Creating Space

One of the most difficult aspects of living with an Alzheimer's patient, particularly a spouse is defining anew the concept of space. My husband and I, from the beginning of our marriage, were two independent people who created our own spaces in our lives and our home. While being interdependent on one another, we respected our separateness allowing us to come together with renewed and ongoing interest in each other's lives. He developed an interest in art galleries, theatre, and movies (my world). I took up golf and learned to appreciate and enjoy Jazz music(his world). While he played golf with his cronies, I went on art related excursions with my friends. We both enjoy the theatre and our weekly movie date has been a tradition that we started early in our marriage and still enjoy doing. Our yearly trip to Carmel is where we share the common joy of exploring the art galleries, the Monterey Jazz Festival, and an occasional round of golf.

But as I said before, my space, his space is no longer separate, definable...it is our space. We are connected "at the hip" as they say. He cannot function independently very well now without me. He is still able to perform all the normal functions of daily living...he seems strong, fully cognizant, able to have conversations with a rational exchange of ideas....however, he seems to need me to be present at each moment. I am told that this is a normal symptom at this stage of this disease. He seems insecure, fearful, clinging at times. I go to my art class. "When will you return? What time? Will you stop anywhere else?" I try and reassure him. When I am upstairs in my studio, I know he will come up in a few minutes and ask, "What are you doing? When will you come downstairs? How long will you be?"

We go on walks together and he holds my hand tightly, afraid to let go. He now shadows me in the grocery store, when before he would go off and come back with some new item he wanted to try. At the book store where we would lose each other for hours exploring our own interests in books, he now just follows me, closely. I know his fear is losing track of where I am and getting lost.

My vital, independent, adventurer is now a fearful child. I am accustomed to this behavior in my small grandchildren but not in my husband. I steal small moments of privacy, when he naps or is distracted. I have moved my drafting table to the family room so that I can paint while he watches television. I am now trying to create a world, a space that comforts him as well as allowing me to enjoy the time we have together without losing my own space.