Tuesday, May 25, 2010

The Course of Alzheimer's

Good to see Joe and Karen and the resurfacing of Lisa-so glad you are back blogging again. Very dear, Loyal and good people, I can't say enough about them. We are all  universally connected by this AD machine.

One of the things I have been thinking about lately is the course of this disease. The seven stages are quite well known and popular over the last 15 years. It does not matter how you break down the timeline of the disease, on a long term basis it is always predictable. One of the confusing things is that it gets diagnosed at all different times on the continuum of the illness. So it may seem to last anywhere from five years upwards to twenty years. Someone may be several years into the process when they are actually diagnosed, or very early on in the process, depending on the family, the doctor, even ones willingness to make the diagnosis, including the doctor, the family the victim.

In the early days and years the disease is quite a bit of a roller coaster ride, peaks and troughs, good days and bad days. They often happen for no apparent reason, the phase of the moon, the alignment of the planets, you never know when a good day or bad day will come, in the earlier stages. So the day to day course can be quite variable in that way. It is enough to drive anyone bonkers.

Here's why:

One a good day things seem clear, oriented, lucid, the family, the caregiver, gets this sense that maybe everything will be okay, maybe the AD stopped. Maybe it is a miracle, maybe I am waking up from this terrible nightmare. Yes we know logically it is not true, but we are all human, and it takes us for an emotional ride. we get a strange little candle flame of hope. But the next day for no reason is a bad day, disoriented, a bad scene, getting lost if driving still, leaving the stove on, getting dressed inappropriately, forgetful, confused a bad day after a good day, anger, despair, grief, a feeling of being betrayed by God or whoever you look to- a terrible emotional roller coaster.
Sadly as time goes on these are less good days and over time a lot more bad days, when you are close to it, it is tough to look at the big picture and you live day to day and loose perspective, you want to get off that ride, but you can't and you won't.
You start to hope for good days, less and less over time, you try to laugh, but it gets harder to laugh.

Yes in the big picture the course is always predictable, the various ways of breaking it down the early intermediate or late stages, it is universal and correct. But early on these is not enough credence that can be given to that roller coaster ride.
Even if we understand the stages in the big picture, it give us a nice sense of false control over an out of control situation, but it does not help to much in that day to day ride when you are so close to it, just trying to survive another day.

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Talking about the book with the Lake Superior wind....... a calm day