(This blog continues the August 2 post, “Some Days are Just bad ….” Jon and Adriana left; we had another caregiver during the week, then I was alone with Bo for three days.)
Jon reminds me that every time he’s away, Bo declines and Jon has to “bring him back.” Well, it happened again. Since Bo had been doing rather well up until a few days before Jon left — I could get Bo up and put him to bed, go up and down the stairs with him, cook for him, sleep with him at night — the plan was that Cynthia would come the first six days from 1-10 pm, and I would do nights, but then I would handle the weekend alone. That was the plan.
But the plan didn’t work. Bo declined so drastically — so quickly — that he was barely conscious; so weak that I couldn’t get him out of bed because he might fall. He was sleeping nearly all of the time; we could feed him small amounts of food but it required getting him sitting upright which was hard to do. He couldn’t follow directions to move toward the pillows or roll over. Getting pills into him was more and more difficult (crush them, sprinkle them, mix them with chocolate ice cream and chocolate sauce; even mixed a crushed pill into a spoonful of orange marmalade.)
As the week progressed, his continued decline was different from previous ones. I saw new changes. By Friday, when Cynthia left at 5, I was dreading the weekend. She would return on Monday noon. That meant that I was to be alone with Bo almost 72 hours. By Saturday evening after 24 hours alone, I was almost desperate. He was getting harder to move, to turn, to change.
In addition, on Friday he became more agitated — not really the right word — but he simply didn’t stop moving, especially his arms. While sleeping he would reach his arms out as if to touch something, then pull at the sheets, then wave his arms around again. Was he seeing something? Was he having hallucinations? We have anti-agitation meds which I gave him, hoping he wouldn’t feel as restless as he appeared, but it didn’t calm him.
Also, his sleep apnea set in, so extreme that his gasps for air could be heard throughout the house. For the first time, I couldn’t sleep with him. It was impossible. I tried the floor, then the hallway, then finally, I moved to another bedroom and hoped he would be safe in his bed because he hadn’t moved for days. I watched him on the baby monitor. He was lying there moving his arms, pulling at the bed pads and sheets with his background of heavy snoring and yawning. Sometimes when I walked quietly into the room, he tried to talk to me between the snores as if he was asleep and awake at the same time, but he had no real communication left, just gibberish.
Miraculously, on Sunday morning Cynthia texted me that she could come in the afternoon to help me. I can’t describe how relieved I was, how grateful. She was with me from 2 to 7 pm. She bathed and calmed him and together we turned him on his side so for a few hours his apnea was quiet. She insisted that I LEAVE THE HOUSE to get a break. Emma and I just drove around, then stopped to visit a friend for a short while.
I called Hospice and asked that Bo’s nurse, Ronnie, visit us on Monday morning. “He’s aged 10 years in the past week,” she said when she saw him. He was so weak and unresponsive that we discussed some new things: a reclining chair, a hospital bed, an additional caregiver, what I will do if/when he stops eating … the kinds of topics that I have avoided. When Hospice first began coming to us, they sent oxygen and I hid it in the back of our closet. On Monday when he had extremely bad apnea and was struggling to breathe, Ronnie suggested using it but I didn’t; I knew Bo would pull it away immediately.
Did he have a urinary tract infection? Was it constipation? TIA’s? We don’t know.
And so the nine days passed and by the time Jon returned on Tuesday, Bo was a little better, but Jon saw the difference in him. This bout took its toll, although after a few days, Jon had him back downstairs. Bo is changed though. It’s as if there’s less life behind his eyes… not blank, but often unfocused, sometimes asleep.
For me, it was a rough nine days of decline, and during that time, I had to face a new reality: I need more help. I can’t — I don’t want to — do this anymore. And so Cynthia is coming to help regularly when Jon has days off. I still do nights and mornings while Bo sleeps. But I’m tired; we’re both tired, and Bo isn’t really living. It’s so hard to watch.