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.
Worse was when I doubted myself. Was I the only one who questioned whether my loved one was faking sometimes? Or wondered why someone I cared about and rearranged my life for was suddenly treating me as the enemy? Did anyone else get angry and lose their temper or was that a character flaw unique to me? Toward the end, after weeks of little sleep and constant stress, when I prayed for it to be over, I questioned my humanity. I didn’t want him to die. I wanted the pain to end. But still, was I the only one holding that silent wish in their heart?
After speaking with caregivers and interacting with them as caregiver support group leader, and through online groups and as speaker at caregiver conferences, I heard many caregivers express the same doubts and fears inspiring me to write my second book for caregivers.
Caregiver –You Are Not Alone is an anthology of caregiver stories representing varying ages, genders, and family dynamics all doing the hardest job they ever had to do. Although they may be slightly different from our personal experience, they are our stories too.
Each story is followed by an essay reflecting on my personal experience and feelings while caring for Rodger, when I felt very much alone.
About the Author
Bobbi Carducci is a national speaker on the subject of Alzheimer’s and dementia, how it affects entire families and how to Prepare to Care – What Adults need to Know about Alzheimer’s/ Dementia Before and After It Strikes Home.
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. Okay, I thought, what now?
Little in our lives changed at first. Mom still rattled around in her kitchen, 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.
I 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
Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her blog also appears on the Alzheimer’s Association website, http://blog.alz.org/. 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 at https://www.facebook.com/miriam.green.7399, and on Twitter at @thelostkitchen. https://twitter.com/thelostkichen.
I am an occupational therapist, specializing in developmental disabilities. I had never planned to work in the area of geriatrics. But when my mother developed Alzheimer’s disease, I was thrust into the world of home care, Medicare, assisted living and nursing homes. I read numerous books and learned the lingo of lawyers, the health care bureaucracy and gerontology.
Fortunately, as an occupational therapist, I have years of experience adapting environments and creating activities to promote functional skills and quality of life. I wrote this book to share how I helped my mother enjoy her life as best as possible, as she regressed through the stages.
I could not help but notice that the residents in my mom’s assisted living and then her nursing home had few visitors. I believe that there are many reasons for this, but common ones are:
Friends and loved ones are scared and confused about the person’s decline
Friends and family do not know how to relate to a person who may no longer speak or seem to recognize them.
And most sadly, friends and family think that the person has so little awareness that their presence is of no value.
My primary goal in writing Still Giving Kisses: Helping and Enjoying the Alzheimer’s Victim You Lovewas to offer an alternative to the above situations. Like many others, I was in the “sandwich generation.” My son was a tween and teen during these years and had many developmental and social challenges related to autism. The time crunch from work and family obligations naturally made spending time with my mom difficult–as I’m sure is true for millions of other caregivers. However, when loved ones learn how to help and actually enjoy being with this person, the relationship takes on a beautiful and mutually beneficial meaning. Given the right information and support, family and friends can learn how to spend quality time with a loved one that will create positive memories.
The title of this book reflects one of the few remaining motor acts my mother was able to perform during the last few months of her life. When she was no longer speaking, non-ambulatory and unable to eat independently, she was still able to pucker up her lips to communicate “I love you, come over for my kiss.” This was a highly significant motor act, one that symbolizes a continuing connectedness between myself and the Alzheimer’s victim I loved.
There are many books on the market that describe the symptoms and stages of Alzheimer’s disease and behavioral interventions that promote function. Often this information is dry and overwhelming. There are also many highly readable memoirs that give the spouse, adult-children or the victim’s point of view. In writing, Still Giving Kisses, I strove to provide both.
You will read a compelling memoir of a woman whose earlier mental health problems compounded the many challenges of memory impairment. The many therapeutic techniques, adaptations and teaching tools I share are all tricks of the occupational therapy trade, along with my own unique touch. Extensive resources and medical, legal and care-giving information provide survival tools.
Although I wrote this book primarily for friends and family of Alzheimer’s victims, Still Giving Kissesprovides a framework for health care professionals entering the field of geriatrics. Indeed, I wish this resource had been available when my mother began showing the earliest symptoms. I hope that my book helps you to enjoy a journey that nobody chooses to take . . .
About the Author
Barbara Smith is an occupational therapist specializing in developmental disabilities. She discovered a penchant for creating highly effective therapeutic activities out of household materials such as detergent bottles, cardboard boxes and newspapers. Her book The Recycling Occupational Therapist describes how to fabricate and use these activities.
Barbara’s second book From Rattles to Writing: A Parent’s Guide to Hand Skills(published by Therapro, Inc. 2011) is written for parents with typically developing children from ages birth through five years to help develop the skills needed to read and write. In addition, the activity adaptations make learning easier for children with sensory, motor or sensory challenges.
From Flapping to Function: A Parent’s Guide to Autism and Hand Skillsis written for parents of children who have or they suspect may have an autism spectrum disorder. Readers will learn how autism impacts the development of hand skills and to use the teaching strategies and adaptations that help children reach their potentials to perform everyday functional activities and academic skills in school.
Please visit the following links for information on resources including my books, courses, educational videos and social media.
“H.O.P.E. for the Alzheimer’s Journey: Help, Organization, Preparation, and Education for the Road Ahead.”
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.
I learned about Alzheimer’s disease through reading, attending workshops, observing caregivers, and from on-the-job training. I have learned from my successes and my failures during this eleven-year period. I have shared my learning, experience, and encouragement with friends, family, and colleagues as they embarked on their journey. I found that a little information made a big difference in their caregiving, so I wrote the book “H.O.P.E. for the Alzheimer’s Journey.” Help, organization, preparation, and education can make the Alzheimer’s journey less stressful and more rewarding.
“H.O.P.E. for the Alzheimer’s Journey” equips caregivers for their journey. The book is a combination of structured information, insights, and personal narratives to demonstrate the concepts. The concepts are conveyed in an open, honest, and creative manner using original family email communications. These emails provide insight into our thoughts, concerns, emotions, and deliberations as we realized our mother’s memory loss, sought a diagnosis and treatment, selected housing options, and developed care strategies as our mother continued to deteriorate. The book introduces The Caregiving Principle™, a simple and novel approach that provides a deeper understanding of the person with Alzheimer’s and a framework for the caregiver’s role. The Caregiving Principle™ statesthat the amount and type of caregiving required is directly related to the needs and capability of the person requiring care. In other words:
“Needs of the Person” – “Needs Filled by the Person” =“Needs to be Filled by the Caregiver(s)”
Simply put, if a person has needs and cannot provide for all of their own needs, then someone else must provide those needs. The “someone else” is a caregiver. The principle utilizes a holistic approach by using Abraham Maslow’s Hierarchy of Needs to define a person’s needs. Maslow’s Hierarchy of Needs increased my understanding of my mother.
“H.O.P.E. for the Alzheimer’s Journey” has been a blessing to many caregivers since the pre-release in May 2018. My ultimate goal is for the book to become obsolete. I am actively involved with fundraising and advocacy efforts to increase research so that a cure is found for Alzheimer’s disease.
About the Author:
Carol B. Amos started her Alzheimer’s journey when her mother started having memory problems. Carol has immersed herself in Alzheimer’s education by reading and attending conferences, workshops, and support groups. Carol is a CARES Dementia Specialist and is Alzheimer’s Association essentiALZ Plus certified. She was the winner of the 2012 “Your Favorite Memory” essay contest sponsored by the Delaware Valley Alzheimer’s Association. She has a passion to share her knowledge and make the journey for Alzheimer’s caregivers less stressful and more rewarding. She is also working to help eliminate Alzheimer’s disease as an Alzheimer’s Association volunteer, fundraiser, and advocate.
Carol has a B.S. and M.Eng. in chemical engineering from Cornell University. She retired from a thirty-five-year career at The DuPont Company. She is active in her church (youth ministry, women’s ministry, usher board, and construction committee). She has been married to her husband, Alvin, for nineteen years. She enjoys tennis, travel, and gardening at her home in Delaware.
Why would a 78-year-old grandfather who doesn’t like to write become a blogger? The answer lies in my personal experience before my wife Kate was diagnosed with Alzheimer’s in 2011.
We played a major role in caring for our parents. There was a lot to learn. I felt we knew far too little about our parents’ experiences before our involvement in their lives. Kate and I were happy to have cared for them, but we wanted to make life easier for our own children. That meant keeping them knowledgeable about our lives. That, in turn, led me to start a journal the day of Kate’s diagnosis. This was a way to document our experiences for future reference.
After a year or two, I began to think that my journal might be of interest to others, especially those who are living with Alzheimer’s themselves. It was too much for a book, and I was continuing to make regular entries. A blog seemed like the way to go.
There are three things about our story that make it a little different from others. First, it is both an account of our post-diagnosis experiences, as well as a “real-time” account of what is happening every day. Second, ours is a story of optimism and joy. No couple escapes the challenges of dementia and the sadness that comes with it, but we have been able to live happily throughout our journey. Third, it is not a place to look for advice. I believe there are many other sources for that. This is simply our story. It tells what it’s been like for us to live with Alzheimer’s.
We’ve maintained an active lifestyle throughout our journey. Most of that has involved our everyday activities here in Knoxville. We attend most of the theatrical productions at three of our local theaters. In addition, we attend a variety of musical events that include opera, jazz, and Broadway. We have traveled a good bit over the course of our marriage. Since Kate’s diagnosis, we’ve enjoyed an African safari and trips to Machu Picchu, the Galapagos, and New Zealand. Our last and final international trip was to Switzerland in 2015, where we both paraglided off the mountain top overlooking Interlaken.
About a year after her diagnosis, we started eating out for all our meals except breakfast. For us, that has proven to be one of the best decisions I’ve made. The meals themselves have been secondary. The important thing is that it has helped to minimize stress and social isolation. It wouldn’t be for everyone, but it works for us.
We’ve been very fortunate. We continue to enjoy life and each other even though Kate’s memory is virtually gone. It is only now that we are reaching the hardest part of our journey. Our experiences may not be representative of others, but I am sure that almost any primary care partner will recognize the issues we have faced. If you get a chance, drop by sometime at http://livingwithalzheimers.com.
About the Author
Richard Creighton is a former college professor and business owner. He and his wife, Kate, met in college and have been married 55 years. They have a daughter and a son and five grandchildren.
Caregiving has been a central part of their lives since the Fall of 1989 when Kate’s father had a stroke. Three of their parents were cared for and died at home, his father in the hospital. Kate’s mother lived in their home for almost 5 ½ years with 24/7 care provided through an agency. Through those experiences Richard learned much about the health issues, living arrangements, and personal care for people with dementia.
Kate was diagnosed with Alzheimer’s two years before his dad died. He says that his experiences with their parents has helped him to be a better primary care partner for Kate. He is guided by his belief that there is no greater privilege than to walk with someone you love through the last chapters of her life.
“The upside of Alzheimer’s; new mother.” (Smith’s Six-Word Memoirs)
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. I never regretted leaving her in Jackson, where friends from her church would visit her, as well as friends of mine whose parents were in the same nursing home. In Memphis, she wouldn’t have known anyone but my husband and me.
Up to this point Mother’s story doesn’t sound very different than any story of a daughter dealing with an aging parent. But what’s different here is that the tangles and plaques that destroyed Mother’s brain weren’t only in her brain, but also in our relationship. Mother had been verbally and emotionally abusive to me for most of my life. Her abuse was the catalyst for many of my mental health issues, especially eating disorders, depression, and addiction. Thankfully I am healing from most of those disorders today, at age 67. And the silver lining behind Mother’s Alzheimer’s is that at some point the disease took away the part of her memory that was abusive. She forgot how to judge and criticize, and became very loving in the final stages of the disease. I had these words published in Smith’s Six Word Memoirs during that time: “The upside of Alzheimer’s; new mother.”
During the years that I was making those trips to Jackson to visit Mother—first weekly, then every other week, and in the final years, monthly—I was also starting a late-life career as a writer. I was publishing essays in various journals and anthologies, and working on a novel. In 2007 I started a blog. For a number of years the blog followed themes: “Mental Health Monday,” “Writing on Wednesday,” and “Faith on Friday.” I wrote about everything from sexual abuse and eating disorders to spirituality, art, and writing. And yes, about my mother’s Alzheimer’s and our relationship. In fact, I published 60 posts about mother between 2008 and 2016, the year she died. I received a lot of positive feedback on the blog, and one reader suggested that I publish the posts about my mother as a book.
Tangles and Plaques: A Mother and Daughter Face Alzheimer’s is ultimately a love letter to my mother. It’s about forgiveness—which I was able to give before she forgot who I was, thankfully. Of course it contains sad stories about difficult struggles, but it’s also full of humor and grace. Mother died in May of 2016. No more tangles and plaques. For her.
* * *
Susan Cushman is not only an accomplished writer, but she tackles a brutal topic with candor and honesty. Madness awaits us all. I pray I can confront it with equal faith and vulnerability. —Neil White, author of In the Sanctuary of Outcasts
Cushman has written a new kind of love story, one that speaks to the very real concerns of a generation. In this true story of a daughter’s love for her aging mother within the daily trials of caregiving, we read ourselves, our families, and the ways that our losses shape who we become and how we choose to remember. —Jessica Handler, author of Braving the Fire: A Guide to Writing About Grief and Loss
About the Author
In addition to Tangles and Plaques: A Mother and Daughter Face Alzheimer’s, Susan Cushman is author of a novel, Cherry Bomb(2017), and editor of two anthologies—A Second Blooming: Becoming the Women We Are Meant to Be(2017) and Southern Writers on Writing(2018). Her essays have been published in numerous journals and anthologies. She is a regular workshop leader and conference speaker. Susan has three grown children, four granddaughters, and fifteen Godchildren in the Orthodox Church of which she is a member. A native of Jackson, Mississippi, she has lived in Memphis since 1988.
It took years of silence for me to come to terms and let it all out. Everything came to an abrupt halt in August of 2015. On that painful and dark day, our mother was ultimately placed in a nursing facility. We continue to struggle with that painful decision. My personal guilt, frustrations and regret plagued my soul to the point of endless days and restless nights. I was able to find relief when I pulled out my tablet and began to jot down everything that had been swirling around in my head.
I started writing about the good times; there were a few. The more I wrote, the more I relaxed and I could finally exhale. I used words to breathe life into the dark reality I suppressed for far too long, finding a voice in writing that I wasn’t quite comfortable with verbalizing. I felt incapable of being accountable to myself, let alone anyone else.
“I Remember” is a candid and brutally honest glimpse of what my family and I experienced on our journey with Alzheimer’s. My writing is a deep dive with frank details about some tough and challenging times, as we struggled to communicate and collaborate with one another. It took a lot of time for me to realize that I wasn’t the only one hurting. The very same pain that was ripping at my heart and head was also wreaking havoc on each and every member of our family in a very distinctive way.
As I talked with friends and colleagues about the difficulties we were having as a family, I was amazed by the number of other families being torn apart by a crisis that ultimately led to family conflict. This realization gave me vigor and purpose, while it helped open my eyes to the fact that we are not alone. Although we lacked control over many things that were happening around us, we eventually learned that we did have control on how we would emerge from the ordeal. Our family learned a tough lesson the hard way.
Unfortunately, families in conflict while in the midst of a crisis are a part of everyday life. When emotions run high, anything can happen. It was deeply troubling to watch everyone I loved slip away. It was almost as difficult as watching Alzheimer’s steal our beloved mother.
Our family wasn’t ready, willing or able to function when Alzheimer’s reared its ugly head. “What would mother do?” Mother would hold herself accountable and pay her dues to herself–first. By dues, I mean DUES –Do better, Understand better, Expect better, Serve best! It’s what I decided to do and our family is in a much better place today.
I Remember was released in June 2017 and is about a family in conflict, while in the midst of a crisis. Our family’s crisis was and is Alzheimer’s. Just when we thought all hope was lost, we mustered up the energy to fight for our mother, fight for our integrity and fight for our family. Only then were we able to transition from victims to victory.
About the Author
Vanessa K. Williams-Harvey is a life-long advocate for setting high standards and helping others to achieve their life purpose through self-awareness and proper planning. She is a registered nurse by profession and currently serves as a Clinical Informatics Manager. She is also an adjunct faculty with a local college. In these roles, she has the ability to connect with many diverse people and empowers them to thrive in an ever-changing world.
The book, I Rememberis about her family’s journey when its matriarch is stricken with Alzheimer’s disease and how this crisis almost destroyed everything their mother had spent a lifetime building. Only with time, acceptance, forgiveness and faith were they able to move from victims to victory. Every family faced with a crisis is challenged and tested in ways that exposes vulnerabilities.
Vanessa is an advocate for Alzheimer’s awareness and serves as a co-chair for the Louisville area Walk to End Alzheimer’s. She is married to her husband, Mark Harvey, and they are the proud parents of four grown sons and a dog, Maxx. They both are active members of Burnett Avenue Baptist Church in Louisville, Kentucky.
The time is now to strive for personal acceptance and satisfaction by paying DUES — Do better. Understand better. Expect better. Serve best!
When my husband and I began the long journey taking care of my mother, we had no idea what to expect. We had no experience, knowledge, or help from anyone. When we first suspected Mom was ill, I began research how to help her travel through the relentless disease of Alzheimer’s. I found quite a number of books, but they were most often written from a medical point of view.
After my beloved mother died in ’09, I felt a strong urge and need to help others going through what we had gone through with caregiving. I wanted to write a book from a personal point of view, a book full of tips and ideas from someone who had actually traveled this road with their ill loved one. I felt very motivated to try to ease the burden that I know from firsthand experience others feel when being a caregiver.
I wanted to write the book shortly after Mom’s death, but it was too difficult to relive everything so soon after experiencing our caregiving journey. So, as I recalled things we did, I would jot them down on Post-it notes and put the notes away for a later time when I knew I would be ready to write.
In my book, Dementia or Alzheimer’s? I outline many methods and techniques we used to attempt to give Mom’s life (and ours) some semblance of normalcy. Much of it was trial and error, but for the most part, things were much easier for Mom, as well as us.
I have received many thanks for writing this type of book. People have told me numerous times there really is not a good book from a hands-on caregiver that is so personal and chock-full of helpful information and resources. The feedback from others is phenomenal. The reviews on Amazon are excellent. My book ranks quite high on Amazon, reaching an Amazon Best Seller status in the first week of publication.
There are so many desperate caregivers today with nowhere to turn, many with no one to provide assistance and respite for them. My heart is heavy every time I hear of someone going through this dreadful disease with their loved one. It is my hope and prayer that my book will help to make the journey a bit more tolerable, a bit less stressful and maybe less lonely.
About the Author
Robin Gail grew up in Texas and continues to live there with her husband and beautiful Cocker Spaniel. Robin is certified by the Supreme Court of Texas as a Certified Shorthand Reporter, aka, court reporter, and has owned her own court reporting business for thirty years.
With over thirty years’ experience working in the legal profession, she is now focused on writing and learning to blog. Robin perseveres to accomplish her goals and realizes the importance of honesty and integrity in reaching those goals.
She is delighted to have her first book, Dementia or Alzheimer’s? published. Robin has always been extremely dedicated to the task at hand and works hard to help others in need.
In her spare time, she enjoys gardening, playing the piano, cooking, photography, reading both fiction and non-fiction, and writing.
Before my husband was diagnosed, I had never heard of MCI. Before my husband was diagnosed, we teased each other about our failing memories. Yes, he was weirdly forgetful, but I was worse at names–speaking of which, on my blog www.aliceinmemoryland.com, I have changed our names to Alice and Ralph at the request of my husband, a private man. He is a man with a sense of humor, a fondness for“The Honeymooners,” and a not infrequent desire to send me to the moon.
In the two years before my husband was diagnosed, as his memory and mood deteriorated, our joking with each other dried up. I was increasingly scared and embarrassed for my husband, more often angry with him. Our long marriage had been passionate, but often out of kilter as our two strong personalities engaged and clashed and re-engaged. Then, in our late fifties/early sixties, we seemed to have found a happy equilibrium and began enjoying our marriage in earnest. Now here was Ralph ruining everything with what I saw as his inattention and disinterest in me and our lives.
Then came the diagnosis: MCI verging on Early Alzheimer’s. It has frankly been a relief to have a name for the still subtle but profound transformation in Ralph’s mental process affecting his behavior and our relationship. For the last five years, since a spinal tap showed the plaque build-up that predicts Alzheimer’s, the changes have been incremental but profound as we wait for his condition to slide into full blown Alzheimer’s, a disease that will strike more and more couples in the next decades.
Every case of memory loss or dementia, or any irreversible illness for that matter, is different. I cannot speak for anyone else going through the early stages of memory loss with a spouse. But having read other blogs and several books, I wanted to do something slightly different in sharing our experience. Starting from the beginning of Ralph and my journey down the memory rabbit hole, I have tried to use both key moments and the smallest details of our life to explore my own reactions, as a caregiver and also as a woman and a wife. After all, marriage is a relationship based on choice and commitment, not to mention the emotions and intimacy of love that poets and philosophers still struggle to understand.
Although I have published in the past as a novelist, poet and journalist, writing the truth about my past and present life with Ralph has been an enormous challenge. While I write about the moments of joy—and those moments do still happen—I also write frankly about my darker moments and feeling. I am frequently afraid that I am going to disgust readers in exposing my selfishness, my lack of patience, my resentments, and sometimes my fury. Instead, whenever I think I may have gone too far, readers respond with enormous support. They seem to appreciate putting a truth they recognize into words, however unpretty it may be.
It’s an incredibly lonely business caring for someone on the Alzheimer’s spectrum. I am so glad I have found a community in which I can speak my truth and be heard, that in helping others I have found help in return.
About the Author
Liza Nelson, who writes her blog https://aliceinmemoryland.com under the name Alice Cramdon, is the author of the novel Playing Botticelli and co-author of the James Beard nominated The Book of Feasts. She has worked as a journalist, dramaturge, real estate manager, wife and mother. She lives on a farm outside Newnan, Georgia.
by Irene Frances Olson, AlzAuthors Global Outreach Coordinator
The quickest method to connect with someone is the virtual, social media connection with which we are all familiar. But unless a person crosses the precipice from virtual to real, there is no way to truly understand the benefit of in-person relationships.
That was the case for the AlzAuthors Management Team when all six of us convened at the 2018 National Caregiving Conference in Chicago. The team was generously gifted with the opportunity to gather from the corners of the world from which we hail: the states of Washington, Montana, Ohio, North Carolina, and New York, and the Canadian province of Ontario. Meeting for the first time was a highly anticipated emotional event that proved beyond beneficial to me. You think you know someone after spending months or years emailing, texting, and video-calling, but what I discovered is you can’t truly know a person until extended “facetime” occurs.
I met with as many conference attendees as I could and having done so, I came away concluding that community is everything. Like-minded individuals – at least 250 of them – gathered together for several days to feed the spirit, nourish the soul, and further the mission of being a support to the weary caregiver.
Regardless of which disease renders a person in need of care – Alzheimer’s, cancer, ALS, and the like – caregiver heroes need as much support as can be given. A powerful community goes a long way toward lessening a person’s burden, and as AlzAuthors has been known to say:
One can sing a lonely song, but we chose to form a choir and create harmony.