We want to know how and when. And we want to know now!
In our age of information, we have little patience for situations that aren’t easily answered with data, definitive answers, and quick fixes. We just want to take a pill or pay the bill and get on with things.
Yet, there are so many life situations that can’t easily be answered or remedied. Alzheimer’s is a great example. Just about everything about the disease is unpredictable. From the person’s behavior to its progression, things are best handled as they come, because so many factors come into play including personalities, the damage being caused to areas of the brain, other existing health conditions, past and present home and work environments, and the person’s previous lifestyle.
My husband Marshall has gone well beyond the average of 8 years since diagnosis. He’s progressed through the disease in steps. About every three months over the past 15 years there has been a noticeable decline. Meds and behavior (mine and the caregivers) would be modified and he’d ride the plateau until the next downward step.
The past six weeks the progression of Marshall’s disease has been on a continuous angle downwards. He now sleeps most of the time, eats little, has only brief periods of comprehensible language, and is mostly immobile. Muscle control and perception make feeding himself challenging. Most foods land in his lap unless he is fed. Marshall stands only with assistance and great difficulty and is limited to taking a few steps at a time.
Only God knows how long Marshall can continue in this state, or worse. He’s been accepted by hospice, an indication that the end is near, likely within six months. However, whether his remaining time on earth is days, weeks, or months is uncertain. His hospice nurse believes he may rebound for a bit. She doesn’t think he is leaving us right now, but no one really knows for sure.
From the beginning of this disease, the challenge for those around Marshall is understanding how ill he truly is. Even today, his color is good. He is otherwise healthy without illness to vital organs. Even his blood pressure is normal. Although incapacitated and not the lively, happy, charismatic man he was, he does not have the grey, sunken face we often see in one close to death. He will smile and say a few sweet words to family and caregivers from time to time.
But we can’t see what is happening in his brain. Without imaging, we can’t see the atrophy (shrinkage) or destruction. Brain cells have continuously been killed by the plaques and tangles leaving holes in the brain. Neurons no longer exist to control the body’s functions and will eventually eliminate his ability to swallow and breath. Those who die solely with Alzheimer’s typically pass from infection, aspiration pneumonia, or weight loss.
Our goal for Marshall now is to keep him comfortable and content. Our goal for ourselves is to love and enjoy him while we can.
(Here is a clear video on the progression of Alzheimer’s disease . It’s well-worth the three minutes it takes to watch.)