Medication – Quetiapine, (Seroquel), and Prochlorperazine, (Stemetil). 

Mum is on a litany of medication, about 15 tablets a day. They come from the chemist pre-dispensed in a dosset box, which should make things easy except when the chemist gets things wrong, which over the past year, is about a third  of the time. Some are for coronary heart disease and diabetes and osteoporosis, but there is also an anti-psychotic, Prochlorperazine, the brand name of which is Stemetil, and she takes Amitriptiline for anxiety and pain. This current prescription has been in place only for a few months, and this piece describes how and why.

These two medications slow her down physically and mentally, but I think she is now on the right dose to give her the best possible life. I don’t think her paranoia could be further dampened by more anti-psychotic medication, and she would be even less mobile.

Mum has been on anti-psychotic medication for late onset Paranoid Schizophrenia for more than half of her life. This disease is a dysfunction of  the chemical make-up in the brain. Anti-psychotic medications attempt to redress this balance. Long-term use of anti-psychotics take their toll on the central nervous system, and in Mum’s case walking has become a process she has to think about, rather than take for granted. Now, and for some time, when mum doesn’t think about walking, she inclines forward and her feet don’t move with her, with predictable results. She can, however walk upstairs like anyone else. It’s a different part of the brain which is responsible for this set of movements. It comes automatically to her, just as it comes automatically to you and me. But walking, paradoxically, is a task in itself.

Imagine if you had to think about every step you took, how far you might get before you would come to a standstill because another more pressing thought has entered your mind which supersedes instructing your thigh to swing forward, and your foot to lift and replace itself on the floor before you. Add a lack of being able to balance. You will need a Zimmer frame.
Walking is hard, but turning around is harder still. You are unable to pivot. You have to place each foot. It takes ten or so steps to get round, and takes a couple of minutes, and some space for the frame.
The best possible life for mum is one where there is hope of improvement, where she can do more for herself, where she feels in control of her surroundings, where she has a modicum of independence, and where the level of paranoia, which will never go away, unless they invert some new drug, is low.

There are many ways I have used to help mum with her mobility; changing the Zimmer height, getting the doctor involved, taking her to an osteopath, helping manage her pain. However the biggest battle I have had was getting her on the correct dose of anti-psychotic medication. Strange terminology, but I do see this as some sort of a struggle.

May 2014
I am going back to last spring, which was when Dad’s health had failed so far that I became responsible for him and my mum. Stress is a trigger for psychotic episodes for schizophrenics, and Dad’s illness was that trigger. We kept the severity of the illness, which was oesophageal cancer, from mum, and indeed from ourselves, but there it was; he was weak, he was vomiting a lot, and he was in and out of hospital. She became anxious. Stress is a trigger for psychotic episodes for schizophrenics, and Dad’s illness was that trigger.

BOOM ! The paranoia, all vocally and loudly directed at my poor Dad, erupted. Interventions from the mental nurse were just visits, ( what, you mean you don’t have a mental nurse on a fast dial?).  I invited the psychiatrist round. She was a new one to us. We had asked for a change as the old one just sat back in his chair, nodded, and changed or didn’t change the medication to some thing else which was barely effective.  This one came around, was the first to take Mum’s life history, and was sweet, actually.

So Mum’s medication was changed by her very pleasant new psychiatrist, from Risperidone to Quetiapine, brand name Seroquel. The doctor had brought her Meds book with her, and had thumbed through it. Mum had been on nearly every anti-psychotic going, typical, and atypical. All had horrible side effects, and shouldn’t be taken with heart disease and diabetes sufferers. After being on samples from this cornucopia Mum was presently as paranoid as hell. Quetiapine was to be our Great White Hope, or in the case, Large Yellow Lozenge Hope.

Soon after her medication was changed to Quetiapine she not only kept up with her paranoia but she also started to fall more . I don’t know if this was down to the medication or not. She had been prone to falls all her life. Dad always put this down to attention seeking(!!!!). This seems harsh but in the life that they lived together it was understandable. Her first diagnosis in her first ‘mental breakdown’ was one of hysteria, not schizophrenia. Diagnoses of hysteria were fairly routine for women with mental and physical complaints for hundreds of years. The term ‘hysteria’ means ‘wandering womb’. Freud was completely taken with the concept. It is demeaning to be diagnosed with hysteria, don’t you think? ‘For Chrissakes, you hysterical woman, hoist your slopping uterus to the mainbraces of your connective tissue, and while you are about it stop throwing yourself downstairs.”. So much pain. (Elaine Showalter’s ‘Hystories’, gives good context to how female mental illness has been perceived over the years.).

By the end of the seventies,  Mum had a proper diagnosis of Paranoid Schizophrenia, but this takes many forms, and the correct medication is elusive.
Two of Mum’s brothers have vertigo. (Another two had Schizophrenia, both sadly deceased, both younger than Mum, both less well cared for. One in a hundred people have Schizophrenia. One in five homeless people have it. You can see how your life might decline when you get really, really annoying to live with. And you can’t function, can’t hold down a job, and crucially, don’t believe there is anything wrong with you so you refuse help.) And after 81 years, after yet another fall, Mum was taken into hospital and prescribed a medication, not for hysteria, or any other sort of attention seeking , but for vertigo.
Prochlorperazine, or Stemetil, is a medication for vertigo. It is also an anti-psychotic.
Mum came home after quite a pleasant stay in Kingston Hospital in a ward that is just off A and E which was full of elderly ladies, and caring staff, slower, less prone to falls, and crucially, after a month, less psychotic.
Note that the Prochlorperazine had been prescribed for vertigo, not for the paranoia. I had no idea that it was also an anti-psychotic. I should have read the literature I suppose, but I was otherwise engaged. Nobody in the medical profession, not the prescribing doctor in the hospital, not the GP who was certainly notified, not the psychiatrist, who was also kept informed and and not S the mental nurse, who was on my speed dial, mentioned that Mum was now on two anti-psychotics and would be dragging her feet and falling not  because of vertigo, but because she was so dopey.

This prescription was a game changer.

The Quetiapine was supposed to have controlled the paranoia, but it didn’t, the vertigo medication did that. The psychiatrist believed mum had not been complying with that medication, but she was. Eventually we would take her off Quetiapine, but not yet. I was so fearful of the acute paranoia that we would stick with the Quetiapine for a while yet.

My next battle was to be with Amitriptilene. And that led to the Chimney Pot debacle.

A Break – Laugharne.

Last week I took a break from looking after Mum. Her new carer is working out really well: she comes in the early evening for a couple of hours, from Tuesday to Friday, and did last weekend for me too. Two of my cousins and one of my sons mucked in and I felt comfortable enough to go away. I had long wanted to do a Dylan Thomas based visit to South Wales. I have an aunt there; she lost her husband a year ago on the 14th November, so it seemed a good thing to visit her and indulge myself at the same time. Then another aunt and uncle wanted to get away too, so we rented a cottage in The Mumbles together, five minutes from Swansea, and an hour away from Laugharne.
I was lucky enough in my early teenage years to attend a youth drama club in my home town. This was in the early seventies, and sizeable pieces of concrete slabs were put together to create a very functional cubic space for a couple of studios, and it was well equipped with lighting, and sound equipment. It had a good sized cafe and kitchen and office space. I attended Brycbox from my thirteenth to sixteenth year, and was involved in a couple of productions, The Crucible, and Under Milk Wood.  I wrote this piece originally for the Brycbox Facebook Page.


I ended up in Laugharne on a day that was to an apocalyptic one for Paris, where I might as well have been for a few days away. But I tipped up here with my Uncle and two Aunts.
We were in a place I didn’t know how to pronounce, (it’s ‘Larne’), until the Satnav informed me, because of Bycbox. I was Lily Smalls in Marion Spacey’s Under Milk Wood in 1975. Llaregub’s ‘sloeblack, slow, black, crowblack, fishingboatbobbing sea’, (intoned by Graham Pollard as Captain Cat) is Laugharne, where DT holidayed and lived and wrote and drank.


I loved Under Milk Wood at 15: phrases, “you can hear the dew falling”, ‘tidy wives’, ‘ mind the sun wipes its feet”, ” nothing grows in Polly Garter’s garden but washing and babies”, “no good boyo”, “Organ Morgan, it’s organ, organ, all the time with him”, and the delicious, “call me Dolores, like they do in the stories”, were often in my head, as non-sequiturs to random events in my life. I had never heard of Dylan Thomas before Brycbox, and it would be a while before I read his poetry. But, when I did, it was  alchemical in its effect on my heart and stomach. I was transfixed. ‘Do not go gentle into that good night, Rage, rage against the dying of the night…..’, and ‘Fern Hill’, and ‘A Child’s Christmas in Wales’, ‘And Death Shall have no Dominion’………they beat and chime and resonate with me still.
My uncle and I walked up past the tiny little garage where DT used to painfully craft his lines, to his and Caitlin’s boat house on stilts. We appreciated our luck, in a terribly wet weekend, of having the advantage of being able to see the most marvellous view of the wide estuary, of the fishing boat bobbing sea, of Milk Wood itself. It’s simply a very, very big, very beautiful vista. If you ever get the chance, go see.
And I took my little paperback script, with my name and your names scribbled over, and showed the people who looked after the place, and they were actually interested, and admired the photo of Laugharne on the front and commented on the difference to today’s scene. The lady in charge of the cafe who served us coffee and her experimental cranberry and orange welsh cakes was a friend of the Thomas children and was in an original production of UMW in Laugharne itself. Absolute magic. As a pilgrimage it couldn’t have gone much better, except that we then went to Brown’s hotel, which has to be one of the best pubs ever. Big brown leather furniture, and a huge wood fire.  
Brycbox……..Brycbox was a safe place to have all the hormonal surges of being 14/15, that awareness of sexuality but knowing it wasn’t quite for me yet…….that was Lily Smalls. I left the other to the Polly Garters and the Captain Cats, who were just older teenagers, of the Brycbox world, to the closed doors at parties, dope fumes furling through keyholes.
Do you remember the UMW production? The stage set was very ‘modern’ with scaffolding, and precarious raised platform stages. Butcher Beynon’s set, where I did my piece, was raised high, and accessed by ladders. I loved doing my Welsh accented “Oh there’s a face! Where you get that hair from, Lily?”. I was good at accents, not much good at acting. I was encouraged by our wonderful director Marion Spacey, native of Merthyr Tydfil, who brought along to see our production the actual daughter of DT, Aeronwy, who bizarrely lived in the borough. I owe a hell of a lot to Marion.
I wasn’t long at Brycbox, just a couple of years, but they added magic to my life.

THE INCONTINENCE (2)

“I’m sorry,” said mum.

Then I made Mum lunch, and when were leaving to go to the osteopath. I said, “I’ll leave him in the garden.”
“No you can’t do that. The neighbour’s will complain.”
“Fuck the neighbours. They’re out anyway. We won’t be an hour.”
“No, they’ll ring up.”

The neighbour’s on the posh side had rung up months ago when the dog was barking in the garden on account of my sister bringing her dog into the house. My sister’s dog is not to be put out.

At the osteopaths I learnt a new duty. In order to help mum walk better, I should insert my thumb into the roof of her mouth and push upwards, while pressing down on her head at the same time.

“You’ll have to pick up the ointment for the dog’s ear”, said mum, on the way back. So I parked on the double yellows, and went in to the vet. In the vets, sitting on the floor was a small ugly pug, with one of its back legs stuck out straight in front of it. “That’s not normal,” I thought. Its owner half dragged it out of the surgery, as it sort of bottom shuffled in a desultory effort to do something to aid its own progress, with its arse on the floor, back leg straight out, pointing forward. At least Kerry only has a scabby ear, a pus-sy eye, and voluntary and involuntary incontinence.

In the ointment pack was an instruction to arrange an audience with the vet in December if not sooner, on account of the repeat prescription for the ointment for the scabby ear. The last alternative to this somewhat ineffective treatment was an operation with a bill of £675.

When we came back the dog had pissed over the kitchen floor.
Mum said “The dog’s got to go.”.

When we eventually got back to mum’s, I crested the wave of several more calamities. There’s a lot of, “While you’re here, will you just………..”

“Why doesn’t the bedroom door stay open like it used to?”. I moved a small wooden unit full of Waterford Crystal, moved the bed, and a large painting, but it still won’t stay open like it used to. Then there was “Where’s the lid of the germolene?”: I had no idea.

Then I phoned the doctor’s surgery in search of the incontinence service. The doctor wanted to know why mum needed the incontinence service. Some questions leave me quite slack jawed.

I described my day to my husband and son.

Billy said, “ah poor Kerry. But he’s got to go. He’s too much for you mum……..How do you feel about it?”
“Really sad,” I said. “But who’s going to take him to the vets?”
“Andy.”, said my husband. “Andy hates that dog”
Andy is my brother in law. He rarely visits, and when he does he moans about the dog.
“Well at least I’ll have my mum again,” said Bill.

Which is quite sweet except that he’s 26 and last night I did his ironing and hung up his washing for him AND I was making him dinner. What else does he want from me?

THE INCONTINENCE (1)

I don’t know whether to talk about Mum or the dog now.

Let’s start with the dog.

“You’ll have to clean his eye.” Mum said.

“Jesus,” I said, “”that’s terrible”. Kerry’s right eye was really pus-sy. I cleaned it out with Optrex, and an ointment called Goldeneye, which works for low grade eye infections in humans and canines.

I kind of knew in my heart, as I left the dog locked in the kitchen for the hour that we would be out of the house, before mum’s first appointment of the day, that he would have pissed all over the floor by the time we returned.

Going out involves allowing 10 minutes for mum to actually make it from the armchair to the back door on her frame, and maybe if we have little time, wheeling her to the door. She then has to make it over the threshold and onto the step, by way of a large and unattractive aluminium (?) rail, and the handle of the kitchen door, and onto the little patio. We had got so far, today, when I noticed that I had missed scooping up some dog crap on the patio on the way to the back gate. So I had to take a chance on mum not falling, and clear up the poo, and then manoeuvre the wheelchair in behind her, having covered up the tiny bits of crap left on the patio with cardboard covers from ready meals, from the recycling.

Needless to say, I still got dog crap on the wheels of the wheelchair, and by this time we were late and I had to chuck the chair into my boot with the tiny bits of crap. So small but so potent. It was an uneventful dentist visit. Mum’s gums had healed well from the final plucking out of her bottom teeth. The bumps in her gums were from extra bone that the jaw had made in the attempt to keep those final four or five teeth in, which was interesting, I thought. She should come back in March for a complete set of dentures.

I was stunned to realise that Mum has no entitlement to reduction on NHS charges despite being 82, on full attendance allowance, and mad. It will cost her £220 quid for a full set in March. I suppose it’s good value.

We got fish and chips from the chippie and went back so I could clean up the dog’s piss in the kitchen in preparation for leaving him to piss again in the afternoon as a way to pass the time while I took mum to the osteopath. He really doesn’t like it on his own.

I started to feel very sorry for myself as I washed the kitchen floor. How did I come to be such a Cinderella? How come my sister does so little but buy Mum a blouse and a tin of Febreze every three weeks?

And then it got even worse. The dog went out, crapped, and came back into the house and trod little paw size bits of crap all over my clean kitchen floor and the red carpet in the hall and the lounge. I went into ‘Cinderella with Apoplexy’ mode. “HOW HAS MY LIFE COME TO THIS.”, I bawled, as I pulled the dog towards a bowl of soapy water that he really didn’t want to put his foot in thank you very much, and then realised that I had no towel so he wandered away over the carpet with his still slightly pooey very wet paws. “WHAT HAVE I DONE TO DESERVE THIS………..SHIT.”, I yowled as I got down on hands and knees and wet-wiped the sixty five bits of paw shaped shit out of the carpet.

“I’m sorry,” said mum.

THE DOG

If you were to choose a dog to be a bit of company to your 82 year old mother as she struggles to live independently, you might not, if you had any sense, choose this one.

Look up the breed characteristics of a Kerry Blue and you will find that it is an obstinate dog, not very bright, who loves nothing better than to sink it’s teeth into other dogs. It’s other characteristics are that it doesn’t moult, and it doesn’t affect the nasal passages and tear ducts of those who are allergic to dogs. It does affect the eardrums of everyone, and makes all visitors aware and sensitive to its needs. It’s needs are that it …….I should call it he, really, shouldn’t I. His needs are that he shout hello really loudly, over and over again to visitors, and when they go he needs to repeat on ‘don’t leave me’. He needs to claw his way through the obstacle race of small tables, foot rests, and chairs that are placed the wrong way round against the lovely bay window to try to prevent him getting through, so that he can place his feet on the paintwork which he has destroyed on the window cill, and shout “hello, hello , hello,”and then “come back, come back, come back,” to passers by, getting down after a very long time, with a little whimper of “where did they even go?”, and a bemused expression.

image

Here’s a picture of the afore mentioned dog. His name is Kerry. I hope I don’t need to explain why. His good points are………..hmmm. He is friendly, and very docile with children, once they get over his bark. Mum, with all her complexities, is ever optimistic, and loves the dog, although sometimes she throws things at him to stop him barking. Many’s the time I’ve pick up tubes of germolene, anusol ointment and lids of Seven Seas cod liver oil capsules, and small inspirational books of the sort that well meaning relatives have bought her from the check out area at Waterstones, from the bay window.

Mum’s fate in her future in the house is bound up with that dog. He is company for her, and he is a great guard dog in the sense that he’d frighten the bejaysus out of an intruder, and might well go for someone in such circumstances, unless they brought their own dog, in which case he would just go for the dog. “GRRRRRRRRR…let me at ‘im.”. I just want to make it clear that at no point has this dog been encouraged to fight other dogs. In fact my dad refused to believe there was much of a problem until one day Kerry escaped from the garden of dad’s house in the country in France. He was brought back by two irate farmers, held upside down by his hocks. Surrounded by fields of cattle, an ostrich farm, and horses, he had savaged not the livestock, but an expensive and well-trained farm dog, He was lucky they didn’t shoot him. I can only think they had run out of ammunition. Dad gave them a few bottles of wine.

My dad chose this dog because my brother in law is slightly sensitive to dogs. My brother in law rarely visits. He and my sister hate the dog, and I had to ask them to desist from telling mum that they were going to re-home him after my father died earlier this year. Ditto my mother. My mother does not want to go in a nursing home. She wants to stay in her own home, with that dog, even if it kills me.

When my husband, youngest son and I were discussing the dog recently, the question arose if Kerry was a cute puppy.

“All puppies are cute!”, I protested. Silence from them. They did the eyebrow thing.
“Kerry is definitely getting better.”, my son said, without, I thought, a trace of irony. I looked up.
“Do you know how many times he barked at me yesterday? “.
“No?”, I replied, hoping, not many, with that sort of opening line. “I didn’t notice…..”
“Sixty. He barked at me sixty times. We were only there for ten minutes. I thought I would just count and let you know.”
“Oh. Thanks.”
“Mum, why don’t you use that citronella collar thing I bought when I was staying round there?”

The collar is activated by the muscles in the throat going into the sort of convulsions that happen during the dog’s shouting its limited vocabulary of “hello”, “who’s that”, “just let me at that other dog, I’ll tear him limb from limb”, “don’t leave me”, and “it’s 12.45 and it’s time for my dentistix” again and again and again. It sprays citronella, a smell that dogs loathe, under the throat and into the nasal passages. It has a Pavlovian effect eventually on even the dimmest of dogs, as they associate their loud vocal communication with a goddamn awful stink. They can get away with an enquiring or doleful whine, but not a bark.

The result of three days training with the citronella collar was that we then had a silent but incontinent dog.

THE BAG

“How dare you call anyone a “bag” mum. That’s just awful. Have some respect for Christ sakes!”
“I’ll call her what I feckin’ like. How dare she come into my house. What are all those little bits of paper on the floor. That’s her. Sprinkling bits of white paper on the floor.”
“That’s from the washing mum. That’s from bits of a tissue you left in your pocket and it got washed, and I shook the washing out, and it got walked into the hall.”.
“Feckin’ Bag. You don’t believe me, do you. Believe me, believe me, BELIEVE ME!”

Well, no.

This particular paranoia has been going on for about 20 years. My poor Dad, who to mine and everyone else’s knowledge, never played away, was accused of having another woman, and sometimes several. This other woman, who was never seen, but was felt as a presence, would go into mum’s wardrobe, and move her clothes around, and remove and then replace, red blouses.

This role as wardrobe rummager blossomed into a much richer one as Dad became ill with oesophageal cancer, and then died on February 14th last year. It was an interesting year. Dad vomitting relentlessly into a double tesco bag lined waste paper basket all night as my mother screamed obscenities upstairs at The Bag who was committing all kinds of obscenities with Dad. Negligees were mentioned. The Bag brought her teenage prostitute daughters in. In negligees. We have a tape. It’s unedifying listening but I will do a transcript one day.

MUM

My mum is disabled, she has to use a Zimmer frame, is 82 and is a paranoid schizophrenic. At present this presents itself in relatively low level paranoia. Any perception that she has of her surroundings being in any way changed from her memory, is only explicable to her in these terms: an ex-lover of my dad’s who has been around so long, that she must be in her seventies, is moving things around. My mother calls her ‘the Bag’.

For instance the other night at around 11.30 she phoned up.
“Come round, you must come round.”
“What s wrong mum? ”
“No, I can’t tell you, really I can’t, please come round, it’s awful, it’s terrible!”
“I’ll be right round mum.”
“Billy!”, I shout to my son, “You have to come round to mum’s with me, she sounds awful, I think the dog must have died!”
“Why?”
“I don’t know.”, I replied. “She sounded really panicked. We can only hope.”
“Jesus.”, he said. Like me, I could tell he was conflicted.

So we got round there. It takes about eight minutes in the middle of the night.

And the dog barked at us as we arrived.

Goddamn.

“What’s wrong Mum?”
“The toilet seat.”
“The toilet seat? ”
“Yes, the fecking toilet seat. It’s up. I am sure, I AM SURE I left it down. I want you to ring the police.”
“You’ve called us out at half eleven, because of the toilet seat?”
“That fecking bag has been in again. Call 999.”
I turned the toilet seat down, we made sure mum was back in bed and we left.

The next day I went round at lunch time.
“Are you ok Mum?”
“Yes, but look in the commode. How did the commode fill up like that?”
“…………” I look in the pot. It’s quite full.
“I never pissed all that. That feckin’ bag has been in again.”