by Ginnie Horst Burkholder
We went for a hayride in an autumn wood where yellow-gold leaves shimmered on beech trees in early evening sunlight. When it was over and time for Nelson to stand on unsteady legs in the middle of the hay wagon, the people around him gave patient hands and long minutes to the process. As we stepped down into scattering leaves, our friends’ easy acceptance and offers of help settled upon me like a blessing. For this, I am thankful.
We have a son and a daughter who are both living in other states. Acceptance of Lewy body has been hard for all of us, and we have not always had the coping skills or the energy to support good connection among us through the years of this disease. The miles apart, and our family system, often left us to flounder individually in the processing of the emotions that are the passage to acceptance. We are evolving into better communicators, and at the end of phone conversations there are now three words we can count on exchanging: “I love you.” For the precious gifts of growth, individually and in relationships, I am truly thankful.
Years ago, before Lewy body was even in our vocabulary, my younger sister, who lives out of state, began working in the field of dementia, providing leadership for coordination of education and services on a state level. Now, every third weekend she brings her expertise along with her husband, and they give us a hand with home repair or lawn care. More importantly they give respite not just from the caregiving but from the loss of reciprocity of relationship that a spousal caregiver feels so profoundly. Having that to count on keeps me balanced, keeps me from falling off the edge of sanity, and keeps me believing that even now after twelve years, I can still keep on. For this, I am thankful.
Nelson’s temperament is such that he will laugh at his own confusion. When his tongue refuses to make words come out in any sensible pattern, he seems to find it entertaining. When I make a feeble joke at my own impatience, he will laugh spiritedly. When there is no explaining some behavior that I have called to his attention, at best he is likely to get a sheepish grin and look at me with puzzlement. At worst he ignores me. He does not display the combativeness or aggression that plagues some caregivers. I know that for this, I can be very thankful.
There have been times in the last twelve years of Lewy body where I simply could not dig deep enough to find any faith that God was with us in this disease. At times I still struggle with feelings of betrayal. Yet many times I have also had glimpses of my own growth so that I have to believe that God carries me. Other times, at just the right moment, I have had a neighbor knock on the door or received a phone call, or experienced a sequence of events that seem to carry my best interests at their center. More often, in the rough spots when I cannot believe that the river that is God’s goodness is at work for me, I find myself relaxing into the river and letting it move me along, instead of kicking and screaming against it. More often I know I am in the river of God’s good intent, and for this I am thankful.
© 2007 Ginnie Horst Burkholder
To e-mail Ginnie about this story, click here.