We Danced: Our Story of Love and Dementia
by Scott Rose
Love sustains. Dementia impacts the mental, physical, financial, social, and spiritual health of everyone it touches, but love endures that storm.
I was so unprepared for the unconditional love that my wife Maureen provided me when we first met but even more so to have it ripped away years later by Frontotemporal Degeneration (FTD). While much of our book outlines our FTD journey from symptoms to diagnosis to care to the daily dance, it is first and foremost a love story.
I collected our cards, notes, journals, and jotted musings into our book as a means of sharing with the world Maureen’s beautiful soul. I also want to raise awareness to this form of dementia that ravages an ever-growing population. The level of my daily detail that chronicles the manifestation and progression of Maureen’s dementia expands with each painful chapter. I offer mileposts along the journey and dive deeper into relational, financial, legal, and medical topics that I know others remain curious about or find themselves facing now.
I think on all that we built – metaphorically and physically. She found a wooded site for our home that we designed, had built, and finished ourselves – the dream home as it were to welcome her grown kids and growing grandchildren for the creation of cherished memories. I lay bare the later financial toll the sickness took. Her increasing care costs devastated our finances to a point that I placed our beloved home up for sale. I changed jobs to balance my time caring for Maureen while maintaining a needed income that the unforeseen financial burdens still outpaced. I bobbed and weaved the monetary impacts best I could. I likened it to our ballroom dancing and our pivots and swings. I watched all the things that we built start to fade as things do, but saw our love remain – the most important aspect of our life together. Despite communication barriers and behavioral crashes, we sustained that love till, and through, her last breath, with me weeping at her bedside.
I now stand alone in our home that did not sell, but maybe that was the way it was supposed to be – me surrounded by the memories we created down to the tree in our yard with our initials inside a pocketknife heart. Alone, I re-build finances, maintain memories, and write . . . but for whom? My stewardship to her memory I use now to connect to others that are still trying to understand FTD symptoms, care, diagnosis, and the elusive cues to its progression. I hope our book helps others to still see their loved one beyond the disease.
I call this “our book” as Maureen’s words run infused through the narrative in letters, journal entries, poems, and spoken words as much as my own. Even in her waning days where words were scarce, she managed a look into my eyes and softly whispered, “We are us.”
BIO 
Scott Rose cared for his FTD-stricken wife, Maureen, for three and half years till her passing in 2019. Scott has facilitated a regional caregiver support group in the Portland, Oregon area for nearly three years as a volunteer for AFTD. He also published his first book, We Danced: Our Story of Love and Dementia. It is written as a memoir with caregiving tips and mileposts recounting symptoms and events through real-time journal entries. Scott continues to raise FTD awareness through book readings, talks, and podcast interviews with “Being Patient” and “Remember Me” regarding love, companionship, and dementia. He was asked to speak on panels at the 2019 and 2022 AFTD National Conferences.
SOCIAL MEDIA
Website: www.WeAreUs.net
Facebook: We Are Us | Facebook
