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Our Journey: Part 1 – Where we started

My husband, Robert, was diagnosed with Frontotemporal Dementia (FTD) in 2017. Most people think of Alzheimer’s disease when they hear the “D” word. But dementia is an umbrella term that includes Alzheimer’s, FTD, and other diseases in its canopy. FTD affects people who are younger, sometimes, frighteningly, in the prime of their lives. Frontotemporal dementia is not the same as Alzheimer’s; the parts of the brain impacted are different, and both the symptoms and the course of the disease are slightly different. With Bruce Willis’ recent FTD diagnosis, perhaps more attention will be focused on FTD, and that would benefit all individuals and families dealing with this tragic disease.

Creeping dementia

Robert’s dementia snuck up on me. I question how I could have missed so much. Had I been a bad wife? Was I not completely present in our marriage? Or was it rather a case of slow-moving changes that can’t be seen by those living through them? Like when your children mature…your firstborn is your baby, your little sprout…until your secondborn arrives and you realize how much your first has grown.

Our marriage

I’ve always been unapologetically Type-A, assertive, in charge, the primary breadwinner. Robert was our parent at home, the soft one, the creative one, the one I relied upon to keep the house humming, the one I didn’t always pay attention to. Our marriage hadn’t been perfect, but it was very good. We cultivated a solid, effective division of labor, we loved our kids, and each other. Some things were missing in our union, but in time we got used to the ebb and flow of our lives together and the missing bits were washed over, their edges rounded and softened, not enough to trip over on most days. The marriage worked and we had enough. 

Robert and I are still legally married, but we haven’t had a marriage for a number of years now. In 2021 I made the difficult decision to move Robert to a memory care facility. He has been living outside our home since May of that year. 

Why I’m writing this blog

This blog is in part about why and how I placed Robert in a home. It is about how I manage grief without an ending. But it is also about how I have rediscovered myself and created a life outside of and with my ongoing relationship with my husband…who is “here and not here” at the same time. I hope these stories ring true to other people navigating this terrible disease. The journey is lonely, often sad, sometimes funny, frustrating, and always educational. I also hope that speaking about my experience will help others find permission to keep on living with all the travails and joys this life can offer.

Next up…Our Journey Part 2: Signs of trouble

 

1 thought on “Our Journey: Part 1 – Where we started”

  1. Hi Sharon, glad I caught your post on Facebook. Wonderful idea to document your experience. I hope it will serve to help you come to terms with all the difficult emotions. I know it will help all of us to get some insight. Love you, Laurie

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