Our roller coaster continues, but now it’s in small rolls, from deep sleep to wakefulness to speaking; from so weak that he falls, to making it down and up the stairs; from one word responses to greeting a guest, shaking hands and saying, “It’s good to see you.”
Each short day becomes an incredible struggle. He sleeps 18-21 hours now. At least, it seems as if he’s sleeping, but he may just be lying there with his eyes closed, and when asked if he wants to get up, he usually says no. But today, when I went to him at 5 pm and asked if he’d like to get up, he said, “Yes,” and started to sit up. Even said he had to go play golf, something he hasn’t mentioned in a very long time.
When the hospice nurse came to check on him Monday morning, he didn’t even respond to her, not even when she asked for his arm to take his blood pressure, but 8 hours later he had dinner in the kitchen, mostly feeding himself although it took great effort.
We have no way of knowing anymore whether he’s in pain because we’re not sure he understands our questions. We’re not even sure if he’s out of breath and needs oxygen, which Hospice has provided, or if he’s just weak and tired.
Yesterday he nearly broke my heart. He was lying on the living room sofa, where he has lain countless hours in the past few years, and I rubbed his head and said, “I’m so sorry you feel bad, Bo. I know it’s hard for you.” He smiled at me and said, “I’ll get better.” I kissed him and walked away in tears.
Several mornings ago I heard him get out of bed and found him holding on to the door frame of the bathroom — about three feet from his side of the bed — unable to go any farther. I turned him around to put him back into bed, but his legs gave out and he sank to the floor. I had to wake up Jon to get him back into bed. Tonight, as Jon was holding him, trying to move him from the kitchen table to the living room, he seemed to pass out and fell to the floor. But then perhaps 15 minutes later he was able to go up the stairs with Jon’s help and go to bed. But the same thing occurred in the bedroom.
I watch him struggle and I don’t know what to do. Is it just his failing brain function or another blood clot in his lung or something else? He eats and drinks very little now and sleeps away his nights and days, seldom turning over. Our Charlie cat has moved into the bedroom and sleeps beside him most of the day and night now, companionship that Bo likes. Does Charlie know something that we don’t?
What I do know is that Bo is living the very life that he always dreaded, that he refused to live. From a very young man, he would say that he will never be a vegetable, never be sitting in a wheel chair with his head hanging down; he would take his own life before that happened. He used to say that he’d be dead by the time he was 70, which always upset me. Ironically, he was just 71 when he was diagnosed with Alzheimer’s — and the next 8 years he has had no real life at all.