We Danced: Our Story of Love and Dementia

by Scott M. Rose

The subject of this book revolves around the life of my wife, Maureen, who died October 2019. It opens with snapshots of her troubled childhood and early adult life in two difficult marriages. It quickly transitions to our first meeting, friendship, and relationship - not without their own complications. Through those trials, she showed tremendous strength and heart. We eventually married and lived a love story that others marveled at for years. We travelled, went to concerts, built a home, and remained completely devoted. While still in her early sixties, she lost a piece of herself. Words became harder to find. Steps to perform the simplest tasks became impossible to follow. We knew something was wrong but had no idea the severity of her condition. Our world turned upside down. The latter half of the book chronicles in exacting detail her diagnosis and life with Frontotemporal Degeneration, a dementia known as FTD. I cared for her for the three and a half years of this disease. Her mental state deteriorated rapidly. I changed to a more flexible job to stay with her more during the day as she lost even the most basic functions of eating alone, toileting, or using a phone. We still created tender moments and danced but she was losing a tremendous amount of weight and required greater and greater care. Financials not allowing me to quit work, I succumbed to the recommendations of multiple professionals and made the painful decision to place her in memory care. I visited her every day, two to three times per day, and we made the best of a horrible situation. We still shared many tender moments during this last year, including the moment I held her hand as she passed. The story is told in a vulnerable and unfiltered manner. It collects writings from both husband and wife through journals, letters, and social media posts integrated into the main narrative. It captures our real-life, undying love story through this incurable disease. "This book is a loving and thoughtfully written tribute to the author’s wife and their years together. The details of her journey with frontotemporal dementia and the author’s experiences as a care partner are presented in a manner that is truly illustrative of his devotion to her. The ways in which they continued to celebrate life after her diagnosis and the tips shared are valuable and beautiful insights for those living with dementia and their care partners."-Teepa Snow, MS, OTR/L, FAOTA, CEO and Founder of Positive Approach to Care®

Genres: Nonfiction, Psychology, Memoir

418 pages, Kindle Edition

Published May 3, 2021

About the author

Scott was raised outside of Portland, Oregon, where he still resides. He spent his career planning and managing the design and construction of schools and spoke in regional, state, and national venues.

His greatest joy was his marriage to Maureen. They travelled, loved, and danced their entire marriage. Scott cared for Maureen throughout her illness.

He contributes to the social media site for the Association for FTD (www.theaftd.org) and facilitates a caregiver support group as an AFTD volunteer.

Scott is interviewed for podcasts and speaks at dementia-based conferences.

We Danced has been officially endorsed by AlzAuthors (www.alzauthors.com).

To maintain Maureen’s legacy, Scott has also launched the website www.WeAreUs.net as a growing resource for FTD care partners. He links to industry leaders, posts events and news articles, and connects one on one with others on this journey.

He also still walks along the Oregon beaches where he and Maureen often held hands.

Reviews

[Leslie Walker · Rating 5 out of 5]

Scott’s writing is beautiful and personal. His love for Maureen is clear, as is his transparency about the losses and frustrations as frontotemporal dementia (FTD) steals her language and later her emotions and behaviors. What is most compelling is how he continues to see dignity in Maureen as a person and as his beloved wife, while most others, both family and care providers, see only the dementia.

This book would be useful not only for people who love someone with FTD or another type of dementia, but also for doctors, nurses, staff in hospitals and care facilities. Scott tried so hard to educate people not only about FTD in general but about Maureen in particular, and hardly anyone listened. May we learn from his experience and really listen to our patients and our loved ones, even when their language and other cognitive skills make it harder. This is an outstanding, powerful memoir.

[Katy · Rating 5 out of 5]

Scott writes beautifully and feels deeply. I read the first third of the book quickly, excited to learn more about Maureen's life. As a distant relative, probably 90% of her story and their story was new to me. Some parts heartbreaking, while other parts made me feel more connected to her and wishing I'd known her better. She wanted to go to college, wanted her ideas & opinions to matter, wanted to travel and follow her dreams - things she wasn't allowed to do in her youth due to the era, but things that I did, and do, unapologetically. I believe we have kindred spirits and she was born ahead of her time.

The latter two-thirds of the book, covers the FTD diagnosis and care. I took my time. I always had the feeling that Scott & Maureen had an affectionate, sweet love story where he doted on her and took extra good care of her; that they were good for each other. I could feel that in the few times I was around them. But I had no idea just how much better they made each other's lives and the lengths he'd go to for her. Their love story deserves to be in a book.

Along the way Scott teaches us about FTD, the symptoms and behaviors, the kind of care it requires and their trial & error along the way. His patience and tenderness is unbelievable. His dedication undeniable. I hope writing this book was therapeutic for him and that he will be able to start enjoying life again. Thank you Scott for both chronicling her story and raising awareness.

[T. Rose · Rating 4 out of 5]

I have been interested in understanding FTD and have read quite a bit on this devastating dementia. I have been curious to know how folks deal with living with loved ones as the disease progresses. I have seen other forms of dementia in my own family and know the heartache first hand of losing a loved one with it. It took courage for the author to share his life and loss in this book. I know the book will help others dealing with FTD and it will help caregivers and loved ones to know what may lie ahead for them.

[Amanda Goll · Rating 4 out of 5]

My mother had FTD and was diagnosed in her mid 50s. While her journey is not the same as Maureen’s, I couldn’t help but feel how deeply Scott cared for Maureen and it reminded me of the love my dad had for my mother. I couldn’t understand why dad would go every day t visit mom, after reading this and getting the perspective from a spouse, it helped me better understand. My mom had primary progressive aphasia so by her late 50s she could no longer read, write, speak or communicate with us in any form except for grunts. The only reason I didn’t give 5 starts was it seemed to be a little too long and dragged in certain places. Nevertheless anyone that has a family member suffering from FTD should read this! I can absolutely relate to the care mom got at the assisted living facility and how frustrating that was in that few understand or have even heard of FTD. I relate on many levels as a daughter.

[Keri · Rating 4 out of 5]

Well I sobbed my way through the ending, as I knew I would. FTD is an incredibly cruel disease, and Scott's love for his wife throughout and beyond her journey through it is a beautiful thing to behold. I've known Scott distantly through his advocacy work at the AFTD and his generosity to the #FTDhotshotchallenge, so getting to hear a very raw account of his life with Maureen was such a special gift. Full of as-it-happened accounts of caregiving, the rallies and falls of her final years, and so, so, SO much love - His descriptions of the horribly broken dementia care system and the agony of losing your life's love were particularly moving. I would recommend this book to anyone wanting to know a real, raw account of what it is like to love and care for someone with Frontotemporal Degeneration. #endFTD ❤️

[Marie Carmean · Rating 5 out of 5]

This book was wonderful and agonizing. It is a beautiful love story while at the same time it is an account of a woman's life and death with FTD, a rare type of frontal lobe dementia. Scott Rose cares for Maureen with a tenderness and total commitment that isn't often seen in caregivers. He tells of every aspect of her journey into this dark world, and his every step taken with her through it. He also talks about the reactions of others when she becomes so very ill, even members of her own family who, so caught up in their own lives, cannot be there for her. He accounts the way she is treated in the memory care center with detail as well. He gives advice and help to those who are facing this same journey with their own loved ones. How to prepare for losing your loved one; how to handle a myriad of situations. But more than a book of encouragement and help, it is a personal story.
There are so many beautiful moments between the two of them, even as she becomes frail and almost completely unresponsive. The title of the book is so perfect. Their love for music and for dancing extends into her time with FTD, even when all Scott can do is sway to the music and hold her. Her smiles tell him she knows who he is and feels safe and cared for. And for the beauty of their shared love, it makes the story even more heartbreaking, for he is slowly losing the woman of his heart.
I highly recommend this book to all caregivers of those with dementia, but also for those who wish to read about a love story that is strong and sweet and that truly reflects the words of our wedding vows: "In sickness and in health."

[amee · Rating 5 out of 5]

Beautiful, a true love story

Scott's writing is so heartfelt and real. I was unfamiliar with FTD prior to reading this beautiful story. As a nurse I feel like I will have a more compassionate understanding with my dementia patients as well as their family members. I also think I will suggest that perhaps nursing students and other healthcare professionals should read this book to gain a more empathic view. Thank you, Scott for sharing Maureen with us, I will never forget her.

[Maggie · Rating 4 out of 5]

Very emotional but also educational

I wept as I neared the end of this story of an amazing couple and the love they shared. How fortunate and strong they were to enable their love for each other to overcome FTD and ensuing death. At times the book dragged, but then so did Maureen (the wife with FTD) who fought so hard not to leave her husband alone. She lived much longer than any one had predicted. Her dance with her husband continued almost too long. A treasured read!

[Doris Wood · Rating 5 out of 5]

Thank you for sharing your journey with us.

So sorry for the loss of your wife. I went through this nightmare for five years.with my father. You have done an unbelievable job of allowing us to see your, love, pain, and joy. Bless you and your Baby. Oh and I loved your reference, " No body puts Baby in a corner

[Patricia Bostwick · Rating 5 out of 5]

heartbreaking, heart lifting, just simply a true love story

Maureen may and may not be the luckiest most blessed woman, wife there could be. To be sooooo loved and cherished by her husband. To be stricken with FTD. To have true devotion rarely ever seen this strongly. I’ve seen FTD in my own life. I feel like I know Scott and Maureen now. Bless you both

[Sandra K. Rodriguez · Rating 5 out of 5]

Beautiful!

Beautifully written true story. Maureen was a beautiful soul, and she and Scott had a wonderful marriage. Sorry to use the word "beautiful" so many times, but that's exactly what this book is

[Robin Levine · Rating 5 out of 5]

Heartfelt and captivating read

This book is excellent. It is well written and gives much insight into the phases of early onset dementia. Scott and Maureen seemed to have a fairy tale love story until sickness interfered. His writing is so very heartfelt. I love the way he chose to honor her memory with this story.

[Michelle Butler]

This is a true story of what “through sickness and health” means. Scott writes a very touching memoir about his time with his wife Maureen and her fight with her disease

[Aleta Proffitt · Rating 4 out of 5]

An amazing book of love. Scott was someone that loved deep and took his vows seriously. It had to be a hard journey, but he always cared for his wife and tried to make life joyful.

[Denise Bevan · Rating 4 out of 5]

Beautiful love story

I could only hope my husband would show me such love when I needed it. What A beautiful love story! It had me in tears

[Judy · Rating 4 out of 5]

The author remembers his time spent with his wife focusing on the last three years when she was diagnosed with FTD. A heartbreaking memoir as Scott slowly loses his wife Maureen.

[Angelis Huggins · Rating 5 out of 5]

Scott,

I absolutely love this Memoir you wrote about your love story and Maureen. Your devotion to your wife, her sickness and never allowing anything to hurt her dignity is truly a testament to ‘death do us apart’.
I hope you find peace and some form of happiness again for you deserve it!

I began reading the book yesterday and finished it today as I simply couldn’t put it down. 1/3 of the book is about the sad upbringing and life she experienced and had, which caused her a lot of pain and heartache. 2/3 of the book is about their life with FTD and how to live with it and find happiness in every moment.

[Donna Leary · Rating 5 out of 5]

Frontotemporal Dementia Takes So Much

I "know" Scott through the AFTD support group page on Facebook. I knew their story, but only just a little. I am glad I got to read this.

I have to admit that I am a little bit jealous. My loved one's behavioral version caused her to experience disturbing psychosis symptoms and to be very difficult to live with. Maureen's language-based version of FTD seems to me to have been gentler with anger only coming much later in her illness.

[Tammy Comeau Nadeau · Rating 4 out of 5]

Honest, caregiver first hand account of talking care of a spouse with FTD (a type of dementia). As a professional dementia provider, I appreciated his perspective and point of view that often isn’t considered when your on the other side. And hearing about another type of dementia that is not as well known about (such as Alzheimer’s) is worthwhile because each type of dementia is different, presents differently, and knowing and understanding that is one of the first steps in providing patient centered care. Scott’s account of his wife is inspiring.

[Cindy Odell · Rating 5 out of 5]

This book will make you laugh, it will make you cry. Above all, it will touch your heart. You will learn about a disease you never heard of and wonder why not.
It should be mandatory reading for any caregiver, friend or family member whose lives have been touched by dementia.
Scott Rose, you are the epitome of a story teller and such an example of true love!

[Christian Blackwell · Rating 4 out of 5]

As a healthcare provider and learned a lot from the caregiver's perspective. I hear these nursing home challenges all the time and truly see no easy fix for organizations that have a lot of transition which is truly sad for the patients they care for daily. I did feel the book could have been shorter, but overall enjoyed it. Thank you, for gifting me the book and I plan to share it with someone who may be going through the same situation.

[Holly Kemp · Rating 5 out of 5]

Loved this story… Maureen was loved to the end and beyond .. loved that Scott had the patience with his wife and connected so well with her through it all. Rip Maureen

[Kacie · Rating 3 out of 5]

I have mixed feelings about this book. Scott's writing style was slow, which made it difficult to hang on. I also felt as though he exposed conflict in family relationships that were not his to expose. How he speaks about Maureen's daughter, son and mother, at times feels awkward and icky. I respect that Scott attempted to write this memoir from Maureen's perspective just as much as his own, but I wonder if there were family wounds that were made public unnecessarily, like he broke the unspoken rule of "I can say whatever I want about my family, but you can't." The regular negative comments towards them made me want to stop reading completely.

The saving grace of this book is that each page that detailed Maureen's experience brought with it memories of my grandmother who passed from dementia, and the last few years of her life. In that respect, I didn't want to put this book down. Scott's descriptions of Maureen's symptoms and experiences make me wonder if my grandmother actually had FTD. Though heartbreaking to see someone you love not be able to communicate, it was sweet being able to relive some of those memories with my grandmother in detail.

"You recognized them as safe people, and sometimes that is enough." <3

[Christina · Rating 3 out of 5]

Well written story of one's grief

I felt like the author wrote this for himself, and although there is nothing wrong with that (hopefully it helped him cope), I feel like the story would have been completely different in anyone else's point of view. What I mean by that is he had nothing good to say about anyone else in Maureen's life, whether it was her kids or her mother. Yet he constantly made himself out to be some saint who never raised his voice or got upset or angry. It's not the workers fault that they were not trained on how to deal with FTD.
The author kept saying that this is not dementia and that the care facility was treating Maureen as she did have dementia when she did not, but yet dementia is in the book title, kind of confusing.
I'm not sure I believe that the author was truly as wonderful as he wanted to make everyone believe.
Otherwise the book was easy to read, easy to understand, and I hope it helped the author believe what he wanted to believe.

[Kathleen · Rating 2 out of 5]

I don't know... I just felt that the author spent way too much time making sure we all saw him as the all-giving, completely devoted husband who did nothing but love his wife and wait on her hand and foot, giving into evey whim. It's just not believable. Being a caretaker is one of the hardest jobs there is and I feel like Mr. Rose set out to make sure we see him as a martyr. Sorry, but nobody, and I mean nobody, is as understanding 100 percent of the time, as this man makes himself out to be. It would have been better if he shared his struggles, his frustrations, disappointments, anger, sorrow, etc. Instead we get a book that makes it look like Mr. Rose will be the next saint who will be beatified by the Catholic Church. Don't get me wrong, I love a good love story but Mr. Rose would truly have to be a living saint to get through these challenges without feeling those emotions I listed. Not buying it.

[Christy Thedorf · Rating 4 out of 5]

This was a great book that was very informative about FTD and dementia. Two people close to me have recently been diagnosed with dementia, so this was very informative to learn more about this horrible disease.

Shame on Maureen’s children. What a disgrace that you would leave your mother hanging high and dry like that and make Scott do everything. I’m sure there’s two sides to every story but if this book is the truth, they should be ashamed of themselves.

Now my negative. Scott way over the top with the affirmation about how much he loves his wife and all the words he uses to describe how much he loves her. Way over the top! We get it, you love your wife!You don’t have to tell us every other page.

[Brittney Carven · Rating 5 out of 5]

For eight years, I struggled with Alzheimer’s, feeling lost as it stole my memories and clarity. Conventional treatments failed, and I felt hopeless. Then, a friend recommended Earth Cure Herbal Clinic(www.earthcureherbalclinic.com), and though I was skeptical, I decided to try their natural remedies. Slowly, I began to regain my memory and mental clarity. It wasn’t an instant fix, but over time, I felt my mind clear and my sense of self return. Thanks to their treatment, I’m no longer defined by Alzheimer’s. My journey proves that even in the darkest moments, there is hope.

[Colette Winfrey · Rating 3 out of 5]

poignant memoir

Too many details weighed down the story
Excellent education about FTD!
Ultimately a live story
A guide to be a caregiver never succumbing to the challenges
Ambiguous grief.
I highly recommend

[Jean Thurmond · Rating 4 out of 5]

I felt over whelmed and a sense of doom before reading this. Book now my anxiety and feelings have changed with the understanding of knowing my feelings of isolation was wrong knowing someone else has gone through.

[Kate Warren · Rating 3 out of 5]

A story about love

Having had the experience of caring for my mother who had dementia and losing my husband to lung cancer, I understood the deep love and pain the author was feeling. Any form of dementia is a cruel loss of the person you once knew. Scott’s account of his wife’s illness was long drawn out and became tedious for me to read.