One thing which people don't realize when they tell me, "Oh, my grandmother had Alzheimer's, too" is the toll which it takes on the families and loved ones who care for the individual with dementia. The progression for us is rather like falling down stairs--things are stable for a while, followed by a sharp decline and then another period of waiting.
For us, it started with suspicions that something was not right, noticing confusion and excessive sleeping, symptoms which when viewed as a group became cause for concern. We had to make some tough decisions: to place our parents in the nursing home, to sign the do not resuscitate orders, and to eventually make the decision to allow my father to die. We know this is the inevitble outcome with my mother, and we wait, trying to do so with grace and not simply wish it were all finally over.
This journey took three years for my father, followed almost immediately by a year and a half with my mother. Sometimes, a resident at the nursing home will die, and I will read the obituary and think, "Well, at least it's over for you." And, as difficult as it is to admit, I sometimes feel jealous that these people are now able to move on to a new stage of their grief process.
I visit my mother in the nursing home, generally having abstract conversations with her and sometimes just sitting, waiting to fall down that next step. I just keep trying to tell myself that there is a purpose in what we are experiencing, and I have to just go through the process. For a while, there was a resident who was in the same wing as my mother. She was dying, and something horrible must have happened to this woman--she would spend hours and hours repeating, "No, Daddy, please, Daddy, don't hurt me". Then she would sob and then repeat herself over and over again until it was finally time for sleep. To say it wore on everyone's nerves would be an understatement. One day, Mrs. B., a lovely southern lady who herself is in an alternate reality, rolled up to the first woman and took her hand. She stroked the first woman's hair, crooning to her until she fell asleep. Then she sat there while the other woman slept, long after her presence gave the first woman peace.
We read so much about the purpose driven life, about people we meet in heaven. I sat there and watched Mrs. B patiently sit with the dying woman and thought, "Right now, this is her purpose." I am beginning to think all those people on Zone 9 have a purpose, even if it is not obvious to me, and that my mother and her friends' alternate reality is actually that they have one foot in heaven and one foot here on Earth, making them that much closer to what and where we all want to be.