Saturday, September 21, 2013


Come on! Come on! Come on! Get your tickets while they're hot! Experience the most terrifying adventure of your life! Buy now while our special lasts....two lives ruined for the price of one! In the great adventure that is Alzheimer's there are distinct stages of suffering, not to be confused with the actual stages of the disease process, although they are probably related. First there is the thin knowledge that you have a real disease in your family, not just vague suspicions. I use the word "thin" to describe knowledge that is really just facts. At this stage you have no idea at all what you are facing or the crazy tilt-O-wheel into which you have just been buckled. Here you get tons of interventive help....seminars, doctor visits, support groups beckoning, clinical tests galore. You can wear this stage like a badge: look at us! This is a real thing! And it is ours! The attention from professionals is seductive and alluring. It lulls you into the false sense of comfort that somehow you are not alone, and facts aside, you can now deal effectively with whatever comes. And of course active, actual suffering is still only a looming threat on the horizon. In the next stage clinical testing ends pretty much, doctor visits extend to longer periods of time in between, seminars and meetings start to sound repetitive and are no longer very helpful, your person continues to deteriorate at an accelerating pace, and actual suffering increases proportionally. A sneaking suspicion of the violence of this bumper car ride begins to formulate and with it a a raw snarling anger sets in. "Take care of myself?! How the hell am I supposed to do that?!" During the long and bumpy section of this ride, you start to really understand what you are into and up against. You complain loudly and bitterly, to the doctors, to the social workers, to your friends and family, to God. It is no longer fun to wear your badge. We have now entered into a third stage. My cries have resulted in the pronouncement that he now needs "palliative care". This terminology suddenly creates a plethora of visits and intense visitations by another cadre of professionals. Nurses, therapists, social workers and others flood into our home offering suggestions and working on "our issues". The rain delay at the carnival has ceased and the crowds have reappeared. It is also at this stage that I have buckled under the assumption that just because I am able to do all the duties required to care for him, I actually will not survive doing so on my own. A full time person works in our home Monday through Friday, helping me care for him. There are still long stretches of time we will spend in New York with our children and in Ludington enjoying our summer home. These stretches of time loom without planning yet for any kind of help. I am not yet enjoying this carnival but I feel that I am making plans and taking steps that offer improvements in both our lives.