Robin's in charge (and chocolate donuts)

Well, Robin's in the drivers seat once again. Friday night while getting her ready for bed I mentioned how it had been a tough day. Robin asked me what was so stressful, so I told her about the afternoon and how we'd had difficulty waking her up. This made her a little sad - she didn’t realize what had happened in the afternoon. She said it also helped her understand why Dad and I looked anxious when she woke up. That's why she had cried in the afternoon - because we'd been acting so upset and stressed.

I described the rest of the afternoon and how she had been confused. One of the "confused" things that she had been talking about in the afternoon was "the baby". She said she thought Dad and I had also been taking care of a baby in another room, but that we didn't want to admit it to her. She understood now that some of the things she had been thinking of had come from her imagination.

We finished talking about the rest of the day, and of the nurse's visit in the evening. As I went along with the story I kept asking if Robin wanted me to continue telling her about what had happened. She wanted to hear everything so I passed along the observations from the nurse and the signs and symptoms that the nurse said to look out for. I noted that these symptoms were all described in the little blue booklet "Gone from my sight". I offered to read the booklet to Robin if she were interested. She said she would like that and when I offered to read it the next day she said "no, I might not be around tomorrow, let's read it now". We were having this discussion late, late Friday night - well technically early, early Saturday morning. Dad had just gone to bed, but Robin suggested we wake him up so he could help read the booklet to her if I got stuck.

So at 12:30am I woke Dad and he pulled a chair up next to where Robin lay in bed. While I went downstairs to go find the booklet Dad and Robin talked and joked.

It was a little stressful when I started reading the booklet aloud, but we were soon joking around. At one point Robin took a sip from her water bottle and dribbled a bunch down her neck. Instead of getting upset she just said "that was refreshing" - and we laughed.

As we read through the section on "one to three months prior to death" it covered issued like eating less and having less interest in visitors. Theses are things that Robin has been experiencing recently. As we began to read the section "One to Two weeks prior to Death" many of the things were happening in her life right now - sleeping more, experiencing disorientation, temperature fluctuations - this section really caught our attention.

As we read along we would pause and talk and joke. At one point Robin had trouble deciding whether to drink from a glass or from her water bottle. As I began reading again I pretended that the booklet said "the patient may have trouble deciding whether to drink from a glass or water bottle" - this improvised reading first caught Dad and Robin off guard, but then made them laugh.

Along the way we asked Robin if there was anything we could do to help her and she said "Yes, you jump first"!

After we were done we just went back to our normal chores, although it was quite late. Robin needed the gauze around her stomach tube replaced so she and Dad set out to do that. I went and did some things like emptying the dishwasher and taking out the trash. Everything was pretty normal except we were doing these tasks at 1:30am. Maybe it was a way for us to settle down, but it really felt more like the way we've been living for months now. We haven't been focused on the end of Robin's journey, we just keep focusing on the day that we're presently in and what we are doing. I don't think we are avoiding reality - in the past we've already spent days and weeks talking about death. I think we've simply entered a zone where we just focus on the moment.

When I had the private discussion with the nurse yesterday she had said something about learning to live day-by-day. At the time I thought, Robin learned to do that a long time and we've been practicing it for years. I suppose maybe some people need to be reminded, but Robin's way ahead of the game. I think that's what makes much of our time so peaceful (well, except for the stressful moments!).

When all the chores were done I asked Robin if there was anything else to do before bed. And she said "yes, eat chocolate donuts". She asked if I would split one with her and I said yes, so then she asked "what other type of donut could we split?" (we've got three types of gluten free donuts in the freezer!). We settled on cinnamon sugar for the second type of donut.

At three a.m. we sat on the edge of the bed and we shared a chocolate donut and a cinnamon sugar donut and two big glasses of milk! :)