Wouldn’t you know, Man proposes

and God disposes. Whether it’s God, Fate or more likely, Sod’s Law*, sometimes you just cannot get past the obstacles in your way.

It takes me a great effort nowadays to motivate myself to drive to Ludlow, my county town, for a bit of comfort shopping and running a few errands. I was going to pop into a supermarket on the way for an urgently needed large bag of oats for my homemade muesli and a few self-indulgent goodies at the Ludlow Farmshop like posh pies and pickled herring. In Ludlow itself the Chocolate Gourmet was beckoning, as well as more mundane shops. So, there I was, having tricked Millie into submission (i.e. not queuing at the front door to be taken along) by generously sliding a few biscuits towards her in the kitchen and set off. I got as far as the cattle grid to the road when the knocking started, a hard knocking sound, getting louder and more insistent as I accelerated. Knowing nothing at all about the innards of cars I tend to get scared quickly. By the time I reached the outskirts of Valley’s End, less than a mile from home, the knocking was freaking me out and, after having stopped at the surgery to drop off a prescription for my next batch of medication, I turned tail and car and made for home again. I rang the mechanic. No reply. No call back. I imagine he’s on holiday. The car has sat in front of the house ever since Monday morning a week ago. I will try to get hold of him tomorrow.

The weather had been rather good the latter part of last week. Saturday, I decided to do a couple of weeks’ wash, there just isn’t enough to do a full load of anything per week now. Three loads I collected, bedding, towels, smalls, etc., dark and lights, which I wash separately. I don’t own a dryer, I prefer an outside line. I had just put the first two loads out on the whirlywizzer (rotary washing line) when clouds came up. By the time the third load was rinsing the rain started in earnest; I rushed to take everything down again and loaded several freestanding indoor dryers which I set up in the conservatory. Botheration! Had I known the outcome I’d never have attempted three loads.

You know that Millie is very old and now she has become incontinent. Up to very recently she has slept in my bedroom at night; again, until recently, she managed to wake me in time to rush downstairs and let her out. Several times lately she has not managed to get out in time and presented me with the signs of her incontinence. Dog poo, in other words. Dog poo on the carpet, a heck of a job to remove and clean. It got so bad that I kept waking up in fear of her needing to get out and me not realising in time, hardly sleeping at all. So then I decided that she had better stay downstairs at night, shut in kitchen and scullery, two fair-sized rooms with hard floors, quite sufficient for a sleeping dog. She had her bed. She didn’t seem to mind. Or maybe she is just too confused. All was fine for a few days and then, bingo, lots of presents in both rooms, from tiny little spatters to solid matter. (Too much information?) So now I spend the first half hour of every day picking up, disinfecting and washing the floors. It’s not as if she didn’t have the opportunity to go out in the evening, the back door is wide open until I go to bed at 11 or later. She’s fine and continent during the day, why not at night? I think I may have to leave the door open all night during the warm weather. Poor sweet Millie, she is still such a darling, she can’t help it. I cannot bring myself to do anything drastic just yet but my ideas on how to deal with this problem have dried up. If only she would dry up too.


*Sod’s Law is the axiom that “if something can go wrong, it will", with the further addendum, in British culture, borrowed from Finagle's law, that it will happen at "the worst possible time". This may simply be construed, again in British culture, as "hope for the best, expect the worst"

Be Kind to Carers of Dementia Sufferers

A friend of mine felt so upset at a thoughtless remark by an acquaintance recently that she found herself moved to publish a short letter in the village Chronicle. Since then she has had a lot of positive feedback from other dementia carers as well as people looking after sick and disabled people. None of us can be certain that the task of carer will not be our fate too, so it well behoves us to be kind and understanding.

When a diagnosis of dementia is made, the sufferer looks the same as before and in many ways the changes in their mental capacity are not obvious. Careless people think nothing is wrong and query why a family carer has put their loved one into a home.

What the public does not see is the constant drain on the carer’s strength; the accidents that ruin a carpet; the ’nappy’ changing and vast quantities of pads etc. that are required, the persuasion to get dressed and undressed.... 

When you see the person with dementia out for a walk looking perfectly well and smart, you are seeing the results of exhausting and time consuming care. You do not see the angry outbursts, the constant repetitions or the interruptions.

A carer gives 110% of their life and energy to keeping their loved ones well fed, clean and entertained, while getting very little back. A good day is a reward, when there is a response, but this becomes less and less.

So - when you see a dementia sufferer, the carer with them is suffering too. Please do not make thoughtless comments. You do not understand that the carer’s limits have been breached. It is to save our loved ones that they go into a home because, if they don’t, we may well cause them harm.

Another friend of mine has very recently realised, after years of devoted and dedicated care for her husband who is suffering the ever increasing physical and mental effects of Parkinson’s disease, that she can no longer cope without seriously endangering her own health. What is she to do? What else is there but find professional help in residential care?

The carer suffers all the guilt and torment that ‘failing’ at continuing personal care causes without some thoughtless remark by a chance acquaintance to add to the pain and anguish. So remember, if you feel inclined to sit in judgement, it might be you one day.

Did You Know . . . .

that ‘The functions of the Mistress of the House resemble those of the general of an army or the manager of a great business concern.’

I have been dipping into 'The Housekeeping Book' of olden days and all sorts of wonderful information, instructions, prohibitions, advice to young women and new wives can be found within.
I particularly like the capitals for the Mistress of the House and the lower case used for a general and a manager, be they ever so lofty. Mind you, the Vicar of Wakefield had it that : ‘The modest virgin, the prudent wife, and the careful matron are much more serviceable in life than petticoated philosophers, blustering heroines, or virago queans’. (I looked up ‘queans’ - it means an impudent or badly behaved girl or woman, or a prostitute.) Serviceable to whom, one wonders. Independent minded women have always got short shrift from the mainstream of domestic theorists, so many of them men.

Having had little interest in new clothes for the past two years this interest was rekindled when I had a very close look inside our closets and wardrobes and chests of drawers; Beloved’s stuff has all gone now, apart from his dressing gown, a summer anorak and a couple of his favourite shirts, all items I now wear. Ditto some of his thickest and warmest socks, which will come in very usefully during the winter. However, my own clothes are sadly lacking in shine and rather shabby after years of wear and needed replacing. I get fashion catalogues and emails sent from fashion houses and department stores, all unsolicited (I may possibly have bought items in the past), so I consulted these. I hadn’t purchased new clothes for so long that I was horrified to see the prices. Nevertheless, a few tops, shirts, trousers and leggings (for the gym) arrived in due course and I admit it feels good to be wearing something that isn’t falling to pieces with age. I like the look of myself again, too.

Be that as it may, the activity of purchasing does not please one lady author, who had this to say: ‘This ranging from shop to shop has given origin to a fashionable method of killing time, which is well-known by the term “Shopping” and is literally a mean and unwarrantable amusement. I wonder if she would absolve me from blame, as I did my “Shopping” on the internet. I wish I could amble from shop to shop, all along the High Street, and take my time, browse around a bookshop, have a meal somewhere, linger over a cup of coffee and watch the world go by. I may be fancy-free and independent, but I am still accountable to Millie. Poor dear Millie, she is quite decrepit now, although her steroid medication has given her a renewed lease of a semblance of a doggie life. Her hearing is gone which makes her difficult to organise; I also think she has dementia, she does not want to let me out of her sight. Leaving her alone is a problem, there are just two houses where she knows her way around and feels safe, my friend Jay's, who is dog mad and Millie’s best friend and my other friend Ralph’s, who bosses her around in a nice way. I am having the suspicion of dementia being present because all her routines have changed, whereas before she had regular favourite bedtimes, doggie beds and toilet habits she is now all over the place. And yet, she still has a reasonable quality of life and eats well and happily, is fully continent, and appears to be happy provided I’m close. If I have to leave her alone it’s usually for no more than a couple of hours.

My leg is getting better. The swelling is now confined to the ankle and heel and even there disappearing noticeably, almost by the day. I have had all these weeks of mostly sitting and reading with the odd little Millie walk and a potter in the garden. When the summer was at its hottest I reclined gracefully and read novels, taking sips from cooling drinks. I am glad, that by living long after The Housekeeping Books’s strictures, I escaped its censure of indulging in the much decried pastime of reading novels. Apparently, young ladies were wont to indulge and could therefore not hope to achieve the heights of the housekeeping skills necessary to make a good match and thus become serviceable in life.

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.

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.

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.

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.

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.

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.

I Daren’t Crow Just Yet. . . .. . . .

. . . . .but Beloved has been accepted for nursing care at an EMI facility and Residential Home in Ludlow, a drive of no more than 40 minutes away. It costs an absolute arm and a leg but we have a magnificently generous member of the next generation in the family who is going to bear the brunt of the costs. I am still hoping that a small contribution will be made by social services and maybe the Musicians’ Benevolent Fund but member-of-next-generation assures me that I needn’t worry about funding.

When I got to the ward today I had a shock. Beloved was sitting slumped in his usual chair, ashen faced, chin on chest, oxygen mask attached. Deeply asleep. His pyjamas were stained with food spills, his hair stood off in all directions. Not a picture of health and happiness. In a flash I had a picture of the nurse/assessor walking in on him looking like an immediate candidate for the boneyard and making up her mind there and then to forget about him as a patient at their pristine home. Silly of me, because that’s what their homes are for, to give old people coming to the end of their lives a dignified exit, as pleasant as possible. What's a food stain or two on the front of the pyjamas matter compared to that?

I made a bit of a fuss, the harassed nurse in charge of the bay took off the mask and put in a nasal cannula instead, explaining that his blood oxygen levels had come up again to an acceptable level during the morning and that his extreme sleepiness was due to insufficient oxygen uptake. They couldn’t wash him and change his pyjamas because they simply hadn’t been able to wake him sufficiently and for long enough.

Nurse/assessor being a member of the profession understood perfectly. I combed his hair, tidied his dressing gown around him and sat him up a bit, with his help. Loads of questions, during which Beloved nodded off again, off and on. But when he woke he was quite lucid.

All in all it went ok; it was decided that he should go into their nursing facility to regain some of the strength he had lost in his two weeks in hospital and that he might recover enough to be moved to the residential unit later.

He was sweetness and light, smiled, agreed with everything nurse/assessor said, professed himself delighted at being ‘sprung’ to go to a ‘convalescent home’ (my idea to call it that), that Millie would be able to visit, that I could spend as much time with him as I wanted and that he’d finally have some privacy again. Even the chef-prepared food appeared to interest him. In other words, he was the perfect gentleman.

Then the nurse/assessor left to speak to the staff on the ward and to look at his notes. Immediately Beloved’s face went dark, a serious frown on his forehead. “Don’t believe a word she said,” he whispered, “I don’t trust her for a minute. Do not go in with her, do not invest in anything she suggests". I was taken aback. Dementia patients can become very suspicious of others. “Really,” I said, “you think so?” “Absolutely”, he said, no doubt in my mind at all,” “Very well,” I said, “I won’t then.” He was satisfied with that.

Nurse/assessor came back to discuss arrangements with me before she left. Once again Beloved was smiling and sunny. By now a friend of ours had appeared at the bedside and for a moment several of us talked at the same time, making a conversation he could not follow. Immediately he went on the offensive. “Tell me what’s going on”, he said, “I can’t understand what you’re all saying and I don’t like it. If you don’t stop it I won’t trust you anymore either.” looking daggers at me. Dementia patients have lost the ability to follow a more than two-way conversation and are quickly beset by fear and anxiety, making them aggressive. They take a lot of understanding, tact and intuition and losing patience or intimating that you think them stupid is the worst anyone can do. Always agree with them or distract them. They are easily distracted and even the offer of a cup of tea or pointing at a cloud will do to lead them into safer waters.

A nursing home for dementia patients should be just the perfect environment for Beloved. Make sure you keep your fingers crossed for a few days more, please.

When, like now, I am thinking of him and what he’s said or done today, I have the feeling that all I need to do is run down the stairs, find him sitting in his favourite arm chair, and tell him all about it. Alas, he will never come home. When transferring him to a nursing home means that we can have maybe a few more months of quality time rather than me wearing myself out attempting to look after him, then so be it.

More Tears than Laughter...

...since I last posted. Although there is still the involuntary giggle he has made me cry many times in the last few days. I had thought for a long time that my tear ducts must have dried up or got blocked,  in recent  days I learned differently.

There is still no definite news on a placement although I have found a Care Home/Nursing Home who have spare capacity. A nurse is visiting the hospital on Friday to ‘assess' him. That’s a euphemism for checking out if he is a suitable resident for their posh - and very expensive - premises. Most homes aren’t registered to take people like Beloved who try to escape every chance they get. He is quiet, still enormously polite and well-spoken, still a true gentleman, but he has this urge to 'go home’.

The first thing he said to me when I arrived today - straight after the usual initial remark and question: “how lovely to see you, how did you manage to get here and find me?” - was that he had had words with the staff. "I told them in no uncertain terms that I could leave any time I chose, that they had no right to keep me here. Of course, they apologised and pleaded that they have to keep me here for safety reasons, that I might cause an accident and endanger others. What nonsense.” He still speaks like a well-educated man and throws long words around which nobody, in their right mind, or with a lesser love of language, would use. He is such a dear.

As always, I managed to placate him quite quickly. The staff had been waiting for me, promising him that I would turn up soon and explain. He has an almost childlike belief in my ability to make things better. I promised him that I would ‘spring’ him the first chance I got, but that the staff were quite right to insist on his temporary stay with them, for the sake of his own safety as well as that of others. I reminded him of his fall at home - “I had a fall? I don’t recall at all.” - and that he might fall again if he went off without assistance.

“Yes, but if I stay here, where are you going to sleep tonight?” I daren’t use the word HOME, any mention of it immediately makes him question the wisdom of him staying behind while I’m allowed to go home. The answer to his question was “In my old bed, upstairs.” He has no idea where that might be.

We had some poetry - I often take some of his favourite poems and read them to him. Today we had Siegfried Sassoon’s “Everyone Sang”

Everyone suddenly burst out singing;
And I was filled with such delight
As prisoned birds must find in freedom,
Winging wildly across the white
Orchards and dark-green fields; on - on - and out of sight.

Everyone's voice was suddenly lifted;
And beauty came like the setting sun:
My heart was shaken with tears; and horror
Drifted away ... O, but Everyone
Was a bird; and the song was wordless; the singing will never be done.

By the third line I was crying. It’s a poem he knows by heart and he was reciting along with me. “Beautiful”, he said, but I doubt that he made the connection between freedom and beauty and his own sad state of imprisonment, both in body and mind.

Hospital food is not very appetising, he says, barely audible, hand hiding the words from view, making sure that nobody can punish him for criticising the service. I have tried all sorts of treats, special sandwiches, puddings, sweets, fruits; what he likes best is his own rhubarb from the freezer - grown and cooked by him - with a layer of custard on top. I spoonfeed him, because rhubarb is apt to dribble and soil his pyjamas. He opens his mouth wide “like a sparrow baby when mum comes with a juicy worm”. He laughed at my remark, not at all put out.

I’ve also smuggled in cider and beer. I have no idea if alcohol is allowed or not, but he always had at least one drink every day at home. Even his taste buds have gone. He drank the first (toddler)cup of cider with great pleasure but didn’t like the beer very much. The next time the drink of cider wasn’t a success, he said: “hm, apple juice, but rather different from the real stuff.” I expect he will be allowed a drink in the Nursing Home, where I can join him for a sip or two. He is too ill for anything much to make any difference now. Like the doctor said “quality rather than quantity.”

One day this week I arrived to find him sitting outside the front door of the main hospital building, in a wheelchair, wrapped up in blankets, with an auxiliary in attendance. He looked so frail and grey, so lost and hopeless, my heart just broke. The auxiliary said that he had badly wanted  to go out - go home - and the ward staff had decided to allow him a trip in a wheelchair. By the time we reached his floor I was crying so hard, the auxiliary hugged me and handed me over to the nurse in charge; someone else made me a hot drink and several people spoke to me with great kindness. The problem is that I see the man Beloved has become and a huge wave of guilt hits me for leaving him there, in the hospital, all alone. Realistically I know I can’t look after him at home, but sometimes the pain and heartache overwhelm me.

I still have a friend who looks after Millie every day; she herself has a dog and Millie and Tessie get on well. I finally took Millie to the Vet yesterday, she has bad arthritis in her front elbow and will have to have pain killers. Poor Millie, she hardly gets any attention from me and she misses Beloved terribly, he used to give her a thorough cuddle every evening and, of course, she slept at the foot of his bed. Now she has to make do with me.

I have also done a lot of driving during the last days, it’s getting to me; luckily, we have a good Neighbours Scheme in Valley’s End whose drivers will take people on hospital trips; I shall make use of them more now. Friends are willing but don’t always have the time and when something like this drags on it can become a bit of a chore for everyone.

Keep your fingers crossed that the Nursing Home will accept Beloved.

Saturday, And it’s a Week Since. . . .

. . . . . . Beloved fell and was taken to hospital. The patching up has been done, bruises and scabs are still visible, but he could, by medical standards, be discharged. In fact, a consultant who took me aside during an early visit actually asked :”what is he still here for?” I was gobsmacked. She was a lady doctor, swathed in colourful head scarves and shawls, and I am afraid I need to be somewhat racist now. She looked like the kind of classy Asian or Arab who is used to a large extended family and an army of servants - yes, no doubt, I am being racist and bigoted and prejudiced here - she certainly didn’t look like a woman who struggles to hold it together. She saw the horrified look on my face and back-tracked. Of course it wasn’t personal, she is just being pressured herself to free beds as soon as a patient can be shuffled off. Beloved has become that nasty creature, a bed blocker. Lady consultant was quite blunt: “there is so much wrong with him, we can do nothing for him,” reciting a list of problems.

I made it clear to her that the NHS is obliged to find an alternative placement for him, what with his night time shenanigans; he needs 24 hour care, not something I alone can provide. All the same, I remained rather panicked for the rest of the day and night, I had visions of an ambulance calling at my door and offloading Beloved back ‘into the community’, a euphemism coined by Margaret Thatcher for dumping people and getting them off the back of social services.

During this week I found out that I am not quite as alone and isolated as I thought. Friends have rallied round and provided lifts for me and shelter for Millie during my daily trips to the hospital. On the whole, people have left me alone, none of those concerned but time consuming phone calls “how are you”, “how is he”, when I’ve come home shattered from another afternoon spent with Beloved. Many polite reminders that they are thinking of us and wishing us well, but no requests for detailed information.

It’s been hard going. Yes, there have been funny moments, like that time he said : "if you are going to see the director of this institution you may tell him about the nightly revels". He looked at me sideways, with a crafty expression in his eyes: “I know what goes on here; you should hear the noise, they’re having orgies!” Another time he thought the man in the next bed, who was hidden behind a curtain and therefore invisible to Beloved, was the cabaret; he did make incessant rhythmic noises which sounded a bit like percussion instruments. Beloved frequently thought he was actually in a theatre and the floor show of patients, nurses, doctors and other staff was laid on for him to watch. “Weird lot of performers,” he said. And when he’d had enough he wanted to get up and leave. “Have you any money on you?" he asked. “Why?” “Well, we should leave and pay up, and certainly leave an appropriate tip for the waiters.” “Oh, my dear, it’s all free here,” I said. “Well, fancy that,” he said.

And always: “Let’s just go, shall we? What’s the point of staying here. I really want to go home.”

At first he was at Accident and Emergency, then they took him to the Acute Emergency Unit, now he is on the fairly quiet Nephrology Ward. The whole NHS system is creaking at the seams, staff shortages, huge patient loads and a demoralised workforce are on the way to turning our once great NHS into a dysfunctional rabble, the sort of thing we imagine we find in a third world country.

If only I could take him home.

It’s time to go again, he is still so happy when he sees me that I couldn’t possibly not go.



PS: At the moment I couldn’t care less about Trump and his inauguration, although I joined my lift provider the day before yesterday in some filthy language aimed at him and his supporters.

Day by Day Things Are Getting Worse,

there’s no let up.

Beloved is in hospital now. He has fallen once too often.

The last few nights while he was still at home were horrendous. On the first of them I went into his bedroom downstairs, carrying his morning tea, as always. No Beloved to be seen. I had locked all the doors so he couldn’t have got out. So where was he? He couldn’t really manage stairs anymore, but still, I tried upstairs. He was lying curled up in a foetal position on the bare mattress on his previous bed, half undressed and covered only by the mattress protector gauze sheet. It was a bitterly cold night and the heating in the unused bedroom was off. I coaxed him downstairs, avoiding walking close in front of him in case he toppled over and took me with him. The Aga in the kitchen is always on, after half an hour he began to warm up and stopped shivering. I had no idea how long he had been up there, but at some time during the night Millie came into my room, sighing and thumping, until she settled down.

The next such morning I found him standing in the kitchen, in his pyjamas, going through the motions of putting a kettle on. Great relief on my part; he was ok, hadn’t done anything silly during the night and I could take over and make breakfast. I thought I’d better fetch his dressing gown from his bedroom first though, it wasn’t really warm enough to stand around in pyjamas. I walked in and instantly saw that he had trashed his bedroom. Lamps were thrown all over the place, chairs toppled over, slippers and his (luckily empty) urinal bottle on the bed, duvets and blankets knotted and bunched up, papers from his desk strewn about, electric plugs pulled from their sockets, and a rather heavy bedside table pushed to a new position in the room. Where did the strength and fury come from in such a weak and feeble man? Again, Millie had come in search of me some time during the night, but, again, I paid her no attention.

Then, on Saturday morning, Millie came up to me for the third time and I finally understood that she was telling me something was amiss. I ran downstairs and there he was, on the floor in the living room, again half undressed, on his side, neck bent and head leaning against the very cold conservatory sliding doors. He was moaning and breathing laboriously, fluttering hands scrambling for a hold on any surface he could find. He was about to pull down the curtains and topple an expensive lamp when I caught his arms. I rushed to get a blanket to cover him and a pillow for his head and phoned for an ambulance. I didn’t even try to raise him. The ambulance crew came within five minutes. They were the same two paramedics who had picked him up just before Christmas. They took one look, felt for broken bones, couldn’t find any, and gently hauled him up. One of them fetched a stretcher while the other wrapped him in blankets. “This is not the same man we picked up a couple of weeks ago”, they said.  "He cannot stay home this time, he has to come in and be checked out.”

As he lay upon the stretcher and they were wheeling him out he gave me such an imploring look of confused agony and helpless entreaty I couldn’t hold back the tears. There was nothing, absolutely nothing, I could do for him except trust the professionals, who were taking him out of my life, to look after him.

One of the rough, tough and burly chaps looked back at me. “We’ll take good care of him,” he said.

He’s now been in hospital for three days; in spite of what should be a less fraught situation the nightmare continues.

Having to Watch the Daily Deterioration

is worse than anything else. I can no longer bear it. A man whose fingers plucked and stroked and coaxed his instrument to make heavenly music now takes hours over doing up a button in a cardigan or push a piece of paper into a non-existent pocket.  A man who rushed about London’s streets to the manner born - literally - now doesn’t recognise his own home. “You can drive, can’t you?” he asks, “can we go home now?”

During the prolonged festive season there were no surgeries open and I couldn’t ask for help. It wouldn’t have been much use, because there is no help. But we always think there must be something we can do, don’t we.

On the first working day after the holidays his GP rang. “How is J, how do you find him in himself?” Stupid question, I thought,  but just answered wth “Hmm?” And then she said “And how are you?” Ditto, stupid question. Again I answered “Hmm?” Only then did she come to the point. “I am looking at J’s blood test findings, they're actually not good. Not that we can necessarily do anything about any of it.” “Yes,” I said, “we’ve realised that.” “Particularly the kidney function. That’s gone right down form 20% to 16% now. And it won’t get any better."

She was very nice about it, voice oozing bedside manner - in a good way - sympathy and compassion clearly audible. I felt I had to reassure her. “Tell me,” I said, “I won’t collapse on your shoulder.” I only collapse in private. Or maybe here, where nobody knows me.

“It’s now a question of quality over quantity”, she finally admitted. "Looking at his medication, there are a few things we can cut; just leave the ones which will ease him. None of those blood tests, like INR or routine annuals now. It’s important that he enjoys what he can and forgets about everything else.”

So, it’s official, but then we knew that. Since just before Christmas the dementia has enveloped all of him; almost nothing makes sense. For whole evenings he is obsessed with one subject, we’ve had hospitals, elections to become Archbishop of Canterbury (him!), chairs and whether to take them home with us, car races and crashes (mine), sanitary ware china, and over and over again urgent request to take him to work, because he’s on for Wagner or a ballet, or a concert at the Albert Hall. “Where are my shoes, I need to go.”

His kidneys are slowly poisoning what little understanding of reality he still has. A younger man would receive dialysis, an old man couldn’t survive the treatment.

I can no longer bear it. It breaks my heart. Yet, at the same time, I can understand that there are people who lose their patience and shout, Or worse. I admit to having stamped my foot and screamed at him when I tried for the umpteenth time to make him understand that he needed me to take him to the bathroom to avoid accidents.

The assessment social worker has been. One day when Beloved was particularly agitated, furious that I stopped him going to work and ready to swear at me, and I could barely keep him in his chair, I rang the doctor, demanding to know which of the many bodies in existence could help me, there and then.
Some hope.

Emergency admittance to a care home is never a good idea, these decisions need cool heads and careful consideration. So I gave in. Beloved had fallen asleep by then and given up going to work. But Doctor Wendy got off her comfortable chair and raised Cain. Cain came, closely followed by more social workers, district nurses, a dementia nurse and a dementia specialist doctor. The assessment social worker instantly granted me extra carers during the week and all of them promised to help me find a solution, i.e, a care home for Beloved, either on a respite basis or permanently. The dementia doctor doubted that I’d ever be able to cope with him again and for the sake of my own health and sanity recommended that I make enquiries immediately.

And then the old bugger goes to bed like a lamb and smiles at me and says: “Can I have a kiss?"

It’s one thirty in the morning

and I’ve suddenly realised that I am completely alone. When my father lay dying I rushed over to Germany to take turns to do the  night watch in the hospital while mother did the day shift. We were together and she held on to me. When mother died I rushed over to be with her during her last weeks and when she'd gone Beloved came over immediately to support me and help with arrangements.

Now that Beloved, my husband, my best friend, my rock, the man I consulted on everything, with whom I made every decision, small or important, has  left me in all but body, I am truly alone, I want to ask him what to do but he cannot answer me any more. There has been a catastrophic change in him since  just before Christmas and the deterioration progresses at an alarming rate. It’s terrifying. Almost nothing makes sense to him and he makes no sense to me. He was obsessing about being in a hospital for most of the evening. Is he trying to tell me something?

Tomorrow some kind of assessment will be done in our house. I hope the person knows what she’s doing and is not just a pen pusher and penny pincher.

I’ll try to get some sleep now.

Living with Dementia / 2

I sincerely hope that I will have other subjects to write about again but since that dreadful day in the middle of December I have barely had time to think, much less do, other than slog away. He’s got worse at a tremendous rate since then and hates to lose sight of me. Which means that I have to sit and watch idiot TV programmes with him. I have noticed though that TV has little interest for him now, he often falls asleep in the middle of his previously favourite shows, like Endeavour and Sherlock. Documentaries which fascinated him before are a waste of time now. There is a hole where his interests were.

The paramedics recommended that I arrange for a bed downstairs for him, so now he sleeps in the dining room, with the dining room table and chairs piled up in the conservatory. It’s winter and we don’t use the conservatory much anyway. We are lucky that the dining room connects to a downstairs bathroom which means no stair climbing any more. Scratching my head how to get a spare single bed from upstairs down the stairs and put into the dining room which is right at the end of the house, leading from the hall through the sitting room, I came up with an ingenious answer: call the fire brigade in the shape of the husband of one of my carers and a mate of his, who happens to live right opposite our drive. What else was I supposed to do? It was two days before Christmas and everybody was busy. So, one major problem solved. I have seen a lot of kindness in the past three weeks, kindness I never expected.

At least he’d be safe downstairs, I thought. He was very unsteady on his pins and needed my arm as well as his stick to move at all. Even with assistance he tottered and stumbled and more than once I grabbed him just in time before falling. Still, twice more he fell. Once he slipped on a rug (which has since been removed) slid down the wall behind his chair and grazed his arm, his back and bottom severely. On that occasion I called my good friends and neighbours, Sue and Ralph, for help. Luckily, their son in law Owen had arrived for the holiday and Owen and Ralph got Beloved back up and into his seat. Shaken and less mobile than ever. Those of you who know these things realise that the patient has to be accompanied and assisted at all times, in the bath, loo, at table, - oh my God, table manners are a thing of the past! - into and out of chairs, etc. Whatever you can think of, the dementia patient needs help with it.

So there we were, having overcome the first hurdles. We were also waiting for the doctor to visit with test results. Beloved was a little calmer, not wanting to get up every three quarter hour to visit the loo. I had started a groceries order which needed completing in time for a delivery the next day; he was asleep in his chair and I grabbed the chance to rush upstairs and add the last few items. Ten minutes later I heard the loo flush. Oh bother, I thought, he’s gone by himself. Well, if he’s dribbled into his pants, he’s dribbled and it’s too late anyway; I must get this order finalised. One learns to put up with a whole lot of things which one would never have countenanced before.

When I got down about fifteen minutes later he was nowhere to be found. Hello? HELLO? No Millie either. I went to the front door, he might have gone down the drive, although that seemed most unlikely, seeing that he could barely walk unaided. I saw a little red car had drawn up, doors open, motor running. Sometimes tourists mistakenly use our drive as an entrance to the castle and I was going out to tell them to drive out again and use the next track instead. No tourists stood there but Karen, one of Beloved’s carers got out, closely followed by Beloved and Millie. She had driven over the bridge and found the pair of them struggling up the other side, just starting on the steep hill to the top.

"I found them the other side of the bridge", Karen said. She’d recognised Millie and took a closer look at the man she was following, without a lead, walking freely along a busyish road. It was one of those icy days we had recently, bitterly cold. Beloved was dressed in sandals and a cardigan over a shirt, another ten minutes’ uphill struggle might have ended his adventure there and then.

He thawed out in our warm kitchen, Millie faithfully lying at his feet. “They’ve made a lot of changes over there,” Beloved said, “a lot of new buildings have gone up. I hardly recognised the town.”

No buildings have gone up in that part of Valley’s End recently, it’s been as it is for four hundred years, bridge and all, barring a few minor alterations. He’s lost the geography of his home village as well as that of his house.

When I berated him for endangering Millie, taking her out into the village without a lead, he said “She’s so good, I just told her to stay with me. And she did. She knew where she was, as well.” Meaning that he didn’t quite.

The amazing thing is how he got out and up there so quickly. For a man who can barely move he made extremely good time. It’s not an easy walk either. If he left by the back door there is a slope to negotiate and a very narrow, muddy track which I tend to avoid in icy or wet conditions because it can be quite treacherous. I asked how he’d got to the lane and he said he held on to the hedge and then the ivy growing at the entrance to it. When I told the District Nurse who had come to patch up his bruises and grazes she said “well, we all know how quickly toddlers can be.”

That’s what he is now, a toddler.

LIVING WITH DEMENTIA

I would have loved to end the old year on a more cheerful note than the ‘Christmas Hates’ post and, even more so, to have been able to start the new year with renewed hope and energy.

Not so.

I’ve been wondering if I should continue with this blog in its current incarnation, under the same heading, or if I should close it and start a new one under the same title as this post. Or maybe give up posting altogether, seeing how little time I have at my disposal.

My decision is to continue this blog as it is, except that it will deal primarily with what it is like to live with, and be the carer of, a loved one who now recognisably suffers from dementia. Friko’s World is the title of this blog, and Friko’s World it is, before and after the axe fell.

Not many of you will find it interesting and I won’t be upset if you stop reading. There is a lot of involuntary laughter but there is a lot of pain and heartache too. I will remain true to myself and honest with you who read. Some of you might be upset, some disgusted and some uplifted. It has absolutely amazed me finding out how many people suffer from some kind of mental illness in old age. Nearly everybody knows somebody who is a carer or has a dementia patient in their family and circle of friends.

The first major indications that something more than lapses of memory and the mislaying of days and times of day was wrong came a couple of weeks before Christmas. Beloved became quite agitated about our preparations for the festive season, pushing to go shopping for more and more groceries and drinks. As there were only the two of us, no family or friends expected, this was slightly odd. His daughter rang and I told her that her dad was uncharacteristically restless. We suspected an infection which needed treatment. When mild dementia sets in, an infection will send the patient completely confused, apt to go ‘doolally’ as an acquaintance, whose husband has Alzheimers, calls it.

A few days later I went up to Beloved’s bedroom to wake him for his morning bath, as his carer was on her way. He was not in his bed. In the gloom I peered into the room and saw a white form on the floor, partially naked, with a blanket pulled up over the legs. He had obviously, at some time during the night, got up, started to undress and fallen. I tried to get him to his legs. No luck. The carer came and tried too. Still no luck. I had, however, already called an ambulance; we are advised to do so if a patient has fallen and can neither be moved by others nor lift himself up. After making sure that nothing was broken or otherwise damaged two burly paramedics soon manipulated him upright again and began a series of tests. Beloved was shaking with cold. The first thing was to warm him up. Through chattering teeth he repeated several times to all assembled, i.e. me, the carer and the paramedics, that he’d been trapped under the wardrobe and had been unable to extricate himself. As warmth returned he wondered what kind of house he could possibly have landed in where wardrobes trapped people and carpets were laid on walls as well as floor.

The tests showed no abnormalities and it was decided that he should stay at home, where he would be able to recover in a calm and comfortable environment, rather than be shunted off to hospital where he’d probably have to wait in a draughty corridor for hours before any medic could deal with him.

So that’s what happened. We were just a few days away from Christmas.