From the first time I laced up my stiff leather boots and climbed into the Lions in Vancouver, Canada, I was hooked. I love the challenges of a steep climb. The more 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 mist wrapped around me like a thick blanket. She was going around in circles, frantic to find a way out.
Suddenly I woke up and realized that I am not hiking. I am sitting in a doctor’s office and he tells me that my husband, Dave, 57, has frontotemporal dementia. He scored average on math tests, but far below in language and problem solving. He shows me the CT scan with blackened, fluid-filled areas where Dave’s brain is dying. I feel like I’m floating, half listening to the doctor as he talks about wills, powers of attorney, and… no hope of 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 crawling through the dense undergrowth, thinking it had to be rough. If I worked hard enough, I wouldn’t feel the pain and sorrow of losing my husband of 31 years.
Last year I got to a point where I was sick of hanging by my fingertips. He wanted to do more than survive this trip. With the help of friends, life counselors, and months of soul-searching, I began to shed tears that I had carefully buried. I recognize emptiness when I see couples in their 50s holding hands or traveling in their RVs. I had no idea how much I miss the emotional and physical intimacy of being a couple.
To fill in the gaps in my life, I make time to go out with friends, to laugh and talk about something other than the weather and where 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 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 find the humor when Dave asks if he should put the box of Ziploc bags in the freezer because there’s a picture of steaks on the front; or when he can’t find the words and tells me about the ‘helmets’ (cow skulls) on the road, and Halloween… ‘the social event where people go from room to room’.
Living with dementia is not 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 much more than raising two children. But I am noticing how much it helps me in other parts of my life: dealing with vendors having a bad day or flights that are delayed. This trip is challenging my ability to adapt…be flexible…and stop resisting something I can’t control (Dave’s seizures in a restaurant or passing out standing on a brick patio).
Walking this path with dementia is the hardest climb of my life. It is also the most rewarding. I feel a deep sense of calm (which I didn’t think was possible) and a knowledge that I don’t have to be on top of a mountain to be free.
