The FTD journey is an emotionally taxing experience, with feelings of guilt, anger, resentment, and frustration accompanying an acute sense of loss. Grappling with these feelings is difficult, and caregivers may benefit from reframing how they think of their FTD journey, and the experiences along the way. Recently, Scott Rose — a former FTD care partner for his wife, Maureen, and current support group volunteer — took to Facebook to share his insight into finding grace on the FTD journey. His post has been adapted, with his permission, for Help & Hope.

I find it unfathomable that my Maureen has been gone three years now. I planned out the part where I would be with her through the end, take care of arrangements, and honor her well at a Celebration of Life. I did not plan out the rest of this — not at all.

This week, I took my first real vacation since Maureen and I went to Mexico five years ago this month. She never traveled again, save for a three-day weekend to Disneyland that was enjoyable, but included more time spent keeping triggers at bay than relaxing. Again, still good memories.

So I went back to Mexico this week, picking up where we left off. This last Monday, on the anniversary of her passing, I lit a candle on our beach south of Cancun and sat there for a long time. I thought about our beautiful life together. I thought about the FTD journey – but, really, just the best moments of it. I avoided second-guessing how we approached it, but instead focused on how we celebrated the ordinary moments. I thought about the day she passed, a day both tragic and beautiful in that we were together during her last breath. I thought a lot about these last three years without her.

I have not “moved on” as so many well-intentioned people have suggested that I do. I would say that I have “carried on.”

When Maureen and I first traveled, we tended to take all but the kitchen sink, as I am an amateur plumber at best. As the years rolled on, we carried less and less on our trips – really taking just the essentials. We enjoyed the trip all the more, not bogged down with the extra baggage – a bit freer.

With great effort, I have released the negative, self-deprecating feelings of inadequacy at not being able to “cure” Maureen, or at least find more innovative ways to help her. I instead just carry the beautiful memories, the lessons learned, and a curiosity about the next day. I still grieve and have a sadness to me every day. I miss her. I always will. I also laugh, talk with close friends, work, take care of the home, and yes, even travel a bit again. Though I carry my grief and my torch for Maureen, in many ways I carry less these days. Petty things are just not important anymore. I let far more just go.

I enjoy sharing the FTD message with those that will listen, as it is something bigger than me. I am honored to have been asked to speak at another caregiver conference next month. It gives me joy, telling more people about Maureen, our journey, and FTD. I would not have pictured myself doing this in 2015, when dementia was the furthest thing from our lives. However, here is where my travels have placed me.

I would encourage each of you on your individual journeys as either FTDers, caregivers, or grievers: “Carry on.” Carry the things you need and let go of the things you don’t – guilt, shame, anger, resentment… let it go. Those things don’t make your trip any easier.

Love lifts us up. I remember in my most overwhelming caregiving times, I would see something in Maureen that would remind me of the importance of just being there in that moment. That love would slowly ease the stress. You are doing well. Carry on.

Scott Rose shares his and Maureen’s journey together in the memoir We Danced: Our Story of Love and Dementia, which is available on Amazon in paperback, hardcover, and as a Kindle e-book.