Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.

Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Wednesday, October 17, 2018

Meet Jane Mullins, author of "Finding the Light in Dementia"

Reposted with permission from

By Jane Mullins Ph.D., from Cardiff, U.K.

I am a nurse who has worked with people who have dementia for over 25 years. This has included nursing in a care home where I have helped support people during their transition from home. This has included finding out about their life stories and getting to know them, working together in understanding their past, identifying their present needs and future wishes. I have also cared for people who have dementia in hospital and seen the impact that an admission can have on the person and their dementia. Here, I recognised the importance of involving families and keeping familiar meaningful objects with them when in unfamiliar places. My role as a nurse in memory clinics included supporting people and caring for them during their diagnosis of dementia. This involved offering them and their families one to one counselling, practical advice and support. It also gave me the opportunity to understand the real concerns and issues that people who have dementia and their families experience. As well as my practice experience, my Ph.D.; a Suitcase of Memories, involved creating a multisensory reminiscence approach to counselling and provided therapeutic support to people living with dementia and their partners.

By listening to and observing people who have dementia and their loved ones, I have learnt so much about how it can affect them and have uncovered common features that may help. For example, many caregivers would be upset when struggling to communicate with their loved ones and not understand why they may behave differently over time.

By drawing from their experiences and up to date research, I set out to write a monthly column for a local newsletter; the Mumbles Times and a national newspaper; the Mature Times. I wrote every month about different aspects of how dementia can affect people and considered ways that would help them, based on my knowledge and up to date research. I gained much positive feedback as the months went by and a number of readers suggested I put the columns together into a book – Hence, Finding the Light in Dementia, a Guide for Families, Friends and Caregiverswas born. I feel that Finding the Light in Dementiais authentic and reflects my approach to caregiving as it also includes the experiences of the many people I have listened to with their stories interspersed throughout. Finding the Light in Dementia, a Guide for Families, Friends and Caregivershelps all affected by dementia by giving confidence to care. It contributes to breaking down the stigma of the dementia by explaining how a person experiences the condition and shows that by adopting positive approaches to care and the environment, the negative effects of the condition can be reduced considerably.

Amazon review

This is an excellent guide for anyone who has a family member or friend suffering with dementia. Really helpful advice & explanations on why certain behaviours happen & how to deal / cope with them. The best bit about this book is it is easy to read - short chapters & clearly written with very little jargon, so it is very accessible. It's also helpful to have sections for making notes about your own circumstances, the idea being that you have the day to day information to take to a doctor if needed. The book takes you through from initial diagnosis all the way to making the decision to look at residential care, and it truly does "find the light" in all stages of that journey. It is reassuring for someone who has little or no experience with dementia to know that as a carer they are not alone, as quotes & comments from real life people are included throughout. It is a very positive book & has real tips & techniques for dealing with the situation of having a loved one suffering from such a cruel disease. Sandra, Daughter


Dr. Jane M. Mullins is a dementia nurse consultant who has devoted over 25 years to the study and practice of dementia care. Through listening to and supporting people and their families during their diagnosis in memory clinics, caring for them in hospital and in care homes, she has helped throughout all of the stages of their condition.

Jane has uncovered certain common features that may help caregivers and the people they care for find better ways of coping. Her practice experience is backed up by expert knowledge gained from attending conferences, continuing education, lecturing and keeping up to date with research, as well as studying for her Ph.D. which explores multisensory ways of communicating and connecting.

Wednesday, October 10, 2018

Meet Susan Soesbe author of "Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof"

Reposted with permission from

By Susan Soesbe

How do you write an honest story about a real-life tragedy without being so tedious and somber that nobody wants to read it? This was my challenge in writing Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof.

When Mom was in her seventies, the idea that she had dementia sort of came and went, like back pain. My suspicions would flare up when she did something out of character, like purchase an expensive juicer, though she had not one shred of interest in healthy eating. But then, she was still able to drive, email, and play Rummikub, a math game.

However, the dementia eventually became obvious. My sister and I convinced Mom to move to an assisted living facility, and then to a memory care unit. Even there, she was constantly in danger of falling. We were able to move her home to live with our two families. Hence, the title of my book.

I started to write then so I could share the knowledge I was gaining. I had thought Alzheimer’s Disease was just memory loss. Now I was learning it involved a loss of executive function, personality changes, hallucinations, and loss of bladder and bowel control. If I had known this before, I thought, I would have shown more concern for caregivers. I would have been better prepared myself.

I knew my story would benefit others, but how could I make it readable?

The recently-launched online publishing platform Medium challenged writers to craft “stories.” So I started to work on little scenes describing what was happening under our amazingly large roof. I later assembled these stories and expanded on them to make a full-length memoir.

This technique seems to have worked. Readers have told me Bringing Mom Home is “a page turner.” They thank me for expressing the real-life difficulties of caregiving, and the mixed feelings they have toward their parent or spouse. I’ve given them permission to admit they don’t always feel loving, that they’re sometimes angry, resentful and hurt. They seem relieved to read that someone else has blown it, failed to really love a loved one, and experienced ambivalence.

Not everybody caring for a person with dementia has always agreed with their loved one. But now they can’t have discussions anymore. They can’t disagree or express disapproval. A person with Alzheimer’s Disease is incapable of changing. For example, my mother was prejudiced against people of color. Dementia made her lose her filter. Sometimes she made hurtful remarks, so I learned to ignore and redirect, and to apologize for her. That’s another thing you don’t know till you’ve experienced it yourself.

Readers have told me they appreciate the book’s eternal perspective. I’m a Christian, and sort of a Bible nerd. The beliefs I express in the story are 100% my own, and they deeply informed my approach to caring for Mom. God answered my prayers specifically and, perhaps more importantly, changed my heart. I had been in the habit of judging my mother, holding her at arm’s length, and hoping my good deeds would take the place of the love I didn't really feel. God helped me eventually to love her from my heart. I want caregivers to hope that good can come even in their difficulties. I want them to see their lives in light of eternity, because the day-to-day is so hard.

Short Bio:

Susan Soesbe grew up all over the US, as her father's military career took the family from North Carolina to California, to Missouri and back to California again. Mr. Flower, her sixth grade teacher, stoked the creative fire in the entire class using "ten minutes of talking," improvs, and blank books in which students were encouraged to write stories whenever they felt like it.

Susan married a man from Brooklyn, and homeschooled their four children for twenty-five years in Northern New Jersey. Following a divorce, she returned to California to help her sister care for their mother, who had been busy developing dementia when they weren't looking. It forced Susan to rethink everything. This journey is detailed in her first book, Bringing Mom Home: How Two Sisters Moved Their Mother Out of Assisted Living to Care For Her Under One Amazingly Large Roof. Her goal is to encourage caregivers of children and elderly people by reminding them that their work has eternal significance.

Susan writes from a Christian perspective and is interested in seeing how the Bible connects to all areas of life. She is based in New Jersey and Pennsylvania and is pursuing a career as a teacher of English to speakers of other languages.

Social media links

Wednesday, September 26, 2018

Meet Frank Morelli, author of "No Sad Songs"

Reposted with permission from

By Frank Morelli

The concept for No Sad Songs had been building since my high school years. Back then, I was living a pretty charmed life. I went to school, played sports, and lived on a nice, suburban street. My life was about as “normal” as any teenage life could be.

Then we started noticing changes in my grandfather. Little things. Like, he’d forget to send birthday cards which he’d been known to send early, or he’d lose his keys or forget an appointment. Then it seemed like we went to sleep one night and woke up the next morning and my grandfather was this completely different person; one who needed assistance just to get through the daily tasks of living.

That assistance came in the form of my father, a man who worked full time and dedicated every other waking second to keeping my grandfather out of a nursing home. He did a good job of masking the toll it was taking on him, but he could never hide it from me. And although I never said it to him, I couldn’t get past the thought: what if it had been me? What would I have done if my father hadn’t been around to absorb the family responsibility before it ever spread in my direction? How would I have responded? Would I have survived?

My protagonist, Gabe LoScuda, was born directly out of these questions. His story was a way for me to explore the same puzzling thoughts many of us have when our loved ones begin to become unrecognizable to us.

My grandfather battled Alzheimer’s for eight long years, which is not an insignificant amount of time in anyone’s life. What it meant for me was that I watched my grandfather deteriorate for about twenty-five percent of my life. There’s a real sense of helplessness and loss that pushes down on you when you watch a slow deterioration like that. At the same time, there’s an overpowering weight of responsibility that drives most caregivers to keep pushing on no matter the price.

These personal experiences made me think about how many other people in the world have been affected by the disease just like I had, and how many would continue to have their lives changed forever in the future. This “future” part of the equation is what ultimately led me to target my story at young adults, because the problem is not getting better or even slowing down.

In fact, the Alzheimer’s Association estimates almost a quarter of a million people will be diagnosed with Alzheimer’s or another form of dementia in the next year alone and that over fifteen million Americans are currently providing unpaid care for people with Alzheimer’s or other dementias. The youth of our society will, unfortunately, not be spared from the horrors of this disease. That fact is seemingly inevitable.

It is my hope that young readers will finish No Sad Songs with a new respect for what it takes to be a caregiver, and an understanding of how intertwined these duties become in the lives of people fighting on the front lines of a growing health dilemma that is rapidly approaching epidemic levels. And I want them to be inspired to become champions in the fight against this terrible disease so that future generations will never have to watch their loved ones disappear right before their eyes.

I’ve already received some glowing feedback on the novel since its release in February. I’ve been stopped on the street, in bookstores, and even in the hallways at the school where I teach by people who’ve had their own experiences caring for loved ones with Alzheimer’s. Each time, they quote back to me lines and events from my story that resonated with them, and we share common experiences that help us feel like we’re not alone in the fight, which is another goal I had when writing the novel.

The book has also garnered some glowing blurbs and reviews that make me feel like my intended purpose for writing it has landed with my readers.

I hope you’ll have a chance to read No Sad Songs or to pass it along to a young adult reader you think would benefit from its message. For more information about the novel, please visit my publisher’s website at Fish Out of Water Books or give a listen to this free podcast with me in conversation with NYT Bestseller, Charlie Lovett. You can also connect with me on Twitter (@frankmoewriter), Facebook, Instagram, or on my author page at

Wednesday, August 15, 2018

Support the Caregiver: 9 Strategies for Turning the Stress of Alzheimer's Caregiving into Transformational Growth.

By Dr. David Davis and Joko Gilbert

As anyone who has walked in our shoes knows, there is a vast hole in the heart of a caregiver who, by a twist of fate, must tend to the needs of a Loved One suffering from Alzheimer’s. A hole that has the power to reshape and redefine who we are, for the rest of our lives.  So, if we can approach this incredibly difficult challenge with the awareness that caregiving can be an opportunity for healing and growth, it allows us to step back from the precipice, where frustration, sadness and exhaustion await.

My sweet wife Linda, was diagnosed with Early Onset Alzheimer’s in 2009 at the age of 51 years old.  She survived for 7 years until her death last year. We are simply not given the tools and strategies to deal with the burden of caregiving and the toll it takes on every aspect of our lives.  Having practiced chiropractic for a many years, I had a strong grasp on the principles and practices of healthy living, which was the fuel for my desire to come through this experience as a better version of myself, and to embrace the profound lessons as a caregiver, allowing me to more fully integrate  into the world.  

The thought that we can bring insight into the community of caregivers to ease our collective burden, as well as providing inspiration and information to elevate the conversation from one of support to one of empowerment, was the motivation to create our book, Support the Caregiver, 9 Strategies for turning the stress of ALZHEIMER’S CAREGIVING into Transformational Growth.

Joko Gilbert, a dear friend of mine and Linda’s, was extremely close to the whole experience of taking care of my wife during her illness, and taking care of me, I might add, during the worst of it.  It is from our shared experience, that we were determined to give voice to the most valuable lessons gleaned from those eight years, along with the strategies for emotionally prospering at a time when exhaustion and despair taunt us.

Out of our passion to share our insights, we have met with many individuals and groups in the Alzheimer’s community.  Each meeting, each conversation is met with enthusiasm and the desire to explore more deeply the strategies that we have assembled.  As a result, the Alzheimer’s Association has invited us to speak on a number of occasions, to groups small and large, as well as an invitation to be a speaker at the national Caregivers Conference in Connecticut this on April 19th.  

The feedback has been strongly favorable, as we watch a tide of change in the caregiving community towards the very potent idea of empowerment.

Writing this book allows us to articulate and crystalize the most important and valuable lessons caregiving has taught us. It affords us the opportunity to reinvent ourselves in a way that makes our lives richer for having gone through the experience.

Speaking as a caregiver, I can think of nothing else that is as valuable and gratifying than reclaiming our sense of self, and the peace that accompanies it, which are the cornerstones to living a healthy, purposeful and joyful life. 

Dr. David Davis
I am recently retired from chiropractic practice after 34 years. My passion continues to be educating people on the principles of health and healing, writing, reading and travel, because I am always curious about what's around the next corner or beyond the next hill. 

Joko Gilbert
I was born and raised in a tiny village in Austria and traveled the world working as a fashion model. In the 80’s I moved from London to New York City to continue my career. I fell in love and settled down (and gave a lot of guardian angels a much needed break from watching over me), got married and had two delicious suns (not a typo). I’ve also worked in my husband Frank’s chiropractic practice assisting our patients with weight loss, exercise and healthy food and life choices and am a certified Reiki practitioner. Not in a million years could I have imagined that my friend Linda’s diagnoses with Early Onset Alzheimer’s would turn my life towards working with caregivers in the Alzheimer’s community and not in a million years could I be more honored to do so. Caregivers are unsung heroes! 



Wednesday, August 8, 2018

Meet Catherine Hodder, Esq., author of “Estate Planning for the Sandwich Generation: How to Help Your Parents and Protect Your Kids”

Reposted with permission from

By Catherine Hodder, Esq.

I was a corporate and banking attorney when my father began experiencing mini-strokes and having difficulty with his memory. We didn’t know at the time he was embarking on a ten-year battle with Alzheimer’s disease. And what a battle it was.

Even though I was well versed in law and finance, it wasn’t until I faced my father’s illness that I understood the importance of having proper estate planning documents. The more I learned, the more I realized there is a great deal of information most people (even attorneys) don’t know.

Before my father’s decline, he would mention from time to time about how to handle his affairs when he died. He also made it clear on many occasions that he did not want any artificial means to keep him alive. Knowing full well my mother would not be happy with his decision, I asked him to meet with a lawyer and put his wishes in writing.

As a result, he consulted with a seasoned estate planning attorney who drafted a last will and testament, revocable trust, health care power of attorney, financial power of attorney, and living will.

It is hard enough to care for someone with Alzheimer’s. It would have been impossible if we didn’t already have these documents in place. Because of my father’s planning, the financial, healthcare, and probate matters were handled seamlessly. It allowed us to focus on our father’s care.

Seeing first-hand how proper estate planning helped our family, I wanted to help others in a similar situation. After my father’s death, I changed my focus from finance to estate planning. I wanted to use what I learned from the front lines to benefit others.

I went into private law practice in Florida with a partner, whose father, incidentally, had terminal cancer. We lived the issues that many caregivers face. It was our mission to help caregivers understand how estate planning could help them. We especially reached out to those families in the “Sandwich Generation” who had young children they wanted to protect and who had real concerns about their aging parents.

Due to my husband’s career, we moved to California. I thought about starting another practice, but soon realized what I really wanted to do was educate others about estate planning.

I wrote Estate Planning for the Sandwich Generation: How to Help Your Parents and Protect Your Kids to be a resource for caregivers. There are ten steps for creating your own estate plan and five talks you should have with your parents. It is my mission to guide others through challenges of aging parents and caregiving.

Robert H. Schuller said, “Tough times never last, but tough people do.” It is my hope that this book with help people during those tough times.

About the Author

Catherine Hodder, Esq. is an estate planning attorney turned author. She enjoys working with families who would rather be doing anything other than estate planning. Her Florida law practice, featured in the Palm Beach Post, made “house calls” to help families with their estate planning needs. She now resides in California, writing helpful articles for members of the “Sandwich Generation.” She is also co-author of Law Office on a Laptop: How to Set Up Your Own Successful Mobile Law Practice, an #1 Amazon Kindle bestseller in law office education.

Connect with Catherine



Twitter: sandgenlife


Pinterest: sandgenlife

Wednesday, August 1, 2018

Welcome, Minna Packer, blogger of “Suddenly Mad: My Voyage Through Early Alzheimer’s”

Twice I was told the pattern of the images was that of Alzheimer’s. The changes and symptoms of what appears to me to be a rapid form of the disease have been radical. neurologist recommended I retire. I pushed myself to continue through the term, and then resigned from my twenty year teaching career last summer. There was no recognition for my many years of service. People I had known for decades, friends and colleagues disappeared.

Reposted with permission from

By Minna Packer

I was a teacher, professor, artist, filmmaker, mother of two adult children, a wife, a former American Fulbright, and an active member of my community. I am now 63. I was diagnosed twice in 2016 and 2017.

The lawyers told me to get my affairs in order and prepare for the eventuality of ending up in a memory care facility. I was not given any guidelines beyond being told by the neurologist to exercise and play Sudoku and Lumosity.

I thought joining an early stage support group would give me purpose and I would make friends. I attended a Reminiscence support group at the neurologist’s hospital, and met people two and three decades older than me who were in later stages, who bounced a balloon to each other as an activity. I figured there needs to be more to life in early stage than this. After I sent the social worker an email questioning if there were support groups for younger onset, I was told to not return to the group. I met with a woman who heads a fledgling Alzheimer’s organization that offers caregivers support groups in my county, in the hopes that I might start a early stage support group. She told me the only early stage people she knew were not interested in “being out” about having the disease, because of its stigma.

Where was I to turn for social support? I researched and found online communities for people with dementia. sponsored by the Alzheimer’s Association is an online forum, and the early onset forum became my go to place, to communicate with others in the early stages. I contacted the founder of Dementia Mentors, who paired me with an online dementia mentor who is 59, and has been diagnosed with early Alzheimer’s and Frontotemporal Dementia, who I meet with once a week over virtual Zoom chats. Dementia Alliance International support groups, an online community of people with dementia from all over the world, who counter the stigma and advocate for inclusion and having our voices heard, have become my online friends

I joined Dementia Action Alliance and was recommended for the art workgroup. It’s comprised of both people with dementia and professionals without dementia, who work in the arts Opportunities for discussing stigma and the language we use to describe ourselves have opened up between us. The chair of DAA has become a dear friend who has visited me in my home and regularly Zoom chats with me every week.

Last summer I started a blog on WordPress: Suddenly Mad: My Voyage Through Early Alzheimer’s.

The blog has given me the opportunity to tell it like it is for me, the good, bad and ugly. It is the channel for my uncensored self-expression. I upload my artwork and write about my experiences, relationships, and the trials and tribulations of living with a changed and changing brain. Caregivers, people in the dementia community, and old friends and family have written to me with appreciation for my raw honesty and ability to put into words and images my experience of falling down the rabbit hole, that to me, is Alzheimer’s. I write for you and I write for myself to remember. My art captures what cannot always be put into words. Sharing my blog is my way of not withdrawing from the world and demonstrating that I am still a creative person with thoughts, feelings and opinions that have resonance.

About the Author

Minna Packer has been an educator, filmmaker, producer/director, fine artist and writer. Born in 1954 in New York City, she is a first generation American, born to Jewish Holocaust survivors from Eastern Europe, who emigrated to the U.S in 1951.

She received her professional education at Pratt Institute (MFA); New York University and The Nova Scotia College of Art and Design University in Halifax, Nova Scotia, Canada (BFA).

Her film credits include – Director/writer and producer of the documentary, Back To Gombin which is in the permanent collections of the US Holocaust Museum and Yad Vashem –

Packer was awarded as a distinguished Fulbright Scholar for her work on the film, The Lilliput, website at

A recipient of The Nancy Malone award for excellence in directing, through New York Woman in Film and Television, she has also been awarded grants for her work from The Trust for Mutual Understanding, The New Jersey State Council on the Arts, The Gombin Jewish Historical and Genealogical Society, and the US State Department .

She has been a distinguished lecturer and professor at New York University, Jersey City State University, The University of Lodz, Poland, the Leon Schiller Film School, Jagiellonian University and Jerusalem University. For twenty years she chaired the art, art history and media department at The Hudson School- an independent school for gifted students in New Jersey.

In 2017 she was diagnosed with Early Onset Alzheimer’s and retired from teaching. She participates in on-line social and educational webinars with Dementia Alliance International, Dementia Mentors and Dementia Action Alliance, and writes a blog, Suddenly Mad: My Voyage Through Early Alzheimer’s Since her retirement, she treasures the time spent with her family and baby granddaughter.

Wednesday, July 25, 2018

Meet Martin Schreiber, author of "My Two Elaines"

By Martin J. Schreiber 

If there’s one thing worse than Alzheimer’s, it’s ignorance of the disease.

Count me among those who were ignorant. Over the past decade, I’ve learned more about Alzheimer’s than I ever thought was possible. To be sure, I’m no expert on the science of the brain. But I know what Alzheimer’s did to my heart – it broke it when it struck my wife Elaine some 14 years ago.

I’m striking back against Alzheimer’s by speaking out, to wipe out some of that ignorance of the disease. My book, My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver, came out in November 2016. Loved ones of those with dementia say it resonates with them. I’ve done more than 150 presentations in four states, with lots more coming up. I’m energized by these audiences.

Following a recent event in Wisconsin, a man who is a caregiver for his wife with dementia approached. He wanted to thank me for writing the book.

“It turned my life around,” he told me, tears welling in his eyes – and soon in mine, too. “You saved me.”

Comments like those are beyond what I expected when I wrote My Two Elaines. My goal was to help caregivers learn, cope and survive. I felt compelled to share my own experiences so that other caregivers would have an easier time.

My book grew out of a short magazine article about me and Elaine that was published in a Milwaukee-area magazine in July 2014. Up to that time, only my family and closest friends even knew I was an Alzheimer’s caregiver. After reading the article, they urged me to use my name recognition as a former governor to draw attention to the plight of these heroes.

Fast forward to the fall of 2015, after Elaine moved to memory care assisted living. My quieter time at home was allowing me to reflect on the now-completed experience of caregiving at home, and to ask myself “what’s next?” I set to work, pouring out my thoughts on paper and on my laptop – whichever I had at my fingertips when inspiration struck.

In just two months, I had a first draft of a book, and I began to share it with not only my inner circle, but also with friends I’d lost contact with due to my caregiving responsibilities. They told me, “we had no idea what you were going through.” That made me think, if that was happening to me, surely there must be many other caregivers whose work was going unnoticed, unacknowledged and unsupported. That spurred me to get my book published.

The first shipment of books (5,000!) had barely landed in my garage in November 2016, and right away I hit the road. The response was so great I had to order more books (10,000!) in early 2017. When it was time to order once again, I took a step back and knew I needed to include some of the “conversations from the road.” I also realized that while I had told my story and Elaine’s (by way of her journal entries), I hadn’t given our kids the chance to voice their thoughts. So now, all four of them have added their perspectives in the Epilogue.

I sincerely hope that my book is helping others who are experiencing isolation, grief and depression due to caregiving. We cannot give up. We have to educate others.

My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver is available on Amazon. To request autographed copies, use the order form at