We Are Us

Day 7 of World FTD Awareness Week: For now, THIS is where FTD leaves us: with loss but also beautiful memories. It does not have to be this way for others. Please go to www.theAFTD.org to learn more and, if you can, donate. Dementia has affected most of us by knowing someone with dementia, caring for someone with dementia, losing someone from dementia, or living yourself WITH dementia. That means, we are in this together. To quote Maureen just 6 weeks before she passed, “We are us.” Bless you all.

What do Terry Jones (Monty Python troop), Glen Campbell (country singer), Charles Grodin (actor in Beethoven), Peter Falk (title character in Columbo), Bruce Willis (countless films) & Wendy Williams (broadcaster & writer) have in common? They died, or are dying from, Frontotemporal Dementia.

An estimated 60,000 people (just in US alone) have FTD right now.

As you know, my Maureen died from FTD (pictured here today 5 years ago, and just 18 days before she passed). I have lost count of the hundreds that I know have died from FTD since I connected with AFTD just 6 years ago.

DID YOU KNOW, FTD progresses faster than Alzheimer’s?

DID YOU KNOW, today is the first day of FTD Awareness Week? Learn more at www.theAFTD.org and, if you can, donate. Thank you

Sunsets in Mazatlán

On a long-overdue vacation, I sat on the beach last night in Mazatlán and listened to the waves crash over and over, smelled the wind carrying that saltwater aroma, and squinted my teary eyes at the wonder of how much time has passed. It has been exactly 4-1/2 years this morning since my wife Maureen died from FTD. Like the tenth of every month, I light a candle (apparently “la vela”, as I was told when I went searching for one). This routine helps me to manage my still-present grief.

Many of us are managing some aspect of grief, whether anticipatory, just after loss, or much after loss. We find ways to live with our grief, to cope, and to even draw from it when we need to.

Here in Mazatlán, I see my grief as that coastal wind. We were always drawn to the beach, so it makes sense that it talks to me now. You stay in one place long enough, and you get used to the patterns, but gusts can still surprise you and stir things up that you do not expect. Sometimes you can use it to lift you up, sometimes it takes your breath away, and other times it drops something into your eyes, forcing you to have a good cry to flush them out.

Maureen and I travelled to tropical coasts every single year of our marriage – often ending up in Mexico. She liked the laid-back nature of Mazatlán because that was her – easy going and simple tastes. Her fun and passion came from walks along the boardwalk, window shopping (often buying), and gently splashing warm ocean water with her sand-covered toes while I carried her sandals in one hand and held her hand in the other.

While Mazatlán is growing and changing, I barely notice. Grief gives me focus. I partake of the best of our memories:

I dine at the thatched-hut beach palapas chuckling at how Maureen would say the food in those tastes the best. “They catch it right there (pointing to the ocean) and cook it right here - fifty feet away!”

I hire drivers of the golfcart-like palmonias where her hair would blow straight back with her wearing her Maui Jims like a move star. I chuckle every time they slow way down for the topas – severe speed bumps that jolted her into giggles.

I saunter up and down old town’s boardwalk with all the people-watching that fascinated Maureen and see the surprised tourists over the bold seagulls – dive bombing the food out of their hands. All I could think of was Nemo’s gulls, “Mine! Mine! Mine!” Maureen watched that movie a hundred times with her granddaughters – and mimicked those gulls every single time like it was new.

I hang around the Plazuela Machado – taking in the old-world charm of this town square where time stands still. Open air markets and restaurants grow with each hour, only to compress again by morning and do it again. I smile at how many times Maureen just gave me a look and a grin and I knew, with very little Spanish, I had to convince the waiters to make her margarita with blue curacao because, “it just tastes better blue”.

These memories make me both smile and tear up, warm and long for. Again, that is how I process my grief (maybe others do too). I turn and face the wind and let it lift me up, take my breath, or bring me a tear. All is ok – all is welcome.

We need not beat grief. I treasure how it makes me feel EVERYthing.

Last night, I thought on these 4-1/2 years since I held Maureen’s hand as she breathed her last and silently slept forever and stared at the sunset in front of me. I remember those evenings on the beaches with Maureen and have no regrets - no “if only’s”. We did a lifetime’s worth of loving, and grief is part of that promise. It is a happy-sad, a holding tight in absence, a wind whispering soft nothings, and a Mazatlán sunset warming my face and drying my tears for another day.
Best to you all.

This morning, my interview with Pete Hill played on The 'D' Word on UK Health Radio. I was thrilled to speak with them about my wife Maureen and our book, We Danced: Our Story of Love and Dementia. The link is here (once at the link, you have to tap the headphones above his picture): https://ukhealthradio.com/.../pete-talks-to-author-scott.../