Care giver and gatekeeper.
Joanie was now sleeping almost exclusively on the couch. The nights were becoming increasingly problematical for her regarding her ability to get a decent night’s sleep. She would begin, coming to bed after she had stayed up as long as she could, and the desire to sleep outweighed her ability to stay awake. She would then come to bed, and we had devised sort of a plan that would allow her to sleep on her back, but be elevated enough to ease her breathing problems.
It wouldn’t take long, before she would wake me and I would escort her to the couch, where she would assume a similar position, but for some reason it was easier for her to breathe and sleep.
She wasn’t getting better, and our hope for some kind of miracle had faded by this time, except for her. As she told me on more than one occasion, she was going to lick this thing, and getting better was all that she thought of right now.
An email update I sent out on Wednesday, March 19, 2008 was an example of the spirit she still hung on to, and the future she looked forward to.
“Yesterday the health care servants came to begin the arrangements for Her Majesty, and it went well. I met the nurse who was doing the preliminary processing outside, and told him that whatever he did, he was not to mention the word hospice in our house. That word was an anathema at this time, and I told him she would fire him on the spot. Everything went well, and we managed to arrange for a bed to be brought in that will make it easier for me, and for them, when they come, to take care of her needs. It will also be easier on my back since that couch is so low.
“To show what shape her spirits are in, and how she is thinking, is this. She put the nurse in a really awkward position when she asked him, “How long is this going to go on?” He, somewhat puzzled, asked her what she meant, and she replied, “Before I get better and able to get around again?” Of course he didn’t have an answer, or if he had one, dared not utter it, and he stumbled around a bit and escaped with some non-answer. I thought we might be seeing the makings of a good politician. Joanie and I talked about that later, and I said, nurses are not the ones in the position to be offering opinions on such matters, nor should they be. She seemed satisfied with that.”
The bed arrived the next afternoon, and was a welcome addition to the living room in our modest home. Bailey and Brandy were much confused by the bed that now occupied much of the floor in what constituted our living room, but they acclimated, and once Joanie was situated on the new bed, found ways to get up on the bed and check out their good friend.
It took some doing to get her moved over to the bed, but once we did, she promptly fell asleep, an indication to me this was what she needed. The weeks on the couch had taken a toll, and that was now behind us.
That day, she had no visitors. In fact, she had no visitors the day before either. She had been out of sorts on that day, and wanted to see no one. It was my job now to manage the flow of visitors, which I did, but at not time did I ever restrict any visitors without asking her first.
When I would get a call from someone who wanted to stop by, I would always ask her, and if she allowed as to how she might welcome a visitor, it was up to me to make the arrangements. Afternoons were usually the best, but any visits were always her decision. My idea was that it was her place to decide if she wanted to see anyone or not, not mine. That always went back to my idea of her having as much control over what was going on as possible. To me that was an important part of dealing with this disease, and one I had never deviated from. It was, after all, her life.
It was on Thursday, the bed came to our house, and so the next couple of days were something of an adjustment. The bed was set up in the middle of our living room. There was nowhere else to set it up. On the one hand, it was in a place where Joanie could see out the picture window, and also see the television when she wanted to.
On Friday, which was Good Friday that year, she was still out of sorts, despite being able to get some rest on the new bed, so there were no visitors that day either. Most of the day she slept, under the influence of Dilaudid and Atavan, two drugs that helped keep the pain and the anxiety of the time under control.
The NCAA basketball tournaments were on, and while the TV in the living room was on all the time, the sound remained off. Even when it was on, it was on barely audible. It seemed she just wanted to see that life was going on around her, even if she couldn’t participate in it.
That Friday evening, as I sat there by the bed in the living room, one of the cats found a place to nap on her legs, and that seemed to please her. The light from the TV was bright enough, and the only other light on was the light over the sink in the kitchen. It was a quiet night.
Joanie slept a lot that day, and later that night after she had another pain pill and another Atavan, she dozed off. I slept that night behind her bed on the couch, though I needn’t have. She never woke up until early the next morning, and woke me as well when she called for me to get her some water and her meds.
She asked me how I was doing, and I laughed, telling her that I was doing fine and she didn’t have to worry about me. She told me she still did, and shortly after she took the Dilaudid and the Atavan, she drifted off to sleep again.