Sunday, 9 April 2017

I Wanted To Show You . . . .

. . . but you weren’t there. O to be able to share the wonders of Spring I cannot fail to see, no matter how blurred by tears my vision is. Let Wordsworth speak for me.:

Surprised by Joy

Surprised by joy—impatient as the Wind 
I turned to share the transport—Oh! with whom 
But Thee, long buried in the silent Tomb, 
That spot which no vicissitude can find? 
Love, faithful love, recalled thee to my mind— 
But how could I forget thee?—Through what power, 
Even for the least division of an hour, 
Have I been so beguiled as to be blind 
To my most grievous loss!—That thought’s return 
Was the worst pang that sorrow ever bore, 
Save one, one only, when I stood forlorn, 
Knowing my heart’s best treasure was no more; 
That neither present time, nor years unborn 
Could to my sight that heavenly face restore. 

Tuesday, 28 March 2017

Hanging On No More

As he lived so he died. He took his leave gently, peacefully, without fanfare or drama.
Good for him.

A good-looking, tall,  civilised gentleman with a quick charm that made him liked everywhere has bowed out. We who are left behind are bereft.

Thursday, 23 March 2017

Still Hanging On,

both of us, Beloved by no more than a laboured breath.

End stage kidney failure is closing in towards the end, no doubt about it. All the classic signs are there; the doctors say whatever they do now will make no difference at all. Keeping him distress-free and comfortable, those are the sole objectives now. He will, eventually, just fall asleep and not wake up. That’s my hope, anyway.

Yesterday he was sitting in his chair, he’d had some soup at lunch and a few drinks of tea and water; he ate a small slice of chocolate cake in the afternoon and I thought: ‘brilliant, there is enough life left to do that.’ Perhaps, perhaps . . . .

Strange, I am still hoping for a miracle, how silly of me. When he wanted to get up to use the bathroom (really, to what end? He produces almost nothing now), I called the carers who promptly turned up with the usual hoist. He was too weak to grip the handles, although the inflatable seat thing was doing most of the work. After much effort and, seemingly, pain, they gave up and brought another hoist, a larger one which scoops him out of his chair.

To my shame I admit that I couldn’t bear to stay and watch; it was time for me and Millie to leave anyway, so I took the opportunity between hoisting manoeuvres to kiss him good-bye and leave. By the time the whole operation would be finished he’d be too weak to take much notice of me anyway.

His deterioration is rapid. Last weekend he was still very different. Both his children visited, over different days, and they really had the best of him, most likely also the last of the good days. Both came over two days, for hours at a time, and both managed to have a sort of conversation with him, although he didn’t entirely make sense. On both occasions he was wheeled into the garden and on the last day with N., Beloved’s son, we actually sat outdoors in mild spring sunshine.

“A lovely family reunion,” Beloved said afterwards, he’d obviously conflated the two visits into one. He also thought his mum had been present; it turned out that I represented the old lady who has been dead for many decades. No matter, he truly loved his children’s visit.

On the day N. was here Beloved and I had our 30th wedding anniversary, although he barely understood what that meant and quickly forgot the date. In the evening, N. and I went to the local pub where we had a leisurely meal and did something we have hardly done during all the time his Dad and I have been together: we talked. Really talked. It felt good.

In fact, I have become closer to both his son and daughter during the period of Beloved’s illness. Isn’t it sad that it takes a catastrophe for people to learn that they can get on without vague undercurrents of resentment and bias.

It’s late and I must end here, but given the chance I will tell a tale or two of a lighter nature, to do with other residents of the care home. The seven weeks up to now have not been unrelieved doom and gloom, there have been brighter moments too and, in spite of the pain and loss I am feeling, the one thing I was truly afraid of will now not happen: his body will not outlive his mind. Look at it whichever way you want, that is surely a blessing.

Monday, 6 March 2017

How Wise You Are,

you are absolutely right, of course, to advise me to slow down. Why declutter now? What’s the hurry? There is no hurry. I can take my time, forget about everything else and concentrate on the only important aspect of the calamity that has befallen us, namely us, me and Beloved. The two of us. Just as it has always been, from the day we met, and will be until the day one of us dies.

Our time together is short; the new GP who looks after Beloved in the Nursing Home is of the same opinion as the previous one. It could be anything from a few weeks to a few months. If the present rate of deterioration continues it will be weeks rather than months. Beloved is no longer able to stand, much less walk. At first, four-five weeks ago, he used a cane (walking stick over here), then the stick became a zimmer frame, getting himself out of his chair was slow but possible. Then he needed a carer to assist him. One carer became two, one on each arm. Now two carers are needed in addition to a contraption which is fastened around his middle and bottom, which hoists him semi upright and from there lowers him into a wheelchair. It is utterly painful to watch.

How is it possible that this could have happened in a few short months? Snowdrop time; when he fell ill in the middle of December the earliest snowdrops were flowering, ever larger patches appeared during late December and January and now they’re dying, to make room for crocuses and daffodils. Beloved’s decline will forever more be associated with snowdrops in my mind.

No two visits are the same. sometimes he is awake, painfully so, restless and sharp; sometimes he is drowsy and sleepy, sometimes he is relatively clear and at others completely clouded. Often we sit in companionable silence, interspersed with a few short sentences, a few questions from him, mainly along the lines of “do you see much of .......” followed by the names of his children. My questions tend to cover his physical state, “what did you have for dinner”, "are you comfortable?”, “have you any pain?”. The weather comes into it too and Millie, of course. She is a fountain of joy in the desert. Short term memory is a big problem, the distant past an open book.

Visits are difficult but not entirely so. There are always wonderful moments of gladness. Long visits are worth it just for these moments. There is still some poetry, and music, of course. I uploaded Pavarotti arias on to my phone, he was rapt, completely absorbed in what he was hearing. Another time we had Marlene Dietrich singing French, German and English chansons. A smile plays around his lips and he sits quietly listening, occasionally stopping to say “lovely”.

And always there comes the moment when I see him sneaking a long look at my face; a cheeky smile appears and he says lovely things, like “you are so beautiful,” or “I am so glad I have you”, or “I like your scarf, you look nice”.  And we never forget to say “I love you so”.

I am slowly beginning to do paperwork, letters, bills, official communications arrive and end up on the pile. I am sending emails and letters to colleagues, friends and acquaintances with the news of Beloved’s ill-health. I still don’t like casual phone calls which ask "how is he?” They may be well meant but are an awful drag on my time and my need for silence. I have dealt with Millie’s arthritis, her medication is working. I did an online grocery order today - how strange to be ordering for one instead of two. And how very strange to do an order at all. Life does seem to go on, I must eat. I have sold some minor items of Beloved’s music paraphernalia; two instruments and two bows remain to find a buyer. I have help with that. It’s time to organise the gardeners, Paul has been in a deep depression but is coming out of it. He came for a long mutual session of commiseration, time to get out and start work. Old gardener is as yet unaware of the great change at Castle Moat garden, I really must ring him.

And so it goes. Beloved remains the focus of my attention and my main conversation partners are nurses and carers at the Care Home. But now and then, when I sit in front of some rather boring TV show I feel that it might be an idea to use the time spent away from there a little more productively. I expect it’ll happen anyway. Eventually. No rush.

Next week Beloved’s son from America is flying over for a day in Ludlow, all things being equal. It’s the second of his four children finding the way to their Dad. The nurse in charge of the unit asked me, did they know how seriously ill he is? Yes, I told them, made it quite clear. One is estranged from his Dad, has been for years, is unlikely to come. That leaves just one. Beloved asked after her three times last week, not in any desperate way, just casually. But it means he is thinking of her. There’s nothing I can do.

If he makes it to warmer days I will take him out into the garden at the Home. On Sunday we had bright spring sunshine, we sat by a large window, the sun streaming in and warming his face. "Lovely to feel the sun on me”, he said. How modest we become, how modest our pleasures.

Wednesday, 22 February 2017

In Limbo

I always thought I’d be fine being on my own. After all, I spent many years more or less on my own, with the children, admittedly, but very little adult company, except at work. It’s always been on the cards that Beloved goes before me, that’s how it is when you marry someone much older. It’s not a surprise when it happens. But, by golly, it’s strange. And hard.

I find myself sitting around uselessly, staring into space, not doing anything. I start on jobs, like clearing out cupboards, decluttering, by fetching out empty boxes ready for filling, And that’s usually as far as I get; empty boxes are piling up but cupboards and chests of drawers remain full. I have taken a few things to charity shops but I’ve hardly made a dent.

It’s hard to know what to dispose off. It feels as if I’m clearing Beloved out of my life and this house before he’s even dead. I find programmes of special occasions at the Opera House and foreign tours. Should I keep programmes of Royal occasions, like Charles and Diana’s wedding? What for?  Piles of sheet music, who wants it? Ancient photographs, loose and in albums, any takers? Notes and written records, in a painstakingly small and neat hand, beyond my eyesight now, what relevance do they have now? A large stack of original vinyl, whole sets of symphonies, operas, ballet music, some of them conducted by the composer. Perhaps there’s money in them. I hear vinyl is fashionable again; internet, have you any ideas? Photographic equipment, bags of pre-digital cameras, lenses, etc.; you can’t even give it away.

So there I stand, picking up this and that, flicking through, and back it goes on to the shelves.

And then I go to my china and glass cupboards. For years I collected things, we had such fun going to antique markets. I also still have stuff I took away when I cleared out my mum’s flat, some of it going back to her wedding. Here too I sit a box on the floor and stare into the shelves. Is there anything I really still want? Everyday stuff lives in the kitchen, yes there are dinner and tea sets. which I will keep for now, but really fancy glass, silver and my willow pattern collection, presents received over the years, bits and pieces picked up here and there, keepsakes for the future, I thought. The future is here and I can only stare at the stuff, feeling paralysed, unable to even formulate a coherent thought, much less carrying it through. There’s stuff which is actually valuable, so not really meant for charity shops, although the things might well end up there eventually.

Some of the boxes will be filled when I can bring myself to do so, there are a few things our assorted children will want, but not many. “We don’t have the space”, they say. What they really mean is  “We don’t have the space for your mouldy old treasures.”

I’m in limbo. Utterly unable to rouse myself. People and self-help columns tell me I must socialise, get out and about, meet people, talk. I had some tea in a little coffee shop this morning. I met an acquaintance in the street yesterday who hailed me and wanted to know everything about Beloved and me. As well as tell me about her husband who is in hospital at the moment. “Why don’t we keep each other company and have a drink at The Maltings tomorrow”, she said. I couldn’t think of a good enough excuse to turn her down and agreed. It wasn’t too bad, I talked, she talked, then a chap joined us who talked a lot. Quite a lot of the talk was about mental illness in the elderly. Apparently one in three of us will eventually lose our marbles, if we get old enough. Earlier, I had been for a blood test at the surgery. Very soon the nurse launched into a detailed account of how dementia had changed her mother. There is hardly a person I meet who doesn’t have a tale to tell. Many details are instantly recognisable, the saddest part is when the sufferer no longer recognises you.

Beloved is not there yet. Although he is changing day by day, he still knows me. At least I hope it will be so when I next see him. Our country road has been closed for roadworks and going to the Care Home requires a long detour until it is reopened Friday. I confess I haven’t seen him since Sunday. He didn’t wake up at all then and I left again after only 45 minutes, reading my book, sitting next to him.When I rang the Home to tell them I wasn’t coming they said, “about time too” “Take some time off for yourself, if there’s a problem we’ll ring you.” They haven’t, which means all is OK, or as OK as it can be.

Visiting him every day at least gave me something to do. It also gave the other patients the opportunity to fuss over Millie. Millie too seems unable to settle to anything. She clings to me and gives me a huge welcome when I return after leaving her for even just a very short while.

Having family around would help, but that’s not to be. Beloved’s younger daughter visited him, coming via a long train journey. But no one else has visited. Soon it’ll be too late. My son is coming next month to help me with things around the house, let’s hope I have an idea by then what needs doing. And while he’s here Beloved and I will have our 30th wedding anniversary. I never thought we’d make it that far. I hope we will, it’s a nice round number.

Friday, 10 February 2017

Good Days Bad Days . . . . .

and so it goes, there is no help, there is no hope.

When I visited the care home today Beloved was sitting in an armchair in the TV lounge, fast asleep. It was about three fifteen pm, long enough after lunch for him to have woken again from his regular nap. Or so I thought. He barely managed to open his eyes, and even Millie raised only a very feeble smile. He still knows me, still knows who it is who strokes his hair, holds his hand and speaks close to his ear.

The nurses say he is bright and alert in the morning, eats a hearty breakfast, potters about in his room,  with the aid of a Zimmer frame, and listens to the radio until lunch time. I can hardly believe it although they have no reason to fabricate stories. Perhaps I should visit in the mornings rather than late afternoon.

Today it looked as if he’s given up, or perhaps the dementia has fully enveloped him. In the very short space of two months he has changed beyond all recognition. He’s always been rather handsome, in a gentle way, now his face is deeply lined and pale. His eyes are rarely other than vacant, except when somebody other than me visits him; there is still that ingrained politeness, the good manners, the obliging personality. The carers and nurses have already grown fond of him. “He’s lovely, no trouble, the perfect gentleman.” The lady in charge calls him “a charming man”.

I am getting used to being home alone, with only Millie for company. Tears for what was, and is no longer, still come but not as frequently and overwhelmingly as a few days ago. I come in, take off my coat and pour myself a glass of wine. I have started to cook again, meals with a few vegetables and small quantities of fish or meat or an omelet. Nothing very elaborate, just more than the chocolate and tranquillisers I ate when the whole misery kicked off. I still make for the cupboard that hides the chocolate but my consumption of it is less compulsive.

On two days I didn’t visit the care home, once to buy a fridge/freezer - wouldn’t you know it, several household appliances have packed in - and once because I was inundated with jobs left undone. Of course, I felt guilty for not going, but I must admit that those two days were also a much needed break.

I am not going to visit Beloved tomorrow either, tomorrow is a grown-up day: friends are taking me to see 'The Rover', a play by the seventeenth century poet, novelist, translator and playwright Aphra Behn. She was one of the first English women to earn her living by her writing, I’ve never seen the play and I'm looking forward to experiencing an early feminist writer’s take on love, infatuation, confusion, anger and revenge at the Royal Shakespeare Company. I believe it all ends well which will help cheer me up.

Monday morning a violin dealer is coming to the house to take a look at Beloved’s remaining instruments, a bow and other musician’s paraphernalia. I hope he will relieve me of much of it. No one in the family plays the viola or the violin, they’ve all taken to other instruments, so there cannot be any bad feeling about getting rid of them.

Last Wednesday afternoon I came home, plagued by the usual guilt feelings at my ‘cold-hearted disloyalty’ to the one man in my life who has meant more to me than any other. We really were two sides of the same coin, indissoluble, I thought. Friends for life, lovers for ever. I sat over my glass of wine, shocked and in disbelief at the enormity of what I was doing. I thought back over the days since he left hospital and entered the care home, and pictured everything that has happened since: everything he said and did, everything he needed to have done for him, everything doctors and nurses, carers and the memory specialist said. I pictured him being helped in and out of his chair, into the bathroom, into the shower, being dressed and undressed, put to bed. His alarm button and the mat in front of his bed which is sensitive to the pressure of feet - setting off the alarm in the nurses station telling them that he is on the move in the middle of the night - , his long sleeps and confusion on waking, his growing impatience with me for being unable to help him make sense of life generally, his incoherent rambles about a time I know nothing about.

Setting it all out before me, in my mind, I suddenly knew, without a shadow of doubt, that I could not look after him at home; I knew that what I had done was the only thing to do, the kind thing, the decent thing, the safe thing. People have been telling me so for three weeks, I suppose I had to realise it for myself. When I saw him today, frail and absent with just the tiniest smile playing round his lips when I called him ‘my darling’ my eyes filled again, but this time there was no guilt, bitter regret, but no guilt.

Saturday, 4 February 2017

Good News Sad News . . . .

Beloved was admitted (admitted - doesn’t that sound awful?) to his Nursing and Care Home on Tuesday, straight via paramedic transport from the hospital. I arrived before him and was already sitting in his room when he was wheeled in. His face lit up the moment he saw me.

How did you get here? How did you know I was coming here? So lovely to see you. etc.

He was very tired and almost at the end of his strength after 2+ weeks in hospital, where any likelihood of recovery from an illness is far from given. He was barely able to get out of the wheelchair and on to his armchair.

First impressions of the Care Home were good, the staff was friendly and helpful, the room and bathroom neat and very clean, the food good (they had kept lunch for him); while I was waiting for him one of the nurses showed me around, I found everything satisfactory.

The place is like Fort Knox, well run but impossible to break into and out of. Everything on Beloved’s wing is regulated by keypads, access to lifts and stairs requires code numbers. I had a job to get my codes organised, now, several days later, I am still asking staff to help me get in and out. Even if he could walk unaided, Beloved is not going to pick up his trusty stick and make for the exit. He wouldn’t get very far.

I had a wonderful example of the craftiness of dementia today. As I was leaving, three elderly ladies stood around by the lift. One had a light coat over her arm and a handbag. All three were in day clothes and chatting amiably. I did my trick with the lift doors and two of them climbed aboard with me, the third just about to step in when the doors began to shut. I somewhat perfunctorily called out “NO, careful now”. All three were rather wraithlike and there was a doubt at the back of my mind about them: were they residents, by any chance?

The doors shut and one of them said “now you’ve frightened her”, meaning the one left behind. “But it’s happened and can’t be helped.”  I was getting really worried. “Are you sure, you err . . erm. . . .” If they were bona fide visitors it would be most embarrassing to have doubts about them. “Oh yes, “ said the spokeswoman, "we are leaving now.” I took a closer look: thinning, slightly straggly white hair, frail and a little unsteady, and with that vacant look of dementia, crafty, but empty-eyed.

On the ground floor I put down my bags and made as if to punch in a number on the keypad. “Remind me, ladies, which way round . . . . . .? They had no idea.

I was sure now and went for help. A carer was within range and I handed my wraiths over to her. Even then I was told to wait with making my exit until they had been safely shepherded out of the way and into the lounge next door.

Hagley Place Care Home is good and a comfortable place to be, a bit like a medium range hotel, except that the staff wipe your bottom, give you a bath, and come running when you ring your bell. I am told that Beloved eats well (he orders the “full English” for his breakfast!) and has so far not tried to escape. I’ve lugged lots of homely things in for him, pictures for the walls, a small wardrobe full of clothes, daffodils and other bulbs in pots about to burst into bloom, as well as edible treats. He is allowed to have anything he wants in his room and I can visit any time of day. The chef will provide a meal for me too, if given prior notice. Today I took him a very small quantity of sherry. And Millie, Millie has already become a favourite, both with staff and residents.

In the three and a half days of his stay Beloved has already had his hair cut, seen a doctor and been visited by the memory nurse from the Memory Clinic which first diagnosed him. He’s been drawn into activities, is taken to the dining room to eat his meals and encouraged to walk with a Zimmer frame, which he learned to do instantly. Still very weak but recovering some of the strength he lost in hospital.

But, Oh My Goodness Me, picture the residents, the inmates, the poor creatures incarcerated for their own good. I see some of them and I could weep at the ruins once upright and intelligent people have become. I should say that this is a very expensive private home which reflects the class of patient to some extent. One nurse proudly told me of Jack, the former editor of a national paper, Mary, a former painter, Joan, a well known former golfer given to addressing other residents in the dining room in cut-glass accent and phrases, thanking them all for coming and providing excellent rankings in spite of the dreadful weather, for which she actually apologises. Now nurse has Beloved to add to her gallery of notables. "Fancy that”, she says, “a principal player at the Royal Opera”.

But really and truly, it’s all so awful, I can hardly bear it. Yesterday he asked me: “Where did you disappear to last night? We are still married, aren’t we? You haven’t left me?” And “What am I actually doing here?” I still talk about the Convalescent Home and sometimes, when he gives me a little nudge in that direction, about a hotel he’s staying at without me. The hardest thing in the world is to pick up my bags, take Millie’s lead in my hand, gaily call out “See you tomorrow”, and walk out of that door, leaving him behind.

I’ve been out three times in the last few days, once to a live streaming of the play “Amadeus”, once to a lecture about a particular aspect of child abuse (now there’s a cheerful subject!),  and today to a lunch in aid of refugees. Everybody else is so busy being chatty and lively and animated and I’m just sitting there thinking “what am I doing here? On my own?” People at the lunch were very nice to me and asked genuine questions. I could only answer with tears in my eyes. People being kind is the very devil, I am always glad when the questioner is no more than an acquaintance and I can answer their How Are You with the bland formula Very Well Thank You.