Wednesday, 19 October 2011

You never know what to expect

And that's one of the most difficult things that you have to live with if you're caring for someone with this condition. At a recent consultation with the Professor to discuss the latest decline, we mentioned that S does now seem to have symptoms of depression, not really surprisingly. Knowing that S is very sensitive to any kind of medication - she very often gets side effects - he said he would review her history and suggest something to the GP that might help with her mood. We duly got a call to say that a prescription was ready for collection.

When I looked at the possible side-effects of the medication, I was amazed at the number of them and was struck by how many of them were things S already suffers from at times and also, and this is an odd thing about many drugs, that some of the side effects would be difficult to distinguish from symptoms we were trying to alleviate, e.g. 'feeling confused, difficulty concentrating, feeling disorientated (not knowing where you are), delusions and hearing or seeing things that are not there (hallucinations)' - just what you need more of when you have this condition!

Anyway as the dose recommended for S was less than half of the normal adult dose, I thought it unlikely that there would be side effects. Needless to say, I didn't mention the side effects to S.

She'd had a good day, one of the best for a while, fairly lucid and aware. I gave her this small dose before bed.

In the morning she woke up to go to the loo, then I helped her back to bed. She was quite lucid at this point, though she did tell me several times that she just wasn't right. I came downstairs, and left her to sleep, as I often do. The next thing I heard was a scream, 'Get out! Get out, all of you!'. At first I thought it was the woman next door as she has three kids and often shouts at them like this. I'd heard her shouting at them to eat their breakfast, as usual, but hadn't paid attention to anything else she might have shouted.

When I heard the same cries repeated, I realised it was S and rushed upstairs. She was lying quite still, apparently asleep. I was puzzled, but left her to sleep.

The next time it happened, I went straight up and she was sitting up in bed. I tried to comfort her, verbally, and she screamed to me to get out, which I soon did. All went quiet and there were one or two further outbursts. Eventually I heard her moving about. I went up and she was much more 'normal' though she had some idea of what had been happening and was a little anxious, understandably. By this time I had spoken to the Memory Clinic and was told that if it was the medication, the effects should pass in a day or two. They advised me to stop giving her the med (which I'd already decided to do).

I told S all this and reassured her. For the rest of the day, I didn't let her out of my sight. We mostly watched music DVDs and she was fine, just like she'd been the day before. At one point when I was helping her with the toilet there was a brief recurrence, aimed mostly at me, which quickly passed.

This morning, just as I was thinking that we were probably out of the woods, I heard again the familiar words, 'Get out! Get out, all of you!' But this time it definitely was coming from next door! Our neighbour had her front door open (right next to our front door and almost directly under our bedroom) and was clearly trying to hurry her kids out. She repeated the words, word for word, several times, increasing the volume each time, then slammed the door - they always slam it.

A few minutes later, I heard S! She was using the same words, with a few bloody hells thrown in. This time I let it run its course and phoned the Memory Clinic (they'd asked me to report back). I was told again that it might take a while for any effect to wear off. I was slightly reassured. Eventually S came out of the bedroom. I was able to discuss it with her quite rationally and to reassure her that we should soon be out of the woods. We had what passes for a normal day. There were two occasions when I thought she was going to start up again, but they passed in an instant.

Now I'm bracing myself for what might happen tomorrow, wondering whether next door will be a bit quieter or whether, as S has gone to bed very early tonight, she'll wake up before the next door kids have to leave for school and the lack of this 'trigger' might eliminate the problem.

It's all just so weird. Sometimes you start to doubt your own sanity.

There's usually something good to hang on to though. We have talked a lot during the day about this latest problem and S keeps telling me that she is really trying hard, and she is, usually quite successfully.

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