Tag Archives: writing

Sharing Your Caregiver’s Story

pen and paperMy mother’s Alzheimer’s drove me to write. My writing inspired me to speak. I have received enormous pleasure from connecting with people all over the world, sharing my stories from Connecting in the Land of Dementia and from Love in the Land of Dementia. Now, I’m offering you tips for sharing your caregiver’s story.

 

It All Started with Grief

When I initially realized the depth of my mother’s memory loss, I was shattered with grief.

Every day I went through this:

Visit with mom.

Drive home, wiping tears from my cheeks.

Stumble into the house, walk into a chair or table, and misplace my car keys.

Sit at the dining room table and stare numbly into space.

One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestion I might make to him in a crisis. I was, after all, a writer.

“I don’t feel like writing,” I said.

But his words stayed with me. The next day, I slightly altered my behavior.

Visit with mom.

Drive home, wiping tears from my cheeks

Stumble into the house, walk into a chair or table, and misplace my car keys

Sit at the dining room table and write numbly for 20 minutesimages

 

Pouring Emotions Out & Inviting Understanding In

I poured out my fears, anger, and grief. After doing this for a week,

I began noticing how interesting my visits with Mom were; we were explorers on a wild inner trek.

I started documenting our time together, sometimes even taking notes during my visits. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw there was much hope, promise and energy in my new world.

As I shared my work with friends and family, I realized I was chronicling my mom’s last years and capturing part of our family history.

Sharing Your Caregiver’s Story

How do you take a challenging part of your life and bring it to the page?    Here are a few simple tips:

Pour Out Your Feelings  images-1

Give yourself time to feel your emotions, whether it’s through writing, art, music or other expressive arts. Writing down your feelings helps you understand the depth of what you’re going through. For me, writing helped change my fear into curiosity.

Notice the Details

Write down the particulars, noting simple concrete facts. You are a researcher collecting data.

Uncover the True Story

Look for the universal meaning in your specific experience. How have you changed? How will the reader change through reading your words?

Ask for Feedback

Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.

Celebrate your Accomplishment

Sharing your caregiver’s story takes courage.  Yet, for me, it is one of the most cathartic and meaningful things I  do.

Deborah Shouse is the author of Connecting in the Land of Dementia: Creative Activities to Explore Together and Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

CITLOD very smallLove in the Land of Dementia_cover

Advertisements

Leave a comment

Filed under Care Partnering, Caregiving, Communication, Creativity, Uncategorized

Creating Personal Stories from the Care Partner’s Journey 

 

pen and paperMy mother’s Alzheimer’s drove me to write. My writing inspired me to speak.

Over the last years, I have received enormous pleasure from connecting with people all over the world, sharing the stories from Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

 

It All Started with Grief

When I initially realized the depth of my mother’s memory loss, I was shattered with grief.

My initial reaction was:

Visit with mom.

Drive home, wiping tears from my cheeks.

Stumble into the house, walk into a chair or table, and misplace my car keys.

Sit at the dining room table and stare numbly into space.

One day, during the “staring numbly” phase, my partner Ron said, “Are you writing down your feelings?” It was a smart and sensible thing to say; the sort of suggestions I might make to him in a crisis. I was, after all, a writer.

“I don’t feel like writing,” I said.

But his words stayed with me. The next day, I slightly altered my behavior.

Visit with mom.

Drive home, wiping tears from my cheeks

Stumble into the house, walk into a chair or table, and misplace my car keys

Sit at the dining room table and write numbly for 20 minutesimages

 

Pouring my Emotions Out and Inviting Understanding In

I poured out my fears, anger and grief. After doing this for a week,

I began noticing how interesting my visits with Mom were; we were explorers on a wild inner trek.

I started documenting our time together, sometimes even taking notes during my visits. I wrote about the challenges, humor and blessings. I wrote about my conversations with my father, with friends and family and with the aides, the nurses, the social workers. As I wrote, I saw there was much hope, promise and energy in my new world.

As I shared my work with friends and family, I realized I was chronicling my mom’s last years and capturing part of our family history.

 

Putting Your Life on the Page

How do you take a challenging part of your life and bring it to the page?    Here are a few simple tips:

Pour Out Your Feelings  images-1

Give yourself time to feel your emotions, whether it’s through writing, art, music or other. Writing down your feelings helps you understand the depth of what you’re going through. For me, writing helped change my fear into curiosity.

Notice the Details

Write down the particulars, noting simple concrete facts. You are a researcher collecting data.

Uncover the True Story

Look for the universal meaning in your specific experience. How have you changed? How will the reader change through reading your words?

Ask for Feedback

Read the story aloud to someone and see how it sounds. What’s working and what’s missing? Ask colleagues for a professional critique. Think over their advice and decide what is right for you.

 

I was lucky enough to read some of my stories to my mother and father and receive their blessing for my work. Anytime I featured people in a story, I shared it with them to make sure they were comfortable with the material. When they’re comfortable, it’s time to share with friends and a wider audience, if you wish.

 

Here are some writings from other people on this journey. 

51yPgnDrtkL._SX337_BO1,204,203,200_ Vicki Tapia’s memoir, Somebody Stole My Iron, details the daily challenges, turbulent emotions, and the many painful decisions involved in caring for her parents. Laced with humor and pathos, reviewers describe the book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer’s/dementia patient’s family.” She wrote this story to offer hope to others whose lives have been intimately affected by this disease, to reassure them that they’re not alone.

51fxqMmobmL._AA160_Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself. Acting on long-term memory and skill, coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. On Pluto is a book about living with Alzheimer’s, not dying with it.”     On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Jean Lee’s memoir details her journey caring for both parents who were diagnosed on the same day. It is a WWII love story held together by faith and family.    Alzheimer’s Daughter by Jean Lee  512gVMAe5QL._SX328_BO1,204,203,200_

51qzWrMf+gL._SX331_BO1,204,203,200_Marianne Scuicco describes herself as a writer who happens to be a nurse. She writes this work of fiction based upon her care for the elderly. It’s a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara develops Alzheimer’s and Jack becomes her caregiver.     Blue Hydrangeas by Marianne Sciucco

Shannon Wiersbitzky writes this work of fiction through the eyes of a young girl, not surprising perhaps, as her author bio notes that her own grandfather had Alzheimer’s. In the story, when thirteen-year-old Delia Burns realizes that her elderly neighbor is beginning to forget, she involves the entire town in saving his memories.    What Flowers Remember by Shannon Wiersbitzky41O6F08LmLL._SX321_BO1,204,203,200_

 

 

 

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

1 Comment

Filed under Care Partnering, Caregiving, Communication, Creativity, Inspiration, The Arts

Four Page-turning books

imgresI have to say, I wasn’t really in the mood to read a memoir about the Alzheimer’s journey. But a friend recommended The Long Hello and I sat down to leaf through it. Four hours later, after both tears and laughter, I had completed the lyrical journey, an artful weaving of rational recall and poetic pouring. I could see and feel Cathie Borrie, the author, and I felt I knew her fanciful, magical, distracted, needy, exhausting, interesting mom. Cathie’s honesty and her ability to capture the intricate connections inherent in this dementia journey were like walking a familiar road through a mysterious jungle. This book is a burst of beautiful writing anchored by deep poignancy and meaning.

 

imgres-1I also really enjoyed Martha Stettinius’ Inside the Dementia Epidemic: A Daughter’s Memoir. Meeting Martha and her mom on the pages of her searching memoir was like rediscovering old friends. I identified with Martha and I was also caught up in her story. I was moved by her struggle to truly care for and take care of her mother, while still preserving her soul and her family life. Martha did a great job of creating a compelling and readable story, while offering a wealth of practical tips and resources.

imgres-2Several weeks ago, I wrote about my first visit to an Eden alternative home, the magical Sierra Vista in Santa Fe. The founder of Eden Alternative is Dr. Bill Thomas, who is one of the pioneers in making dementia care more home-like and person centered.  His book, Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home – The Eden Alternative in Action, is rich with ideas for care facilities. Home care partners can use his concepts to make their household even more creative and welcoming. As a bonus, Atul Gawande wrote about Dr. Thomas, in his fascinating book, Being Mortal. You’ll be inspired by Dr. Thomas’s innovation and his tenacity.

imgres-3It’s not often that you read a book about dementia care and laugh.  But when Mara Botonis wrote about carefully laying out supplies for a creative arts project, only to have her loved one staring out the window, then studiously plucking lint from his sweatpants, I had to laugh. I could see my beautiful mom doing exactly the same thing. Mara’s book, When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, is all about making the most of our moments together. Mara knows about dementia from her career in senior living and she has taken the personal dementia journey with her beloved grandfather. She orchestrated the book to make it easy for the exhausted care partner to problem solve and get instant help. She offers activities and projects for a range of abilities and situations.

imagesWhat books are spurring you onward these days? I’m immersed in writing my new book, tentatively titled Creativity in the Land of Dementia, so I’m focused on the topic in all its forms. The great news is that there are so many amazingly imaginative people out there, making the world a more connective and creative place for those living with dementia, their care partners, family, and friends. Which means, making the world better for all of us.

Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

Leave a comment

Filed under Advocacy, Care Partnering, Caregiving, Communication, Creativity, Inspiration, Taking Care of Yourself, The Arts

Four Riveting Reasons to Wield the Mighty Pen

images-3
Psychologist Don Wendorf wrote Caregiver Carols: an Emotional, Musical Memoir to help other caregivers cope with their feelings and to help himself. Writing was cathartic for Don and it offered him insight and understanding into his caregiving journey. Don says, “I always encouraged my therapy clients to keep a journal and I have now experienced for myself just how helpful this is. The whole endeavor of creating something is very life-giving and essential.” Here are a few tips for caregivers from Don:

Nurture Yourself

Take care of yourself the best you possibly can. Do as much as you can that nurtures your body, soul and mind. Exercise like a fiend. Go out with friends. Do creative stuff. Feed your faith. Avoid burnout at all costs. Seek out, accept and ask for even more help than you think you need or want.

Reach Out for Feedback and Support

Rely on people you trust to give you feedback about how you’re doing and if you’re looking burned out. They may be able to see what you can’t or won’t. Talk to other caregivers who know this path and use local or online support groups. Express your feelings to others and let them support and comfort and care for you. Man, it feels good.

Jilt Perfectionism

Let go of perfection and forgive yourself and your caregivee when you goof up, which you ARE going to do.

Explore and Express Your Emotionsimgres-1

Look beneath your anger and see what layers of emotion it may be covering up: anxiety, ambivalence, fear, sadness, resentment, helplessness, hopelessness, depression, remorse, guilt, regret, loneliness, neediness. I think the biggest for me was GRIEF: I was slowly losing the love of my life. Express your feelings. There is absolutely nothing unmanly about it and you are then less likely to use anger as a blanket emotion. So, Caregiver Guys: Man Up!

 Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.

1 Comment

Filed under Care Partnering, Caregiving, Communication, love, Relationships, Taking Care of Yourself

Top Two Tips for the Caring Journey: Writing and Reaching Out

invisibleAs a caregiver, Martha Stettinius, often felt invisible. “Family members, co-workers, and society in general don’t know what we do all day long,” she says. She also felt overwhelmed when her mother, who was in the early stages of Alzheimer’s, moved in with Martha and her family. “I quickly realized I needed outside support,” Martha says.

Writing the Worries Away

 Writing her thoughts on scraps of paper helped her clear her head and face her day. She began attending a group that focused on “writing through the rough spots.” The group provided a safe venue for detailing her changing relationship with her mom.

“When I read my stories aloud to the group, so many people related to my situation,” Martha says. “It was comforting to share my feelings and hear that people identified with me.” That group was a catalyst for Martha; she began writing about her journey with her mother, creating a moving story called “Inside the Dementia Epidemic: A Daughter’s Memoir.”Martha S

Reaching Out and Strengthening Self

Martha also reached out to support groups and elder care counselors.

“We’re all vulnerable,” she says. “Asking for help is not a weakness, it’s a sign of being human.” Martha and her mother were both fiercely independent. When they let go of past conflicts and understood that they needed each other, they experienced a deep love that was very healing. As part of her goal to stay connected with her mom, Martha practiced slowing down and being in the moment. She learned to appreciate the simple pleasures: looking at flowers together, listening to music, making eye contact and communicating without words. She’s also realized that aging is about connecting with others. “Hopefully, we can all create networks and friendships that will sustain us as we age,” she says. “Aging well means not only staying active but remaining accepted and valued members of the community.”

For more information on Martha, please visit: http://www.insidedementia.com/ Here’s a review I wrote of her wonderful book: Reading Inside the Dementia Epidemic is like taking a fascinating journey with an insightful friend. Martha Stettinius captures the intense emotions, the wild confusion and uncertainty, the flashes of anger and worry, the spills of humor inherent in the family caregiving experience. She also describes the unfolding personal growth and deepening connection she experiences with her mom. This is a love story to her mom and to all those who are on the caregiving journey. As I read Martha’s meaningful book, I felt enriched, connected and informed. I highly recommend her book for any reader.

Deborah Shouse, author, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey Share

Leave a comment

Filed under Caregiving, Communication, Creativity, Relationships, Spirituality