After having an excellent month since coming home from the nursing home, showing improvement in his Alzheimer's tests and being very lucid, coherent and companionable, he's now gone into some other reality where he keeps wanting to go home! It is hard for him to realise he is at home, even though he recognises our possessions and surroundings and knows me and the cats. The other reality gets obsessive.
Last night he wanted to go down our steep front steps in the dark and wet! And with his wheely walker to boot. He is a high falls risk, so that is never an option any more. (The back steps have been modified so he can go out that way, with help.) He was also talking of driving 'his' car, even though he surrendered his licence last year and our only car is registered in my name. Well, I keep all the doors locked from the inside and the keys on my person, but even so it is difficult. Anything I say in reassurance gets incorporated into the fantasy. E.g. Me: 'You don't have a car any more'. Him: 'I've got to take the car away because I don't own it any more.' And so on. He thinks I'm the mad one.
I am not the best person to work on him — though I do — because of my anxiety about him and about the whole situation.
This has been going on for a few days now. Perhaps it is a phase that would come to a natural end, but I don't know that and anyway the sooner it ends the better.
He has been diagnosed with Parkinson's and will be starting medication for it soon. We had to get his pain medication for his severe osteo-arthritis (mainly in trapezius muscle, i.e.back of neck and right shoulder) sorted out first.
I give him a very low-dose anti-psychotic when he gets agitated at night — so that not only he but I can get some sleep. I have to try and look after me, otherwise we're both in trouble. He was briefly on a very strong painkiller prescribed by his geriatrician and started the anti-psychotic a few days later. He turned into a zombie and was also unable to straighten up properly. At first I thought he might have had a mini-stroke, but the symptom gradually wore off in the course of a day, and next day he would be crooked again but in a different direction — listing to the right one day, the left the next, stooped far forward the day after that. Also his speech became slurred, and he seemed more confused. I contacted the geriatrician, who said to take him off the pain medication. Also my stepdaughter found out that that anti-psychotic has Parkinson's-like side effects, so I took him off that too.
We saw our GP, who said the anti-psychotic was in such a low dose that it ought not to have side effects, but perhaps in combination with the painkiller.... It was obvious that it puzzled him. He said it shouldn't account for increased confusion either, as it was designed to have the opposite effect. I gave him all the tablets, painkiller and anti-psychotic, saying maybe he could use them as samples for patients or something, and he remarked what a good thing I hadn't paid a fortune for them. He told me the very strong painkiller would take five days to 'wash out of the system'. He prescribed a different pain medication which we began immediately, which thankfully is proving successful and doesn't have the side-effects.
Two nights later, after going peacefully to sleep at his usual time, [DH] woke at midnight — just as I was shutting my computer ready for bed — and emerged into the living-room, looking bright and aware. 'Hello!' I said. He said hello back, and started to say something about setting up a central command. I told him, as I've had occasion to a few times before, that he must have had a dream which still seemed real. In the past he has accepted that and gradually come back to reality. This time, he asked me (not aggressively), 'Who are you, anyway?' Wow, that was a first! (And has not happened again, so far.) I told him, 'I'm your wife, Rosemary.' 'Well,' he said, 'I don't care whose wife you are; we've got work to do!'
I gradually soothed him down and persuaded him that the work could wait until morning. I burnt lavender oil, which in the past has had a calming effect. We both ended up sleeping soundly the rest of the night. Next morning I asked my neighbour to sit with him a little while, and dashed down to the pharmacy with the repeat prescription for the anti-psychotic. (It was a Saturday and our doctor wasn't working; this seemed the quickest solution.) But then, it was only three days since stopping the strong painkiller, so I didn't dare give it to him yet in case it was indeed the combination of the two that caused the side-effects. Luckily he had two relatively calm and normal nights. Fifth night, this stuff about needing to go home began and he became quite irritated with me. 'Well,' I thought, 'We're about to find out whether the anti-psychotic was the cause of the side-effects,' and gave him one. He did calm down in a little while, in a sad and rather zombie-ish way, and I got him into bed. Not before he became profoundly stooped forward.
Next day (yesterday) I took him out for his routine blood test to monitor his Warfarin dose. He barely managed it, and the getting home, because his legs were so weak. However he wasn't so stooped. He had lunch, slept half the afternoon, got up and watched a DVD with me, and became even more obsessed with going home, preferably through the front door, and driving the car. He was getting quite agitated. Nothing I said helped; neither did a phone call I made in desperation to his son Adam, though Adam probably thinks it did. (He is getting a sort of childlike cunning, saying what he thinks will get people off his back, then going right back to his obsessions when it's just the two of us again.) So I gave him another tablet, he started falling asleep in front of the TV, and being really 'out of it' in a drugged rather than sleepy way when I roused him. So I put him to bed.
Early this morning when the cats woke us for breakfast, he knew he was at home. We went back to sleep for an hour, after which he was once again on about going home. He put his shoes on, gathered up a couple of books, and was all set. I persuaded him to let me give him his insuiin injection and take his blood sugar (normal — so it wasn't a high blood sugar delirium) and to have breakfast and his morning medication. He realised he was in pyjamas, and said, 'I haven't got any clothes so I can't go out.' (Believe me, I made an instant resolution to keep him in his jimjams all day!) His shoulder was in pain, medication not yet working, so I persuaded him back to bed. At first he said, 'I dont think I can sleep here,' but I showed him the cats on the bed and assured him it was his own bed. I don't think he believed me, but he submitted to being put in it and went to sleep.
'It's his journey,' some people say. I wonder if indeed it is the will of his soul.
It is and has always been the combination of physical and mental problems that makes things so difficult. Once again I am contemplating a nursing home, in fear I won't be able to cope. When he can't move his body very well, it is hard for me to move it for him; I don't have the strength. I would hopefully not choose the same nursing home again, though. There is another that has both high and low care patients, where he could find more people to converse with. They didn't have a spare bed last time; I think I might have a talk to them and get on a waiting list. I also think about maybe a week there in temporary respite to see how it is in practice. Persuading him might be a problem, though! I also think about taking him for a visit to look the place over, but he'd need to be a bit more in here-and-now reality for that to have any point.
I even wonder if he sometimes thinks 'home' is the nursing home he was in before. Some things he says sound as if that's so.
Anyway ... there it all is. And I am exhibiting signs of stress! (Funny little nervous habits; difficulty concentrating....) Please spare me a zap or two too, if possible.