Saturday, 21 January 2017

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.

Tuesday, 17 January 2017

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.

Friday, 13 January 2017

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?"

Tuesday, 10 January 2017

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.

Monday, 9 January 2017

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.

Saturday, 7 January 2017


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.

Sunday, 18 December 2016

Christmas Hates

If you love Christmas and everything that goes with it, don’t read on. I am feeling grumpy. A list of my favourite hates might just make me feel better:

Mince Pies, hot, cold, or tepid, with or without cream.
Christmas cake, the stuff that sticks to your teeth like cement
Christmas Pudding with or without Brandy butter
(in fact, anything that’s overloaded with dried fruit)
Mulled Wine, mulled cider, mulled apple juice. Mulled anything.
Overcooked turkey
Full plates
Tinny carols in shops
Charity tins rattling in my face
Kids at the door singing a fraction of a carol and expecting instant largesse
Flickering Christmas lights on the front of houses
Overdone decorations anywhere, full stop
Smelly Santas in grottoes
Rain on Christmas Day
Round robins from anyone, particularly the boastful kind
Stampeding shoppers
Forgetting to buy batteries for kids’ toys
Having to be nice to people you can’t stand the sight of at any other time of year
Calling Christmas X-mas
Forgetting to buy vital items like lemons and indigestion pills
Watching a growing pile of gifts you will have to exchange after Christmas
People who give you a receipt with their gift to make the exchange easier
Christmas Specials on TV of programmes I never watch at any other time
Feeling grumpy when everyone else is having a jolly good time.

Do you have a similar list?