She is failing. Most days her temp is above normal. Although she is taking some fluids, she has not eaten solid food in a week. Without food, she will quickly weaken. And as she gets weaker, she will be unable to sustain, and we soon will lose what is left of her.
In reality, I lost Mom about 15 years ago. She ever so gradually ceased to be the nurturing, advice giving, sustaining rock, who was my best friend. The gradualness of her descent into mind-numbing nothingness was so slow it was hard to notice. As the years went by she forgot to call, and she forgot to cook, she forgot to get up and walk, and she forgot to care. It hurt and I was angry at her inattention. Initially I cried, and lashed out at her, sharing my hurt and frustration with my equally confused sister. We didn't know then about the journey upon which we were embarking, and we didn't understand how long that journey would take.
Eventually we confronted the reality of our situation: Alzheimer's disease, with tentacles that reach out and try to suffocate every member of the family. Gradually her friends abandoned her when she no longer understood how to give friendship back. Her husband remained steadfast and loving, but when he no longer was able to care for her or be a husband to her, he moved on with his own personal life, establishing new friendships and new relationships. Yet he continued to spend time with her every single day until his own death. I never ever judged his decisions.
Her daughters simply coped for these past years, educating ourselves, tag-teaming visits, assuring her comfort and cleanliness and safety. In spite of her dementia, she was once our Mother and our friend, and the two of us share many of her traits.
Initially I thought to compare our situation with that presented in the recent award winning film, "Still Alice." The article was in my head when things with Mom began to decline. And as our situation worsens with her, I wanted to convey how our family is coping with the disease, and that perhaps other families cope differently. It didn't seem that "Still Alice" touched on the fact that every Alzheimer's family is different, and each has a unique and sad story to tell about their own experience. It is the entire family that bears the burden of Alzheimer's, not just the individual with the disease.
Are we now, 15 years after we began this painfully slow descent into our own story of confusion, frustration, and eventual acceptance, prepared to lose her for the second time? Most of us are. Only one of us is not. Regardless of how we feel, our long, difficult journey might soon be coming to an end. Amen.
