We often struggle to talk of ourselves. I suppose if I tell you that I am in my fifties, raised and reside in the Portland, Oregon metro region, and own a home on a forested site, you will paint your own mental picture of me to go along with the literal one here.
What neither tells you is how my life was changed in 1996 and how it has changed since 2016.
In December 1996, I started dating Maureen, who would later become my wife. It was then that I started to appreciate someone beyond myself. It was then that I found true love really for the first time. I could tell by the way I devoted my thoughts and my actions to her happiness and by how I felt with her near me. We did everything together with the same reckless abandon as a couple completely smitten.
In early 2016, the love of my life showed symptoms of dementia, and that forced me to view the world different still. There was a profound impact that we neither wanted nor could control. I found myself shuffling away everything else that I thought was important to me and shrinking my view to just Maureen’s care till she was gone.
During her illness, after she passed, and still now, I connect to the FTD world in her honor. I facilitate a dementia caregiver support group, I released our book on our life together, and I continue to raise funds and awareness for this horrible disease.
I speak at conferences, on podcasts, and live virtual interviews – pushing out the information about my wife, FTD, and how to still build connections with your loved one during caregiving.
Mostly, I continue to love and remember Maureen and share her story as the steward of her memory.
AFTD Education Conference Speaker: 2019 and 2022
Guest Speaker 2023: Chapman University, Dept. of Communication Sciences & Disorders – “The Personal Side of PPA”
Washington County Health & Human Services 2022 Annual Conference Speaker: Celebrate the Ordinary – The Joy of Caregiving
Being Patient Podcast 2022: Scott Rose on Love, Companionship & Dementia
Remember Me Podcast 2021: Maureen
We Danced: Endorsed by Teepa Snow MS, OTR/L, FAOTA, CEO and Founder of Positive Approach to Care AND added to the Rosalynn Carter Institute Library
To borrow from my book,
“Maureen Patrick-Rose warmed hearts with her gentle smile until her passing October 10, 2019. Her spirit softly touched so many lives but always in a simple, understated way. Unless of course she knew you well; then laughter and gaiety ensued. Her life, love, and sickness warranted telling grand stories as both inspiration and life lessons. Her nature, though, would command nothing more than a heartfelt nod of remembrance on a special holiday. That nature made her all the more beautiful and her story all the more worth telling.
She never let life make her cynical. She remained hopeful and grateful. She saw the wonder in things, whether big or small. She delighted in the spectacles of Niagara Falls and the Grand Canyon as well as the simple pleasures of a single rose in her garden or a field of tulips. She would chase whales off the Kauai coast and stand silently gazing at a hummingbird among her Fuchsia. Maureen cherished the brush strokes of Monet and rode a bicycle through the French countryside. She relished coffee chats with old friends and rocking her firstborn grandson as he slept. She saw the beauty in all things. She allowed herself to be amazed. She allowed herself to feel the awe of it all.”
Maureen contracted dementia sometime early 2016 and battled with it for nearly four years. I provided caregiving each day, even when her condition forced me to place her in a care facility.
On August 29, 2019, Maureen with very few words at that time and mostly just word salad, responded to me as I dressed her in pajamas and laid her to bed. I told her as she started to drift off to sleep that I would love her always. She looked up at me with such intent and spoke softly, “We are us.”
I wear that on my wedding finger now and dedicate this site to her words.
Frontotemporal Degeneration (FTD)
US must also include our FTD community at large.
What is this FTD about anyway? You might have Googled dementia care and this site popped up. As you read on, you may decide you or your loved one really has symptoms not at all like what I describe here, or maybe they are spot on. I know I had never heard of FTD before a neurologist diagnosed my beautiful wife in June 2016. Then I read. I read a lot.