From the first time I laced up my stiff leather boots and hiked up the Lions in Vancouver, Canada, I was hooked. I love the challenges of a steep climb. The harder I work, the more I sweat, and the more my thighs burn, the sweeter it is when I reach the top of the mountain – the place where I feel free, without a care in the world.
But one day something went terribly wrong. It started with a light mist and soon the fog surrounded me like a thick blanket. I was spinning in circles, frantic for a way out.
Suddenly I woke up and realized I'm not hiking. I am sitting in a doctor's office and he is telling me that my husband, Dave, 57, has Frontotemporal dementia. He scored average on math tests, but well below in language and problem-solving. He shows me the CT scan with blackened areas filled with fluid, where Dave's brain is dying. I feel like I am floating, half listening to the doctor as he talks about wills, power of attorney, and … no hope for a cure.
It has been 3 years since I started climbing the most challenging hike of my life. At first I denied my reality. I was bushwhacking through dense underbrush, thinking I had to be tough. If I worked hard enough, I wouldn't feel the pain and grief of losing my husband of 31 years.
Last year I reached a point when I was sick of hanging on by my fingertips. I wanted to do more than just survive this journey. With the help of friends, life counselors and months of soul searching, I started letting go of tears I had carefully buried. I recognize the emptiness when I see couples in their 50s holding hands, or traveling in their motor homes. I had no idea how much I miss the emotional and physical intimacy of being a couple.
To fill the voids in my life, I make time to go out with friends-to laugh and talk about something other than the weather and which way the clouds are moving. I am learning to balance 'doing' and 'being'. Every day I exercise, eat well and spend time 'alone' to recharge my soul. Meditating – morning and night – helps to calm the chatter in my brain. When I write in my gratitude journal, it reminds me of what I have in my life, instead of what I don't have.
Changing my perspective is helping me to find humor when Dave asks if he should put the box of Ziploc bags in the freezer because there is a picture of steaks on the front; or when he can't find words and tells me about the 'helmets' (cow skulls) on the trail, and Halloween … 'the social where people go from room to room'.
Living with dementia isn't easy. There are many times when I wish for a more stable and predictable life. Answering hundreds of questions (how, what, why) is testing my patience far more than raising two children. But I am noticing how much it helps me in other parts of my life-dealing with sales people who are having a bad day, or flights that are delayed. This journey is challenging my ability to adapt … to be flexible … and to stop resisting something I can't control (Dave's seizures in a restaurant, or passing out in a standing position on a brick patio).
Traveling this path with dementia is the hardest climb of my life. It is also the most rewarding. I am feeling a deep sense of calm (which I did think was possible) and a knowing that I don't have to be on top of a mountain to be free.