Laughter lost, laughter regained

That first day, the day spent in the emergency room, we still didn't know for certain what was happening to my mom. Initial tests weren't showing a stroke. Her blood pressure was so out of control, systolic readings climbing over 220 most of the time, diastolic readings often over 100. Her blood pressure had been so high for so long that the medical staff had to be careful, bringing the pressure down, but not too much or too quickly. Different medicines were tried, trying to find that delicate balance. But Mom was, as the ER doctor told us, a yo-yo. We laughed through our nervousness at that news. Mom frequently quoted the high readings she had had at her last doctor's visit, a week earlier. So frequently, I teased her for being proud of those numbers. We continued laughing, teasing, seeing each other through the stress.

But over the next several hours, Mom got more distracted, more absent. She didn't laugh anymore. Facetious comments didn't make sense to her anymore. She was less and less herself with each passing hour. The staff kept testing her for symptoms of stroke, but nothing major appeared while we were in the ER. They thought she might be having transient ischemic attacks, TIAs, and I clung to that first word, transient.

Eventually she was moved to intensive care, while they continued to work on stabilizing her. The next few hours saw Mom getting further and further from herself. She could still speak words clearly, but picked the wrong words more frequently, coming up with improbable phrases like "good kitchen" when asking for who knows what. "Shit," she eventually said at one point, after struggling to say something else. "Well at least you still know that word," I laughed. It was, after all her favorite swear word. But she didn't remember why that was funny. And it was the last time I laughed while with her. I kept thinking about that moment while I finally made my way home. We've always teased each other, always found something to laugh about in difficult situations. But that was gone. And I didn't know for how long.

The past couple of weeks have been especially difficult. Mom has been improving just a little bit each day in pronouncing recognizable words, but she can seldom say enough to get her point across. And she's been getting increasingly upset about it, to the point of screaming whenever I can't figure out what she's trying to say. When she wasn't aggressively expressing her anger and frustration, she has appeared blank and unresponsive. Sometimes I felt I could still see my mom in there somewhere, but many times she seemed utterly gone.

But tonight was better. She could say a lot more words clearly, and was a bit more patient when I couldn't guess what she meant when she wasn't clear. There was still some screaming, but not as much. And for the first time since this all began, she even showed some of her own personality and humor again. At one point, after several failed attempts to say something, she waved her right hand and said, "Forget about it." The gesture, expression, and tone of voice were so characteristically her that I laughed and said as much. "Well, forget about it anyway," she said back. That's my Mom.

Manual earth restructuring implement

The problem with the Golden Rule, I've long thought, is that not everyone wants to be treated the way I want to be treated. It's hard enough to put yourself in another person's shoes when they're traveling a path you've never walked. It's even harder to figure out what they might consider helpful.

For my part, it's okay not to know what to say to me. I've been on that path, the one where people around me are suffering in ways unknown to me, and I have no idea what to say. Just saying, "I'm sorry you and your mom are going through this," is enough. With most people, that's about as much as I want. With most people, I'm ready to move on to ordinary topics, ordinary tasks. You're not being insensitive if you ignore the elephant in the room after its presence has been acknowledged.

The hardest part about going back to work after Mom's stroke was answering the same questions over and over. I was so grateful when one colleague simply said, "I'm sorry," and left it at that for a couple of days. After giving me that bit of breathing space, she told me she didn't know what I preferred, but she figured I might not want to hear, "How's your mom?" every day. She was right. And I appreciated that she said she didn't really know how I wanted to be treated.

But I've also appreciated hearing just the right words from people who have walked this path, or one very like. They were hard words, words other people might think I wouldn't want to hear. One person wrote a note wishing me and my mom a way out of this misery. Misery. Such a strong word, but exactly the right word. Reading it, I felt a little less alone, for the first time in many days.

Today someone told me not to feel guilty if I find myself resenting being on this path. Resentment. I've been reading a lot of books on stroke, and on caregiving. I kept looking out for that word, resentment, in the latter. No one seemed willing to say it, to acknowledge it. Many other feelings that family members might feel were addressed, but not that one. Was I the only person selfish enough to think, "Dammit Mom! How could you do this to me?" even as I watched her suffering? Hearing another person say that one hard word also made me feel a little less alone.

We look forward, we look back

It's a lot to process, when something like this happens to you, to your loved ones. You play the same events over and over in your head, trying to make some sense of them. If you're me, you play them in your head even as they're happening, trying to second guess yourself before you've even had a chance to make a decision. Starting this journal feels like it might be a good way to process it all, and maybe even let it go. It's done. I've thought about it. I've written it down. Now move on. Because there's more to come.

I expect what I write for the next few days will jump back and forth in time. Remembering what's happened this past month. Reflecting on what happened this day. Or I might change my mind and abandon this journal altogether. Who knows. I sure don't.

It begins

One month ago today everything changed.

One month ago today my mom had a stroke.

We didn't know that's what was happening. Not that day. She'd been having dizzy spells and losing her balance. She and her doctor were starting to look into that. But Monday afternoon she fell. And again on Tuesday morning. I stayed with her that day, calling her doctor, describing her symptoms, trying to decide what to do. Mom had an appointment with a specialist to see about the dizziness the next day. It seemed okay to wait for that. By the middle of the afternoon it was clearly not okay.

It started with her sitting on the edge of her chair, looking absent and a bit confused. "What's wrong?" I asked. "I don't know," she said. She decided she needed to go to the bathroom, but needed my help to get there. A few steps away from the chair, she started to lean against me heavily. I was on her left, and she didn't seem to understand when I said I couldn't hold her up much longer. I don't think she even knew how far to the left she was leaning. I slowly lowered her to the floor and helped her scoot back to lean against her chair. I called for an ambulance and waited.

While we waited, Mom started to mix up words. That's when I started to get scared.

That's when I knew that everything had changed.