Marks of Decline

When Dad was first diagnosed with Alzheimer's it was a royal shock to some, but not so great to my bride and myself. We had watched his decline for some time and were concerned that he was demonstrating behavior far beyond the norm of elderliness. Patterns had emerged that were too unusual to be normal, even for Dad. What was a shock to us was the immediacy of the doctor's assessment. Dad didn't just have a problem, he was incompetent. Immediate action was required, action that we were not altogether prepared to provide. One of the first actions that we took when he moved in with us a week after the doctor's declaration was to have him re-evaluated, a second opinion. That evaluation confirmed everything identified in the first one with further comment on his condition and the inability to live on his own ever again.

There is something about time and exposure that dulls the senses. Paint on a house fades so slowly that we don't notice. The slowness of it's progress can make us even think that it isn't fading. That is the way with Dad. He is here all the time. His incompetence has become the norm. What was clear is now indistinct. Since he has some good days, those days eclipse the reality of how he is declining. So we had him re-evaluated for our own sanity sake. Is he the same as before? Is he getting better? Did they have the wrong diagnosis all the time? The pressure cooker environment of 24/7 care can create false illusions, almost like a man dying in a desert sees an oasis.

The results are in. Apparently I have gone insane over the past year and a half. While I could clearly see some things that were going wrong, others seemed to have stood still and some even had improved. Only in my numbed mind and Dad's diseased mind is that so. The past year has in reality brought great decline. It is recorded, measured and plain. Stopping and looking objectively at the results I can see it is so. Even rereading blog pages makes it clear. 24/7 care, however, is the forest that often obscures the trees. But the reality is that he is in decline, not just a little, but a lot. Alzheimer's is funny. It is uneven. One part of the brain is destroyed while another part is intact. For each patient it is different. So decline is not smooth. He can't follow the thought of a simple sentence, but he can draw a complex picture. He can't reason a simple thought, but he can argue his point (only his point without any understanding of other points) on a thought. (But, hey, look at the world in general. On that basis politicians and extremists on every side have Alzheimer's.) Those positive or apparently normal actions dim the view of the overall reality. Dad is in decline. Fast decline.

What next? I broached that subject with a close relative and the first word out of their mouth was, "So you're getting tired of him and you want to ship him off, is that it?" With that kind of support you can see why my own mind is dimming. I tried to approach a second close relative and got almost the same answer. Any thought of my putting him in a home is the result not of need, of his benefit, but of my being tired of taking care of him. I talked with some other care givers and there I received some support. What kind? They had had similar experiences with their own relatives. The caregiver takes all the heat of the care and then all the heat of the decisions about the care, or in this case, the potential need for different care. The caregiver is the problem and their contribution to the solution is discounted.

This marks the decline not only of the patient, but of the caregivers ability to make the best decision about care. When all decisions about care are second guessed as being self serving it diminishes the options. Dad experienced this himself when he had to put his wife into a nursing home several years ago. Others judged his decision on their own faulty opinions and ultimately made horrendous decisions that have plagued Dad since. No one saw the patient in need, just the caregiver in failure. That is the box in which the caregiver finds himself. Not only has exposure dimmed their perception of the problem, but they are also now also feeling a certain coercion to make potentially harmful decisions both for themselves and the patient. This mark of decline not only reflects the condition of the patient but the future condition of the caregiver. If knowledge is power, and I have knowledge of these things, then I hope to be empowered to find the right answer to deal with marks of decline that we are seeing and experiencing.