Will the real Rosemary please stand up?

He's been delusional for days. It does seem to be related to codeine; hopefully the newly re-jigged medication régime will reduce his pain and he will have less and less need for the codeine. It will have to be out of his system a day and a half before its effects stop.

Meanwhile he gets confused about where he is and who I am. Sometimes he has to be told the way to the toilet — in a unit he's lived in two and a half years. Sometimes he goes and lies down on the spare bed, thinking that's where he sleeps. He exclaims how like 'this place' is to where we 'used to live'.

He seems to be in dual realities, as I've mentioned before — sort of knowing he's at home, and yet thinking he's somewhere else. He has a similar confusion about me, at least some of the time. He knows this woman with him is his beloved partner, but sometimes thinks his wife Rosemary is someone else ... or that I am his wife, and yet there is another woman.

After our last visit to the doctor together, he said to me worriedly, 'There's another factor. I've been sleeping with two women: you and my wife, Rosemary.' It took a lot of reassurance to convince him there's only been me and I am his wife, Rosemary.

When I got him clear on the fact that he was living here (at home) with his wife (me), he was jubilant.

'We're re-united!' he said, and wanted to put announcements in the paper and a sign out on the street to tell everyone we were together again and that he could now be found at this address. I persuaded him we could do it by email. Later he said, 'I feel complete.' And he sounded it. I have been treasuring that moment in retrospect ever since.

And there was the time when he was in bed (as he often is these days, with daytime naps as well as long night sleeps) and I wanted to know if he needed anything. He had trouble responding to my suggestions, so I thought to simplify it with a more direct question.

'What do you want?' I asked. He looked up at me bemusedly, thought about it a moment, and said, 'You.'

Then, a couple of nights ago, as he was getting to bed, he asked, 'Could we go down to the other room and say goodnight to Rosemary? She's been through a rough time. It's hurting her too.'

'I'm Rosemary; I'm your wife,' I assured him yet again.

'Yes, I know that,' he said impatiently. 'I mean the real Rosemary.' Then, dreamily, 'She always kisses me goodnight.'

It's true — on the many occasions he goes to bed too early for me, I do help him into bed, tuck him in and kiss him goodnight, like a mum with a child.

I decided to humour him, so we went to the spare room and he could see there was no-one there. He went back to bed. I lay down beside him and gave him a hug.

'We'll get through this,' he said, 'But I want Rosemary to know that I care for her.'

With tears in my eyes, I said, 'She does know.'

I Perceive That He Craves Purpose

He is all the time in alternate realities now — except it's not so straightforward as that, because he is at the same time partly in this reality ... or in parts of this one.

He gets cross with me because I seldom understand the exact details of what he wishes me to do. He tells me he wants me to drive him to go and see 'the boss man of the other mob'. [American readers, 'mob' here doesn't mean gangsters.] He cannot explain to me who the boss man is, let alone his name, nor what the other mob might be. It annoys him that I don't know already and can't carry out his instructions without knowing.

When he said the other mob was, 'You know, over there in Prahran,' and I told him Prahran was in Melbourne and we couldn't drive there in an afternoon but would need to take a plane, he said he was losing patience with my stupidity.

Sometimes he wants to drive himself, then remembers — because I have told him repeatedly — that he doesn't have a licence any more.

Other times he thinks we must throw a big party (tonight — of whatever day he suggests this). And/or we must put me 'on a pedestal' so I can tell people all about 'the whole thing'.

Long, long before I knew him, he had the brainwave to bring an accelerated learning program for teenagers to Australia. He persuaded a friend with appropriate skills to become co-founder, and they launched Discovery, a hugely successful program which was later taken over by others, spread all around the country and I believe is now being presented in New Zealand. Learning of his current state of health, various old friends have contacted him to pay tribute, saying what Discovery meant to them and their children. It was inspirational and life-changing, they tell him. Finally, today, something he said clued me into the fact that he is somehow reliving that experience and wanting to start Discovery anew — or perhaps he thinks it's for the first time. He is clear (today at least) who I am, and who his old friend the co-founder is, but it seems that in some way he is casting me in her role, in his mental visions.

One of his oldest pals recently said in an email, 'My sadness is modified by the knowledge that in whatever moments he has of lucidity he will create new visions and grand plans, and so live those moments with enthusiasm and expectation. That is what he has always been and will forever be.' Very true — but there is less enthusiasm and expectation, more drivenness and frustration. And it is not happening in the moments of lucidity but in those other moments ... which are now about 99% of the time.

Well, the doc prescribed codeine phosphate for his pain, which I am giving as seldom and little as possible without having him be in agony. Guess what, it metabolises into morphine in the body! (But we can't give him anti-inflammatories because he has to take warfarin for his artificial heart valve. And so on and so on. His medications have to be carefully balanced.) He is now on a low-dose anti-psychotic without the Parkinson's-like side effects, and he has begun his Parkinson's medication. Also he has been taken off Lipitor which can cause both joint pain and memory loss (!) and put on Lipidil which does the same job (lowering cholesterol) without those side effects. He has also had blood and urine tests to make sure there is no underlying infection which could be causing added confusion.

Seems to me it's the Alzheimer's which is causing it. The symptoms match with those described in a very good book on Alzheimer's which my stepdaughter got me.

One benefit of the medication changes is that he has a bit more strength in his legs and is not bent or twisted as if from a stroke. And my back, which I temporarily stuffed trying to help him move himself, is getting better with treatment.

All the same, I am finding the delusions hard to cope with. When possible I go along with them a bit, and/or try to distract him. Distractions only work for a little while, though. He has always been a driven man, in his quest to help humanity and the planet. Some activities he would once have enjoyed, he now often says he hasn't time for because he's got to do this other stuff.

The anti-psychotic doesn't make him less delusional, only less agitated concerning the delusions.

Yet without them — without some great cause to work for, whether real or imagined — I realise his life is purposeless. He was never a person who was going to be able to put his feet up in old age, rest on his laurels and enjoy his simple pleasures. And so, it appears to me, his psyche is having him relive and regain his sense of purpose.

There are many things I could do to help — if only I had the time. But it's only me doing the laundry, cooking the meals, washing the car, balancing the budget, giving him his pills and his insulin injections, taking him to umpteen medical appointments, shopping ... and trying to find a little life for me in between, as a writer.

The Fog Thickens

From an email I sent today to some Reiki channels I know, requesting absent healing: 

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.

There’s Good News and Bad News

Alzheimer’s Improved

We had an appointment with the geriatric specialist at the end of May, only last week. Dear Husband improved by two points on his cognitive test — enough progress to warrant continuing his Alzheimer’s medication. (If it doesn’t prove effective, they stop it — which makes sense, of course.) I was jubilant. Thank goodness I pulled him out of the nursing home when I did.

Arthritis

Meanwhile, his arthritic neck had become very painful. The geriatrician prescribed a strong painkiller, and said I should start him on one tablet a day, maybe increasing to two.  

Parkinson’s

He thought DH’s trembling hands a sign of Parkinson’s and prescribed some medication for that too, but I am not to begin it until he has been having the painkiller for two weeks.

Settling at Night

We followed up with a visit to our GP.  DH was zombie-like on the painkillers after I’d increased the dose to morning and night. It does carry a warning about drowsiness. The GP advised taking it only in the morning. 

‘Wouldn’t it be better at night because of the drowsiness?’ I asked, adding that DH sometimes gets up in the wee small hours and has a shower while I’m sound asleep. Great that he can shower himself; not so great that he tends to leave the water running. Instead the GP prescribed a tablet they’d tried in the nursing home. People with cognitive difficulties can get agitated at night; this drug is not a sedative but it settles them down.

‘Give him this at night and the painkiller in the morning,’ he said. So I have been doing that. 

Side-effects

Yesterday morning I took him breakfast in bed. A short time later I found him slumped to one side, eyes closed, his cereal spilling onto the bed.

‘’Oh what are you doing?’ I cried, grabbing it and starting to mop up. He yelled at me,

‘Well, you shouldn’t force all this stuff on me that I don’t want!’ A startling allegation! But for once I did the right thing and reassured him. His body seemed to be listing to the left for most of the morning, then gradually righted itself.

This morning when I asked him how he was, he said, 'Confused.’ He went back to sleep after having his insulin injection and taking his medication. I woke him for breakfast and he came to the table to have it. He could hardly walk, even with his walker, and his body seemed to be listing to the right. He complained about pain, not in his neck now but in his right shoulder. (Oh no, not again!) When he sat at the table, he kept falling over to the right. Luckily he was sitting in his wheely walker, which has arms, so he didn’t collapse all the way onto the floor. He ate his breakfast in that position, refusing help.

At this point, my friend K rang, to see if she could come over for a coffee. I responded in tears and panic, saying I thought DH might have had a slight stroke. She wondered if she should come; I begged her to. I was considering calling an ambulance, and felt the need of another person’s opinion.

He was annoyed with me for telling her his symptoms. 

‘You always make me out to be such an arse,’ he said. He refused to come and have a shower with me, but went and sat on a chair in the bedroom and told me to shut the door. He was still sitting there an hour later when K arrived.

But he came out to greet her pleasantly enough, unembarrassed at being in his pyjamas. He sat at the table with us for coffee and made conversation, before moving to the armchair. He wasn’t sitting crooked any more. He farewelled her politely when she left.

He slept all afternoon, and I woke him for dinner.  He came out bent double, unable to straighten, shuffling and tottering. I had to prop him up as he ate his dinner because of that list to the right again.  I muscle tested to see if I should give him his ‘settling down’ medication, and got that it was in his best interests to do so. After that he sat in the armchair and we watched some TV, then he decided to go to bed. He was still awake, lying there calmly, when I joined him. We chatted a while, hugged each other, and patted the purring cat, who loves to snuggle between us. But I couldn’t sleep so I asked if he’d be upset if I got up again and came to the computer. He said he wouldn’t, and seemed to mean it.

Yesterday and today he has thought we were somewhere other than home, though he couldn’t seem to say where, nor where he thought home was. He asked if I was going to take the cats ‘back’ with me when I left. Then he suggested they weren’t used to this place yet. When he first went to bed tonight, he asked where I was going to go. It was only when I assured him this was home and I’d be staying here with him that he relaxed. By the time I joined him, he was perfectly well aware of where he was.

It’s Saturday. We’re not due to see the GP again until Friday to check if the medication needs any tweaking. I think on Monday I’ll phone the geriatrician for advice.

The Bursitis Saga

I never did finish recounting that here. To start again at the beginning —

Dear Husband had an ultrasound at the radiology lab in town; they found bursitis and a torn tendon, and made an appointment for him to get a cortisone injection guided by ultrasound. He had some falls on the Wednesday when he was due to have that, and went to hospital instead. He was discharged Thursday and I made a new appointment for Friday for his injection. He fell again on Friday and went to hospital instead. His pain continued; our doctor authorised the hospital to do the injection. They did; he was surprised that his shoulder still hurt.

One day I observed a bandage under his pyjama top, on the left shoulder. But it was always the right shoulder that had been hurting! The head nurse followed it up and found that the radiology lab had examined and reported on the left shoulder, therefore our doctor authorised the injection in that shoulder. The nurse assured me there was bursitis there, otherwise the injection would not have gone ahead. Obviously it must be in both shoulders.

Our doctor was away for a week. His offsider authorised another injection at the hospital, for the right shoulder, but before it could happen, DH was moved to the nursing home. I got a call from the x-ray department at the hospital. When I explained he’d been in pain for weeks by now, the woman who phoned said she would book him in almost immediately. This didn’t happen. The nursing home staff couldn’t find the referral which was supposed to have been sent to them. I kept pushing for something to happen but they couldn’t do much without it. They assured me they were anxious too for his pain to be relieved. I phoned the x-ray department and encountered a different woman, who said the first one had put a note on the file saying it could not go ahead without authorisation from a different doctor. We never did find out why!

On the advice of a nurse at the nursing home, I phoned our doctor's rooms to see if there was a referral letter languishing there somewhere. No, but our doctor then wrote another one. 

Finally a nurse with a bit of initiative phoned the hospital, and was told they couldn’t do it for another two weeks — so she then phoned the radiology lab, and they booked him in the following day. He went from the nursing home by maxi-taxi and wheel chair; I met him there and saw the procedure, ensuring it was the right shoulder this time (in both senses of 'right'). Apparently there was a mistake on the original referral they received; that’s how the wrong one got done. But as he had bursitis in both shoulders, in the end it seemed like a good result.