Thursday, 27 August 2015

Up and Down. . . . .

....up and down, that’s how it goes.

A bit more up than down just now, although I have long lost count of the number of times I’ve wailed :

“Will this nightmare never end?”

Every time I think, “yessss, we’re getting there!” something new and unexpected happens. Would you believe me when I tell you that Beloved took to falling out of his bed every night for about a week? I am glad to say he’s decided to stop and stay in bed rather than go-crawl-about on the floor, running into the dog sleeping on her bed along the way and settling down for a little cuddle, before having another go at heaving himself up by painfully and laboriously clinging to any piece of furniture he was finding himself next to. He insisted that he’d fallen on his head once or twice; I should have believed him right away, he was silly enough for that to be true. On one occasion he went to bed with a bit of food stuck in a molar, he said; nothing would dislodge it, not flossing, sucking nor poking with a toothpick. But falling out of bed did it, he said; it was the first thing he noticed on landing on the floor.

Falling out of bed he hurt himself, scraping the skin on his shoulders, his neck (aha, he must have landed on his head!) and arms. creating small wounds, which bled and necessitated visits by district nurses to patch him up. District nurses are confident, capable, competent and friendly in a matter-of-fact way people; I am very grateful for their services. Unfortunately, they also tend to boss you around and refer you to all sorts of other services. We are now well and truly part of the ranks of the great unwashed, needy and vulnerable, who are considered to require the aid of untold agencies and their representatives. The trouble is, they all need to ‘assess’ us and our case and that takes time. Form-filling is a tedious occupation - more so for the ‘filled-in’ than the 'filler-inner’ - but it obviously pays their rent. I shouldn’t say that, they are all so earnest and well-meaning and I should just be thankful and shut up but I’ve always hated being patronised. But the young tend to do that, don’t they? So does anyone in the field of social care. I can only assume that most of their ‘clients’ are beyond working things out for themselves.

There’s another reason I should be grateful just now. Yesterday week ago I took a bad tumble on a mossy and damp part of the drive and really badly hurt myself all down my right side, ribs, shoulder, leg and ankle. Bruised ribs and a swollen leg don’t make for agility or even basic mobility. I could barely care for myself, much less Beloved. Isn’t it always so, once you’re in deep doodoo, something happens and the doodoo becomes a giant midden! The pain is less now but I still can’t walk Millie. You should see me getting in and out of the bath! Bare bottom on Beloved’s newly acquired bath board, gently swinging first one leg then the other up and over, feet anchored on the bath mat and, ‘Houston, we have lift-off!’ Except lift-off is perhaps too strong a word for my slow ascent to verticality (? is that a word?).

We now have a piece of paper stuck to the front door, inviting all and sundry to Ring the bell and come in. Door open. It takes ages for me to get to the front door or the landline phone so callers of either description might as well make use of this policy. Just as well we have few axe murderers in Valley’s End. And nobody carries a gun around with them either.

The first district nurse who called on Beloved after I had hurt myself commiserated by saying :”At least you don’t have the time to sit down for long,” implying that limping around on a stick was a better remedy for my aches and bruises and swollen knee than putting my feet up in relative comfort.

Ah well, there’s compassion in the world after all.

The only creature benefitting from all this is Millie; she’s never had so much exercise. Her social life is increasing faster than mine is decreasing, and that’s saying something, since mine has already dwindled to nil. Millie has acquired lots of new best friends, all willing to take the ‘poor dog’ walkies.

And Beloved is getting better too.

Sunday, 9 August 2015

Who’d Want To Be A Burden

on family, friends or even oneself?

It’s a phrase one hears a lot, usually uttered by people in good health and far off from being one themselves. Caregivers rarely use it and the one receiving care never utters it. ‘Being a burden’ is a harsh phrase, unkind and heartless. No one needing care does so for selfish reasons and should not be made to feel guilty.

Occasionally, Beloved looks at me and sighs “What a useless burden I am to you.”  I mutter something soothing and give his bony shoulders a quick hug. What else can I do? Being a caregiver is not something I find easy to do, but I (and millions of others) have no choice. If the person you love needs help, you give it freely.

“I dislike burdens, said Juan
and at my back I often hear 
Time’s winged chariot changing gear.” *

Quite so.

When you are waiting for time to pass it seems to stand still. We are in week seven of the recovery period; I could swear we’ve done several years already. And yet

Though patience be a tired mare,
yet she will plod.**

Still, half way there, if all goes well. 

Sharla came to tend to my feet. She is a relatively young woman married to a much older man, who is already retired. Last week I warned her that my current situation might easily apply to her some day. She laughed. “Oh, Tony has already said he’ll never be a burden on me. He said he would take a bottle of whiskey and disappear into the hills. ‘You'll never see me again.’ ” 

Her reply was: “Oh yes? Well and good. But tell me, when you are old and decrepit and quite useless how will you get to the hills? By taxi maybe? Or will you want me to give you a lift?” I don’t think Tony had an answer to that one.

I found time to snap this thrush in the process of demolishing a snail.

*Eric Linklater : Juan in China
** Shakespeare : Nym in Henry V

Monday, 3 August 2015

Routine, routine, my kingdom for a bit of routine, please . . .

"The human spirit lives on creativity and dies in conformity and routine.” so says

Not so, I say.

Maybe if you are a Sufi master free to spend all your time meditating; clever phrases that betoken deep insights flow from your lips in a non stop stream, and your disciples hang on your every word. But if life throws you a nasty one, right between the legs when you were least expecting it and the bugger just won’t go away, tripping you up over and over again?

Give me routine, I cry.

(Actually, Pace all you adherents of Sufi teachings out there, - I am not making fun of you, but does sitting, meditating and giving birth to wise words on a loop  not in itself smack of some kind of routine?)

No, Joyce Carol Oates’ words are much more to my liking.

“The domestic lives we live - which may be accidental, or not entirely of our making - help to make possible our writing lives; our imaginations are freed, or stimulated, by the very prospect of companionship, quiet, a predictable and consoling routine.”

I couldn’t agree more.

Since Beloved fell ill my creative juices have entirely dried up, shrivelled and shrunk to the size and consistency of tiny mouse droppings, too small to leave much of a visible trace. You’d think that I’d pounce on the hours he sleeps during the day, when I am not on duty, but the spiritual wherewithal is lacking, all I find is a heap of dust. Aristotle says:" we are what we repeatedly do”. At present I repeatedly do nothing worth the mention, except yearn for an uninterrupted night’s sleep.

Give me the comfort of surrendering to life on autopilot for all mundane, everyday tasks; make the day predictable in all unimportant aspects. May thoughts, processes, decisions and actions run in straight lines, let me do things the way I have always done them. Then, and only then, will my spirit regain the freedom to roam creative spheres.

Sunday, 26 July 2015

Still whining .. .. .. ..

Napoleon asked for coffee but nobody heard and nobody offered him a cup. So he decided to get up, go down to the kitchen and make himself a cup of tea instead. By the time he sat at the kitchen table enjoying it, Beloved was still playing with the idea of being Napoleon.

“Don’t be silly”, he said to me when I stared at him, hard, to find out if he had been hallucinating again, “it was just a dream, a real dream”.  Hm, I’m not so sure. Who, in their right mind, would dream themselves into being Napoleon in need of a cup of coffee? ‘In their right mind’ being the phrase that sticks out the most.

If I don’t get back to some blogging I’ll never restart. I can see how people simply drop the habit. If you haven’t posted for a while, the ‘not-posting’ becomes the habit, and if, like me, you have little to say because life is just too boring and dreary and confined to your own four walls, then posting about nothing much becomes embarrassing. I know that lots of bloggers keep going with pictures, or quotes, or the minutiae of the daily round, and that these bloggers remain popular and find plenty of commenters, but that’s not for me. Each to their own. The enjoyment of writing a post I would want to read myself matters to me.

Beloved’s mind is almost back to normal, I’d say a good 85% of what he says makes perfect sense. His sense of humour is back too. Physically he is less good. The consensus is that medication was indeed the cause of this mental and physical collapse and that it will take at least 2 to 3 months for him to recover. We’ve ‘done’ 5 weeks now. Every Friday is ticked off on the calendar as ‘another week gone’. Keeping him mentally stimulated is getting increasingly difficult. I’m running out of ideas. I’d asked some friends and acquaintances to pop in for an occasional chat but, with the exception of just one or two, nobody seems willing. Perhaps they are afraid that it might be hard work? Who knows.

I did take him to a couple of live performances, Shakespeare’s 'Comedy of Errors' and the medieval morality play ‘Everyman'. He thought the former play too silly for words and Everyman too much of a raised forefinger kind of preachy play. Quite. At least I tried. He’s threatened to come to Stratford next Wednesday for a performance of Ben Jonson's ‘Volpone’. Wonder what he’ll have to say about that. As it’s a comedy about a sly old man playing off wannabe heirs against each other it might make him think a bit.

I do what I always used to do during times when life was fraught with difficulties: I read. Every spare moment you’ll find me escaping into invented lives in a book. Even gardening is losing its appeal. I walk along the untidy paths, see the hugely overgrown beds, the rampant weeds and sigh. If only I could kick myself into some healthy activity. From your comments I know that many of you have experienced the not only exhausting, but also deadly dull routine of a carer. In spite of my whining, I realise that I am lucky, at least there will be an end to my labours, Beloved will recover. I cannot imagine what it’s like to take care of a loved one for whom the outlook is bleak.

However, not all the news is bad: Millie’s had a bath and a thorough grooming session and whichever one of us she honours with her close proximity no longer sniffs the air and asks: “what IS that smell?”

Monday, 13 July 2015

A Chink Of Light

is opening up in the distance.

Much has changed since I last came here, some of it is permanent, some of it temporary. Three weeks after D for dumping-the-pills-day there is evidence of huge improvement, mentally more so than physically;  but hey, we are grateful for any crumb coming our way. The alternative doesn’t bear thinking about.

“You didn’t sign up for this, did you?”


“It shouldn’t be such hard work for you to keep me alive.”

he said. He’s back.

He has a point, this “in sickness and in health” bit came as quite a shock. I’ve learned a lot about myself in the last two months. I’m no Florence Nightingale - come to think of it, my track record compares favourably to hers, at least my patient is still alive whereas most of hers died - but there’s no point getting impatient with someone whose mind has gone walkabout, no matter how tired you are.

Oh yes, he had another adventure: driving an old banger on Top Gear. It was terrifying, he said. Still, at least that was a bit nearer home than fighting in the Russian Revolution.

I won’t be able to catch up with all your comments. I’ll have to start afresh. Thank you all for your good wishes and prayers. I am sure they helped.

Saturday, 27 June 2015

Not there yet

but just to get away from the sickroom I watched Paul weed the rhubarb bed. And afterwards he went to the shop for some bread and milk for us. I think I have found another treasure even if he can neither work as hard nor as fast as Old Gardener.

My thanks to everybody who has sent such kind comments to my tale of woe. Beloved is improving but there is still a way to go before he gets back to his old self, if ever. It is now almost certain that he had a somewhat rare adverse reaction to at least two of the medications; he should never have been told to continue with them when the effects became noticeable and I first took him back to the surgery. The Diagnostic Unit has plans for one more test, a head CT in the next week or so. Doctors don’t often commit themselves but two of them have now pointed the finger at prescribed medication being the culprit.

Life is utterly boring now, I am not a terribly graceful nurse; besides, I am exhausted. But needs must and I do so want my dear Beloved back that I spare no effort to this end.

I’ll be back fully in bogland as soon as I can. Until then be patient with me and kind.

Wednesday, 24 June 2015

Black Clouds - Delirium minus Tremens

Sorry for being away for so long without an explanation. Do you know the feeling of holding your breath in fear and trepidation? For days on end? Beloved not quite, but almost out of the blue, became very ill with Delirium. I’d never heard the word before, except possibly in the context of the adjective “deliriously” happy;  in his case neither love nor drink were to blame. The problem is that there is still no cause to get hold of. If you have a cause, an underlying illness, then you cure the illness and thereby cure the condition.

It all started quite inoffensively with a tendency to fall asleep during the day, at any time, and staying asleep for hours. A bit strange, but nothing really to worry about, I thought; that’s what old men do. He was still himself in all other respects, perhaps a bit more forgetful than normal, a bit more absent-minded, but sweet and funny and even-tempered. It’s not exactly stimulating to watch someone sleep but there you are, if you can do nothing about it, you put up with it. After all, he was doing no harm. I thought. And it also gave me plenty of spare time to read and garden and pet the dog.

The need to sleep got worse and then he started to wake at night. Several times I found him dressed and drinking tea in the kitchen at three am. Still no cause for alarm, although this was really out of the ordinary. A mild worry surfaced. I know, I AM stupid. But I knew enough to see a doctor. I’d also worked out that the beginning of this strange period coincided with some new medication, three lots of new medication. Not in place of other medication, no, on top of other medication. What in the name of sanity do these doctors hope to cure with their ready prescription pads? Old age?

“Oh fine”, she said, “let’s stop one of them and see if that makes any difference.” Surely she must have realised that I was describing the symptoms of Delirium?

Now Beloved became confused enough to swap day for night, seriously disorientated and distressed when he couldn’t work out the simplest things. He also developed an amazingly active night life. He got up and got dressed because he had a film session booked - they were highly lucrative and not to be missed back in the day -, he was involved in the Russian Revolution, fighting on the side of the goodies by building a tramway up to the dock gates in St Petersburg - unfortunately he had to flee because the baddies caught up with him; he stayed at the Bridge Hotel where he was attending a conference and someone had left a turd in the corridor; when he saw me in the upstairs hall (in real life) he asked “do you have a room booked here too?” Another night he was running away from home, goodness knows what age he thought himself to be. And once he was in Sydney, Australia, at the Opera House, having to study an enormously difficult piece of music and being offered assistance by Australian pilots. First he welcomed their help, then realised that they too were baddies and he had to eliminate them. (I never trusted these Australians, you know).

There were many more of these vivid dreams, all very complex and making perfect sense; except they were fantasies.

And through it all, when he wasn’t asleep or showing signs of distressing confusion, he remained even-tempered and friendly, sweet and gentle, and when he managed to articulate complete sentences he spoke in his own, old-fashioned voice. Once I asked him if he knew where he was. “Not with any degree of certainty,” was the answer. My poor old thing. I was frantic with worry and fear.

Beloved had lost the plot but now I was on the case. We saw a new doctor who instantly struck several medications off the list, arranged for blood tests and X-rays, evaluated and assessed and became determined to solve the puzzle. He rang first thing in the morning and last thing at night, for several days running, showing quite extraordinary devotion to his patient. Still, no clear explanation emerged. Except possibly the medication.

Tomorrow we are visiting a special diagnostic clinic which will run further tests; perhaps they’ll come up with the solution.

In the meantime, for the last two days, Beloved has shown marked improvement. He is weary and weak, but seems to be back inside himself again; there’s someone 'at home' again. He still sleeps, but now to recover his strength rather than simply as a symptom of Delirium. He’s not completely aware of what happened and how frightening it was for me. Another good thing is that he has regained his appetite, which was pretty much non-existent for a while. Eating and drinking have become a pleasure rather than a chore to be got through with great reluctance.

Naturally, everything else has been on hold; all social engagements have been cancelled and I’ve hardly even felt the pain in my hip.

Wish us luck for tomorrow.