Blogger Lickety Glitz Invites Us into Life with Vascular Dementia in “Stumped Town Dementia”

By Lickety Glitz

I started…

… to worry that Mom’s behavior wasn’t old age quirky-ness, but possibly a much more serious problem.

I started…

… a new career that required relocating away from family, friends, and the region I loved best.

I started…

… to consult with Dad on my visits home about how long we thought it might be before he needed me back permanently to support him in Mom’s care. Another year? Three? Five?

I stopped…

… breathing when the ER doctor announced on conference call that Dad had stage 4 pancreatic cancer. I could tell that those who were there in-person had stopped breathing too.

I started…

… sharing 24/7 care for Mom with my sister when Dad died three weeks later.

I started…

… blogging about our dementia adventures a year later as a way to keep far off friends and family engaged in Mom’s life. I’ve been writing for over a year now, and…

… I’ve started to realize it’s so much more.

It’s a lifeline for me. An umbilical cord to a not-so-distant universe of word-weaving creativity; now a tiny galaxy of curling and curving locution that tethers me to the world of my present.

It’s a permanent record of a journey I don’t want to forget. An autobiography of dementia certainties: misplaced items, misplaced poop, mismanaged emotions. A sweeping saga of dementia unknowns; tremendous courage, epic failures, colossal comedies.

It’s a connection to a massive universe of dementia caregivers who see their journey mirrored in ours. It’s a connection to a smaller cosmos of family and friends who can’t always be with their beloved Gloria but want to stay informed. It’s a connection to my sister, The Other Girl, a relationship sometimes fragile and strained, but united in a never-questioned bond of love for our mother.

And lastly, it’s a connection to myself; my devastating defeats, my soaring successes, my inherited joy of hilarity in the tragically absurd – a gift from Mom and Dad who shared the same comedic sensibilities. When I write a post, whether dire and dark or laugh-out-loud light, I have to relive my emotions, examine my responses, assess my behavior with unflinching honesty. If I shrink from that often-painful task, then I am doing everyone who follows our adventures a disservice in telling a dishonest tale.

A year ago, I sat down at my computer to inform family and friends of Mom’s dementia progression. A year later I rise in realization that I’m actually telling myself about myself.

About the Author

Stumped Town Dementia is a personal blog chronicling the dementia adventures of Girl and The Other Girl, sharing hilarious, heartbreaking, bittersweet and courageous moments of life with our Mom who has vascular dementia. We celebrate the insanity and relish the laughter of this long, strange journey. It helps us make it through the days when there are no smiles to be had.

Stumped Town Dementia has been featured on The Caregiver Space, Family Caregiver Alliance, Being Patient, and Alzheimer’s Society UK.

Lickety Glitz has been a former just about everything from non-profits arts administrator to cabaret performer to post-production professional to Crappiest Daughter of the Year award winner about 40+ years in a row. She recently broke that winning streak by stepping up to the plate, hand-in-hand with The Other Girl, to provide their dementia mom with the best end-of-life care possible.

Connect with Lickety Glitz

Website

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Email: licketyglitz@stumpedtowndementia.com

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For more vetted books and blogs about Alzheimer’s and Dementia please visit AlzAuthors.com. Reprinted with permission of AlzAuthors.

Mother-Daughter Team Collaborate on Alzheimer’s Caregiving Guide “If Only You Would Ask: A Guide to Spending Quality Time with the Elderly”

Sometimes questions about ‘food’ or ‘vacations’ or ‘school days’ will ignite a memory, creating a source of comfort and delight

For five years, Joan Berger Bachman and her 92-year-old mother, Eileen Opatz Berger teamed up to write, If Only You Would Ask, A Guide to Spending Quality Conversation with the Elderly. This easy-to- use book is a conversational resource, a manual and a tool for all those who struggle to carry on meaningful, enjoyable conversations. How did this book come about?

Here’s Joan’s Story:

When my father-in-law Bill was nearing the end of his life, I would visit him quite regularly. He had made the decision to stay in his own home until the end. Winters in Minnesota are long, cold and lonely, especially for someone who is afraid and/or unable to venture out. Being the dutiful daughter-in-law that I was, I felt compelled to make the 100-mile drive from Rochester to St. Paul to visit him. We would sit at his kitchen table, and I would tell him about what the kids were up to… and what I had been doing. His major topic of conversation was the rabbits he saw as he stared for hours out the back window of his house.

During this time, I shared with my mother how difficult visits with Bill were becoming. He had so little to share, and I wondered if the visits even mattered. Continue reading

“The Story of AlzAuthors,” or “How 3 Daughters of Dementia Started a Global Community of Authors Sharing their Alzheimer’s & Dementia Caregiving Stories”

The Story of AlzAuthors

Join me as I tell the story of AlzAuthors, the global community of authors sharing their Alzheimer’s and dementia stories to light the way for others, on Friday, June 21st at 2 pm at Middletown Thrall Library, Middletown, New York. This is my fundraising and awareness effort for the Alzheimer’s Association’s The Longest Day, an annual event. You can read more about my personal Alzheimer’s story on my Longest Day Participant Page. 

eReader BHAfter publication of my novel Blue Hydrangeas, an Alzheimer’s love story,  I reached out to two other authors I met online who also published books on this deeply stigmatized subject. What happened next was totally unexpected: We created a movement that includes 200+ authors, a website, bookstore, anthologies, community outreach, and more. Our mission: To bring carefully vetted books and blogs to caregivers and others concerned about Alzheimer’s and dementia and to break through the silence that often accompanies these diseases.

Sharing our stories makes us strong, but sadly too many of those with dementia and their loved ones caring for them are isolated, as shame and stigma often prevent them from disclosing their diagnosis. My  presentation will include a discussion on the power of telling our stories to make change – personally, globally, and legislatively – and how those overcoming or facing dementia and its caregiving can tell their own stories. Continue reading

AlzAuthor Julie Bigham Shares How to Create Joy Filled Visits in the Midst of Alzheimer’s

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By Julie Bigham

My passion for bringing joy to the lives of seniors began at an early age, when my gramps encouraged me to entertain at his Senior Center. Fifteen minutes of stand up, egged on by applause from the crowd, ignited a spark of love in my heart for the older generation. Thirty plus years later that spark has erupted into a full flame of passion for providing support to professional and family caregivers caring for loved ones living with Alzheimer’s.

Through my work experience as an activity professional, it became evident to me that providing high quality, compassionate care for those living with Alzheimer’s takes a village, and family engagement in any setting is vital. Families can become overwhelmed with doctor visits, medication changes, increasing care needs, and care plan meetings, not to mention the emotional stress. With everything they juggle, families can forget the importance of spending quality time having fun with their loved one, often spiraling into isolation and depression. Continue reading

“Life on Planet Alz” – An Alzheimer’s Caregiver Shares His Story

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By Jack S. Cohen

This is a true story about coping with my beloved wife’s devastating diagnosis of Alzheimer’s disease (AD), the terrible scourge of our age.  In general, people are living longer and diseases of the aged are becoming more prevalent. The major neurological disease of the aged is in fact AD. Whenever a person is diagnosed with AD, their spouse automatically becomes their primary carer and unwittingly also becomes a prisoner of the disease.  

There have been many excellent books and descriptions of AD and its ravages upon the minds and lives of people, so why write another account?  Each case of AD is unique and two novel aspects of this account are: the focus on the way that AD imprisons both the patient and their spouse in a constant process of deterioration, and the inclusion of an almost daily journal describing raw incidents that can be enlightening for the reader, and especially for the spouse of an AD sufferer.  This illustrates the vicissitudes and the almost total preoccupation that this disease encompasses. Continue reading

AlzAuthor Bobbi Carducci Offers Hope to Alzheimer’s & Dementia Caregivers in a New Anthology of Inspiring Stories

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By Bobbi Carducci

Caregivers very often become isolated as the needs of the one-in-care progress. Even well-intentioned family and friends begin to drift away, leaving caregivers wondering if anyone understands what their life has become.

I know that feeling very well. A caregiver for my father-in-law, Rodger, for seven years, I often felt as if the rest of the world had moved on to work and family life, believing my days were easy.

Some questioned how hard could it be to stay at home and cook his meals and take him to the doctor now and then. Surely I exaggerated the difficulty.    Continue reading

With Recipes, Poetry, and Prose Author Miriam Green Shares her Alzheimer’s Story in “The Lost Kitchen”

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By Miriam Green

When my mom, Naomi, was first diagnosed with Alzheimer’s I felt relieved. The doctors had finally acknowledged what our family had surmised for almost a year—Mom was losing her memory. Ok, I thought, what now?

Little in our lives changed at first. Mom still rattled around in her kitchen, she was still an avid music lover, conversationalist, and sweet companion. She could maintain her household, and even stay by herself in the evenings when my dad, Jack, was busy. But the signs were everywhere.

There was the day she tried to unlock the front door to her apartment with the wrong key. It didn’t occur to her that she should try another one, or even ask for help. I was waiting patiently on the other side as she jammed that key into the door over and over, swearing in language I had never in my life heard her utter. Daddy rushed from the shower, thinking she’d hurt herself with all the screams. It took a while to calm her down.

What did change dramatically in my life was a commitment I made to visit my parents once a week. I traveled 2½ hours each way by public transportation to be with them. Mostly, I was there for Mom. Those were wonderful mornings. We would do all manner of activities together, ambling around the city, drinking coffee, and enjoying the sunshine. I used those visits to organize my parents’ kitchen and cook them food for the week.

cover 7b Top to Bottom FadeI was privy to Mom’s anxiety over her waning memory. I held her as she cried bitter tears and told me she felt confused. It was the first indication that our roles would soon be reversed, that I was losing my mom by degrees, that the only way forward was a painful decline that inevitably led to death.

It’s been more than seven years now. I’ve learned a few things along the way— to avoid questions in my conversations with Mom; how a person’s gait can define their ill health; that front-closing bras are an Alzheimer’s intimate friend; and how to judiciously use her memory loss for our gain.

I don’t think we can ever be prepared for the strange turns and curves life throws us, but I do know that it helps me to write about them. First came the poetry. Then, what was initially a project I started with my dad as a humorous initiation into the world of cooking and caring for a spouse with Alzheimer’s—we called it “The Man’s Emergency Cookbook”—eventually morphed into its current composition. Thus were born my cookbook and my weekly blog. I didn’t need to be alone in my frustrations, fears and struggles. I could connect with the community of Alzheimer’s patients, their families and caregivers who were only a short click away.

And through it all, I cooked. I took what Mom had taught me when she was still active in the kitchen and used that as a basis to experiment with easy recipes that fed my spiritual and emotional hunger. My book, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver, is a combination of recipes, poetry, and prose about my family and how we have shared the demands of Mom’s Alzheimer’s.

About the Author

Green, Miriam headshotMiriam Green writes a weekly blog, The Lost Kitchen,  featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her blog also appears on the ALZ Blog from the Alzheimer’s Association.  Her poetry has been published in several journals, including Poet Lore, The Prose Poem Project, Ilanot Review, The Barefoot Review, and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. She holds an MA in Creative Writing from Bar Ilan University, and a BA from Oberlin College. Miriam is a 20-year resident of Israel, and a mother of three. You can find Miriam on Facebook and Twitter at @thelostkichen.

 

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Continue reading

How Saying “Yes” Helps Caregivers: Introducing “Start With Yes!”

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From the AlzAuthors Blog

By Cathi Braxton and Tami Neumann

Janna, a resident in a memory care facility, woke up one night and found a few staff members congregated around the nurses station.  When a nurse asked Janna what was wrong, Janna told the group that there were alley cats outside her window making all sorts of ruckus.  Several of the nurses seemed dismissive of  Janna with their sideways glances and eye rolling, but one staff member, Terry,  approached Janna with a kind but concerned smile on her face.

“Janna, let’s go see what all that ruckus is all about.  I suspect alley cats get hungry at this time of night.”  With that the two of them headed back down the hallway and disappeared into Janna’s room. Continue reading

From the AlzAuthors Blog: Carol B. Amos Shares “H.O.P.E. for the Alzheimer’s Journey”

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By Carol B. Amos

My two brothers and I were devastated when our mother began displaying signs of Alzheimer’s disease in 2002. She lived alone in her home and her nearest adult child lived four hours away. We banded together to face this challenge head-on. We began a period of observing, investigating, collaborating, and careful listening to gain insight into the situation. We visited and called our mother more often. We each solicited advice from caregivers we knew and visited our local Alzheimer’s Association office.

My brothers and I worked hard to help our mother maintain her independence and remain in her home. We worked with her doctors, and after multiple attempts Aricept was prescribed. We hired a social worker and nurse to assist her. When “issues” arose, we never knew if an event occurred as she explained. This was extremely frustrating to us. Eventually a dangerous incident demonstrated that she could no longer live alone. It was difficult taking responsibility for our strong, independent mother. Continue reading

From the AlzAuthors Blog: Meet Susan Cushman and Her Memoir “Tangles & Plaques”

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By Susan Cushman

My mother, Effie Johnson, was second generation Alzheimer’s. Her mother, Emma Sue (for whom I was named) died from Alzheimer’s when she was 87 years old in 1986, in the same nursing home in Jackson, Mississippi where my mother would spend the final eight years of her life. I remember watching my mother care for “Mamaw” and wondering what our future might bring.

Twenty years later, in 2006, I moved Mother into assisted living. My father had died of cancer in 1998, leaving Mother alone. After eight years of watching her gradual decline and taking on more of her day-to-day responsibilities, especially her finances, I offered first to move her in with us—which she declined—and second to move her to Memphis to an assisted living home. She begged me to let her stay in Jackson, which I did. This meant I would spend the next ten years making the 400-mile round trip to participate in her caregiving, although she did have help, first in assisted living, and finally in a nursing home. Continue reading