YWMTDW

A husband whose dementia-addled brain is causing him to slowly slip towards toddlerhood.
A thirteen-year-old twig-thin son who stopped eating the day Dad was diagnosed.
A sixteen-year-old man-boy with shoulders too narrow to bear the burden of a dying Dad.
My journal is where I weep words onto the page so no one can hear me cry.

Allyson Schrier is a writer and career coach who is working hard to raise healthy, well-adjusted children in a household with a husband and dad declining due to young onset dementia.
I’ve completed…

Irene Miscione is a Graphic Designer who started writing as a child. She’s working on three novels and several short stories including an outline for her memoir. She’s a published author in several genres and writes a column for the Examiner.com.

Keeping a journal is very helpful especially if you’re the type who has this amazing story ideas or just want to jot some notes down but have the attention span of a gnat. At first when I began keeping a journal it was a hassle because whenever any of us have an idea or inspriation we need to write it down before its gone and forgotten again and it was another journal that was just gathering dust. However over time the journal became a value, since we have become so attached to it. I’ve kept a few journals in my room but its better to have them spread out in the house, so that way you don’t have to run around in order to get that one journal. Even if its a spark or a flare of an idea–it doesn’t matter just write it down! A small ideas can lead to big ideas and it’ll be all thanks to the little journals. I encourage writers, poets, or dreamers to have at least 2-5 journals around the house and to write daily whether its a dialogue, scene, setting, description or a development it doesn’t matter keep a journal on you at all times. 

Samuel

I write in my stories, I write in my blogs, I write notes, letters and e-mails. In my journal, I don’t write; I become the pen and the pen writes. My journal does not judge the thoughts swirling around in my head; my journal does not care if those thoughts are selfish, superficial, or – at times – diabolical. Nor is it concerned with logic, coherency, or justification. The words in my journal just are, allowing me the space to simply be.

Adi Flory is a writer by day, waitress by night with a background in social work as an advocate for victims of domestic and sexual violence. Amidst working on novels of various genres, she writes on adriejf.com and catholicfeminist.com.

One of my favorite phrases that a professor once said to me was, “the difference between the writer and the non-writer is that the writer writes it down.” How simple, but true. We all have individual perspectives and candid observations, but a writer records them. I do this on a regular basis. I have a tiny journal in my car and one in every one of my purses so I’m never without. As a writer, there is something very inspiring and visceral about creating by moving pen on paper. For the amount of time I spend on the computer, keeping hand-written journals is therapeutic and gives me a chance to develop story ideas long before I know what they will become.

Courtney Amber Kilian has an MFA and teaches creative writing and composition. She is writing a historical-based novel on San Diego avocado farming. She loves gardening, yoga near trees, and teatime. For more: @CAmberKilian and CourtneyKilian.com.

I keep three different journals. The first looks like a diary and is adorned with a little lock that doesn’t work. On these glossy pages is a concoction of resources for my writing: descriptions of beautiful and sometimes weird dreams I’ve had, a list of names to consider for future characters, information about the stories I’m writing, and my thoughts on specific subjects. The second journal is a composition notebook, which is where I write about the health problems I’ve been experiencing with my heart. If someone were to read these entries they’d learn about my worries, my hopes, my strengths and weaknesses. One day, these passages may prove to be useful for a story. And the last journal is a small leather notepad that is always tucked into my purse for inspiration that strikes when I’m on the go. In hurried scribbles I jot down street names that could be used for characters, funny statements said by my nephews, and even songs I hear on the radio as music is my muse. Right now I may have just three journals, but a writer can never have enough!

Chrys Fey

Chrys Fey is an avid writer. She has a how-to blog that is dedicated to helping and inspiring writers: http://writewithfey.blogspot.comStruggling with chaos, overload, and stress?
Journaling helps.Writing relieves stress and saves lives. As a caregiver, you spend every spare minute driving to medical appointments, stopping at the pharmacy, cooking, answering questions, paying bills, and helping with matters that used to be private. Journals never argue. They let you vent, expound, rationalize, elaborate, and imagine best and worst outcomes. They let you breathe. A journal welcomes your questions and invites you to explore and analyze possible answers. Journals never talk back. Journals let you finish your thoughts and offer silent, unconditional acceptance.

I love these three voices and the different experiences. I wish I’d read all three while I was caregiving. Wherever you are in your caregiving journey, I hope they help you to see the experience in a new way. If you’d like to share how writing has altered your perceptions, I’d love to read it and perhaps run it here. If your life has ever been touched by brain damage or memory loss-your own (as mine has, from a stroke), a parent or friend’s, perhaps from Alzheimer’s or dementia (as mine has with two close family friends)-then Floyd Skloot is a writer you want to know.

Eight months after my stroke, when I was just beginning to read seriously again, a friend brought a copy of Skloot’s essay “Gray Area, Thinking with a Damaged Brain,” which later began the lead chapter of In the Shadow of Memory.

“I went to sleep here and woke up there,” Skloot wrote. “The place looked the same but nothing in it worked the way it used to … thoughts teeter and topple into fissures of cognition … I lose my way … Thought itself has been a gray area, a matter of lost edges and blurred distinctions … This is not the way I used to be.”

He’s been there. He understands, was all I could think. I grabbed onto his work like a lifeline. I’ve been holding on ever since.

In A World of Light, just as he begins to rebuild his own life, Skloot faces his mother’s slide into dementia. As he assumes responsibility for her care, he confronts the intractable difficulties of their past relationship, along with his fear for his own future.

“The thing that seems to agitate her the most is me. My presence seems to suggest a past and future she cannot grasp, cannot bring into focus.” Then he writes: “I can see in my mother’s ravaged mind one possible future for my own. I can only hope … the virus responsible for my brain damage has not hastened me along her path toward senility.”

In The Wink of the Zenith, Skloot reflects further on his own illness and his mother’s, and how they shaped his life as a writer:

“This time with my mother has been a perfect reflection of what memory itself feels like when it’s compromised. Images rise …often of their own accord, often without connection … There is a feeling of emotional vertigo, an almost hallucinatory sense of being unstable within the rush of consciousness, out of harmony with your own self. Out of time, too, as the threads binding past and present have frayed.”

In 2010, Poets & Writers Magazine named Skloot one of fifty of the most inspiring authors in the world, saying: “Despite virus-induced brain damage, he writes with surprising tenderness and candor about recreating a life for himself and, in the process, makes us think about our own.”

Jan Harrington, whose poems, short stories, and nonfiction have appeared in European and American literary journals, said, “The creative act of crafting the poem required me to reflect on that summer night with my father at a later time, and to notice things impossible to see when I was caught in the experience itself. I saw that both of us were doing the best we could in a situation neither of us would have chosen. This realization allowed me to have more compassion for myself as a caregiver.”

Human beings are…

Holding…

Even after more than 30 years…

When I returned…

Partners…

It might be…

I open…

It is possible that…

You do not have to choose…

I hear…

It looks easy…

I keep several journals around my home, and I keep them handy for when an idea for a new book pops into my head. Sometimes, something will catch my attention and I’ll want to write it down. There have been many beautiful days when I’ve sat outside on my patio and noticed how blue the sky was or the formation of the clouds. I’ve written down what I saw so I could perhaps use the description in one of my stories at a later time. I have six grandchildren ranging in age from 3-13. They call me every few days and share with me whats new in their lives. Some of what I hear I like to use in my books and short stories. My journals inspire me to want to write and to reminisce about special times I’ve spent with my family.

Writing gives perspective and restores sanity. Writing is a lifeline as well as a record. Writing saves lives. Do not underestimate its power.
Today I believe…

I want to…

I love hearing…

Finish one sentence and go on. Start with what needs to spill out. Let the writing take you wherever it wants to. Feel free to make leaps. Write as much or as little as you want. Trust yourself and trust the process.

Write what is true for you in the moment. When your truths change, you can write different things using the same sentence start.Eager to share what you wrote and get feedback?E-mail it to Lgood67334@comcast.net. You never can tell what she might love in your writing and how that might change your perceptions.Praise for You Want Me to Do WHAT?“Swamped with chores, why should caregivers add on writing? It gives perspective, restores sanity, releases stress, and deepens awareness. Writing saved my soul and brought meaning to my caregiving years. Writer, or no writer, journaling your way through this may help and inspire you.”

“Writing from the heart seems to be all that is needed.”“Any writer, experienced or otherwise, needs a place to start and a little encouragement. B. Lynn Goodwin offers this and more in You Want Me to Do What? Journaling for Caregivers, a journal keeper’s guide by a woman who’s been there, done all of it, and emerged with her sanity and sense of humor intact. Goodwin makes it simple and fun to ‘put your judgments about your writing out on the patio, or send them out to play basketball, or buy them a plane ticket to Paris. Let them go.’”ReviewsRead reviews by Veronica Chater, Nicole Langen and more readers on Amazon. Visit http://www.amazon.com/You-Want-Me-Do-What/dp/1606962973/ref=sr_1_1?ie=UTF8&s=books&qid=1291758511&sr=1-1

Dotsie Bregel’s review of You Want Me to Do What? Journaling for Caregivers is at http://www.nabbw.com/list_bookreviews.php?bcategory_id=11

Linda Abbit’s review of You Want Me to Do What? Journaling for Caregivers is at
http://tenderlovingeldercare.com/book-review-you-want-me-to-do-what-journaling-for-caregivers#comment-1508

Additional reviews are available on Amazon, http://www.amazon.com/You-Want-Me-Do-What/dp/1606962973/ref=sr_1_1?ie=UTF8&s=books&qid=1261535386&sr=8-1

Explore the pages behind the buttons in the left-hand column. If you have questions about the book, about workshops, or about anything else, please e-mail Lgood67334@comcast.net.I recently asked Holly J. Hughes, editor of Beyond Forgetting: Poetry & Prose about Alzheimer’s Disease and two other authors from the book how their writing altered their perceptions as caregivers. Their answers should be an inspiration to writers and those who simply want a new view on caregiving.

Hughes said, “Writing ‘The Bath’ gave me an opportunity to reflect more deeply on what it means to be in the present with whatever is happening, even if it’s not what you’d choose. In writing the poem, I saw how staying in the present with my mother’s refusal to take a bath gave us both a moment of much-needed tenderness.

This realization marked a shift in my attitude toward being her caregiver; I was able to let go of who I wanted her to be and instead, be with her where she was. When I could do this, we both benefited: I became a more responsive, more compassionate caregiver and I think she sensed this and appreciated it, too.”

Alice Derry, who received her MFA from Goddard and has written six volumes of poetry, said, “I wrote many pieces in a kind of dialogue with my dad, one we couldn’t have before he had dementia. I wasn’t his main caretaker, but during the times I did care for him, what he said to me became his part of the dialogues of the poems. I was able to make something good out of what had happened to him: his dementia.

“Even though Dad was often ornery and difficult, I had more compassion for him during these years than I had had any time growing up. Being a person in love with words, I really treasured many of the “new” ways Dad used language during these years.”