Wall Street Journal best seller, nonfiction e-books, May 2015. Winner of the Memoirs (Overcoming Adversity/Tragedy/Challenges) category of the 2013 Next Generation Indie Excellence Book Awards. Winner of a silver medal in the Health/Medical category of the 2013 Readers' Favorite book awards.The unflinching and hopeful story of one woman's journey into family caregiving, and a vivid overview of the challenges of Alzheimer's care. With the passion of a committed daughter and the fervor of a tireless reporter, Martha Stettinius weaves this compelling story of caregiving for her demented mother with a broad exploration of the causes of Alzheimer's disease, means of treating it, and hopes for preventing it. She shares the lessons she's learned over seven years of caregiving at home, in assisted living, a rehabilitation center, a "memory care" facility for people living with dementia, and a nursing home--lessons not just about how to navigate the system, but how caregiving helped the author to grow closer to her mother, and to learn to nurture her mother's spirit through the most advanced stages of dementia.One in 8 people over age 65 has Alzheimer's disease, and nearly fifty percent of those over age 85. As baby boomers age, and we all live longer, most of us will know someone with Alzheimer's disease or another dementia, or care for someone with dementia. Alzheimer's disease is the fifth-leading cause of death in the United States for those age 65 and older, but the only one in the top 10 without a means of prevention, a way to slow its progression, or a cure. In the United States, over 15 million family caregivers provide 17.4 billion hours of unpaid care to family members and friends with Alzheimer's disease and other dementias. Sixty percent of family caregivers report feeling extreme stress.This memoir is not a lament, however; it is guide, and, the author hopes, a means to soften the blow upon all of us. In the course of the author's experience, she discovered what could have been done earlier to help her mother, and what can be done now to help us all. Ms. Stettinius's greatest gift to readers is that of optimism--that caregiving can deepen love, that dementia can be fought, and that families can be strengthened. Her book is appealing, enlightening, and inspiring.Through its intimate scenes and skillful storytelling, "Inside the Dementia A Daughter's Memoir" is a call to action for better dementia care, more funding for dementia research, and more support for family caregivers. In the appendices, the author shares facts she wishes she had known years ago, including how to get a diagnosis of Alzheimer's disease; what medications are approved to treat the symptoms of Alzheimer's disease; risk factors for dementia, and possible preventive measures; promising explorations in dementia research; the link between insulin resistance, diabetes, and Alzheimer's disease; the benefits of "memory consultations" and early diagnosis; and national and international movements for more dementia research and better care.Inside the Dementia A Daughter's Memoir includes source notes, resources for caregivers, and an index.
Very thoughtful and insightful, especially for those with loved ones suffering from dementia. I reached out to the author with some questions and she got back to me within 24-hours with great suggestions.
Martha Stettinius graciously shares the path she and her mother have taken together over from 2005 to 2012 as her mother progresses through various stages of what is most likely Alzheimer's Disease.
Stettinius organizes her book chronologically, marking each section by the various places her mother resides:
Part One: Home Care Part Two: Assisted Living Part Three: Rehab Part Four: Memory Care Part Five: The Nursing Home
But the narrative within each section is not nearly as tidy as the section headings imply. Stettinius writes a memoir that foregrounds the thoughts and feelings she experiences as she takes on more and more responsibility for her mother's care. Assisting someone with dementia is no easy task, and Stettinius is very kind to let us watch her stumble through each challenge--both major and minor.
Yes, it's interesting to read information-rich guides about Alzheimer's and other dementias such as the 36 Hour Day and the evidence-based information available on Alz.org. However, memory problems affect identity and relationships so strongly that I find the memoir to be a better genre for helping others to understand and helping other to prepare to walk a similar path.
Stettinius starts in 2005 with her mother's minor car accident, but she also goes back in time to give more background about her mother's life and about her own relationship with her mother as a minor child and then as a young married. Her mother Judy worked as a teacher and later lived an idyllic life at a lake house. But Judy also struggled with alcohol addiction and mental illness.
Stettinius pushes through a lot of hurt and conflict to build and rebuild a relationship with her mother. The ever-changing landscape of dementia requires constant re-evaluation of the relationship and constant innovation, which on the one hand is exhausting but on the other hand can be rejuvenating.
I don't know if "enjoy" is the best way to describe the experience of reading a dementia memoir. However, I did feel enriched, inspired, heart broken and heartened by seeing their relationship morph through each trial. Brava to Stettinius for feeling her way through this bumpy ride and for sharing her insights with her readers.
As I began the book I was very excited as the author states this is a book of hope for those with Alzheimer's. However, it turned out to be a personal account of her mother's progression with Alzheimer's. I very much enjoyed the read, was just expecting something different. Thus the 4 star rating instead of 5. But this is definitely a wonderful book full of insights into the disease and diagnosis. I learned a lot as I personally care for a woman with Dementia. The book is packed full of resources in the back which are extremely helpful. I also enjoyed the author's description of what she would have done differently...especially financially! I highly recommend this book, especially to caretakers and medical professionals.
Thank you, Martha, for writing this account. In Canada, we followed similar steps with similar results as you encountered with your mother's care (with one of our parents). Now, to get our children ( mid to late 30's) to read this, as I and my husband may not see the signs in each other and they should know what to look for when they see us only 4 or 5 times a year. Would our experience have been any different if we had been able to read your account ten years ago? I think, yes. Very important information told personally.
I appreciate this book and Martha Stettinius very much. My mother is in stage 6 Alzheimer's. My sister and I are the family members responsible for her care. Like Martha, we've had to learn a great deal through "on the job" training. Fortunately my sister and I work very well together.
I highly recommend this book for the following reasons. First, Martha references a number of other books that are helpful, such as "The 36-Hour Day". Secondly, the appendices provide good information on current research and trends in dementia drugs and care. The appendices gave me ideas regarding questions I want to ask mama's neurologist during her next visit. Thirdly, the book has a great index. I am impressed by it. Fourth, reading Martha's story, her growth, things she has tried, has felt so familiar to things my sister and I have experienced. For example, we just began using Melatonin because mama wasn't sleeping regularly, and just after starting it I read that Martha started using a Melatonin based sleep aid to get Judy on a regular sleep cycle - it was kind of a validation of what we had just done. Fifth, it is evident that Martha is supported by her husband and children. It teaches the value of a supportive family for care givers. My sister and I are fortunate to each have spouses who support and comfort us as we care for mama. And in my case I'm fortunate to have a daughter who also helps out by sitting with mama and bringing along her 17 month old. My son also visits mama with his to small daughters occasionally. These visits with the little ones really brightens the day for my mom.
If you are a care giver for a dementia victim, please read this book. If you know someone who is a care giver, first, offer to help in whatever way you can. Then, recommend this book or give them a copy.
I’ve read many books about Alzheimer’s, but Martha Stettinius’ memoir Inside the Dementia Epidemic is among the best. In this moving, honest, unrestrained story of a daughter’s experience through all the stages of her mother’s Alzheimer’s, we get a glimpse of what a caregiver experiences. Stettinius shares with us the heartbreaking decisions she made to see her mother cared for, the impact the disease had on her own family, and the ways in which this illness helped repair what was often a troubled relationship between her and her mother. She starts with her suspicions that something is wrong, that her mother’s mind is slipping. We then follow along through the diagnostic period, and then the many different ways she sought to care for her mother, some that failed, and others that were competent, trustworthy, and joyful. This is a well-written, thorough book full of deeply personal revelations and stories most caregivers will find familiar. It is an excellent guidebook to caring for a loved one with Alzheimer’s.
While this is a must-read for anyone who is confronting dementia in their own lives, you don't need to have a parent or spouse with Alzheimer's to appreciate this book. So incredibly moving as a memoir... writers could learn much from the author's often poetic voice, as well as her ability to create a true powerhouse of information. Ms. Stettinius provides remarkable insight into the caregiving journey and the global issue of dementia. Carefully crafted, thoroughly researched and well-edited, I give "Inside the Dementia Epidemic" my highest recommendation!
A thoughtful and thorough memoir of one daughter's journey in Alzheimer land. As a physician I am well aware of this disease and the havoc it plays in the lives of individuals and their families. Here in the rural South many families take care of their aging parents at home as long as they can. . . And then a little longer. I have seen glimpses of their struggles. This book brings it all together and focuses on the inadequacies of our current healthcare system in caring for theses patients but also in assisting the caregivers.
Excellent book by a daughter caring for her mother who has progressive dementia or Alzheimers. (There’s no definitive test to make much of a distinction between the two diseases while the person is alive)
One of the best points brought out in this book is that even when you have placed your loved one in a dementia unit or locked facility you are still responsible for their care. Someone still has to pay the bills, be sure you and their doctor agree on what care and medications are needed, and be with them when they need to go to the emergency room or be hospitalized. They may not live with you, but you still have responsibilities for their care and comfort.
If you have a loved one with dementia or Alzheimers, read this book soon!
This is probably the best book I've read about caregiving for a parent with dementia. It hit so many notes for me. How care looks when you've had a difficult relationship, thanks to challenging family dynamics, and how to move forward in the new reality. The high notes on what to expect through every leg of the journey, although this entirely relies on the personality. She accurately described what I've seen unfold so far, so I know I can rely on what she says about the tail end of the disease. And while I don't expect to develop a warm and fuzzy relationship with my parent, as she did, I do see an acceptance of my care and even a closeness evolving. I am beyond grateful to Martha for this honest, personal, and moving account. I will refer to it often.
Dear Inside the Dementia Epidemic, While you are not a book I would have ever picked up without book club, you were a valuable read. While there was a ton of information within your pages, your story was also well told, and engrossing. While you are a few years out of date, the information inside held a lot of value for me. What made me sad was the level of regret Stettinius has for what she would have done differently if she had different information. That mind set is difficult to live in and the majority of the book is from this place. I hope, 7 years later, that she has been able to stop regretting and forgive herself for the ignorant mistakes she made in her mother journey.
This memoir covered very familiar ground, as Stettinius charts her mom's decline and struggles with home care, assisted living, medical crises, and so on. The author criticizes some other dementia memoirs as "disrespectful," for treating the declining one as humorous occasionally, but I find that, if you don't approach the situation with some humor, then it's just straight-up depressing. God bless those with the heart for professional caregiving--low-paying, messy, demanding, sometimes dangerous work. If your family has a history of mental illness, alcoholism, divorce, etc. you will find the rapprochement between mother and daughter inspiring. (If your family is fairly dull on those fronts, you might find yourself thinking, "Yikes!")
3 3/4 stars. Raw and real memoir about a daughter navigating care for her (relatively young) mother with Alzheimers. Such a difficult situation and it gives me lots to think about in regards to a friend of mine in this situation.
Most people who read books on dementia either are in the medical field or have a family member or friend who is dealing with dementia. I fall into the second category. This book is somewhat dated (published in 2012) but I still found a lot of helpful information in this book.
This well researched book about the author's experiences in dealing with her mother after she was diagnosed with Alzheimer's is at times depressing but at times hopeful and uplifting. According to Stettinius, dementia is the defining disease of this generation, and a "tragic wasting away and a long, painful good-bye - indeed, as the complete erasure of the person once was." The specter of this destructive disease is something that haunts each of us aging baby-boomers; every time you misplace your eyeglasses or keys, or can't find a word that is on the tip of your tongue, it's hard not to think that this is the beginning of the end...
Stettinius does provide some good advice for delaying the onset of the disease - avoiding weight gain, exercise, eliminating excessive fats and sugars, keeping the mind active and engaged, etc. - all the advice you've heard about keeping healthy in general. She discusses her challenges in finding an appropriate place for her mother to stay as she progresses through the stage of the disease. She talks with frankness about the many unpleasant aspects of the disease as well as the challenges of being the child of a demented adult.
In addition to the frustrations and challenges in dealing with her mother's long wasting away, she also writes of the sweet and rare moments of connection, when her mother pulls some distant memory out of the past, or speaks of how she loves her and appreciates her. As of the writing of this book, her mother was still alive in a memory care unit, 7 years after her initial diagnosis.
The final ~30% of the book is dedicated to Appendices, sources, footnotes and index and offers much additional information about the current state of Alzheimer's research and drugs, and possible preventive measures. The resources listed in the book are an excellent starting place for further individual research on the disease.
I'd like to thank the author for writing this beautiful and insightful memoir about her mom, her mom's dementia, and the caregiver's role in this terrible disease. I was humbled by what the author has had to deal with since her mom's disease became not only her mom's problem, but her own. She dealt with it wonderfully as far as I could tell. She was tough on herself at times, but I never had reason to fault her. She is a good daughter and has done, and is doing, her very best to allow both herself and her mom to have the best lives possible in spite of the disease that is taking her mom away bit by bit. I am grateful that she shared her mom with me. Judy is wonderful indeed. I especially appreciated the way Martha always noticed that Judy is still in there, even when words have failed her. Brava.
There is an extensive index that has a lot of additional information about Alzheimer's, and other forms of dementia, and the hoops one must jump through to find the right facilities and care. This book is a keeper.
I found this memoir very interesting. The author details her experiences with her mother over the course of several years. For a time the daughter watches over her mom as the mom lives in her home nearby called 'the cottage'. As mom begins to deteriorate she moves into her daughter's family's home. Daughter is filled with guilt as she tries to relate to her mother and realizes mom must move into a care facility. She details her angst as she must move mom to different care facilities over time. The author shares her feelings, good or not so positive, as she works through these experiences and feelings for her mother at different stages.
Both my parents and my husband's parents have passed away. I read this with the knowledge that no one knows what the future will bring - for ourselves and those we love.
This book is almost identical to what we are going through with my Mom. Although never diagnosed with dementia or Alzheimer's, she is totally normal one minute, saying bizarre things the next, incredibly mean to my sister who does so much for her. My mom was a closet drinker and had several mini strokes as well as the author's mother. And, like Martha, the staff continually tells my sister how sweet our Mom is. Thanks, Martha.
I read the book a few years after walking through dementia with my late father. It was sad to read the things that she learned the hard way that my family did as well. It was somewhat sad to read because the author was dealing with a lot of unresolved issues with her mother, which I'm glad I didn't have with my wonderful father.
An extremely emotional tale that truly captures the feelings that come along with experiencing a loved one going through dementia. I am definitely shelving this one!
Highly readable and an excellent example of a dementia journey, but with a very personal layer. Lays a good foundation for the prospective caregiver to begin their own learning journey, hopefully well in advance of needing the information.
There are much better resource books out there for families who are dealing with a dementia diagnosis. As a memoir, this book is only OK. The author was very selfish and self-congratulatory about caring for her mother.
I won this book through the Goodreads Giveaway and it was a wonderful book. Having someone who struggled with dementia, this book provided lots of information.