MY BRAVE HUSBAND, BOB, FACES THE CHALLENGE OF HIS LIFETIME
By Saralee Perel
Last week, I joined a support group for caregivers of partners with dementia. You see, I have become my husband's eyes, ears, hands, words, well his lifeline. Bob's hopes dreams memories have all disappeared. Being my husband's overseer is a duty I am honored to accept. Are we not one another's keeper?
Bob and I love with a love everlasting. It's a "no matter what" kind of love. I am doing a lousy job as his caregiver. I'm no champion. I have cowered in fear, buried myself in frustration, isolated myself in an emotional closet filled with memories that are no longer shared by my best pal. He can't retrieve them. Does anything matter if it can't be remembered?
You know what I miss the most?
Small talk. But if we were walking along a path, and I was to say, "Did you see that blue jay?"
Bob would have no idea that a blue jay is a bird, or that a bird is a little flying thing. I'll tell you, though; I say it anyway. The words don't matter, nor do their meanings. What does matter now?
That we are together. Fancy this; years ago, when Regis Philbin was the host, Bob was a contestant on The Millionaire Show in New York City. In order to qualify, he had to answer, at lightning speed, questions such as: name the first five presidents in the order of their birth. He was magnificent on the show. He is still magnificent in his heart. My husband cherishes me. He spends hours a day using brightly colored pencils in his coloring book. Why?
So that he can make me fancy designs. "Look," he'll say. "I made this for you."
"Beautiful. We're going to frame it!"
Although he doesn't remember that I have a spinal cord injury, he has never once forgotten to extend his arm to help me when I have to walk. And with only a few words remaining in his vocabulary, I hear, "I love you," a dozen times a day.
He still kisses real good. When I dream, it's of a youthful, effervescent Bob, with piercing blue eyes and wavy blonde hair. I see him digging for clams on a sun-swept beach on a sparkling summer afternoon with the sky and the ocean a cerulean blue. He's happily showing me his basket filled with clams that we'll later steam for chowder. Those were the good days. When I wake up, I pathetically hope for just one more glance of that clam basket. I reach over and feel that my husband is next to me, thank God. These are the good days. My courageous beloved can no longer recognize anyone, nor can he read, write, follow TV, or cook. Although he has won 27 blue ribbons for his baked goods at the big Barnstable County Fair, he no longer knows that the rounded utensil used to mix dough is called a spoon. So we bake cookies together, sort of. I want him to feel useful, so after I put one cup of raisins in the measuring cup, I ask him to pour that into the batter. This is always followed by my applause and his proud beaming smile over his grand accomplishment. Until about a month ago, I didn't think I needed help. Support groups (or any groups) have always turned me off. Then suddenly, I was overcome with a desperate need to connect with others like me. To not feel so alone and lonesome. I was frightened about speaking to the group. I predicted I'd just listen and not say a word. (You know where this is going, don't you?)
When I was introduced, I started telling my story and didn't stop. With each sentence, I could see all the others nodding in understanding. It was as if the whole group was saying, "You're here, Saralee. You are safe."
My tears flowed unencumbered. Taking this step has made me feel like I've opened the doors to my heart again. With my sweet husband near me and my many supports all around me, I will no longer power on alone.
