What's in a Name?

'We must send that book to David!' he says.

'David?" I ask. 'Which David?'

'You know, he had a birthday the other day.'

'My son David had a birthday in September.'

'No no, not him. My daughter's boy.'

'Oh, Jonathan! Yes you're right, we'll get it posted tomorrow.'

He decides to write in the book tonight. 'Dear David,' he says aloud as he picks up the pen.

'JONATHAN!' I yell.

'No, I'll just call him Jon.'

'J-O-N' I spell out, 'No "h"'.

He writes the message and gives me the book so I can sign it too. He has written 'John'. I can't rub it out without making a mess. Jon is 18 now;  I hope he will understand and not be hurt.

Angry

I realise I'm angry with him for getting confused and forgetful. It's not a rational anger, of course. I know he can't help it. But my irrational inner self is extremely cross with him as if he could help it! As if he was doing it on purpose.

It's still mild really. While it has something to do with his medication and the state of his blood sugar, it's fairly clear by now that it isn't only that‚ or if it is, given that he has to have the medication and does have the diabetic problem, it comes to the same thing. Both diabetes and medication are monitored and well controlled, so it's rare for him to be totally in la-la-land as he was in hospital back in June. However, alongside the well-controlled mildness of his dementia is a very gradual worsening.

Until recently it was mainly cognitive, i.e. to do with practical tasks like using his computer, plus increasing but not excessive forgetfulness. He always has me to refer to if he loses someone's name, for instance, and then after I've given it to him he will remember it again for some time. At least, I consoled myself, he could still carry on an intelligent conversation about ideas. At least we could still enjoy discussing books, movies, politics....

Now the disease is starting to encroach on this area too.

I am getting to know the general blank look that comes over him when he's having a bad day. That's the sort of day when I get many calls to help him fix something that has gone wrong with the computer, only to find there is nothing wrong — it's just that he has forgotten some simple operation. ('Write it down for him,' said his daughter months ago. It's not that simple. Then he has to remember that things have been written down and where to find them. He moves things, even when they have designated places to live, and forgets that he shouldn't do this, and forgets to put them back, and forgets where to put them back....)

It was such a day yesterday. I was relieved when we sat down to watch a movie together, but the blank look in his eyes continued. It was 'Hawaii', about a stiff-necked missionary trying to change the Hawaiian people and being changed by them. Himself reacted as I did, as the audience was supposed to.  Then, when the missionary's wife was exhorting him eloquently to love the people, and I was moved to tears, he suddenly said to the actor onscreen,  in a rough, crude voice, 'Don't listen to HER!'

It was so out of character that my mouth fell open. 'How can you say that?' I asked him, even while knowing he could only say it if he had utterly lost track of what was going on. He gave no answer. I cried a bit more, not from the movie, then controlled myself. What good would it do to go on about it?

I found myself a bit short and snappy with him, until I noticed and stopped myself. Why hurt his feelings? He wouldn't know why I was angry with him.

But I realised I was furious. A 'How can you do this to me?' feeling. As if he would do it to me, or himself, on purpose. I'm going to have to come to terms with this one, somehow.

He does himself realise something of what is happening. At times, when he says things that don't make sense to me, and I question him, he will  say, 'I don't know. I'm confused.'  Sometimes we can sort it out; sometimes we leave it at that.

Not as Bad as I Thought?

He was recently in hospital for three weeks, due to a persistent infection. Either the infection, the medication, a rise in blood sugar or all three soon had his mind wandering extremely.

It was very distressing! To him as well as me: he hated being there, often didn’t realise it was a hospital, and couldn’t understand why I wouldn’t take him home with me after every visit.

Witnessing that level of disorientation, I realised that his normal forgetfulness and cognitive impairment is mild compared with what could be.

The hospital gave us some literature on hyperglycemic attacks, and I think he might well have been having a lot of these and no-one ever picked it up. I’m not saying he doesn’t have mental deterioration, but it seems it could well be due at least in part to high blood sugar.

Shortly before he came home, he came back into his right mind, and has stayed there. The usual occasional vagueness, the inability to grasp practical operations e.g. on computer, and some short term memory loss. All of which we have learned to live with and get around.

Right now he is listening to a political speech on TV. His reactions indicate perfect comprehension and I know he will be able to discuss it intelligently afterwards. He has been reading with great delight a book by Winston Churchill. He’s been having lucid telephone conversations with his friends. On the other hand, he forgot to pass on a phone message to me from a tradeswoman. She rang back because, she said, she didn’t think he had grasped it.

So it’s somewhat mixed, but it seems the deterioration is in practical matters; his actual intellect still functions.

Not much here of late

(I wrote in my LiveJournal on this date)


 Too busy running back and forth to hospital! The beloved Spouse's condition goes up and down. Every time we think he might be coming home soon, his temperature spikes or his blood sugar goes up, or ...

Forgive me please for not doing a heck of a lot of commenting lately, nor even replying promptly to the kind comments left for me. I am having a quick read of most posts most days, and appreciating them as always.

xxx

???

He takes tablets. Lots of them, medically prescribed, essential. To keep track of them, we get a thing called a Webster pack from the pharmacy each week. They are all sorted into days of the week and times of day. At first he used to remember to take them; gradually it has become my job to remember for him. It's part of my routine by now.

Morning and evening I release the required tablets from their package, put them into a special little bowl kept just for that, add a glass of water and present them to him. If he's having breakfast in bed I stand by him to assist; if he's eating at the table, bowl and glass go there and if need be I remind him they are there.

This morning he was in the kitchen — he was cooking our porridge, which he can still manage and likes to do. Instead of sitting down to take his tablets, he grabbed the bowl, took it to the sink, and poured himself a glass of water. It was only when I looked round that I realised he had put the tablets in the glass, poured the water in on top of them and was now trying to imbibe the lot.

After the first gasp, I shut my trap and let him get on with it. It took a few tries. I'll never know if he realised his mistake at any point. But, oh well, he took his tablets and that's what matters.

Everyday Weirdness

1) He looks at me all funny and says, 'There are two chairs in the bedroom. Why don't we put them outside?' (meaning in the yard).

'Because I want them in the bedroom,' I say. He looks puzzled, but shrugs and doesn't argue.

These two chairs have always been in the bedroom, in the 16 years of our marriage. We sit on them, we drape clothing over them, we pile things on them, the cats get on them ... not all at the same time, of course.

2) He asks me to print out some items from his computer so that he can take copies to a friend. When I look at what he wants printed, I find they are audio files from his iTunes list. I explain to him that it is impossible to print audio files; that one prints visual files. Instead I email the files to our friend. I have to send them in three separate emails because of the size. He fumes. 'This is silly!' he says.

3) He gets very anxious when the cats go outside to lie on the front steps and survey the (very safe) neighbourhood. He spends a lot of time trying vainly to coax them back inside, even tries to lift them in (but they evade him). When I ask him why he wants them inside, he can't explain. I'm not sure if it's the words or the concepts he can't find. He asks me to get the cats in. Sometimes I try. Mostly I tell him they're fine and will come in when they're hungry — as they do. He is not reassured.

4) I can't give an example, but sometimes he says things that make no sense at all to me. I try to understand, but he is unable to clarify what he means. (The reason I can't think of an example is because they are so incomprehensible, so nonsensical, that my mind can't retain them. There is no logical hook to hang them on. It's not even the Lewis Carol or Monty Python kind of nonsense which does make some sort of sense.)

5) He constantly complains that I keep him short of money. We have had a lot of expenses of late, associated with moving house, and our income will only stretch so far. He usually wants money to buy online programs that are going to fix his health and wealth forever. Sometimes they don't cost much and I indulge him because I think it will make him happy. (Not so sure of that actually, when I reflect on it.) But we are on a tight budget and often there is very little left after bills, food and petrol. Today we don't have available the 20-odd dollars he wants. But we do have enough petrol in the car and enough food in the house to last us until next payday, and we are up-to-date with paying off our bills. I tell him this, going into detail. 'Why are you so mean with money?' he demands.

Conversation. Not.

Not being able to have normal conversations with him distresses me. The lack of remark / response and so on, back and forth. It seems his mind doesn't grasp something the first time it is said. Sometimes it's not until the third try that he gets a handle on it.

He will sometimes look blank, sometimes try to look as if he's understanding everything, sometimes get the wrong end of the stick altogether. Not that the latter matters too much — if I wait a few moments it will be as if no words had passed between us at all, and he will ask me a question about the very subject I've just addressed.

We can still converse, but there are many days when communication feels like pushing the proverbial s**t uphill.

We Settle Down

New home, more security, some easing of financial pressures — we are both more relaxed, and it does seem to have a good effect on him. He's begun writing a new novel and it's reading well so far. No problems there with his thinking processes.

However I still have to go around after him and turn off taps, lights and the stove. And he seems more inclined than ever to forget things I have just said — to be unaware that anything has been said at all. And he is very illogical at times.

Yet, in other ways he seems to have an excellent grasp of things, and to remember a lot of stuff he needs to remember which I'd have expected him to forget. You just can't tell. My friend who described it as a 'shifting fog' was close to the mark, I think.

All in all, I think there is a very gradual deterioration but that many aspects of it have slowed right down. I think of my Dad, when younger than my husband is now, and I realise Dad was much, much worse. He had Alzheimer's of course, which is not what my husband has. But he does have some kind of dementia. I can only be thankful it's actually fairly mild and manageable.

The worst of it is his thinking that he can still do things he did when young. It's not bravado, I don't think, so much as just plain forgetting and being unrealistic. I have to be quite insistent sometimes about getting it through to him. He wanted to hitch-hike interstate to attend a family funeral he felt he should be at. He's over 80! I felt quite brutal as I pointed out that he needs a good rest if he just goes out for half a day.

Luckily he soon forgets both my laying down the law and his own impractical ideas.