‘Letting Go’ of Fear Eases Caregiving

When my husband, Dave was diagnosed with Frontotemporal dementia (FTD) 3  1/2  years ago, I was terrified. I didn’t know how we were going to manage with a disease more dreaded than cancer. With cancer, there is hope of a cure or remission. With dementia there isn’t any.Bestselling author Byron Katie says…” there is no greater illusion than fear. It’s caused by believing what you think. It’s always a story of a future, projected from our past.”

Living with dementia continually tests my ability to let go of fear. It challenges me to let go of worries such as: will I be able to afford Dave’s care in the later stages; will I be able to handle the increasing responsibilities; or will it take a toll on my physical and mental health. It challenges me to stay present and live for today, so that I can enjoy what I have right now.

Every time I face a fearful situation, it is a chance to ‘rewire’ my brain to respond differently. These tests are not always about living with dementia. I had a situation this past winter with our dog and a pack of coyotes…

It is 8:15 pm (pitch-black outside) and I am taking our Springer spaniels out for their nightly pee. They are hunting dogs with an acute sense of smell. Our youngest dog, Emma, catches the scent of a coyote and charges after it. I scream and whistle–pretty feeble whistler, but somehow I manage. By the time she comes back, my legs are jelly and my heart rate is over 200. Within seconds of coming inside the house, I hear a pack of coyotes yipping from the same spot where Emma had chased it.

Their game is to lure prey into their circle for an easy attack. My mind is racing because I keep thinking about what ‘almost’ happened, and what ‘could’ have happened. It takes me a few minutes and several deep breaths to calm down enough to realize that everything is fine. Emma is alive, and safe inside our house. Byron Katie’s message is playing loudly inside my head…fear is only what I think. When I really listen to my inner voice, I feel relief as I am letting go of the ‘emotions’ attached to my story.

Living with dementia is a much larger story than the dog-coyote one, but the lesson is the same. When I feel sick to my stomach because I have flashes of what the ‘end’ stage of this disease looks like, I bring myself back to the present moment. Right now, Dave is healthy and relatively independent. He is able to dress and take care of his personal care (with reminders to change clothes and have a shower every few days); he is able to work on his jigsaw puzzles; and he can still communicate, although his conversations are simpler.

There may not be hope for a cure for Dave’s dementia, but there is hope for a quality of life–we are living it. In many ways I am grateful to dementia and the challenges it presents because it is forcing me to let go of what I can’t control, and to let go of fear which is…”a story of a future, projected from our past.”