Our lives have changed significantly since Kate’s diagnosis fourteen years ago. Our world was much larger then. Now, it’s very small. Over time, she has lost almost all of the abilities she used to have.
For the past four and a half years, she has required total care. Her caregivers and I get her in and out of bed with a lift. We bathe her. We dress her. We feed her.
For ten years, we binged on movies, musical and theatrical performances, and ate out for all of our noon and evening meals. Today, the big events of our day are going for ice cream at 3:30 and having dinner at 4:30. We get her to bed at 6:30 p.m just before the caregiver leaves.
These changes have had a dramatic effect on our relationship. More often than not, she doesn’t seem to know who I am in the morning. That is balanced by other moments during the day and evening when she expresses her feelings for me in various ways. Since she has aphasia, she depends heavily on her facial expressions to communicate those feelings.
She often gives me a smile that I am confident communicates her love. That occurs most often when I return home from lunch and meetings with friends or organizations with which I am a member.
My favorite part of the day is our evenings after the caregiver leaves. We watch music videos on YouTube, and I recount many of the things we have done together during our marriage. We hold hands. She strokes my arm. She rarely says, “I love you”, but sometimes she takes my hand and lifts it to her lips and kisses it several times.
Sometimes she is talkative. One night last week, we talked for almost an hour. I love these conversations. Even though I only understand a few words sprinkled among the gibberish, the conversations seem very natural, and it is clear that love still binds us together. I am grateful.
