Getting Real

Sharon

Getting Real

Sharon
I feel as though I was "checked out" for a couple of months when I broke my femur. I guess my mind could only handle healing the femur. Now that I am getting back to normal, it seems things are getting so real in our world.

We are having our garage door openers replaced today. This caused us to have to move things out of the garage for them to do the work. As I sat in the garage, Rod would pick things up, look at them and put them back on the shelf. He just could not seem to throw away the unused paint rollers, the tile separators, the caulk gun, the boxes of screws, and the numerous other items of our intense DIY days. It broke my heart.

Rod and I were always doing something in and around the house. Rod, almost single handedly updated our bathroom 9 years ago. We are talking down to the bare walls redo. When I look back at that time, I saw little glimmers of things to come during that project. He would get frustrated easily, but I put that off to him doing the project after working all day and on weekends. I chalked it up to fatigue. Hindsight really is 20/20. Those were the beginnings of what we now deal with daily, frontotemporal degeneration (FTD).

I look at our backyard, which was a picture perfect oasis. Rod made three terraces that are over 100-ft long and moved every railroad tie himself. He installed a pond and waterfall. He put in stone stairs and two patios. We spent many dinners sitting on the patio, eating dinner and listening to the waterfall. It is now overgrown. We had to pay someone to remove everything that invaded the space. My thought was, Rod could maintain it if it was cleaned out. I am an incurable optimist.

I am now sitting here looking out the window, as I type, at all the tools and supplies we used to use to make our home a place we loved. They are sitting in the driveway to make room for the garage door opener installer. Part of me wants to put a large FREE sign in the driveway and let someone come take it all away. Remove those things that now cause such pain, knowing that they will not be used again. Remove the lump in my throat when I think of the happy times we spent sitting on our patios, enjoying life, thinking what retirement would look like when we could sell our home and travel around the country in an RV. Remove this ache in my heart looking at a husband that is not the man I married. Remove this stigma of dementia that makes people disappear from our lives. Remove his inability to find words. Remove his anxiety in crowds. Remove his constant leg shaking. Remove his blunted emotions. Remove his disinhibition. Remove the trying to stay a step ahead and anticipating problems before they happen. Remove this daily grieving of a living person. Take it all away. Haul it off, out of my sight.

We are in a new normal. One more step on our journey through FTD. Giving up harder work because of taking it easy is not what this is, this is a stolen life. My robust, loving, caring, funny, smart, figure anything out that needs figuring out, husband is gone. A glimmer remains now and then. We try our best to find good in every day. We try to laugh in the face of adversity. We soldier on, what choice do we have?

I can't think about the really hard things coming our way. I always say, do not get ahead of the disease, but as I sit here looking at our life in the driveway, I wonder what tomorrow will bring. I wonder if anything I do to raise awareness of FTD, and dementia in general, will make a difference. I have to keep hoping that my one voice will inspire many voices and those many voices will inspire a cure. But for today, I mourn the losses. Tomorrow, I will fight again.