Dragonflies, Butterflies & Lady Bugs

Irony and the Universe

Did I actually dare the universe to fuck with me yesterday? When I said there was some kind of end bracket on the most tumultuous and emotionally wrenching three years of our lives? I think I did. And I think I know better. And just to remind me, after I posted my entry and went about my merry way, Jeff got a phone call from the hospital. His mother had a stroke. It may be time to enact her living will, which specifically states no life support, including feeding.

Some back story. Most of you who have read for awhile know that Jeff's mom suffers from multiple sclerosis. She has lived in an assisted care facility for about five or six years now, having been admitted there against her wishes by Jeff following a very bad episode where she was stranded on the bathroom floor for almost two days. At this time we all became aware of her episodes of "confusion," which were either that -- confusion -- or in their worst state, almost full-blown catatonia. Her neurologists struggled to find the right combination of meds to address the problems. Jeff, with the support of her family, made the decision (and had the power-of-attorney to back it up) to admit her to an assisted care facility. We were worried that she might have an episode and injure herself, or worse. It was time, and when she came back to herself and got over her anger at Jeff, she understood it. I can't say she happily accepted it, but she understood and didn't create too big a fuss.

Over the years, her episodes -- Jeff always says she's "in her confused state" when they come -- have gotten closer together and worse. They are often coupled with infections of one sort or another and often precursor to a hospital visit. On at least three occasions since Jasmine died, Jeff has been told his mom might not make it out of the hospital. The second-to-last time she was in, the doctor once again told Jeff it might be time to invoke her living will. Every time, she has pulled through, which is why when she first went into the hospital last week, I wasn't too worried. Her confused state has been pretty much ongoing since she moved to a local facility about four months ago. It's been frustrating, and Jeff has the patience of a saint with her. To get a sense of what it's like, imagine hanging around someone who's very drunk and who keeps asking for the same thing over and over again, even after you've done or gotten said thing. She nods off from time-to-time in the middle of a conversation. She slurs to the point of being impossible to understand. And like any good drunk, she is good at pushing Jeff's buttons by making him feel guilty or angry or what-have-you. He has been incredible. I don't know where he finds the patience, but I've watched him with her on the phone. You could never tell by his voice that he's making the most murderous faces. It is hard work caring for someone who is chronically ill, harder still when mental status is impaired. Jeff -- the whole family -- has been frustrated, but his mother has never had a clue. He's that good.

So last week, she was admitted because her anti-seizure med levels were too high. She couldn't swallow -- the muscles in her throat weren't working -- and so they started an enteral feed (put the tube through her nose), stabilized her med levels and sent her back to the facility. The living will was mentioned when she was in the hospital, but Jeff said he wanted to give her a few weeks and see if she started to recover. It's happened before, so it wasn't an unreasonable decision. Jeff's mom has been pretty much unconscious for the past week and so he has been unable to discuss it with her. On Sunday morning, they called and told us they were readmitting her to the hospital because there was some blood around her feeding tube. Jeff and I shrugged it off, for the most part. From our experience with Jasmine having things in her nose, we just figured her sinus passages were irritated and that the blood must be from that. We made plans for Jeff to go see her on Monday to check in with her docs and generally see how she's doing.

Yesterday morning, we had some errands to run. When we came home, there was a message on the answering machine to call the hospital. A non-emergency, she said. So he called, and while he was on the phone with the nurse, the doctor called -- thank the gods for call waiting -- and told him that the cause of the bleeding was a stroke, and probably a bad one. He started talking about things like quality-of-life and living will and Terri Schiavo. I was a little perturbed at what seemed insensitive -- mentioning Terri Schiavo -- but I know that her ongoing case is part of the reason Jeff's mom didn't want a feeding tube if she were in that kind of state. The upshot is, Jeff has an appointment this morning to meet with the medical staff and go over the results of the bazillion tests they ran last night to see the extent of the damage the stroke has wrought. I feel for him. We've had that meeting before, in the not-too-distant past. And frankly, those doctors and that facility were closer to us, more compassionate. This meeting will take place with virtual strangers sitting on the other side of the table. The only thing that makes it all any easier is that Jeff's mother had the presence of mind some time ago to write a living will. We know what she wants. It's just a matter of letting it happen. And I keep thinking of bindyree's recent posts about compassionate dying -- that there should be a better way than starving/dehydration. I suppose when all is said and done, we will truly have empathy for what that family has gone through. Thank the gods the difference is, his family will be united in supporting his mother's wishes, which were explicitly and legally drawn out.

So universe, I'm sorry. Apparently the concept of a relatively calm part of my life is not in your plan at this time. ::sigh::

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