Brian here. Bad news is rough, but no news often feels worse. I’ve been stressing about Julie, wondering how much longer I’d be able to enjoy her company. On bad days, I thought she might have two weeks left. On good days, I thought six weeks was more likely. But of course, I’ve never been through this before so I don’t give my estimates much credibility. I imagine a lot of you have been wondering, too.
Last week I asked the hospice nurse for her guess. These folks deal with the dying day in and day out. They don’t have any magical insight, but they do have a lot of experience to base their guesses on. Her guess: somewhere in the two-to-six-week range.
I wrestled with whether to share this with Julie. On the one hand, I couldn’t see that it would help her. On the other hand, who has more of a right to know than Julie herself? We’ve never held anything back before, and I couldn’t see a reason to start now. Ultimately, it came down to the fact that I wanted to share it with her family and all of you, but I was afraid it would get back to her. I knew that if she heard it, she should hear it from me. So I told her.
That turned out to clearly be the right thing to do. Julie doesn’t see some of the changes in herself that I see, and she didn’t enjoy the idea of carrying on as she is indefinitely. It looked to her like she was staying in place, and it’s not a great place to be. The knowledge that the end was coming, that pain and pain pills and sleeping nearly around the clock would cease, that was a relief to her.
On the physical side, Julie’s health seems to go in plateaus. She’ll take a sudden drop in some aspect or another, and then stay pretty stable for a while. A few weeks ago she suddenly had problems rolling over in bed. If she’s was uncomfortable laying on one side, she’d have to get out of bed and get back in in order to lay down on the other side. I don’t know if this muscular or neurological, but it’s the reality she’s living with.
A few days ago, Julie suddenly became too unsteady to walk unattended. One day she was OK, the next day she needed help. She can still walk down the hall, but I have to be at her side or behind her, steadying her as she goes.
Then on Friday I came home after being a way for several hours to find her sitting on the edge of her bed. She didn’t know how long she’d been there, but it had been a long time. It seems she’d gotten herself up with the intention of laying down in a more comfortable position, only to discover she couldn’t do it without help. So instead, she sat on the edge of the bed and waited for me. I don’t really understand the problem, but it’s hers and it’s real and it’s what we need to deal with.
She sleeps a great deal. I’d estimate that I see her awake about an hour a day, spread out over four or five short segments. She pretty much only wakes up when she needs something — a pain pill, a bite to eat, etc.
Speaking of eating, she’s prone to cravings. A while back she developed a sudden (like instantaneous) craving for Taco Bell. I picked up food from Taco Bell, figuring that she’d have a bite or two and I’d wind up eating most of it. But no! She skipped the tortillas, but ate the insides out of two Burrito Supremes in short order. If I’d known that was going to happen, I would have ordered something for myself.
Another time it was Kentucky Fried Chicken. This was less of a success, though, as she reported it wasn’t as good as she remembered it to be. That may have just been a matter of bad timing though. 3PM may not be the best time to pick up freshly prepared chicken — especially given that the store was vacant of customers except for myself.
Yesterday, it was Krispy Kremes. She wanted whatever they were currently making, but when I got there they’d finished all their doughnuts some hours earlier. Left to my own devices, I got her a cream-filled glazed doughnut. I took it home, where she devoured most of it in about two minutes. For a woman who’s had next to no appetite, that was a great success.
So you see how her time goes. Lots of sleeping, occasional declines, and rare moments of cravings satisfied. And when we’re not discussing the possible need for another pain pill, we talk about the joy we have at being in love. It’s not a good life compared to what we had, but still, we count ourselves lucky.
