My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver

by Martin J. Schreiber, Cathy Breitenbucher

Former governor of Wisconsin Marty Schreiber has seen his beloved wife, Elaine, gradually transform from the woman who had gracefully entertained in the Executive Residence to one who sometimes no longer recognizes him as her husband. In My Two Elaines: Learning, Coping, and Surviving as an Alzheimer's Caregiver, Marty candidly counsels those taking on this caregiving role. More than an account of Marty's struggles in caring for his wife, My Two Elaines also offers sage advice that respects the one with Alzheimer's while maintaining the caregiver's health. As two-thirds of those with Alzheimer's are women, he offers special guidance for men thrust into an unexpected job. With patience, adaptability, and even a sense of humor, Marty shows how love continues for his Second Elaine.

Genres: Nonfiction, Memoir, Mental Health, Audiobook, Autobiography, Adult, Biography

126 pages, Paperback

Published January 1, 2017

Reviews

[Jim B · Rating 4 out of 5]

I highly recommend giving this book to any man who is a caregiver for his wife, especially if she has Alzheimer's. (Women would probably profit, too. As a traditional husband, though, he had to learn to do the things his wife had done for the household.) The book was declared "Best Caregiving Book of 2018" by Care.com. With humor, humility, and a lot of love, former Wisconsin Governor Schreiber describes their lives together (highschool sweethearts) including the last 15 years, which his wife Elaine slipped away through Alzheimer's and now he is married to a different person, but still Elaine. The book is full of little "post it note" drawings that say either, "What I wish I knew at the time" or "What I should have done." The format makes the book so helpful and useful to other caregivers. His hope is that people will get help earlier so they can enjoy life more. He addresses such practical issues as guilt when the spouse finally needs to be cared for in a professional facility, and seeking / accepting help from family and friends.

Although the writing is simple and folksy, some of the suggestions are so helpful that I feel like saying, "Everyone should read this!" Much of what Martin Schreiber has learned was through advice from the Alheimer's Association. They offer a toll free advice and answer telephone number and can talk about any issue you need to talk about in connection with Alzheimer's and being a caregiver.

I purchased the book when I attended former Governor Schreiber's talk at a caregivers' support group. He is an amazing person. At age 80, with stenosis of the spine and breathing problems, he still speaks to groups to help caregivers, continuing to use his life to help others. I read somewhere that he has the gift of making each person feel special. He certainly did that for me. I had to set up the microphone and he engaged me in conversation and later when he signed my book he wrote a paragraph of gratitude for what I do!

[Loretta Runyon · Rating 5 out of 5]

The title of this book caught my eye. I felt this book would allow me a better understanding of what caregivers go through when dealing with Alzheimer's. And it delivered.

Martin and Elaine were high school sweethearts. Wife, homemaker, mother, politician's wife... all taken away from her memory. Reading about such a strong woman slipping away to this disease is heart wrenching. There are excerpts from her journal in which you can feel her frustration, denial, heartbreak.

Marty loses himself. His life is ever changing in a negative direction as he goes from husband to caretaker. This leads to health issues, depression and frustration. After utilizing the many sources (which he notates in his book), he does eventually get as back on track as one can.

My Two Elaines is a quick read. If you are dealing with Alzheimer's in any way, I would suggest you read this book.

[Lori · Rating 3 out of 5]

Informative But Dry

Although the book is well written and will be easily understood by the reader, in my opinion it reads less like a personal story and more like a long educational brochure on Alzheimer's disease and it's impact on both the patient and the caregiver. In fact, I would have PREFERRED to see this as a brochure (condensed to an abbreviated length) in a doctors office, hospital, PowerPoint presentation, college class, nursing facility/assisted living etc.
Why? Because it talked more ABOUT the experience of spouse as caregiver then it did of the person suffering and didn't contain much detail on the day to day experiences or progression. Such as: what were the beginning symptoms for Elaine? Was she waking up throughout the night regularly and can anything be done to combat that? Did she ever ask you BEFORE becoming ill or just after to promise her you'd never put her in a nursing home? How did you handle having to change messy diapers? How did she handle that loss of privacy, dignity, and independence? How did the discussion begin regarding her driving? Did you just "lay down the law" so to speak and did she fight you verbally?
What I'm trying to say is although the book is good and informative, I felt that it talked AT the reader. Do this, don't do this etc. Whereas I was looking for more of a personal story. Also I think I was hoping to read something that I could relate to as a disabled woman who's mom is suddenly and quite dramatically at times, showing cognitive issues, has had several severe falls, is unhappy in her marriage of 2 plus decades (they both are, and he doesn't talk to her, share a bed with her etc and hasn't in yrs) and is wanting to move to an apartment and live on her own. She is also very emotionally needy and the wife Elaine in this book was younger and much more independent!
Over all, a decent read with valuable information.

[Elizabeth · Rating 3 out of 5]

I highly recommend this book to any caregiver of a person suffering with Alzheimer's. Martin sets out the challenges and joys of caregiving for his wife of a lifetime, Elaine. I like the way Martin has notes throughout the book of what he wish he knew or had done earlier. Those pieces of advice are very meaningful. Martin realized he was sacrificing his own needs by making caregiving his whole world. Slowly, he learned to read more, ask for help, join support groups and carve time off for himself. Therefore, he is healthier and more energetic to cope with the hard work of being with his wife. The book IS a love story. Elaine and Martin have been together for decades. They shared an amazing life of generosity and selflessness in serving fellow citizens,,,Martin through politics and Elaine through teaching. This book is a gift to our society that only furthers their personal goals of making a positive difference. I love that this outcome has been able to happen for them out of a trying and tragic situation. Martin speaks about the book all over the state of Wisconsin. His outreach is helping so many people. Thanks to the co-author, Cathy Breitenbucher. Her nursing background strengthened the book.

[Katie McDonough · Rating 4 out of 5]

“I should’ve let go of my first Elaine sooner, so I could love my second Elaine where she is now.”

I liked his reflective look on how he handled things as a caregiver and person grieving. It felt honest and also giving himself grace for not doing everything perfectly. I want a whole book on their love story and teen years. I loved hearing about who Elaine was before her diagnosis and how many life milestones and time periods they’d been through together but this part was very short. He focuses more on this being a help book for others starting the caregiving process which I can appreciate.

Ugh such a good read!! Or audiobook in my case

[Lauren · Rating 5 out of 5]

My loving daughter gave me this book. As I am going through this journey with my wife, the book was at once both informative and heartbreaking, insightful and sad, encouraging and discouraging. Such a complex combination of emotions. But highly recommend not only for caregivers of loved ones with Alzheimer's, but also close family and friends of them as it can be an invaluable way by which to share the nature of the journey.

[Linda · Rating 3 out of 5]

Part memoir, part how-to. The author is a former governor of Wisconsin whose wife of more than 60 years who was diagnosed with Alzheimer's when she was 65.
Mr. Schreiber's realization that he could not be all and everything as a caregiver for his wife, after his attempt to do that imperiled his own life.
Very short, but very powerful. Great insight.

[Valerie Van Egmond · Rating 4 out of 5]

This book outlines the struggles that Alzheimer’s caregivers face when trying to do what they think is best for their loved ones. As someone who has seen Alzheimer’s affect a loved one, I wish I would have read this earlier. Brutally honest and at times funny, this book was eye opening. It’s important to remember self-care when providing care to others.

[Lisa Debelack · Rating 4 out of 5]

This book contained some helpful information on dealing with Alzheimer’s disease. We do not live full time with our Alzheimer’s loved one as the author did but one could still glean some useful insight.

[Brianna Parr · Rating 4 out of 5]

It's a beautiful story, filled with helpful advice for those struggling to survive through this disease process as a caregiver. It conveys so much emotion, mostly love, and it was a wonderful read.

[Anupama C K(b0rn_2_read) · Rating 4 out of 5]

It was heartbreaking to listen to. My grandmother had Alzheimers so it was relatable. Sometimes Marty's advice reminded me of the advice we give to parents on how to look after a child

[Ellie · Rating 5 out of 5]

Book for school but I’ve barely read anything the past 3 months so I’m counting it 😅 I did really like this book though and loved the “what I wish I would’ve known” and “what I wish I would’ve done” sections. I think this book did a great job of giving real life examples while being educational and providing resources.

[Laura · Rating 5 out of 5]

Since my husband and I care for both of our parents with memory issues I almost passed this book by thinking I could not read a sad memoir about Alzheimer’s .
This book is not a sad memoir , it is a great tool for caretakers . The author a former Governor of our state writes with the presence of a kind father trying to tell you, caretaker how to ask for help and take care of yourself . His lines about connection beyond personality and on a soul level were so beautiful they made me cry tears of relief and gratitude for feeling hope for those unnameable experiences in life . This book reminded me of talking to your friend’s dad when you are a kid who gives you comforting advice . There are many reasons to read this book mainly to really understand how important it is to take care of your home health before it is too late and to never say you will never do certain things . Life changes and we have to accept what changes are before us . Beautiful book one I will buy to gift to my little libraries in town to help those silent caretakers in their homes tucked from the world . I loved the inclusion of the journal entries from his wife Elaine a rare opportunity to see the view of the disease from the person them self . Reading the words of such a loving couple through tough life experiences helps build resilience in us to see life doesn’t always go our way but we can still go on . Highly recommend this book that was a copy from Netgalley given to me in exchange for my review .

[M Moore · Rating 4 out of 5]

A lovely book from the perspective of a caregiver and loved one of someone with Alzheimer's. My two main takeaways from this book were 1) how Schreiber emphasized the importance for male caregivers to take care of themselves and not live into the stereotype of not asking for help and 2) a reminder that politicians (and other notable people) are not immune to the devastation of this and other diseases. I recommend this short read for the general awareness but especially for anyone who is in a caregiving role for someone in a similar position.

Thanks to Librofm for access to this audiobook. My thoughts are my own.

[Carolyn · Rating 5 out of 5]

MY TWO ELAINES is this month's pick for our reading group sponsored by the POWERS MEMORIAL LIBRARY of PALMYRA!! Written by a former Governor of WI, Martin J Schreiber, who has given us a fine handbook for introduction to the diagnoses and care of a spouse with Alzheimer's! If you know someone faced with this devastating disease, offer a copy! He writes tenderly of his wife as he struggles with the toll it takes on himself. Mr Schreiber eventually seeks additional information and assistance. He offers a fine service, providing essential information and resources!

[Jim Lang · Rating 4 out of 5]

I picked this up when I heard Martin Schreiber deliver a keynote speech at an Alzheimer's convention in Indianapolis several weeks ago. To me, Schreiber is a hero, someone who has written eloquently about his experiences as a caregiver to his wife, Elaine. If you are someone who has a loved one with dementia or Alzheimer's, this is a easy-to-read, heartfelt guide that will help you as a caregiver. I can't recommend this enough -- it's been a tremendous help to me.

[Daniel D. Imholte · Rating 5 out of 5]

Well worth reading

I learned much by reading this wonderful book. I appreciate the authors sincerity, candor and honesty. I will use his recommendations as I face the potential of dealing with ALZ. Again, thanks for helping me to better understand the challenges that may be ahead for me and my family

[Michelle Gardner · Rating 4 out of 5]

I saw him at a conference I was at. He was so funny and insightful. I just had to buy his book. I read it in one sitting. I am a social worker and work with caregivers often. There are so many key points that I will be able to pass along.

[Amy Guse · Rating 5 out of 5]

One of the best books on Alzheimer’s I have ever read!

[Andria · Rating 3 out of 5]

Would have liked more specific strategies.

[Pam · Rating 5 out of 5]

Honest story and suggestions for caregivers as Alzheimer’s progresses.
This is very helpful and also sad. Sadness is part of the reality when someone you love has Alzheimer’s disease.

[Rose Todryk · Rating 3 out of 5]

It was good but I think I was looking for more specific advice. Main takeaway was, seek help, ask for help.

[Jennifer Mortt Johnson · Rating 5 out of 5]

Tonight I turned the last page of this extraordinary book. Oh my, it was so powerful. Heartbreaking, thought filled, humorous, and filled with information about how to care for your loved one with Alzheimer’s or other dementia and also for yourself as a caregiver.

Martin Schriber is the former Governor of Wisconsin. This book is his account of his life with his two Elaines. Elaine was a lovely, bright and full of life woman. She developed Alzheimer’s and lived for 18 years with this disease. There are poignant excerpts from journals she kept during her early years with the disease. Her recognition, and struggles of what she was dealing with and her understanding of the care she was receiving, showed such depth of love for her husband and heartbreak for what she had to endure.

In this book, he describes his life as a caregiver as the disease progressed for Elaine, what he wished he knew at different stages, and how he embraced the new Elaine as he stopped grasping for who she was, and instead embraced, who she had become so that he could better care for her and fully live in the moment with her.

He documents his struggles as he tries to manage her illness and a very difficult decision to move her into a nursing facility. This book is a beautiful love story, a heartbreaking tragedy, is peppered with humorous antidotes of the years together and finally a guidebook on how to handle this very awful predicament that nobody wants to find themselves in.

There is a full appendix that includes information from a neuropsychologist on how to handle situations with your loved one who has Alzheimer’s, as well as care for yourself. There’s also so much good information from the Alzheimer’s Association to support for the patient and caregiver on this journey.

Dementia comes in different ways. In my own life, my grandmother had Alzheimer’s and I remember going through similar stages as he and his family did. My father initially had what seem to be Alzheimer’s, but it was a brain tumor instead. Still, with the symptoms so similar, I remember the first time he no longer knew who I was. This book is just what families need to feel a connection with others, benefit from the wisdom of other caregivers, find the resources they need to best support their loved ones and themselves.

I had the privilege to hear him speak about his experience, and his deep love for Elaine. This book is extraordinary and so is he. I highly recommend it.

[Terri Enghofer · Rating 5 out of 5]

The takeaway from this engaging accounting of former Wisconsin Governor Martin Schreiber's transformation from full time husband to full time caregiver, as his beloved wife of 52 years slowly succumbs to the ravages of Alzheimer's disease, is that you are completely DELUSIONAL if you think you can carry the weight and role of caregiver alone. It's just plain too dang heavy, multi-faceted, unpredictable, and physically and mentally taxing for one person to manage on their own. The disease not only invades and abuses the afflicted, but also has enough strength to relentlessly suck the sole caregiver of their health, energy and perspective as they endeavor to hold on to their end of the rope during this fierce tug-of-war. Marty sites the sad statistic that with 5.2 million Americans age sixty-five and older (currently) diagnosed with Alzheimer's and 7.1 million expected to be challenged by the disease by 2025, it's a "growth industry." That's why this little book, My Two Elaines, is such an essential read . . . especially to all the Baby Boomers and/or adult-age children of Boomers out there. Still no cure. Still only a handful of drugs (Aricept and Namenda) to ease the symptoms (NOT slow the progression). And the bleakest news of all is that due to the advancements in modern science to keep us all alive longer and LONGER, our chance of finding Alzheimer's (or other named forms of dementia) at our doorstep increases. There's an irony, huh? Mr. Schreiber emphasizes in his book that now is the time to become as educated and aware as possible about not only the intricacies of memory-depleting diseases, but also the resources available (Alzheimer's Association, etc.) to care for our loved ones should the need arise.

This is a touching, sentimental and candidly told true story that reveals Martin Schreiber's deep love and devotion to his wife. He shares with honesty his feelings of fear, overwhelming fatigue, vulnerability and guilt. But please, don't shy away from reading these 126 pages of large-print, simply written passages, because HOPE DOES EMERGE, and to disallow Marty the opportunity to share how and where he found that hope, would be the biggest disappointment of all. My Two Elaines . . . Memory Fading. Love Enduring. This is good stuff . . . Five Stars.

[Heather · Rating 4 out of 5]

I kept seeing this pop up in caregiver support recommendations, so I finally gave it a shot. I cried my way through this, but I'm so glad I finished it.  What a beautiful story of love, growth, and hope. I loved the way Elaine's letters are included throughout the story, because it adds so much perspective to hear how someone with dementia is processing both her own struggle and the challenges of her caretaker. Another piece that stood out to me was how honest the author was in regards to wishing he would have asked for help sooner.  He pleads with caretakers to care for themselves, using his own vulnerabilities and mistakes to motivate others. I love how open he was about his pain and how he fervently encouraged men to feel strong for seeking support.   The open sharing about guilt and resentment made me feel a lot less alone too.  


I loved how this included so many practical suggestions as well. Each chapter has powerful advice sections of "What I Wish I'd Known" and "What I Wish I'd Done."  All the other dementia resources I've read have not been as simultaneously tender, vulnerable, and inspiring as this while also providing honest advice too.  


Finally, I appreciated the appendixes at the end and reading about the research that was highlighted. There was a study about how those struggling with dementia reported feeling valued and loved even when they were not fully understood by their caregivers.  It really showed the importance of just being present with your loved one, even when you feel like you can not completely understand what they're going through.  I'm still processing the "pivot," concept, but I do think there is beauty in finding joy and connection in being in the present moment.  


Other insights for me to remember:

-"It's not the details of the stories that are important; it's the mood that is created by telling them."  

-Investigate the reason behind the question.  See if they are trying to minimize boredom or connect with you. See if doing another activity doesn't minimize the questions.  

-Motor skills are easier to remember than factual information.  Use a whiteboard or notebook for frequently asked questions.  This can sometimes lead to better mood due to self-reliance or encourage loved one to write things down for herself.  

[Bob Berman · Rating 3 out of 5]

Overall, the book was too short. 112 pages, plus two appendices. One of the appendices, 25 pages long, is a conversation between Martin Schreiber and a neuropsychologist. That appendix is worthwhile.
The book is in three parts: Learning About, Coping With and Surviving Alzheimer’s Disease. Worthwhile learning:
-How Alzheimer’s can harm your (the caregiver’s) health
-Isolation, how the caregiver can get isolated from friends and family
-Reaching for a lifeline
-Therapeutic fibbing
-Living in the now
-What surviving looks like
The book did not provide enough discussion on what may be the most important topic: when to have the patient enter a facility, which his wife did. There is some good advice, e.g. take advantage of the Alzheimer’s Association; find an outlet for sadness and fearfulness; ask others to help; let go of the person he/she was and understand who he/she is now; you’re not perfect, do the best that you can, it’s good enough. I also found the following statement impactful: “I am a widower with a wife.”
This book could be useful for caregivers of patients in the early or middle stages of Alzheimer’s.

Is it worth the cost: get it from the library.

[Marathon County Public Library · Rating 5 out of 5]

Martin Schreiber describes the symptoms and life changing challenges he, the family and the “other Elaine” faced. The final pages of this book list many resources for people who may have a family member or friend going through this health war in which they will never win.

I chose this book because I have taken care of relatives who had steadily declining memory issues. To see someone so energetic and happy turn into someone who looks the same on the outside but is someone else on the inside is painful. If you have ever cared for someone with this disease, you will realize after reading this book that you are not alone. This book will make you smile and make you cry.

Paula L. / Marathon County Public Library
Find this book in our library catalog.

[Pat · Rating 5 out of 5]

Being a native of Wisconsin, I immediately recognized the author the first time I saw a review of this. The second time I saw reference to it, I put it on my TBR list. My first experience with Alzheimer’s had occurred some 40 years ago while helping clean up after a church meal. I observed a woman who I had always known to be helpful and involved in such activities, do a really bizarre thing. I couldn’t get what I had seen her do out of my head! I knew something was not right! Just a couple weeks later she was diagnosed with Alzheimer’s disease.
Though the subject matter is more than tough, My Two Elaines is definitely readable, and gives some insight into what it might be like to deal with this disease in a family member. Schreiber is writing from his heart and soul, and is honest about his failings and his successes, and also shares some regrets, and, his ever-present, growing and changing love for his wife. There are two helpful appendixes, Q&A style, that have been added in the 2022 edition. The book was originally published in 2016.

[Shawna Gonzales · Rating 4 out of 5]

I didn’t know what to expect from this book but the title and cover intrigued me.

I feel like I got a great perspective of what it’s like to love someone through thick and thin. Marty cares for his wife as she struggles with dementia and he talks about walking through that and the hardships that come with it. I appreciate the honesty in Marty’s struggles.

This book felt targeted at caregivers specifically in a lot of the chapters. Having a brother with disabilities, I felt like I was able to gain perspective on what my parents might face in being full time care givers.

This book was eye opening in the sense that you never really know how life will unfold with the person you commit to in marriage, but Marty sticking it out to love his wife through her dementia is really beautiful.

A line that really stuck out to me was, “Sometimes, it’s the disease talking, not them.” That line really hit home for me.

[Esosa · Rating 3 out of 5]

a retired U.S. politician shares insights into his life as a caregiver for his wife who was diagnosed with Alzheimer’s.

he talks about his two Elaine’s - the version of her before the disease and the version of her after.

this book aims to let others in similar positions know that it’s okay to ask for help, shares reminders on prioritizing your own health & tips on how to deal with the really trying times.

this book is quite short, I thought there’d be more personal stories about Elaine but it was really more of a self help guide for caregivers.

Definitely a helpful book for those that might be going through a similar situation but from the synopsis I was under the impression that we’d be learning more about Elaine as well.