbogen:
Website
Twitter
Facebook

AlzAuthors: Tara Reed, What to Do Between the Tears… A Practical Guide to Dealing with a Dementia or Alzheimer’s Diagnosis

On my son’s 19th birthday we got the news from the neurologist: your dad not only has vascular dementia but also Alzheimer’s.

Earlier in the day I was sad that I wouldn’t be able to light candles on my son’s cake since he was over 3,000 miles away starting his freshman year of college. After the call, I was glad he wasn’t home so I could cry and release some of the grief and anguish I felt.

It wasn’t as if it was a surprise to my family but rather a confirmation of our worst fears. My dad had not one but two kinds of dementia and the road ahead would not be easy. He didn’t believe there was anything wrong either – which at the time created a lot of anger and conflict as he believed we were all trying to control him when we were simply trying to keep him safe and get him help.

I felt frightened, powerless and overwhelmed by what was to come. Normally an action-oriented person, there was so much that was out of my control. One of my biggest lessons from this journey has been learning to know what I can and can’t control and to be at peace with it.

I cried... a lot. But then between the tears, I went to work looking for things I could put on a to-do list. What did we need to figure out, what plans needed to be put in place, what costs did we need to anticipate or decisions should we discuss in regards to future care?

I made lists. I called family meetings. I learned as much as I could about Alzheimer’s and how to handle the unusual behaviors we were faced with from a man who had been so solid and consistent his entire life. 

Something inside me knew, even then, that I would one day write and share what I learned with others. I wanted to help other families create some order in the chaos and be as prepared as possible for the journey ahead.

I share practical things that can be done to make the journey a little smoother. Things to do between the tears because there will be many, many tears. 

Many have shared how helpful my book, What to Do Between the Tears… A Practical Guide to Dealing with a Dementia or Alzheimer’s Diagnosis in the Family has been to them and others wish they had it when there were in the beginning stages with their loved one.

While there is no way to change the outcome of dementia or Alzheimer’s, I believe that with the right support you can change the journey. I am now working on more resources to help family caregivers, especially in regards to the Emotions of Disease. Learning to move through the grief, anger, worry and other negative feelings to more positive emotions like feeling resigned, courageous or connected is an art form and one that I am sharing with anyone who will listen.

Alzheimer’s leaves a mark on everyone it touches – it’s a journey no one chooses but one you can’t get off once you are on it. You can, however, impact what your journey looks like.

Wishing you as much peace and joy as you can find while you walk this road with your loved one(s).

About the Author

Tara Reed is an artist, author, speaker and the creator of PivotToHappy.com – a website dedicated to helping people with a loved one with dementia or Alzheimer’s navigate the journey. Tara is personally affected as her father was diagnosed in 2012. She has been living the journey and also holds professional certifications from the Alzheimer’s Association in Basic Dementia Care, Activities of Daily Living and Dementia-Related Behaviors.

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: Tryn Rose Seley, 15 Minutes of Fame

by Tryn Rose Seley

One photo, one song, one story does wonders for your daily life.

Roll out the red carpet of success for you, the one you care for and any who join your circle of care.

My book 15 Minutes of Fame: One Photo Does Wonders To Bring You Both Back to Solid Ground empowers professional or family caregivers of those with Alzheimer's and other dementias. Here I share the caregiving strategies that lead me and the ones I care for back to solid ground every day. You'll find ideas that turn a stressful or regular day into an extraordinary one, sparking creativity and gratitude on this path of caregiving.

In my book I share simple yet powerful ways to engage and connect with the person you care for, creating trust between you, allowing you to accomplish your daily tasks with greater ease. I found in my full-time professional caregiving work that something was working; working to alleviate stress, confusion, sadness, loneliness. It was to tell a person his or her best stories of life. I learned them from nurses, Executive Directors, Activities Directors, or the person themselves: What are the high points of this person's life? Can I bring back the feelings of pride and delight in one's lifetime of accomplishments? The answer is yes, and I felt strongly compelled to write about it, to empower other caregivers, family or professional, to do the same. It filled my cup when I gave full care to those who needed it, and it filled the cup of the person with dementia as well. I wrote this book, and I'm glad to share it with people on the journey with Alzheimer's.

I currently teach a class called Mindful Art at an adult day program in Phoenix where I see people re-emerge from lost and lonely to connected and calm in each session we spend together. We sing, tell stories, and create art. Currently, the most satisfying part of my work is to share this opportunity with nursing psych students here in the Valley of the Sun; they bring their gifts of kindness, patience, and positive energy to the class, and leave with a broader and more beautiful picture of human beings with Alzheimer's or other dementias. These young people will spread the expertise around as they enter their particular careers, and I am excited that they are building authentic relationships with these people, see them as people first, and value them for who they truly are.

About the Author

Tryn Rose Seley is a professional photographer and sought-after musician. She has supported the lives of young children, those with special needs, and elders with Alzheimer's and related dementias for over 25 years. All of her projects and offerings are designed to empower caregivers and the one they care for. 

Purchase 15 Minutes of Fame: One Photo Does Wonders to Bring You Both Back to Solid Ground 

Connect with Tryn Rose Seley 

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.