AlzAuthors: Loretta Woodward Veney - Being My Mom's Mom

by Loretta Woodward  Veney

I decided to write my book Being My Mom's Mom because I felt so helpless when my Mom was diagnosed in 2006 at the age of 77. I was stunned that at such a young age she became the first female in our family to be diagnosed with dementia, especially given the longevity of my grandparents and particularly my great grandmother who lived to be 106 with both her quick wit and her memory intact. 

I had no preparations in place for my Mom because she had no health problems at all. I thought she’d live alone until she was 100 like my great grandmother. I had no written wishes about where Mom wanted to live (aside from not wanting to live with her kids). I didn’t even know where to seek help though I live less than 3 miles from my county’s Department of Aging. I wanted the book to help other adult children prepare earlier for conversations with their parents about their wishes for long-term and end of life care. 

The response to my book has exceeded my wildest dreams. I had expected to give a few local talks to churches, book clubs and support groups. But a few months after my book was published in 2013 I met a woman from Arden Courts Memory Care Communities, (a subsidiary of Manor Care) and gave her a copy of my book. That eventually led to my becoming a speaker for Arden Courts and them purchasing more than 1,000 copies of my book. To date I’ve given more than 175 presentations to Arden Courts Communities across the country. I’ve also given many presentations for the Alzheimer’s Association throughout DC, MD, VA and WVA. Book Clubs, support groups and church groups have also hosted me for speeches and book signings. Mom would be proud if she understood. 

The book has absolutely given me peace and it’s been healing for me to meet others in the same situation! From the first presentation I gave, I could tell I was giving others hope by letting them know they aren’t alone in this fight. 

They’ve also given me hope. The notes and emails from those who have heard me speak have kept me going even on the darkest days, like when my Mom didn’t remember me for the first time on my 55th birthday. 

Though I’ve spoken to very large crowds, I’d much rather meet people in small groups where we can really talk and share our stories. The book has taken me to large cities, to small towns, and even to a few farms, because no matter who you are, or how much money you have, no one is immune from this disease. Alzheimer’s disease unites us all in this fight.

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AlzAuthors: R.J. Thesman, How a Trilogy about Alzheimer’s Brings Hope

by RJ Thesman

"We have to park here,” Mom said, as I drove her to the grocery store. 

“Why here? Why in this particular spot?” 

“Because…when we come out, we’ll know where the car is.” 

That was my first clue that Mom’s forgetfulness had merged into something more serious. She always parked her car in the same spot at the grocery store so she could find it when she finished shopping.

“What happens, Mom, if that parking spot is already taken?”

“I just go home and forget about groceries that day.” 

Several months later, we heard the dreaded prognosis of Alzheimer’s disease and our lives changed. We knew what to expect, because Dad suffered through ten years of trauma-induced dementia before he passed away. Mom, his caregiver throughout that Long Goodbye, now needed to receive care.

As I thought about my parents and their experiences through this dreaded disease, the germ of an idea began to form. What if a woman minister had the same experience? What if she was diagnosed with early-onset Alzheimer’s and had to resign from her pastorate? What would be her greatest struggle? 

The story began to evolve from a base of pure creativity and my need to grieve. I started typing and listening to my main character’s voice. Reverend G whispered ideas and revealed to me her greatest fear. 

As a minister, what happens if I forget God?

Within six months, I had completed “The Unraveling of Reverend G,” but I knew I wasn’t finished with her story. As my mother’s Alzheimer’s journey continued, so did the story of this gutsy little minister who honestly prayed, “Oh God, oh God, I can’t stand it.”

 
CrossRiver Media sent me a contract for the book and soon I was scheduling book signings and speaking events, talking about Alzheimer’s and caregiving. I tried to share hope with my audience and at the same time, kept writing the second book. 

Two years later, I finished “Intermission for Reverend G” and then a year after that, “Final Grace for Reverend G.” CrossRiver Media published the entire trilogy and urged me to continue to reach out to caregivers. 

I started a group on Facebook, “Sometimes They Forget.” With the wide reach of the internet, members joined and told their stories. Though my heart broke with each post, I knew Reverend G and I could use our faith to encourage these caregivers who needed just one nugget of hope to make it through another day. 

The comments on my blog, on the Facebook group and on my monthly newsletters confirm that caregivers everywhere need to find hope. When I teach at writers conferences and as I speak in various venues, I meet people everywhere who know someone with Alzheimer’s. The Reverend G books help them realize they are not alone in the journey and somehow – they will make it through one more day. 

About the Author

RJ Thesman has been a writer since she flipped open her Red Chief tablet and scribbled her first story. She has over 700 publishing credits in various magazines and her work is included in 13 compilations, including 5 Chicken Soup books. Besides the Reverend G trilogy, she has also published 4 nonfiction books. As a Certified Life Coach, Thesman enjoys teaching writing workshops and coaching writers to find their personal writing plan. Thesman lives in the heartland of Kansas with her adult son and an elderly cat. 

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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.  

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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.