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The Harder the Climb – The Sweeter the Prize

From the first time I laced up my stiff leather boots and climbed the Lions in Vancouver, Canada, I was hooked. I like 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 fog and soon the fog surrounded me like a thick blanket. I spun around frantically trying to find a way out.

Suddenly I woke up and realized I wasn’t hiking. I’m 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 scanner with blackened areas filled with fluid 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 recovery.

It’s been 3 years since I started climbing the toughest hike of my life. At first, I denied my reality. I was in the bush through dense underbrush, thinking I must 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 where I was tired of hanging on by my fingertips. I wanted to do more than just survive this trip. With the help of friends, life counselors, and months of introspection, I began to shed tears that I had carefully buried. I recognize the emptiness when I see couples in their 50s holding hands or traveling in their motorhomes. I had no idea how much I missed the emotional and physical intimacy of being a couple.

To fill the voids in my life, I make time to hang out with friends, laugh, and talk about things other than the weather and the direction 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 evening – helps quiet 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 perspective helps me find some 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 his words and tells me about the “helmets” (cow skulls) on the trail, and about Halloween… “the social 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) tests my patience more than raising two children. But I notice how much it helps me in other parts of my life – dealing with sales people having a bad day or delayed flights. This trip is testing my ability to adapt…to be flexible…and to stop resisting something I can’t control (Dave’s tantrums in a restaurant or fainting in standing on a brick terrace).

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 awareness that I don’t need to be on top of a mountain to be free.

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