For my dad, Alzheimer's has been more like a roller coaster...steep up's and down's, and quick turns, and lots of unexpected's. We constantly wait for the next fast decline, and still, it always catches us by surprise. Decline is always there, but dad has experienced more of a "I'm going to pull the rug out from under you" kind of declines.
Last December, Dad was weaned off two of his medications. We were nervous about the change, but the State requires medication changes, periodically. The State is also very cautious to make sure that patients are not over-medicated. They have strict guidelines in place, and dad's facility is careful to follow those guidelines. Thankfully, dad's caregivers have no desire to over-medicate him to keep him in a drugged state. Even in the toughest of days, they work very hard to calm him without extra medication. One of his caregivers is very sweet to rub dad's chest, back, or massage his hands to try to calm him.
After being weaned off two of his medications, they slowly began giving him two new medications. By the time his anti-psychotic was out of his system, dad was in a terrible state of psychosis. We were eager for them to find a new medication to help him. Thankfully, his new anti-psychotic has worked even better than the last one, and his other medication was able to give him the gift of a few hours of sleep at a time. This is much better than being up four days straight!
Dad has been on the same medications since January, and yet, since March we are seeing great changes in him. In March, he was still pacing several hours per day. He might sleep a few hours at night, and sometimes a few hours during the day, but he was still awake much more than he was asleep. At this point, he could no longer feed himself, but he could sometimes pick up his cup and drink from it. His food was cut into bite size pieces, but choking wasn't a problem unless he was really, really tired and having trouble holding his head up.
I was back to visit dad again at the end of June. He was sleeping at night for several hours. He needed help getting out of a chair. He was beginning to choke a little on fluids (ie water, milk, juice). He was unsteady on his feet, and was no longer pacing. He did not hold his own cup to drink.
And now, at the beginning of September...
He is sleeping...a lot! This is a big sign that the disease is progressing. They have to wake him for his meals, and sometimes he will not wake up enough to eat, so they feed him later. He does not get out of bed on his own. He does not walk without help. He cannot sit down into a chair without help. He cannot lay down in bed without his caregivers bending his body to sit, turning his body to lie down, and then pressing his legs down to the bed, so he can rest. His fluids have been thickened to a nectar-like thickness, but they are talking about thickening them more to a honey-like thickness. His food is cut into small pieces, but we know that pureed food is the next step, and will likely happen soon. He does not attempt to get out of a chair, or his bed on his own. He simply cannot do it.
In the past, the decline was devastating for our family. But now...it brings relief. The fact that he is able to rest is such a relief. The fact that he isn't pacing constantly...and falling...is such a relief. The fact that his medications seem to be a good balance for him...is a relief. He is still in a terrible state before his medication becomes effective in the morning, but it is a relief that the medication actually works.
As we see where he is now, compared to March, we see the steady, yet quick, decline. A lot can change in a few months. Although the disease has full control of his body and brain, we are so grateful for the rest his body is now able to attain.
