I think I’m adopting a siege mentality. For the past few days, really a week and more, I’ve felt like I’m behind a crumbling wall holding the invading hordes at bay by periodically dumping boiling oil over the side. Every time I think I’ve gotten a little breathing room, some fresh attacker wades the moat and starts swinging that grappling hook.

I’ve never wanted this blog to be about caregiving, but six years into our situation (the anniversary of the stroke was in May), I will acknowledge that caregiving is an all-consuming lifestyle and one that does not get easier over time. You get more efficient at the mechanics of it all, but the psychology is an ever-changing, complex beast. Plus, you have to deal with all those kind souls who are ever ready to tell you what you’re doing wrong. Consequently, I suspect this topic will come up more in my writings as time marches on, not to mention the fact that the next person who says to me, “Well, you’re at home all that time. How hard can that be?” is going to get both barrels. Cluelessness grates on me more than it used to.

Last night is a good example of the kind of thing I deal with daily. About 8:30 R. had one of what I call her “fits.” Long experience has shown me that these are entirely psychosomatic and related to whatever she’s upset about at the time. That’s not to say that she doesn’t feel unwell, but that everything she does makes that feeling worse. The maddening aspect of these episodes is that she stops communicating, so dealing with her is next to impossible. Last night, we had the contributing factor of tomato soup. It always makes her sick, but periodically she demands to eat it, telling me I don’t know what I’m talking about. Fine.

In this instance I think she was also hot. I’ve been putting off calling the air conditioner man to give us a shot of freon for as long as possible, but the house has been getting stuffy in the late afternoon. We have no trees to shade the roof and the unit struggles on days when the mercury nears 100 degrees. So, we have an appointment for AC Guy’s services Wednesday and in the meantime I’m keeping the fans running. R. has a somewhat interesting reaction to overly warm conditions that long pre-dates the stroke. It’s as if she slows her breathing to the point of denying herself oxygen. She always says the same thing, “There’s no air.” That’s because for all practical purposes, she’s holding her breath.

After trying to get any kind of answer out of her for 30 minutes last night and failing, I finally insisted she go to bed at 9, which was one great big drama fest. When she was settled, with a circulating fan moving the air in the room and a cool pack behind her neck I told her I had a few things to do and I’d check on her before I went to bed. This was 9:15. I rode 13 miles on the bike, checked on her, and told her I was going to bed. This was 10 o’clock. At 11:30 she called me. I stumbled into her room having been awakened from a sound sleep and she said, “Oh, did I wake you up?”

“Of course you did,” I said. “I’ve been in bed an hour and a half.”

“But you said you were going to do some things before you went to bed,” she protested. Never mind that I had made that statement more than two hours prior and had been back in the room and spoken with her in the intervening period.

After that little incident, it took me three hours to go back to sleep, so we’re up to somewhere around 2:30. A little before 7 she called and woke me up again. Again I stumbled in. Again she said, “Were you asleep? You’re always up by now.” Well hell yes, but not when I’ve been up half the damn night.

Add to this a complete disappearance of specificity from the world and I’m tap dancing on the edge of a nervous breakdown. When I’m at my absolute peak best, I can handle ambiguity. When I get nothing but ambiguity (for instance, it took a 2.5 hour wrangle Sunday to get R. to answer the question, “What do you want for supper, honey?”) I just want some freaking clear indication of what’s expected of me, when an item will or will not be delivered, when someone will or will not be here.

Yesterday I missed a phone call from my friend M.H. because I was riding so hard on the bike, sweating and gasping that I literally did not hear the ringing. When I saw the missed call and dialed her back, I explained what had happened. She asked why in the world I’d push myself like that. Masochistic as this sounds, as a pure coping mechanism, the more the work out hurts, the more mindlessly intense I can make it, the better I feel afterwards. I frequently hear trainers on fitness shows tell a client that the activity in question will help release some aggression. I understand completely.

So, here I sit behind my castle walls waiting for the next wave. It can be anything. Another unexpected expense that makes me feel like money goes out in a tidal wave but only comes in via tiny, insufficient droplets. Another Empress-inspired crisis over sprinkler heads about which I do not give a damn but to which I must respond because she’s 85, tiny and frail for all her grit. Another refusal to communicate on R.’s part that blind sides me with a change of plan. Oh yeah, it’s easy as hell to be home all the time. Not a problem.

Note: To all of you well-intentioned souls who have the urge to chime in and start offering solutions and fixing things, please don’t. Frustration over a situation at a given moment on my part does not indicate an inability to cope or a need to be rescued. Caregivers need to vent. That’s all it is. However, in my current mood, even the best intended suggestion on your part is apt to result in a less than gracious response on my part, which I don’t want to do to any of you. Fair enough?