(I actually wrote most of this blog the first week of September, right after Bo came home from the hospital the third time, but he returned to the hospital the day after I started this and I never posted it. )
Things have changed drastically.
I must be honest with myself — to look at Bo and see him as as others must see him, not through my wishful lenses, but realistically — and when I look at him in this way, I see how seriously he has declined. And so fast. It’s as if he went into the hospital as one man and came out another, and since he’s been home this third time, he has declined even more.
He seems to be withdrawing into himself. Not unconscious, not conscious, but somewhere in between.
Before, when he called me by my name or when he asked where I was and waited for me, I knew that for that moment he knew me, and I wanted to believe that he needed me, that he would be lost without me. That he was maybe even better than he appeared.
But yesterday and today, he hasn’t asked for anything or anybody. He hasn’t really even wanted to open his eyes or speak or eat or drink. At times he seems almost unresponsive. We’ve struggled to give him pills or even orange juice. I’ve heard many times of Alzheimer’s patients seeming to decide to stop eating and drinking and bringing about their end.
Today he can barely walk, taking weak little steps, almost falling backward unless we are guiding him with both hands. Jon has to actually get him up or down the stairs; I couldn’t do it. He’s confused by most things, doesn’t recognize common things. He doesn’t want to feed himself or even get up to go to the bathroom. And his remaining language right now is curse words, no doubt because the other words elude him. If we bother him or move him too much, he curses. Always a sweet, kind man, he surprises me sometimes when he is annoyed by something simple.
Today he didn’t know how to put on his shoes, how to brush his teeth or shave, and was too weak to stand at the bathroom sink. His head went down, and then he leaned weakly, needing to be guided by both hands to the bed or a chair. And once he’s in a chair, he slouches and nearly slides out of it.
And I wonder. It’s as if he has slipped into another stage, almost into another consciousness. And I look at him and ask myself how I will do without him, but I will have to because he cannot go on like this indefinitely.
Jon and I discuss what we will do next, how we’ll care for him. Will we keep him upstairs? Do I need to hire a third person who can are for Bo so we can sleep? Will I have to find a skilled nursing residence for him soon?
Now it’s more than a week after that blog was written. Bo returned to the hospital with a fever, was hydrated and cared for and returned home two days later. Although he came home and I wrote the blog about his improvement, I signed on to Hospice and they began their extraordinary support. And the reality is that Bo has declined again, almost back to where I described him at the beginning of this blog, before his last trip to the hospital. He knows me and wants me nearby. He has lost even more weight and obviously feels terrible, everything an excruciating effort, even holding his head up. He has no life. The sadness is overwhelming.