Finding "Us" | Lewy Body Dementia Association LBDA

Finding "Us"

by Ginnie Horst Burkholder

I wanted him to be the old Nelson, not who he was becoming after years of creeping dementia. I wanted to resurrect the Nelson I once knew and preserve the relationship we had nurtured as it was — to keep the “us” we had created in those first twenty-five years of our marriage. I considered that “us” to be as good as it gets.

Oh, it bugged me when he went off and spent longer amounts of time than I liked helping someone else, while things at home were left undone. But he did always come back and do things for me too. Yes, he used his humor to try to manipulate me out of consternation over some misunderstanding or perceived injustice. Still, his stories and quick wit could put any group of people at ease. Sure, he would walk away at times from a disagreement rather than confront a difference, but he always walked back willing to work some more at building an “us” that we could both live with.

I wanted to keep all of that rather than give in to what was looming ahead when the diagnosis became Lewy body dementia. Did someone say you don’t know what you have until you’ve lost it? There may be nothing so appreciated as what you have just lost. Suddenly every positive thing represented by the loss becomes amplified, and all the negatives shrink to nearly invisible.

At times when I’m able to let go of what I can no longer have, I’ve discovered some benefits from the loss experience. Getting to that place of seeing the benefits is not easy. And for me at least, the arrival never seems to be permanent. I appreciate for a time the blessings that have sprung out of loss, but then at intervals I feel the loss again so profoundly that it is like confronting it for the first time. The ebb and flow of grieving the loss and blessing the gain seem always present.

One benefit when I release the grip on “what could have been” has been the experience of accepting the person of Nelson with no expectations. Letting go of expectations has freed our relationship to be what it is. “What will happen today?” is often the foremost thought when I approach the nursing home for a visit. Will his eyes light up when he sees me or will they look through me in that confused daze? Will he be asleep or will he be walking the floor and waiting with relief that I have come back? Maybe there will be some completely new development that I’ve not dealt with before. On days when I have no or low expectations, a small gesture of thanks or recognition from him is like finding a treasure in the hunt for our “us.”

Letting go of what I can no longer have in this relationship has helped me to find my own value. I grew up in a time and place where single women were spoken of disparagingly. They were “old maids.” The expectation was that you got married and started a family. I adopted a belief that I couldn’t be complete or whole without a man beside me. As Nelson has frequented the space beside me less and less over the past twenty years, I have been forced to look at who I am alone and take stock of my value without him. As I grow in knowing my value, I have experienced our “us” in a new way. My sense of worth doesn’t need to be propped up, and it can’t be torn down by what he brings or doesn’t bring to the relationship. In this state of mind, those tiny seconds of connection that pop into our time together become nuggets of gold, valued in the presence of the moment.

I have learned to let go of the need for rightness in this relationship. That too has opened the door to more opportunities for connection. I see nothing he does as right or wrong. That was a hard thing to let go of early on, when I couldn’t determine what was dementia driven. Now I accept everything as, if not dementia driven, then dementia colored. There is never a reason to blame, to accuse, or to expect differently. Veteran spousal caregivers get really good at preserving the fragile connections by banning right and wrong from the relationship. It’s irrelevant. We live for those moments that tease us with a connection that has grown out of the mysterious union of souls and years of life together. The stuff of previous interactions that caused friction has to be let go.

Giving up the past to receive the present, I am learning to clarify want and need. When I am with him I must often find the space in my heart to give up my wants for his needs — without giving up my needs. In this relationship the formula for success is to take care of both of our needs as much as possible. I work to let need trump want in the decisions I make. My want to share with him the excitement of some event in my life has to be set aside if it will cause him confusion or anxiety. His want for freedom has to be scrutinized under the light of the needs of us both. Needs that cause conflict have to be compromised. Want takes second place and almost seems a luxury.

Opening a tight fist on the past in order to receive with open hands what is in the present has brought me some cherished moments of connection with the Nelson of the day – as he is and I am in that particular moment. He stretches his arm out to circle me as I position myself beside him to read. Or he makes an appreciative exclamation over a treat I bring.

As such moments become fewer, it’s as if I’m searching for gold – for small fragments of connection that may glitter to the surface of his brain without warning. And when I find those nuggets I am reassured. We still have our “us.” We are changed without apology. Knowing my own value, having little expectation, without judgments of right or wrong, and with attention to knowing what is need and what is want, I am living with a better version of me that gives a better opportunity for encountering our “us.”

© 2012 Ginnie Horst Burkholder

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