by Jennifer Brush

 I am very pleased that I was asked to participate in this opportunity to bring more awareness to Alzheimer’s disease and to the wealth of resources written by care partners that are available to help families. Although each person’s journey with dementia is different, we can all learn from one another and find support in knowing that we are not the only person walking on this difficult and rather bumpy path. 

I am a speech-language pathologist, researcher, and author of five books about dementia. In addition, I have family members living with Alzheimer’s disease, so I have a good understanding of both the clinical and emotional issues that challenge all of us who have a loved one with cognitive impairment. What I find most commonly is that individuals and families feel helpless, scared, and uninformed. They are frequently handed a diagnosis with no further support. Although there’s a lot of information now available on the internet for people to read about dementia, family members still have a real need for practical advice to help them get through the day. 

For years I have provided information verbally to families during one-on-one coaching or therapy sessions and I always wanted something simple and approachable that I could hand them and say, “I understand that you are stressed and overwhelmed and it’s okay if you don’t remember everything I’m telling you to today. Take this book home and read a few pages each day and try some of the strategies I’ve suggested.” So many of the books about dementia are extremely depressing. I wanted to write something that was hopeful and helpful, something that made life better and more manageable. So, I decided to write I Care with my friend and colleague Kerry Mills to provide families with practical, research-based strategies that are easy to implement. 

I Care provides hope by explaining to the reader that by changing the way we react to and perceive dementia, we can support the person in having a meaningful life filled with things they enjoy. Individuals with dementia feel an unprecedented sense of loss of control as they try to make sense of what is going on around them, remember what they have forgotten, and carry out daily activities that were once very easy and now have become a struggle. Family members feel a loss for the person they once knew so well, who now seems to be very different in countless ways. In I Care we discuss simple techniques to address both of these types of loss. 

The best advice I can give care partners and families is very simple:

1. Give the people with dementia every possible opportunity to make choices and have control over their life. Every time we do something for them, we are essentially withholding opportunities to maintain their dignity from them. 
2.  Focus each and every day on the individuals’ capabilities that remain rather than on what is lost. 
3. Stopping trying to change people with dementia, just love them and accept them for who they are. 
4. Take care of yourself by getting help with care partnering, doing things you enjoy, and making your emotional and spiritual health a high priority. 

About the Author

Jennifer Brush, MA, CCC/SLP is an international speaker, consultant and researcher in the area of dementia care and the co-author of five books, including I Care: A handbook for care partner of people with dementia. I Care is a great resource to help families dealing with the daily struggles of caring for a loved one with dementia. To learn more visit www.BrushDevelopment.com

AlzAuthors: Laurel Garver, YA author of Almost There

Grandpa is Losing It: Teens and Dementia
by Laurel Garver

My new young adult novel Almost There focuses on the complications that arise for a teenager when a grandparent’s health problems blow one’s grand plans to bits. Dani is about to take a dream trip to Paris when her grandfather suffers a series of strokes that cause permanent brain damage—vascular dementia, the second most common type of dementia.

As health care costs continue to escalate, many families have to consider the very difficult choices that Dani’s family does—do you sell a grandparent’s home that’s too big, try to make special (cheaper) home care arrangements, or uproot the younger generation and move back in with grandpa? Thus some of my motivation in writing about grandparent issues was from to givekids who are dealing with this now a sense that they aren’t alone.

I also wanted to write about how family dynamics can shift drastically when a grandparent becomes impaired. When I was a teenager, I watched my rather nasty-tempered grandmother lose her memory—and interestingly, her nastiness as well. My mom’s best years with her mother where when grandma was most in decline. So I also wanted to explore how dementia can become an opportunity for adult children and teenage grandchildren to relate differently to someone who always held a lot of negative sway over a family.

When a tyrannical grandparent loses his or her ability to bully and instead becomes dependent, the power dynamics shift. The adult children in my story, Dani’s mother and uncle, begin to come into their own in a way they couldn’t when their father’s narcissism had dictated that Grace always be the scapegoat and David, the “golden child.” David finds the space to be more fully adult when not coddled, and Grace, when no longer blamed, begins to own her own desires, rather than always yield to others’ desires. Dementia for this family is a mixed blessing, enabling very damaged and damaging relationships to begin to move toward a better place. 

It was somewhat easier to write about my own experiences watching a grandparent’s decline become a blessing when I could filter that experience though fictional characters. Most teenagers won’t try to grab the reins and steer family actions and decisions like Dani does, but they might consider it. So I hope readers will learn from her mistakes and unwise attempts to be “helpful,” and do better at communicating with parents in situations like this. Crises like a grandparent’s dementia don’t have to be the end of the world. In fact, they can be a whole new beginning.

About the Author

Laurel Garver is a Philadelphia-based writer, editor, professor’s wife and mom to an arty teenager. An indie film enthusiast and incurable Anglophile, she enjoys reading, playing word games, singing in church choir, and taking long walks in Philly’s Fairmount Park.

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About Almost There

Seventeen-year-old Dani Deane is certain a magical trip to Paris will cure her widowed mother's depression. But when Dani’s tyrannical grandfather falls ill, they must go to rural Pennsylvania to deal with his hoarder horror of a house. In the midst of crisis, can Dani trust God to bring hope and healing?

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AlzAuthors: Gurney Williams - 5 Steps to Help Counter a Common Caregiving Side Effect: Guilt

 by Gurney Williams

If dementia is a thief, guilt is an accomplice.

My wife Linda’s disease stole years of our marriage until she was wholly dependent on a team of professionals in an assisted living facility. But caregiver guilt began to haunt me on the day we got her diagnosis.

A New York neurologist told us her symptoms—difficulty in writing and speaking—were consistent with a rare dementia. My hand-written notes from that meeting in the doctor’s cramped office were as jumbled as the thoughts in my mind. Long black lines slashed across the page, connecting medical words I didn’t understand, including the name of her disorder, “primary progressive aphasia.” A circle surrounded bold capital letters, “CAN’T KNOW.” That meant no one could be certain about how Linda’s disease would play out. But it was clear she would eventually need full-time help, possibly for the rest of her life.

I was numb, vulnerable, prey to guilt. Why aren’t you crying? Why do you keep taking notes as if you’re a reporter? What sort of husband are you?

For more than a year after that day, I put up a front with friends and family, assuring them that I was invincible.

But in the seven years of living at home with dementia, guilt lay in wait in the back of my brain, and regularly awakened me before dawn. I’m frustrated that she can’t understand me, and I can’t hide it and it hurts her…. I know I should blame the disease, but it’s hard to love her when she screams at me…. Some days all I can think about is how I want to get out of here…. When will this be over?

Sadness sapped away my spirit and strength. I lost weight and slipped into depression.

Research within the past few years indicates that depression itself spawns guilt. It’s linked with the risks of cardiovascular disease, diabetes and even dementia. The shadow of guilt probably hung even more over my three grown children, the research suggests. Many adult offspring of people with dementia are vulnerable to a double load of self-blame about tending the needs of their parents.

Mom wants me to visit her more often, but I can’t, or to be honest, it’s really hard to see her…. Other parents give more time to their children…. My boss says I’m distracted, less efficient.

I myself carry a residue of regret even today, years after Linda entered long-term care away from home. But I’ve learned to recognize it, remain committed to her wellbeing at a distance, and do what I can to stay healthy and strong myself as I think Linda would have wanted.

Here’s what my family has learned about dealing with caregiver guilt.

1. Talk about it. Telling someone close to you how you feel is a way to weaken guilt’s potency by forcing unspeakably dark secrets into the light of loving conversation.

2. Seek professional help if feelings of guilt or worthlessness are accompanied by other common symptoms of depression such as sleep or eating problems, fatigue or thoughts of suicide.

3. Find messages in your guilt. Use a judo principle to turn the power of self- sabotage against itself. I feel awful about taking respite time for myself could signal that you’re overdue for R&R.

4. Keep a journal or diary. Guilt can distort self-awareness. Occasional notes to yourself can remind you of the hard work you’ve done, and the best-you-can-do care you’ve provided. Write about feelings as well as challenges—guilt, gratitude, sadness, relief. Every month or so, read or skim what you’ve written to understand how the burden of caregiving changes over time.

5. Learn from others about common sources of guilt and how they have juggled the multiple tasks of caring for someone they love.

No one gets convicted in a court of law for unexpressed thoughts alone. But many caregivers show no mercy to themselves for their human limitations. If you’re one of them, ask yourself: What good does such guilt do for you and the people who need you?

This article first appeared on MariaShriver.com. 

About the Author

Gurney Williams is the father of Kimberly Williams-Paisley, actress and author of the New York Times best-selling book, Where the Light Gets In. It’s the story of how her family met the demands of her mother’s dementia.

AlzAuthors: Doreen Cox, Adventures in Mother-Sitting

Writing: a Cathartic Experience

by Doreen (Dody) Cox

I never planned on becoming my mother’s caregiver, nor, throughout the experience, considered writing a book. In a way, both just happened. I enjoyed my job as group counselor at an alternative school. It wasn’t easy to give up my salary and health benefits, but when my mom asked me to take leave, help her get settled somewhere, I felt a stirring in my gut to hang in there with her. Her mental and physical abilities were in a downward spiral because of vascular dementia—she needed me. In hindsight, I needed her, too. My soul was in its own state of flux. 

Adventures in Mother-Sitting is titled “Adventures” because dementia’s unpredictable nature took my mother and me on a tumultuous journey. Grief’s darkest emotions twisted my psyche upside down. Yet intermingled with terrifying, panicky instances, there were funny, endearing connections between us, even sweeter when she regressed into being my child. 

After she died, I dealt with grief by turning the experiences (noted in my journal) into a memoir for family and friends. I had to write—within me was a burning desire to feel clearheaded again, to purge the helplessness, hopelessness, despair, and guilt out of me. The rewards came daily. I’d had numerous meltdowns while caring for my mom. After each episode, I wanted out, though not because of her dementia-addled behavior. I wanted to escape deep-seated feelings of inadequacy, disappointment. Discovering the gems embedded in those episodes was restorative. We’d laughed a lot, and I had persevered, not been defeated by dementia’s challenges. 

Getting Adventures written honored my mother’s long-held wish, for me to write a book. Afterward, my goal was merely to get through each day—it had only been six months since her death. But an unexpected encounter with a friend who had just published his memoir infused me with purpose: “Tell your story, Dody. Give back by sharing your experience.” My friend was a hospice chaplain. 

Grief is a powerful force with which to reckon; its fierceness hit me hard after the memoir was published. Sisters and friends helped me through the darker days. For several years, I couldn’t look at my memoir, relive the experience. Family, friends, and readers agreed that it was good— so, I let it be. Their feedback validated reasons to publish: my story did help others cope with their feelings of inadequacy and guilt, and their comments eased my own lingering bout with unwanted emotions. 

Writing became a passion. While writing a short story about endings, titled A Sacred Journey, I learned this: to hone one’s writing skills, be open to feedback from beta readers and other authors. It was exhilarating to feel my short story come alive as I refined passages based on readers’ suggestions. 

Thoughts about Adventures began to niggle me (four years later). Reviews confirmed that the story engaged readers well enough, but one review in particular offered suggestions about the writing itself. When I perused the memoir, I found aspects that didn’t measure up to the quality I wanted it to have. A new author friend’s encouragement fired up my enthusiasm.

Doing a revision of Adventures was one of the more meaningful experiences of my life. It was intensely cathartic—I relived every experience I’d had with my mom. Rewriting segments tumbled me back into grief, yet re-experiencing the sweetness embedded in our final years together made the effort worthwhile. 

As many know, coping with a loved one’s dementia is extraordinarily challenging, even life-altering. My experience was rewarding in so many ways, yet I’d never have made it without support from family, friends, professional helpers, and hospice staff.  

Connect with Doreen Cox

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AlzAuthors: Mum Has Dementia

by N.

I originally set out to write my blog Mum Has Dementia after recounting a story about Mum getting stuck in the bath - it was a lighthearted chat with my sister, overheard by an acquaintance with a background in social media, who suggested blogging.

I'm a doctor (GP / family medicine depending on where you are in the world) with a busy medical practice, and have always wanted to write, indeed, have always been writing, usually stories about the people I meet through work and their increasingly complicated lives. At the time of the blogging suggestion, I'd entered a writing competition with the British Medical Journal, and was fortunate to be shortlisted and published on their website.

Suddenly it seemed I had an opportunity to write about something that was very close to home and to share my writing in a way that may be genuinely constructive - I felt that if only one person out there read my blog and felt less alone then it would be worth it.

My blog is about my mum and her struggle with dementia (or, more accurately, my struggle with her dementia). If you have at some point searched the internet for 'parents with dementia', 'grandparent with dementia' or 'close acquaintance / family friend / some bloke I know with dementia' and found little that felt relevant, then my blog might be the place for you. If you’ve typed 'My mum is demented' into a search engine and meant it in the literal sense (as opposed to your mum having just had a massive go at you because you hadn’t tidied your room / told her she looked nice / taken her shopping) then there may be something useful for you here. 

The dearth of relevant, accessible internet chat about dementia seems totally out of keeping with the increased public recognition of the disease. Unless I’m just not looking hard enough – but who wants to look hard for this stuff when you’ve got so much else to worry about on a daily basis. I - vainly - just want to hear about somebody who is like me and how they are coping. I don’t want a spiritual experience; a cosy reflection on Pastor John’s sermon and how it was loosely relevant to Alzheimer’s (believe me – I just found one of those). I don’t want to be preached to or have the virtues of caring for someone with Alzheimer’s extolled to me by an evangelist. I just want a clear, perspective on how it feels to watch your parent lose their grip on reality without losing yours. And an acknowledgement that there are tiny moments of comedy to be found lurking in the mire of Alzheimer’s disease.

My sense of humour is already pretty dark. Being a doctor helps me understand some of the mechanics of the diseased brain but leaves me pretty helpless in the face of application forms for Personal Independence Payments. The hard outer shell that one develops as a practicing doctor, toughened by years of breaking bad news and watching bleak life stories unfold, has enabled me to find comedy in really quite inappropriate scenarios and believe me, that is the most useful skill I have in facing this disease.

I am an anonymous blogger so no headshot I'm afraid. The reasons for this are two-fold. Firstly my parents live nearby and my father, despite being a very sociable, gregarious man, likes to keep his private life private. I think he would struggle with me documenting details about mum's illness and broadcasting them to the world.

The second reason is that some of the comments I make in my blog do not sit particularly comfortably with my role as a compassionate family doctor - I do not want my patients to feel that my professional capabilities are compromised or for them to know details about my life.

I have found the anonymity to be very liberating but it does provide barriers to publicising one's work. What I do know is that those who have responded positively to my blog have done so without any sense of moral obligation because they are 'my friend' - very few of my friends know about it. 

As a result, I can be completely honest, sometimes brutally so. This is one of the key issues in dealing with a diagnosis of Alzheimer's in the family - how honest can we be with ourselves and each other? How do we acknowledge our darker thoughts and stop them overwhelming us. The answer, trite as it may seem, is through laughter and sharing. If we laugh at a problem we neutralise it and if we share our stories we reduce the sense of isolation. This is where initiatives such as the AlzAuthors blog are so important.

Please visit Mum Has Dementia here.

AlzAuthors: Charles Schoenfeld, A Funny Thing Happened On My Way to the Dementia Ward - Memoir of a Male CNA

by Charles Schoenfeld

Few men are caregivers in the traditional sense. For most of us, I believe, it’s an uncomfortable suit we would rather not wear. Our mantra, “Let the Women Handle It,” hangs on our wall while we keep busy with lawns to mow and engines to tune.

But what if a man saw his mother threatened, her frailties preyed upon? Witnessed her dignity being stripped away, her memory emptied? What if a man stared into the face of a monster? Alzheimer’s! What would he do then?

At age fifty-six I retired from a twenty-seven year career with United Parcel Service, swallowed a mind boggling pay cut, and signed up for CNA (Certified Nursing Assistant) training. There were nine of us in the class. I was the only male, the only one without a cell phone—and the only one without a hickey on my neck. Have you ever heard the expression, ‘Life begins at the end of your comfort zone?’ Whoever said that knew what they were talking about.

Yes, the monster took what he wanted. But there were times, fun filled, joyous

times when he was pushed aside. His eyes dimmed, fever broken, and his relentless mission, ironically forgotten. Those were the times that gave me reason to write A Funny Thing Happened on My Way to the Dementia Ward--Memoir of a Male CNA. To let people know the stigmas attached to mental illness are wrong and unfair. I wanted to share how much those living with Alzheimer’s still have to give, certainly how much they gave, and meant to me.

Since the release of my book I’ve been called many things: A hero. Someone special. A gifted story teller. None of those apply. I am, quite simply, a man and son, with a story I needed to tell. For my mother, and for all the mothers I tried to defend.

The success of my book has produced speaking invitations from a variety of health care providers and facilities. People identify with the thoughts of a common man while I remind them of a belief held by Mother Teresa : “Kindness is the only language that everyone understands.”

Abraham Lincoln referred to war veterans as “Those who have borne the battle.” A phrase care givers can easily relate to. As someone who has served on both fields, I have been doubly honored.

A reviewer from Lake Ozark, MO, Jen Wilson wrote, “I did not want this book to end.” Looking back with a gentle sadness that may never leave me I’ve come to the realization, neither did I.

Connect with Charles Schoenfeld 

Purchase A Funny Thing Happened on My Way to the Dementia Ward--Memoir of a Male CNA on Amazon or direct from the author.

AlzAuthors: Mary Cail, The All-Weather Friend

by Mary Cail

I’m a long-distance caregiver to my parents, who suffer from memory loss and multiple other health problems. I know every bump and bend in the 300 miles between their house and mine. I manage every part of their lives and the medically-trained staff they need, around the clock. I’m losing them in a very different way than I lost my husband. 

I was not a caregiver to Wayne, not in the sense of someone who tends to a person with Alzheimer’s disease. My husband didn’t have dementia; he had a rare brain tumor, growing like a pointed tool into his brain stem. The nine-hour surgery to remove it seemed to remove, as well, his sense of self and place in the world. 

No amount of care I could give made up for this sudden loss. He felt bewildered and scared. I wasn’t strong enough to hold him against the undertow of his dizziness, confusion, depression, insomnia, and failed confidence. But I tried. 

He took his own life one February evening almost 14 years ago, assembling his means as I stood at our kitchen sink, chopping onions and tomatoes for the spaghetti we shared every Sunday night. When he didn’t come home, I left the pot on a cold stove and drove to the hospital where he worked as a physician—where he’d earned a reputation for his brilliant mind and his decency. 

A short while later I was screaming, crouched on the linoleum tiles of a back hallway, holding my head in my hands, unable to stop the screams. He was in his office, dead. 

I’d recently suffered a miscarriage, after five years of infertility treatments. In the wake of his death I felt as shattered as an empty glass dropped on a stone floor. Thus began my years of learning to live a different life. 

Dreams of the family I had imagined—the school conferences, piano lessons, carpools and ponies—disintegrated like the white ash of a dying fire. My friends had no idea what to say. Some cried with me. One crawled into my bed the nights of that first terrible week and pressed her body against mine. Another said simply, “Come for dinner. Come everyday.” 

My friends wanted to help after my husband’s death, but they didn’t know whether to talk about what had happened or pretend nothing had changed. They didn’t know whether to give advice, sit with me in silence, or ask questions.  

The letters of sympathy, if unsure and rambling, were poignantly sincere. I couldn’t explain what I was feeling and needed from them; it was too huge and raw and incomprehensible—I still cannot talk or write easily about suicide. 

I could only accept whatever they offered, whether it was an invitation to a funny play, a basketball game, or a tour of historic homes. I never allowed myself to say no; withdrawing, I knew, would prolong the grief. At night I cried until my eyes were almost swollen shut. I yelled in anger until the light fixtures rattled at what my husband had done. 

I realized unless I could step outside myself and take care, in some way, of others, I would not survive. My life felt unendurable, tormented, disconnected. I could only reach out to people who were like me, I thought, and I looked for them in nursing homes. 

The oldest were stooped and wrinkled, confined to chairs and beds. No one listened to the stories they could still tell. In my affinity with their pain and loneliness, I found a measure of comfort. 

This experience led me to the younger group of caregivers and patients in early-stage dementia, many pulled, as I was, outside the social mainstream, grappling with a heartbreaking situation they never anticipated. 

During those months and years, my dream of a family evolved slowly into a new dream, one of a concept: the All-Weather Friend, not the fair-weather friend we dread—the one who disappears or worse, who gossips, but the friend who’s there for us when we need her most and is empowered with an understanding of how best to help. Working with caregivers years before I became one myself, I wrote a book to help people outside this situation feel comfortable and be comforting: a book to help friends stay close. It isn’t as hard as people imagine, and small words and acts of kindness can make a big difference. 

One morning during “those years,” as I call them now, I was in a country store near where I live. It’s a dark, cool place with a concrete floor, where chicken feed, handmade Christmas ornaments, eggs and mousetraps are within easy reach.

I had counted out the change for a package of crackers. As I turned to go, the lady behind the counter said, “I’m so sorry,” and her voice dropped off in disconcerted silence. 

I looked into her face for a few seconds and saw nothing less than a deep well of compassion in her faded blue eyes. In the set of her features, I read the words she could not bring to her lips. 

“For everything,” she finally finished. And it was enough.

About the Author

Mary Cail, PhD, is the founder of The All-Weather Friend and author of Alzheimer’s: A Crash Course for Friends and Relatives. Visit her website:  

Mary Cail, Ph.D. ⎮ The All-Weather Friend®.

AlzAuthors: Carole Brecht, The Artistry of Caregiving

Who Is a Caregiver?

by Carole Brecht 
 

I started caring for my Mom full-time in 2009 after I closed

my art gallery/custom frame shop. I had planned to secure a job within six months, but my career path took a turn when my Mom was diagnosed with Alzheimer’s Disease. My Dad was still working full-time and I lived nearby, so it seemed fitting that I would be taking on the role of Mom’s Caregiver. For a long time, I didn’t know the word “Caregiver” or its meaning. All I knew was that I was the daughter stepping up to help my parents in their senior years. I’ve always been close to my parents and would do anything for them if they called on me. To this day, I am caring for my Dad throughout the work week. 

Initially, Mom was on a slow decline, but when she took a fall around the holidays that year and broke her arm, everything changed. She was heavily medicated with pain meds and her mental state began to change drastically. What I witnessed over the next several years of the ravages of this awful disease was horrific and scary. She looked exactly the same, but her aggressive personality changes were huge. At the end of her life, in September 2014, I made a firm decision to write a book for those going through their own Caregiving journeys and began writing The Artistry of Caregiving. All I could think about was helping someone in the same shoes to let them know they were not alone, but very much understood, appreciated and supported. Mom died on November 23, 2014. 

My inspiring book includes several of my Caregiver Zentangle Inspired Art designs which affirm and support Caregivers. The book includes 33 letters written to the readers to help them to navigate the emotional journey of caring for another. It’s meant to be read on the go, in no particular order. If a reader can’t focus or doesn’t have time to read, the images throughout the book will inspire. The paperback edition will be out in July on Amazon. Whether you are at the beginning, middle or end of your journey, this book is written for you. Here is an excerpt: 

Letter 2

Dear Captain,

You are the captain of the USS Caregiver, and you are in command of a host of people who are helping you sail the Caregiving seas. You make decisions every day that are correct to get to your destination, which is tomorrow and then the next day and the next. You weather all kinds of conditions and you do it with class and joy. Who could ask for a better captain than you? 

Who is a Caregiver? 

Caregivers come in different ages, both boys and girls, men

and women, teens, young adults and seniors and typically that person has a huge heart. There are Caregivers/Carers all over the world and we are the most diverse population possible! Though my Caregiver experience is based on my relationship caring for my parents in their senior years, the concept of caring for another follows us throughout our lives. We learn to love and to care for others from the time we’re toddlers. People of all ages can read this book and benefit from the emotional support through my words and my Zentangle Inspired Art that affirms and supports Caregivers. My book is your companion, letting you know you are understood and not alone. I hope you refer to The Artistry of Caregiving throughout your lifetime and you share it with others. May my book bless you and comfort you as you navigate the emotional journey of caring for another.

CONTACT INFO:
cbrecht4@gmail.com
Amazon: The Artistry of Caregiving, Letter To Inspire Your Caregiver Journey
TangledArtBoutique.com
Facebook.com/thesandwichwoman
SanGenBlog
Twitter: @SanGenWoman
Instagram: Carole Brecht @San_Gen_Woman
TheSandwichWoman.com
 

AlzAuthors: Vanessa Luther, A Life Stolen: My Father's Journey Through Alzheimer's

by Vanessa Luther

My father joined the Air Force in 1950 during the Korean War where he trained as an airplane mechanic. After his tour of duty, he returned to his home in Miami and married my mother after only three months of courtship. He worked during the day and attended barber school at night, eventually owning several barber shops. My parents moved to Georgia after retirement to be near their children and grandchildren. Although my dad enjoyed doing yard work and watching sports, his family always came first. He was the most loving and compassionate person I had ever known. His generosity knew no bounds.

At first, I noticed subtle changes regarding his cognition: hiding personal objects, forgetting to pay bills, losing the ability to fix basic things. Over time, the changes grew more serious. He no longer felt comfortable driving alone for fear of getting lost. His overall mood fell prey to serious depression and his anxiety caused extreme agitation. Medical problems, including triple bypass surgery, also occurred. My father started falling during the night, requiring hospitalization on several occasions. His condition worsened every day.

As his primary caregiver, I found myself thrust into a world about which I knew very little -- the world of dementia. Feeling bewildered and alone, the incredible weight on my shoulders was almost too much to bear. Knowing what to expect from day to day became a mystery. I didn’t always do the right thing or say the correct words. Looking back, I may not have always made the right decisions. Clearly in over my head, my choices were few and far between. I was a daughter that woke up one day to find herself caring for her father, our relationship roles now reversed.

I remember so well the day he hit rock bottom. During a Sundowner’s episode, my father committed the unspeakable which forced my mother to call 911. I sadly watched him taken away that night, never to return home again. The authorities sent him to a psychiatric hospital for evaluation after which he was moved into a memory care unit for his safety as well as my mother’s. My father’s condition continued to deteriorate. He suffered more agitation, a fractured hip and complications from surgery and medications.

On October 22, 2011, my father lost his battle with Alzheimer’s. He endured a level of suffering to which no human should ever be subjected. Alzheimer’s took my dad from me, little by little, until he was simply a shell of the man I once knew. This vile disease stole everything, reducing him to a stranger. Then when nothing was left, it stole his life.

My ultimate dream is for a day when no more Alzheimer’s or dementia of any kind exist, when people will be able to live with their precious memories intact until the very end. Until that wondrous day, my hope is that our journey helps to bring awareness to this terrible illness. The more we as a society learn about this disease, the better we’ll be able to handle Alzheimer’s. Everyone afflicted with it deserves a fighting chance. I hope that our story will in some way help others affected by this tragic ailment, whether in providing helpful information or simply words of encouragement. May our countless tears be the fortitude that helps others deal with the adversity from this devastating disease. 

About the Author 

Vanessa Luther is the author of A Life Stolen: My Father’s Journey Through Alzheimer’s, the true account of the devastating, but inspiring journey that she and her father travelled through Alzheimer’s. She grew up in Hialeah, Florida and later moved to Pensacola, where she met and married her husband. After earning her Bachelor’s degree in Computer Science, she moved to Atlanta, Georgia where she worked as a Consulting Software Engineer for 17 years. She then put her career on hold to raise her three sons and eventually became the primary caregiver for both of her parents. She currently lives in Lawrenceville, Georgia with her husband, three sons and their dog. 

Purchase A Life Stolen: My Father's Journey Through Alzheimer's

AlzAuthors: Candace Minor Comstock, Remember Joan

by Candace Minor Comstock

In the winter of 2007, I found myself with a rare commodity, time. Major change had come my way as my role of mother had altered, and my role of daughter had ceased. My daughter got married, and my mother died of Alzheimer’s disease within two months of each other. Joy and sorrow intertwined. That winter, with this newfound time, I started something I had often talked about. I began to write a book. My wonderful husband bought me a laptop, and I typed a lot. I’m an educator, fortunate to work less days of the year than most. It took four years of winter breaks, spring breaks, summers, fall breaks, and weekends to accomplish my story.

Remember Joan is the account of a daughter beside her mother as they face a life disrupted by Alzheimer’s disease. The book begins with a wedding and ends with a funeral. Embedded between these two ceremonial rituals are two tales, the story of Joan’s decline and death due to Alzheimer’s and the story of my life as the daughter of Joan. In the end, this book is not only a tribute to Joan’s life, but a tribute to all who try to create a celebrated life with the people that surround them.

I took detailed notes throughout my mother’s disease. The trek across the Alzheimer’s experience is thorough. The reader will enter the lunacy and loss, the practical and painful, gaining insight and specifics through each stage. It’s not completely gloomy as there are often many funny tales to tell surrounding Alzheimer’s. In fact, humor, instilled by Joan, has always been the family’s favorite coping strategy when damage control was necessary. The decline in the later stages was tough, and folks close to Joan were challenged in ways never imagined. Oddly enough though, I found the final days of my mother’s life as beautiful as something so sad could be.

To offer the reader a break from the intensity of disease discourse, the Alzheimer’s chapters

alternate with stories from the past of the people that make up a family. Both constructive and noxious relationships are examined. I wanted people to know pre-Alzheimer’s Joan, my mother who encouraged feminism, excelled in the world of wit, and smiled at all who crossed her path. It’s noteworthy to meet my sexist father who broke the rules, often for enhanced amusement, and my two big brothers, the hippie and the scientist. I loved writing about my husband; our love story is enchanting and gave me strength. My kids, both the biological and the school children, provided some awesome narratives. And the power of best girlfriends is celebrated too. By writing this book, I could record my wonderfully warped life and introduce readers to the characters that filled my world. I could to the best of my ability illustrate the passage of each stage in this terrible disease. But most importantly, I could honor the woman I called Mom.

“Throughout the book, Comstock returns to the theme of community, giving credit and gratitude to the friends and family members who helped with her mom’s care and supported Comstock through the process, and these are among the memoir’s strongest moments… [It is] an affectionate portrait of a damaged but enduring family that has suffered a profound loss but continues to adapt, survive and move forward.” --Kirkus Reviews

#AlzAuthors: Pippa Kelly, Dementia Writer & Advocate

by Pippa Kelly

The first article I ever wrote about my mum’s dementia appeared in 2006 in a national newspaper here in the UK. It recounts the terrible decision my siblings and I took to sell our parents’ house and put mum in a nursing home when her condition – and subsequent refusal to move – threatened not only her health but that of our dad, who had become very frail.

What strikes me now, when I read my own words, is how raw it all was. I can hear the confusion in my writer’s voice, and the seemingly endless grief that comes when you love someone with dementia. But most of all I hear, and re-live, my guilt. As I wrote, I kept looking back and seeing mum’s increasingly erratic behaviour for what it was (a symptom of her illness) not what I’d thought it was (her strong and not always easy character becoming more extreme with old age). 

It was a one-off piece and I returned to writing on other topics for national papers until, two years after mum died in 2012, I launched my website. I wasn’t sure what it should focus on and, to give myself scope, I set up three tabs – three hats for myself – of Writer, Campaigner, Mum.

I used Twitter to spread the word about my blogs and within months it became clear that the ones that attracted the most comments and attention from my growing readership were those on dementia and its social, emotional and psychological impact. Much to my surprise I was fast becoming known as a specialist dementia blogger (I even won a major award). I discovered that the more I researched and wrote about the condition, the more I began to appreciate the complexity of its effects, not just on those who have it and their immediate family and friends, but on wider society. 

My newfound knowledge came too late for it to be of use to my mum, but freed from the emotions I’d experienced as she succumbed to dementia, I was able to combine it with my understanding of what others were going through to connect with them, gain their trust and tell their stories. 

Since then I’ve met many people who have dementia and even more who love and care for someone who does. I always walk away from these encounters with a renewed sense of hope in humankind. The individuals share a common desire: to spread the word about what dementia is and to show that, though a diagnosis is a shock, it can also be a relief because you know what you are dealing with – an illness, which though incurable, can be managed for a while with practical coping mechanisms and support from friends, loved ones and the wider community.

As I write, a primetime TV programme featuring a couple I have met is being aired on the BBC. Over the course of almost two years, Chris Roberts and his wife Jayne allowed CCTV cameras into their house in North Wales and used video diaries to record their daily lives coping with Chris’s Alzheimer’s. He was diagnosed five years ago, aged just 50.

The Panorama documentary is searingly honest and, at times, painful to watch as Chris’s condition worsens and Jayne struggles to come to terms with the fact that she is losing him. She knows they both need some respite but says she can’t risk Chris going into a care home for a week “and me not wanting him back”. Her candour is breath-taking. I know, from experience, how much it will help others in the same situation – as they hear what she has to say, witness her sadness, see Chris’s frustration – to know that they are not alone.

Connecting people, sharing stories, gathering information is what I’m about. I’m a journalist, after all. But to do so on a topic this close to my heart, has changed my life. That sounds melodramatic, especially coming from a buttoned-up Brit, but it’s true. Though unpaid, my dementia blogging is by far the most rewarding job of my 33 years as a professional writer, and I’m delighted to contribute to the #AlzAuthors blogI spend hours talking to people who have set up enterprises, charities and clubs (such as the wonderful Healthy Living Club in south London) to enhance the lives of those with dementia. “Doesn’t it depress you,” friends sometimes ask, “writing constantly about such an awful thing?”

The answer is no, quite the reverse. Don’t get me wrong. Dementia is cruel, its effects are ugly, and sometimes my interviews reduce me to tears. A few days after her husband died from Lewy Body dementia in 2015, 65-year-old Jan Inman rang to tell me her story. Her love for Ron was humbling. She told me that when she nursed him in the last three months of his life, she “fell in love with him all over again”. Though we’ve never met, Jan and I exchange news on Facebook and, strange as it sounds, we count each other as friends. 

I have made countless friendships (real-life and online) through my dementia writing, nearly all with people affected in some way by this remorseless condition, several are Americans. I value them highly; we know the dark places in the depths of our souls that exposure to a loved one with dementia unearths. We understand the joy of living for the moment and hearing someone we thought we’d lost utter a word, or giggle or sing. 

I often tell others in what I call my dementia community that they “do” – they roll up their sleeves, put together business plans, raise funds and make a difference. I merely observe and then write. It’s my lot in life, I suppose. If, by tapping out a few words I can join some dots, make one or two connections, reach out to lonely carers and frightened individuals living with dementia and help them feel less alone, I’ll have achieved more than I ever dreamed I would. 

About the Author

Pippa Kelly is an award-winning blogger and writer on elderly care and dementia based in London http://pippakelly.co.uk/. Her short stories and articles have appeared in numerous UK national newspapers and magazines including The Times, The Sunday Express, The Sunday Telegraph, The London Evening Standard, The Spectator, The Guardian, Mslexia. She also blogs for the Huffington Postand mariashriver.com and you can follow her on Twitter and Facebook.