Sunday, June 17, 2012

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.


  1. Being the care giver to someone who is seriously/chronicaly ill, (especially someone who one loves as you very obviously love this man of yours)is probably one of the hardest things anyone can be asked to do. Sometimes you fell you are standing on a line where you must do the best for the patient but know it is not best for the loved one. My thoughts and prayers go out to you...and please do keep trying to find a bit of each day to renew your soul and heart. If you do not take care of you, you can't take care of others.

    1. I appreciate your understanding and good advice.

  2. Can you get someone in to help you with the chores to put less stress on you? Like VBR said in their comment, if you don't take care of you, you can't take care of others. I often wonder too when is enough, enough when it comes to medicines; how many medicines should one be on, especially with the combination of medicines your husband is on and the delicate balance of them all with their interactions, etc. Do take care of yourself!


  3. Lol! Thanks for help with the language barrier. Like they said I think you should really find a nurse or, someone that can take care of him so, that you have time to do the other things that need to get done. Hope things turn around, best of luck! : )

  4. yes, working all his life, the lack of focus is an extra burden.

    1. He has focus — just that it's on things which aren't real in the here and now!

  5. Dear concerned readers, I do have help. One and a half hours of housework per week, plus in-home respite on three days — allowing me to get out for personal leisure for three and a half hours on Monday, on Thursday two hours for shopping, and five hours on Friday to attend the writers' group I faciltate .

  6. I'm so sorry for what you're going through, my heart goes out to you!