They have been married 67 years and there are many handholding memories. When they were courting, they sat on the porch swing with her father nearby to monitor the handholding. On bended knee he reached for her hand when he proposed. He clasped her hand tightly when he told her that the draft notice arrived and he would be leaving soon. They walked arm in arm down the aisle before he went to Europe. Her hands spent many hours clenched in prayer during the long months he was away. Though grateful to be home, when he returned there was a deep sadness in his eyes. It was a sadness that his smile did not touch for a long time and he did not want to talk about the war.
The sadness lifted when, a year later, she told him they were going to have a baby. A smile as brilliant as the spring sun burst forth as he gently took her hand in his, then wrapped his arms around her in a warm embrace. For many years they walked hand in hand together or with one or more of their four children.
As she told me about the life she had shared with her husband, she smiled even when her eyes were bright with tears. Then she began to talk about how their relationship has changed and the tears started tumbling from their perch in her eyes and sadness overcame her as she said, “Most of the time, over the years, he reached for my hand. He was always, I thought surprisingly for a man, more naturally affectionate than I was. I learned a lot about that over the years from my big burly husband. Now I see him losing weight, shrinking away and sometimes he doesn’t know who I am. Today he told me that I am such a nice woman, he should have married me.”
She paused to take a deep breath before she could continue. “When I try to take his hand, he usually pulls away. If I put my hand over his, he pulls away. He will let me hug him, but I miss holding his hand.” She paused to blow her nose and take another deep breath. “I am losing him and I don’t know what to do.”
I held my hand out, palm up, and she laid her hand on mine. As our fingers wrapped around each other’s hand, I began to talk about the changes that take place in communicating and how it is possible to “talk” with our gestures and behaviors. One example I gave her was going back to how our conversation began; how when I held my hand out with palm up, she reached forward to lay her hand in mine.
It seems like such a small thing, but I explained how reaching out with my palm up is an invitation . . . an invitation to hold my hand. When I reach out and “take” his hand, there can be a perception that something is happening “to me” instead of “with me”. I reminded her how when I reached out with my palm facing up, she very naturally placed her hand on top of mine and our fingers began to move together instinctually.
I went on to talk about the normal response to life being out of control is to try to control whatever we can. As dementia progresses, behaviorally people still try to maintain any sense of control they can. It is perfectly understandable for them to want to control how and who is touching them, but difficult for us when we feel rejected.
She nodded almost imperceptibly. We sat in silence for a few minutes, holding hands, before she rose from the chair. She angrily proclaimed, “I hate this disease. I hate that it is taking him away from me. From me and from our children. It just isn’t fair!” She and I agree – it isn’t fair.
A few days later she returned to see me. Eagerly she reached out toward me with her palm facing up. “It worked! I tried it and it worked! It doesn’t happen every time but I try it every day I come. Sometimes I try again later before I leave if it doesn’t work the first time.” She began to cry, simultaneously glad and sad, then shaking her head she said, “thank you” and turned to go find her husband.
Behavioral communication is happening all the time; we simply are not aware of it. Dementia progresses and verbal skills begin to change. Even when people continue to talk, behaviors “speak” louder than words. When we become more aware of our actions and think about the actions of the one we love, we can begin to communicate with their behavior. It is natural to react to behaviors that make us feel rejected, angry, frustrated and many other emotions. It may sound odd and learning how to communicate differently is not easy, but it can be rewarding and result in moments of connection and joy.
This interaction I had with a family member is an example of the information I share with family members, friends and professional caregivers when we discuss “Care Coach” and “Learning To Listen Differently”. Gestures may seem like such a small thing but they can make a big difference.