AlzAuthors: Tracey Shorthouse Tells Her Alzheimer's Story Through Poetry

By Tracey Shorthouse

When I was first  diagnosed  with early onset Alzheimer’s Disease and Posterior Cortical Atrophy in 2015, I wanted something to focus on. All my life I have helped others through being a nurse, and I still wanted to do that. 

The brain needs stimulation to keep going, so after the initial shock at being diagnosed and the relief that it wasn’t MS as what I first thought and feared, I took stock of what I could still do, and if I couldn’t do something I persevered until I relearned old skills. I had an occupational therapist who used to come and see me, and she got me in touch with groups that promote positivity in dementia. So I joined The SUNshiners, a network for people with a diagnosis of dementia living in Dover Deal and Shepway, Kent, UK.  I also attend meetings for the Dementia Action Alliance when I can, and get involved with other things, like talks. 

I talk to post diagnostic groups - people who have recently been diagnosed with dementia - and the public to bring awareness that dementia can affect all ages, not just the elderly. Last May, I gave a talk to the local police. I also go to a creative, inspired writing group weekly. I started writing a blog on Facebook,  as a way to keep a journal and to help others in the process. 

I started writing short stories at first to keep my brain active, but I found them too complex to carry on. So instead I started to write poetry. At first it was cathartic to write about my dementia and get it out of my system, but I didn’t want to focus on it as dementia is only a part of who I am. It doesn’t define me. So I wrote about nature, life, and then  stories that came into my head as poems.

AlzAuthors: Claudia Rumwell & The Senior Care Organizer

 by Claudia Rumwell

“Caregiving is not for wimps.”

Mom had been falling much too often. Then I heard from a visiting relative that in order to safely come up the stairs from the basement of their home, Mom and Dad had to sit on a stair and scoot up one at a time. 

Answers needed. 

Mom was diagnosed with Parkinson’s. Dad was fairly stable with his previous stroke. But it was time to make some changes. 

“Ducks in a Row?” Did I have my “ducks in a row” when it came to starting the process of taking care of my parents’ needs? I did not. Did they? No. And you might think that a nurse would know exactly what to do, but that wasn’t the case. I learned as I went along. 

And I learned a lot. I remember collecting pages of information which held answers to questions that I had asked. I learned about senior care professionals who can help find living locations, or guide you in care management. I found out that my parents didn’t have the needed documents e.g., health care directive; power of attorney. And I had to search for important papers that were well hidden in their home.

The ten years of “hands-on” experience as a parent caregiver was the main impetus and inspiration for creation of the Senior Care Organizer which is a “hands-on” guide for collecting and organizing the necessary information to manage senior adult care. My goal was to provide a resource for others who are or would be going through my experience. I thought…..Why should they have to “reinvent the wheel?” 

My parents may not have had Alzheimer’s, although in her last year of life, Mom did acquire the Parkinson’s form of dementia; but they are good examples of the importance of getting things in order as soon as possible. Especially once things change or the diagnosis has been made. 

The Senior Care Organizer will help you, as a caregiver, do that very thing. It provides an easy method and plan to get organized, identify resources, learn about what to do first, how to do it, and where to go to find specific help. It comes in a 3 ring Notebook format or in a downloadable interactive PDF format that can be saved and revised on your computer. You can see a Preview of some of the book’s contents on the website, or with the Look Inside feature on Amazon. 

So whatever caregiving challenges may be ahead, don’t forget there are others who can help you and resources to support you.

“Hardships often prepare ordinary people for an extraordinary destiny.” C.S. Lewis

About the Author

Claudia Rumwell is a registered nurse, educator, author and patient advocate who has worked with seniors for over 40 years. In 2008, as a result of advocating for her parent’s changing health care needs for 10+ years; she shifted her nursing focus to the area of senior care. In addition to consulting, she enjoys providing workshops that focus on senior care topics. In addition to updating the Senior Care Organizer, currently in its 4th edition, she updates the Links/Resources and publishes monthly educational articles in the Helpful Articles section of the Website: www.seniorcareorganizer.com; and posts articles and other links on Facebook.  You can also find her on Twitter.

AlzAuthors: Picture Book Author Arthur Levine

by Arthur Levine

Last night I lit a Yahrzeit candle for my father, who’s been gone for two years. And I decided, at the last second, that rather than sing a traditional prayer, I’d just sing a few lines from one of his favorite Broadway tunes. It made me smile in a moment that was otherwise sad.

Like many, my father’s struggle with Alzheimer’s was a long and gradual one, but that did not make it easier for him, and it didn’t make it easier for all of the people who loved him. We had to say goodbye over and over as parts of who he had been vanished like color from a beloved garment, never to be restored.

It was toward the end of my father’s struggle (though even then, the end was agonizingly attenuated) that I wrote WHAT A BEAUTIFUL MORNING, a picture book about a boy and his grandfather (and grandmother!) coping as best they can with the changes forced upon them. I had been visiting my parents every summer on the island where they had a home. It was a special place for all of us.

When my son was a baby, those two-week visits were a blessed reprieve, as my parents would joyfully babysit while my husband and I snuck away for an hour or two to play tennis or go to a movie. And as my son grew, so did his love for these visits. He spent precious unstructured time following his grandfather around and helping with tasks like cleaning up the garden, raking sticks, riding to the garbage dump!

But now everything had changed. My son was still helping, but he was helping my father find his way around his own home. He was making sure grandpa got to the dinner table. It was crushing to him. And confusing.

Now I used my two-hour “break” not to relinquish childcare, but to cope with my own emotions about my father’s struggle, so I could come back and be helpful to my mother, and to my son. So I wrote about my dad and how much he loved to sing. I wrote about the very real way we could still – even as other means of communication had vanished! – sing songs together, how my father’s face would light up as all the lyrics of a complicated song would come flowing out of him. In those few moments of music-making, it felt like we were having a conversation again. And we were.

A dear friend who had been through this same loss advised me that, rather than focus on the long road of loss ahead, I should try to celebrate each individual day in the present knowing and appreciating that it was the best my dad would ever be. I found that awareness and appreciation in music. And I hope reading WHAT A BEAUTIFUL MORNING will bring a moment of comfort to other families as well.

Arthur Levine is the publisher of Arthur A. Levine Books at Scholastic, whose books include the Harry Potter series. He is the author, most recently, of the picture book “What a Beautiful Morning,” about a family dealing with Alzheimer’s disease.

Author Spotlight: Win Charles - Writer, Teacher, Speaker, Podcaster, TriAthlete, Jewelry Designer

Today’s spotlight guest is a young author who reached out to me for an interview on her podcast “Win’s Women of Wisdom.” When I checked out Win Charles I was impressed with her for many reasons, most notably because of her many accomplishments in spite of having cerebral palsy. I grew up with a brother who has cerebral palsy, and he has also achieved more than he was thought capable of, so I know there is no reason to expect anything less from someone labeled disabled or with CP than you would from anyone else. In her short life, 28 years, Win has published three books, started her own jewelry company, speaks to audiences nationwide, competes as a triathlete, and runs her own podcast. She also hopes to one day become a New York Times best-selling author. Today, incidentally, is Disability Day, or the International Day of People with Disability, which makes it the perfect time to spotlight this inspirational author. Welcome to Adventures in Publishing Win! Please tell us a little about yourself

Thanks for inviting me to speak with your readers, Marianne. I have a physical disability but I don't let that stop me. I'm on a quest to get my PhD in special education. I teach through my books and I teach preschoolers.

When did you first consider yourself a writer?

At age 23. My family inspired me to write my first book, I,Win: My Journey with Cerebral Palsy Living in a Non-disabled World, my autobiography.

Please tell us more about this book.

At age 24 I decided to tell my story. Writing this autobiography gave me the opportunity to pay tribute to family members who are passionate about life and have instilled this passion in me. My parents' extraordinary support, encouragement, and pure love were my foundation as I navigated life, overcame obstacles, and achieved successes as a young woman with cerebral palsy. I have to pay full tribute to my mother, who died in August 2010. From her I learned to listen to my own voice as a guide to making life choices. She taught me to always expect the best from myself. My hope is that this book will provide insight into the extraordinary possibilities that those who live with disabilities have. I also hope that those without disabilities– rather than putting a focus on our differences – will come to understand what we all have in common. This book is for my mom, with love.

I hear you have a new release.

 

Yes. My latest book is The View from My Heart with Yoga:Power of Love (The View from My Heels, Book 5) released on Kindle, November 27, 2015. In this book I draw on my own life experience living with physical challenges and my brilliant talent of jewelry design. The main character, Kelly, has a passion for bringing jewelry, fashion, and make up that is easy to use to those with physical challenges. Inner and outer beauty are equally valued. Kelly freely admonishes that “We can't be beautiful on the outside if we aren't beautiful on the inside”. This belief is echoed in the tagline for her friend's organic make up line, “Your outer beauty sparkles within you.” Kelly and her friends are passionate about bringing the disabled the best options for living an independent, whole, and beautiful life. Kelly has a line of designer jewelry that the disabled can easily put on and take off. Her fashion designer friend, JT, who was partially paralyzed in a car accident now offers stylish clothing that is easy for those with limited mobility to wear. Cynthia, JT's sister, introduces an organic make up line that is safe for everyone, including the disabled and kids who love to play dress up.

Do you have a specific writing style?

I use Apple dictation.

Is there a message in your books that you want readers to grasp?

I teach about diversity.

About Win Charles

Born with Cerebral Palsy, Win Charles has defied the odds by becoming an author. Her memoir I, Win is an amazing story of how she remembers her life through the years of having a condition called “CP”. As a competitor in the Kona IronMan Triathlon, CEO of her own jewelry design company, and motivational speaker, Win truly is an inspiration to many. Today, Win tours the country, speaking to schools and institutions to raise awareness about cerebral palsy and living a full life no matter what holds you back. She is also an advocate of veterans across the world. 

Follow Win

Facebook 

Twitter 

Google+ 

Podcast

Purchase Win's books

Amazon

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12 Ways to Reach Out to Caregivers During National Caregiver Appreciation Month

Chances are you know someone caring for an ill or disabled loved one.

This could be due to an illness such as Alzheimer's, Parkinson's, cancer, stroke, or a variety of other conditions. Some provide live-in care, others visit daily or weekly, and some oversee care from a distance or care provided by hired aides or a nursing facility.

No matter how the caregiver performs his or her role, caregiving is a tough job, requiring resources that are often scarce: time, money, support, and assistance.

The CDC tells us that more than 34 million unpaid caregivers provide care to someone age 18 and older who is ill or has a disability, and an estimated 21 percent of US households are impacted by caregiving responsibilities.

Almost all of this work is unpaid, typically provided by family members, and often performed around the clock with no breaks. In addition, many caregivers juggle other responsibilities such as jobs, raising children, and managing their own households.

November is National Caregivers Appreciation Month, and a great time to reach out to those providing care and help lighten their load.

In recognition of those who work tirelessly and selflessly to care for a loved one, here are 12 ways to reach out to caregivers, to offer assistance and let them know you care. These people need support, and often that support doesn't cost much, if anything, and takes little time.

1. Ask if you can sit for them a little while so they can run errands, take a break, see the doctor, or attend church or a caregiver's support group, whatever they need to do to take care of themselves.

2. Going to the grocery store? Call and ask if there's anything you can pick up for them.

3. If your employer allows, donate paid sick time, vacation days, or personal time to a coworker caring for a relative who is hospitalized or needs post-hospital care.

4. Volunteer to mow the lawn, weed the garden, rake the leaves, or shovel the snow.

5. Share the bounty, whether from your vegetable or your flower garden. Fresh produce and fresh flowers are cheerful.

6. If you have the skills and tools, offer to change the oil in their car and rotate the tires.

7. Again, if you have the skills and tools, offer a free haircut to the caregiver and/or their loved one.

8. Walk their dog.

9. Ask if they'd like you to wash and clean out their car.

10. Volunteer to take out the trash and bring the barrels out to the curb on trash day.

11. Double cook a meal, preferably one of their favorites, and send over a dinner.

12. Include them in your prayers.

photo by Ocskay Mark via Dollar Photo Club

Book Review: 5 Stars for Greg O'Brien's Revealing Memoir On Pluto: Inside the Mind of Alzheimer's

Books about Alzheimer's and dementia are difficult reads. Not only are they cruel reminders of a devastating fate that befalls a large proportion of us, they force us to think about and examine all the difficulties it entails. With 5.3 million Americans living with Alzheimer's and other dementias, it's important for us to learn as much as we can about it, so we can understand what is happening to the individuals who have it, whether they are known to us or not. This is a fate that could happen to someone we love or even to ourselves. Pretending it's not there is not an option. 

Greg O'Brien's On Pluto: Inside the Mind of Alzheimer's is one of those books that should be at the top of the reading list. Written by an award-winning journalist with 30+ years of experience, On Pluto takes us into the deepest and darkest secrets of this disease. 

O'Brien holds nothing back, revealing how his forgetfulness started to unravel the day-to-day details of his life and how he chose to meet the disease head on. He was no stranger to its cruelty after witnessing his own grandfather and his mother succumb to it, leaving him with a "blueprint" of how to live - and fight - with Alzheimer's. 

Diagnosed with Early-onset Alzheimer's in 2006 at the age of 59, he decided to use his knowledge, skills, and platform to educate others about living with a brain disease that  robs you bit by bit of your memory. It may sound easy to do given his skills and talents, but it is never easy or routine to reveal something so deep and personal as the losing of one's mind. O'Brien rightfully prized his above average intellect, and witnessing its gradual disappearance within the pages of this book is sobering and sad. 

 

The story he tells is one of loss, fear, uncertainty, and doubt. It's about the betrayal of one's own body, the altered future, the coming years not to be enjoyed. It's a story of growing up Irish, of a Cape Cod life, of a 37-year marriage, of family. It's about a lifelong dedication to a profession that revolves around words, words that the disease steals each day. 

I've read many books about Alzheimer's and this is only the second written by the person affected. The first was Thomas DeBaggio's Losing My Mind, also written by a newspaperman and writer like O'Brien. I thank God that we have men who are able to use their skills to bring us this enlightenment. We need it.

To meet Greg please visit the Living With Alzheimer's Film Project. 

To purchase On Pluto please go to Amazon or Barnes and Noble.

For a selection of other great books that shed light on Alzheimer's please visit #AlzAuthors.

Follow #AlzAuthors on Twitter. Visit our event page on Facebook where we share information on Alzheimer's and dementia and where you are  welcome to share your own story. 

 

To win a copy of Greg O'Brien's On Pluto as well as the other books in the #AlzAuthors collection please enter our giveaway. 

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