Give It a Voice

by Ginnie Horst Burkholder

When I met with these groups during the first years after the LBD diagnosis, I began to grow and heal.

We met for lunch in the darkened Macaroni Grill where the music was too loud for my sensitive ears. There were four of us wives: caregivers for husbands with dementia. I remember little about our time together except that I had a soft spot in my heart for Angie, who had been a teacher like Nelson and had especially connected with him. Only a few months later a phone call informed me that Angie had unexpectedly passed away. My first thought was of that lunch because that was the last time I had seen her.

A caregiver asked me recently, “How do I handle the fear that my husband's illness will actually kill me?”

The fear is legitimate. According to the Journal of American Medical Association, “If you are a spousal caregiver between the ages of 66 and 96 and are experiencing ongoing mental or emotional strain as a result of your caregiving duties, there’s a 63% increased risk of dying over those people in the same age group who are not caring for a spouse.”

When we caregivers hear a diagnosis that predicts years of decline for our spouses, we have usually already been struggling for some time with the confusing new dementia-driven behaviors they display. The need to focus on changing roles and accommodating the illness keeps us occupied, and it can be impossible even to begin to think about our own long-term health. What happens to our spouse’s fears and grief or what happens to our own fears and grief just doesn’t make it to the top of the list.

But I think how we handle our fears and grief may be a determining factor in our survival, in which case it becomes a monumentally important issue.

I’m nearly twenty years into living with a spouse devastated by symptoms of LBD. During the first ten years, my fears were big, multiple, unnamed, and paralyzing. I was the kind of person who wanted to be in the background blending in and letting my very capable husband be the projection of who we were as a couple. I loved listening to his stories and feeling the camaraderie that he facilitated in any group of which we were a part. I could project myself away from him, if needed; I dug my heels into some peace and social justice causes that he didn’t have time for, but I preferred to have him with me.

When he was diagnosed, the world suddenly felt lonely and hostile. I couldn’t have verbalized it then, but I became, at age 52, a very lost little girl. It just couldn’t be. I truly believed that I could not survive. I had recurring dreams of being lost on the road or in a big city and unable to find my way home.

Of all the events in my life, the one in which I have unwaveringly seen God’s hand was the provision of a Sunday School teacher who seemingly came out of nowhere and began to help me name and face my fears. They were many. “Give it a voice,” she said to me over and over again. At first, even my tears were silent, with gulps and swallows to keep them down. But with her encouragement I began to “give it a voice.” I began to peek into a black hole of fear and grief and give words to what was there. “There is no one to help me. I am not important. I will always be alone. No one can love me. I can’t do this. I’m not enough. No one cares. I have to do it alone. I can’t ask for help. I will always be inadequate. I will never figure it out. I’m stupid.” On and on. Naming my fears was the first step to awareness and giving them a voice.

I began journaling. I spoke without edit to the page, not to share my words with anyone, but to increase my own self-awareness and to give voice to the fears and grief. I wrote every day, three pages or more, for months. Sometimes it became a prayer journal. Sometimes it became a letter to my inner self. That frightened little girl that had come back to haunt me.

I met with another support group facilitated by a mentor. As we did in the Sunday-School-class-like-no-other, these group members also learned to speak and listen to each other’s fears, at the same time looking for the false beliefs and nurturing each other to support healthier ways of thinking. Speaking our fears in a confidential setting brought those fears down in size, and instead of driving others away, as we all feared, it created an incredible bond. We became each other’s lifelines.

As I spoke my fears aloud, my voice for speaking back became stronger. “You don’t have to do it alone. You do matter. You will be ok. You will figure it out. You have more strength than you know. You have options you haven’t thought of. You will find a way. You are loved.” When I met with these groups during the first years after the LBD diagnosis, I began to grow and heal. Ironically, I did it by falling apart with people who showed me they could love me anyway. I began to see myself and my brave support group friends, who were all there for reasons other than a spouse’s dementia, become healthier, more capable people as they met a variety of challenges.

Expressing grief for the losses that companioned our fears was another giving-it-a-voice step. I was and am losing my husband in an excruciating process of here again, gone again, capable now, not capable, alert one minute, lost the next, remembering a student from twenty years ago one moment, saying, “I don’t know who I am,” the next. Always giving myself permission to mourn has kept me from crumbling into a permanent despair.

“Emotional tears,” says Judith Orloff, M.D., “contain stress hormones which get excreted from the body through crying…emotional tears shed these hormones and other toxins which accumulate during stress. Additional studies also suggest that crying stimulates the production of endorphins, our body’s natural painkiller and ‘feel-good’ hormones.” She adds, “The new enlightened paradigm of what constitutes a powerful man and woman is someone who has the strength and self-awareness to cry.”

And so I give fear and grief a voice by crying when I need to. In the first years there were times when I feared I would never stop crying. As I heal and grow stronger, I find the tears come easily, but they also go away easily. I name and face the fears more quickly. I feel the loss, and I more easily express my grief and move on. And I can laugh – something I couldn’t do for almost ten years. I know now how much I can survive. I know now that I have a voice that has the power to speak for me and keep me whole. I want to beat the odds, and so I give the fear and grief a voice. I do it for me, and I pray that all caregivers find their voice for making it through and surviving stronger than ever.

© 2010 Ginnie Horst Burkholder

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