“I see it as a fog that imperceptibly becomes thicker. You don’t notice the darkness until you realize that you cannot see. You try to carry on normally, but you stumble around and bark your shins on objects you cannot see.”
“I kept telling myself that the neurologist’s diagnosis did not change the present reality – that my husband was still loving, lovable, intelligent, full of joie de vivre and fun to be with despite the unpredictable lapses. But a few weeks later I read up on Alzheimer’s. I scared myself silly and couldn’t tell anyone for months. I couldn’t share that fear with my husband, either. He seemed to have forgotten the diagnosis, and wouldn’t it be cruel to remind him?
The contrast between dealing with cancer and living with Alzheimer’s was stunning. Part of that was purely medical. My cancer was discovered early, and after following well-established treatment protocols, I have a very good chance it won’t recur. For Alzheimers, however, there is still no cure…There was no ambiguity about my cancer diagnosis, not “probable” about the presence of cancer cells. The news was bad, but the clarity was almost a relief. And suddenly the medical world was there to help us out. As a cancer patient, the doctors offered me encouragement and choices of treatment, not the dispiriting resignation that marked our discussion of dementia. Moreover, our health insurance covered almost all my cancer expenses, although it provided almost nothing for my husband’s Alzheimer’s care.”
It’s not like forgetting. It’s not like Alzheimer’s patients forget. It’s EMPTY.
There is a wide emotional difference between knowing you will die one day in the future and living with the knowledge you have a disease that slowly squeezes the life from you in hundreds of unexpected ways, and you have to watch it happen while those who love you stand by unable to help you.