Tag: Carer

War at Waitrose. Wartrose. Waitrage.

 

Take four shoppers, let’s call them A, B, and C and D. They finished their shopping in that order. You wouldn’t be reading this if they had unloaded at the check-out in that same sequence. A, so far as I know, was a faultless shopper. D had arrived at the check out next. She has unpacked some shopping, some rather nice china bowls on the conveyor belt after A’s groceries, before going off to get a cup of coffee and then finish the rest of her shopping, viz bread, butter, and cheese and milk. She’d left her trolley which had about another twenty or so items in it at the check out, presumably because at that point the conveyor belt was still full with A’s shopping. There was just enough space for those bowls.

Shopper B is me. I finish my shopping. I arrive at the check-out, see the nice blue bowls on the conveyor belt, and the rest of the shopping in the trolley, and think, oh, someone’s forgotten the bread or something. And I wait. There’s nothing else to do. Minutes go by. Shopper A has now got her shopping through and is paying and getting ready to clear off out of it.

Shopper C, who has arrived a couple of minutes after me is a tall, elderly, Eastern European man.

“Have you seen this person?” asks Shopper C of me (B). He means D.

“No.” I reply.

“Have you been here long?”

“Three or four minutes.”

C is fed up. He tells me he has seen this before. I think he has seen rather a lot of things before, rather more serious than selfish behaviour at Waitrose. But this is really getting up his considerable nose.

“Do you know what we should do?”, he says, Shopper C, “Take that trolley and push it into the aisle.”.

And so that’s what we do. The moment when I release the trolley and watch it roll with it’s own kinetic force down the shampoo and minor medical supplies aisle is a uniquely pleasurable experience. C is enjoying it too.

And then I unpack my shopping. But we made a mistake. We left the nice blue bowls on the conveyor belt and at that moment Shopper D comes back, having actually now finished her staple shopping, an armful of it, and drinking a cup of coffee.

D is a well groomed woman in her thirties. Just look at her. She has a superior attitude and a sense of entitlement.

She steps in front of me. So now the order at the check-out is D, B, C. Which is clearly wrong.

“Terribly sorry,” she says to the cashier, “They had run out of cups at the coffee machine……. Where’s my trolley?”

“It’s in the aisle.” I say. “Next to the shampoo. Sling your ’ook.”

She was of Middle Eastern extraction and perhaps she didn’t understand the expression. “Oh.”, said the cashier, and started to put the blue bowls through, leaning over to me and saying, “It’s just that she got stuck at the coffee machine.”.

“She hadn’t finished her shopping.”. I protested. “She half unpacked, then went to get a coffee and THEN finished her shopping. I’m first. Serve me first. Please.”

I might not have said please. I probably did.

The cashier puts the blue bowls through the check out.

“I want the manager.” said Shopper C, in his tall, Eastern European, frustrated way. “This happens too often here. I want to know what the culture is in this shop. Is this how people are supposed to do their shopping?”

“I just had a few other things to get.”, said D, as she gets her trolley from the aisle. “Everybody does it.”.

In discussion it turned out that although we had sometimes left our shopping to get one or two items, neither of us, B or C, had done that and got ourselves a cup of coffee at the same time.

“It’s not my fault there weren’t any cups”

“No but it’s your fault you went to the coffee machine after you took a place here!”

“Everybody does it. Your coffee goes cold if you get it when you come in.”

“What! WHAT!????”

“Don’t talk to me. Don’t say anything else to me.”

The manager, who is about 24 with a spiv moustache, is tackled by shopper C. “I want to know if this is now the normal procedure in this shop. Or is it that some people think they are better than others, that their time is of more value to them than mine to me. It seems to me that this type of person is also the type who park their enormous four wheel drive vehicles in the spaces for families with children because they are too stupid and selfish to park in normal spaces.”.

Fair point, I thought. But I wasn’t convinced that this was normal. It seemed extraordinary to me. It had been a while since I’d been in this Waitrose. It had been like a balm to me to go out and do the shopping here when all this caring business landed on my shoulders three years ago. It was an escape from the sick/madhouse. Now it was the madhouse.

Shopper D has now pushed herself in front of me (B), and is pushing my shopping back to make room for hers.

The check-out supervisor comes over and helps her. “Don’t worry Madam, don’t take any notice, let me help you with your shopping. Do you need someone to help you pack?”

“Yes of course she does.”, I say. “She’s now got to unpack the rest of her trolley as the cashier checks the first bits through. She’s not capable of packing her own shopping.”

“It’s not my fault they ran out of cups. You shouldn’t run out of cups.”. The second sentence was aimed at the Supervisor. The bitch, sorry, Shopper D, is annoyed at Waitrose for inconveniencing her with its inefficient free coffee service.

“Terribly sorry but, please don’t worry Madam, it’s fine. It’s fine. Take no notice”

“Thank you. Thank you.”, says D.

Well it is not fine with me. “It’s not fine to behave the way you do. It’s not fine at all. Supposing everyone did that? Half unpack their unfinished shopping and then go to get a coffee. The place would be in chaos. It’s not right. Don’t do it again. Get your coffee when you start your shopping. Then finish your shopping before you go to the checkout. That works fine. Can you imagine people behaving this way in LIDL?”

To be fair to her, and in retrospect, I can’t imagine Shopper D imagining anything that might take place in LIDL. And that might explain her response, through clenched teeth.

“I told you already. Don’t talk to me.”.

The increasingly annoyed Shopper C is still expressing his frustration at the Manager, who, going by the external arrangement of his facial features and gangling limbs, is finding the situation humorous. Customers, eh. This will be a good one for the staffroom. What can be done? Nothing. It’s not an issue, just a shopper who had forgotten a couple of items.

“You are laughing at me. You are not taking this seriously!”

The manager is definitely smirking.

The check-out supervisor offers to open up a new check-out for us.

We are unanimous, C and I, (or B, if you are lost in lettering). “No thank you. We just want this one to be managed properly. ”

D hisses, “I was here first and I only went to get a coffee.”.

“Oh dear. Madam, it’s fine. I hope this hasn’t spoiled your shopping.”

Shopper D is leaving.

“IT’S NOT FINE.”, I say. I definitely don’t want this D woman to think this is fine.

“Goodbye Madam. Hello Madam, so sorry to keep you waiting. Do you need any help with your shopping? Have you got your MyWaitrose Card ready?”

***********************

I go back in to Waitrose a couple of days later.

I do my shopping. I think I finish. I approach the checkout. I remember a few more items, and I push my trolley over to the fresh pasta, pesto, other stuff, and then come back to the same checkout which now has an unattended basket travelling down the conveyor belt.

I can’t believe it. I am Mr. Meldrew.

An elderly Indian man appears with his arms full of shopping. About ten items. More than are in his basket.

“You can’t do this!” I say. “You can’t dump a basket on the check out and THEN GO AND FINISH YOUR SHOPPING!”

“Everybody does it.” He says. “It happens all the time. People even get their coffee after they’ve put their stuff down on the conveyor belt.”

I turn round, saying “So this is a thing. Is it me or is everything shit?” to no-one in particular when I see that the lady behind me in this excuse for a queue is my very glum looking ex-manager from a long-time gone.

“Yes it is.” She said. “I’ve just had my purse pinched in the High Street. Could you look after my trolley while I pick up a couple of bits?”.

This time I complained to the manager, who, at the age of 12, had never heard of this happening before. He would speak to the cashiers and make sure it never happened again.

Why do I support Mum in her own home?

Why do I carry on supporting my Mum in her own home?

I was having a conversation with Almaz, Mum’s carer the other day. It’s not an easy job for either of us, and Mum has recently had a urinary tract infection (UTI), which means that at times she can barely take her weight at all, and she is quite confused and very sleepy. She has had a couple of falls and has injured her right wrist and her ribs. They are possibly fractures, but according to Mum’s GP they are the sort of fractures that are untreatable, and the probability is that if I take her to hospital  for X-ray they would keep her in. As we’ve learned, hospitals are not the best place for the elderly. Infections, confusion with medication by medical professionals, and a sort of benign neglect seems the order of the day. I know Mum would be at no risk of falling, which she is at home, but she would be at certain risk of being bed-bound. Every time she has gone into hospital it’s been noticeable that Mum comes out less able than when she went in. There is some nominal physiotherapy but resources are so stretched that it’s ineffective. Muscle atrophy is a real and present and life-threatening risk.

Keeping Mum safe from falling in her own home, which is where she wants to be, is very difficult. It’s difficult because Mum has vertigo sometimes, when she just falls with little warning. She describes this as “my brain goes sideways”. Sometimes she just overreaches, trying to pick something up off the floor, or mis-judges where the chair is. When she has a UTI, she can just get weak and confused and fall. She might go for months without falling and then fall three times in a week.

Ideally Mum would be living with me, but she doesn’t want to.

It would not be too unreasonable for me to insist that Mum goes to live in a nursing home and hope that she would get used to it and would not be too unhappy. But I don’t want to.

I have visited lots of nursing homes over the last two or three years, most recently with the idea of convalescence which I thought Mum needed, weakened as she was after her last stay in hospital. I thought there would be homes out there, specifically dedicated to getting elderly people back on their feet, with physiotherapy a priority. In fact there is nothing which matches what has turned out to be a Utopian dream: my best bet turned out to be expensive (over 1,500 quid a week), down at heel, smelling of wee, and inhabited by the drooling. The other option, and there were just two within a ten mile radius of me, (and I live in a heavily populated part of the world with good infrastructure), refused to have her because of her schizophrenia. As her symptoms are limited to paranoia about a woman visiting her own home, it would not have affected them, but they would not be persuaded.  As I’ve blogged earlier, the NHS option, Tolworth Rehabilitation Hospital, isn’t worthy of the name for people like my Mum, although at least it’s clean.

In the previous year I had been looking for somewhere suitable to take my Dad when he was dying and had exceeded his stay at the Princess Alice Hospice. The best, newest nursing home in the area is Brook House: it’s got awards. I had a conversation with the family Doctor the other day about Brook House.

“Don’t you think it’s time now to persuade your mother to go into a home? What about the one that your Dad was in?”

“Brook House, Doctor, is haunted by the demented. They float up and down the corridors, They were always in Dad’s room if you remember. They’d drive Mum mad. She’d hate it.”

“Your Dad took it all in very good part!”

“Yes but he knew he didn’t have very long left. He was going to die. In fact he made his mind up after a few days there that he was going to die as soon as he could. And he did. Not that the staff weren’t nice, most of them were very good to him. But if he had stayed in the hospice he would have lived a bit longer. Anyway it would be depressing for Mum. She would hate it. So as long as we can Doctor, we will keep her at home.”.

Not long after my Dad died my sister suggested that we book Mum into Brook House for some respite for me, as she wasn’t going to help out. She proposed putting Mum into one of the quiet rooms on the second floor. Maybe she didn’t know that the quiet rooms are put aside mainly for the dying. They didn’t have any available for Dad until his second week, and he said he’d rather die surrounded by the life that there was than nothing at all.

Maybe she thinks Mum is anti-social, and wouldn’t bother about being in a room on her own: Mum won’t, for instance, go to social clubs for the elderly. Mum’s problem is not that she is anti-social, but that she is quite shy, and part of that is on account of her accent. She comes from Southern Ireland, and her accent is strong still after being here since the mid-fifties, and people do have a problem understanding her. But she is very interested in other people and observant. She likes to talk to people who make the effort to  understand her. She’s interested in politics, was in the Remain camp, couldn’t believe Brexit, or the current Government shenanigans with Gove, Boris etc. Putting her in a room on her own in the home where her husband had just died in a quiet area where people are looked after while they die was not a goer.

Anyway, I began this entry about a chat with Almaz. She said “I understand. The thing about your Mum is that she never gives up. Even when she falls, and I help her to get up, she’s laughing, she’s positive. She really tries to be independent. It seems impossible, but she keeps going. Her attitude makes me want to help her.”

Mum really does not want to leave her home of 36 years. She loves her home, and it’s all equipped for her to live downstairs. She now has carers in to help, which takes some of the  load off me. We just about keep things going and try to keep her on her feet.

Mum has been through a hell of a lot in her life. Probably more than you. Certainly more than me or my sister. Poverty, hard work, emigration, cruelty, extreme mental illness, frequent falls, pain. That’s an amazing amount of experience, although it took just one sentence to say it. I respect all that. And she is still laughing at the age of 82 and she still wants to keep going. As long as I can, I will support her.

The Rehab hospital that pretty much isn’t.


I will preface this by saying that this is our experience of the bay that my mother was in between the 16th December to the 5th January 2016. I have fished on Facebook for other peoples’ experiences and so far no-one has a bad word to say about the place. It seems to me that people who had specific problems like knee injuries are treated. Mum’s problems are global and they do not have the right approach to help people like her. She would have deteriorated and ended up in a nursing home, rather than back in her own home if it hadn’t been for my intervention and her own determination. 
 
“Well, welcome to our ward! We were expecting you yesterday, but you didn’t arrive! Did you get lost?”
Patient transport just hadn’t turned up at Kingston Hospital yesterday to transfer Mum to Tolworth rehabilitation unit, and so altogether Mum had spent 13 days in a hospital bed, and the chair next to it, with no diagnosis apart from that she needed rehabilitation. A previous X-ray some months ago had revealed a ‘probable’ crush fracture in the pelvis, but this time her X-rays were clear. No fracture.
There did not seem to be any reason to me why Mum should not be rehabilitated back to the state that she was in before her admittance, that is, able to live on her own, with her dog, with a lot of support from me and from a carer for a few hours a week. Mum could shower herself, dress herself, got to the loo, make a cup of tea, warm up a microwave meal, and let the dog in and out several times a day. She had an Age UK alarm which she could press if she fell, which sometimes happened. She is not depressed, has a nice home, a loving family and plenty of visitors, grandchildren and great children. She does quite a bit of exercise at home: she has hand weights, leg weights, a Pilates ring, stretch bands and pedals. She has a life very worth living.
I had heard good things about Tolworth Hospital, and had great expectations that she would get a thorough assessment, and a programme of physiotherapy which would help her get back home, maybe better than before. Mum has plans to get off the zimmer.
This is Tolworth Hospital’s entry in the NHS yourhealthcare.org

The Cedars Unit at Tolworth Hospital has 35 beds, providing nurse/therapy-led rehabilitation for adult patients in Kingston.
Patients are either admitted from home or from a local acute hospital, (such as Kingston Hospital) and include patients requiring stroke rehabilitation and those who require short term care such as intravenous fluids or medication, blood transfusion.
Patients are admitted who require rehabilitation, with an individual programme of care to enable them to fulfil their rehabilitation potential and independence. This includes the physical, psychological and social aspects of rehabilitation with the ultimate aim of each patient returning to their own home.



Sounds good. At a council meeting a few months earlier I had heard a local doctor speak about the council’s plans to rehabilitate people like my mum. He made physiotherapy and rehabilitation for the elderly sound like a priority. At the time this was part of the alternative plan to the accommodation provided by Hobkirk House, a rehabilitation home which the council were closing because at 40, it was deemed too old.
The ward sister who took Mum’s history from me told me she was not normally on the ward, and gave me some advice. “You must make sure you speak up for your Mum.”.
Hmmm.
My heart had already sunk a little as I recognised one of the physiotherapists as being the community physio who visited mum at home at my request three times back in the summer. I thought a physiotherapist could help with mum’s back-ache, give her advice on exercises, and maybe work out what was going on with Mum’s gait, which was awkward and twisted. Her balance was poor.
I thought I knew what physiotherapists were. I thought they gave exercises, manual therapy, ultrasound treatment, massage. Here’s what it says in the Chartered Physiotherapists web-site.

Physiotherapy helps restore movement and function when someone is affected by injury, illness or disability.
Physiotherapists help people affected by injury, illness or disability through movement and exercise, manual therapy, education and advice. 
They maintain health for people of all ages, helping patients to manage pain and prevent disease.
The profession helps to encourage development and facilitate recovery, enabling people to stay in work while helping them to remain independent for as long as possible.
 
This physio had been very lacking in understanding when I phoned to postpone a visit, once because Mum wasn’t well, and the other time because she had had a recent fall and was shaken up. “Well you are being very unreliable. You’ve got one last chance. You are stopping me from seeing other elderly people who need my help.”. She came again, said she could do no more for Mum, and if I needed her again, to call…….She did give mum some exercises to do, and refused to change Mum’s zimmer frame. I had been convinced that the frame she had was too low and was giving her back ache. It was only when I phoned up some months later to say that mum’s osteopath said the frame was too low, that I was allowed to drive in to Tolworth hospital and choose a taller one from their racks of hundreds of zimmer frames. Mum’s back ache diminished as a result, in spite of, not because of, this particular physiotherapist.
But while the ward sister was taking Mum’s history from me, Mum was already involved in a chair based physio game where the patients were saying their name and doing some exercise. Wonderful, I thought. Some social and physical activity, just what mum needs.
That was the only time in nearly three weeks that she was there that this took place.
I thought it would be a couple of days before a proper assessment was made and a programme of exercise tailored for Mum was put into practice, so I was not surprised when not a lot happened for a few days. I was worried and had slightly lower expectations as it was coming up to Xmas. I had little hope of her getting out in time for Xmas.
At this stage Mum had gained weight in Kingston hospital, and could not stand up without considerable pain. She had had a catheter since the second day in Kingston Hospital, and consequently had little need to move. So she didn’t.
The wards are long, three bays being about 8 to 10 feet wide each. There is a tv at the end by the window. Mum was at the end by the nurses desk, and she couldn’t see the telly at all.

There was often a wait for the loo as there didn’t seem to be enough toilets, or showers for that matter. In those circumstances a urine catheter is a good idea.
But the wards are clean, and the food is very good. The nurses are nice.
Mum complained of not being able to sleep.
“It’s not noisy here Mum is it?”
it all seemed pretty quiet to me.
One evening I came in at about 7pm. A very nice young woman was dispensing hot drinks. She smiled at Mum. “Coffee, white, no sugar!”
“Yes.”, said Mum. “You know me now!”

“Mum, what are you doing drinking coffee at this time of night? No wonder you can’t sleep!”

“Well, they come round and give it to me!”

“Why are you giving people coffee in the evening? Do you drink coffee in the evening?”, I ask the pleasant young woman, who has stopped smiling and whose eyebrows are now knitting a bemused pattern across her forehead.

“No, I never drink coffee in the evening. I wouldn’t sleep…”

“So why?….??”

“Because this is my job.”.

“Well please don’t give this lady coffee at this time any more. I am sorry, but I do think it’s a silly thing to do.”

“Ok. Sorry.”

She went to give coffee to other people’s mums.

“What did you say that to her for. She was nice!”, said Mum.

“Well she is stopping you from sleeping.”

“Huh.”
She was waited on hand and foot of course: the staff were lovely and very solicitous that she should not fall. The hospital was like a little safe cocoon.
 
They have a wonderful contraption on the ward in Tolworth which helps the nurses push the patients from their beds to the toilet and back in great style. She found this quite amusing.
   

 They have a little gym in the unit. Mum was taken there once during her stay.
I visited every day. There was no physiotherapist around at the weekend, which was what I expected, but in the week, there were one or two on the ward, watching people walk along using their zimmer frames. Mum was still not up on her feet by her second week.
Every weekday I had asked the same question. “What physio did you get today Mum?”
And I got the same answer, from her, “Nothing. The physio came and tapped me on the shoulder and asked me to stand up, and when I stood up I was in pain, and he told me to sit down, and then he left me. That was it.”
I encouraged mum to stand up and sit down as much whenever she could, holding on to the hospital trolley for balance. Sometimes she was in more pain than at other times and could not do it.
By that second week I could see what was going on, which was nothing. Nothing like what the Chartered Physiotherapist website led me to expect. I was getting quite upset, and very worried for Mum’s future.
Muscles atrophy with rest. Circulation deteriorates. Mum’s ankles were puffing up, so they gave her more bed rest so that she could keep her feet up more, so that fluid would stop pooling in her ankles. She still had the catheter, even though I had asked at arrival whether this could be removed. I was told that Mum’s problems were far too serious to warrant the removal of the catheter. I insisted that they try, as Mum’s bladder although a bit unreliable, generally works ok. She is prone to retention at times, but after a while she can piss like a horse.
The lady in the middle bay opposite beckoned me over.
“What sort of a place is this?”she asked. “Do you know?”. At first I thought she was suffering from dementia, and didn’t know where she was, but this proved far from the case. She was very dissatisfied with her treatment, and she was arranging for her family to take her home and get her a private physiotherapist.
“You know dear, without help at our age, our bodies will just decline! I can’t just sit here and hope to get better! I have to get out of here. Or slowly but surely, I will die. I have been here for three weeks. Fortunately I have the money to pay for private care. Thank God.”
I was then summoned by the gentleman visitor to the bed opposite Mum’s.
“Do you know what’s going on here?”, he asked. A sadder story emerged. His partner had already been in Hospital for five weeks, having been taken into casualty after collapsing suddenly. There now seemed to be nothing wrong with her except a gradual physical deterioration. “Is she getting any physiotherapy here?” I asked, “No.” he said.
“They” were saying that she was going to be put into a nursing home at £5,000 a month, which amount would be drawn against their home. He could live in it till he died, but then the money would go to the state. Five weeks before, the couple were managing for themselves.
During the time Mum was there I saw that lady decline from being able to sit up to spending her days lying in bed. Mum was worried about her, but couldn’t talk to her because the wards were so wide.
“What is this, some sort of holding place for elderly people?”, he asked me.
“It’s supposed to be for rehabilitation.”, I said.
“Well there’s not much of that going on. And they won’t let me take her home. We are trapped here.I ‘ve been told she is safe here, but what’s the point of being safe if you are so miserable? This isn’t life, it’s existence. Jane can’t see the television, can’t talk to anyone. It’s awful.”
At the end of the ward, near the telly, there were two ladies who were in bed all day.
The lady right next to Mum was pretty self-sufficient, and pottered around, spending much of her time in the day room.
I said I wanted to see the Sister. “I am very worried about my Mum. The more she does nothing the more her body will get used to doing nothing and she will just deteriorate. I thought there was supposed to be some rehabilitation, some physiotherapy going on here! Look at all these people, just lying here, without any intervention!”
I was upset and hustled in to the sister’s office.
The sister said that Mum’s safety was paramount. That because she said she was in pain, the physiotherapist would not get her up and moving. Supposing she did get up and fell? Then that would put the safety of the staff at risk.
“But is that all you do here? Just watch people walk? What do you consider rehabilitation? I would have thought you could do something with my mum. Get her legs stronger, get her body ready to move again. The longer she just sits there, the less likely she is ever going to be able to walk again! She wants to be back in her own home, not spending the rest of her life being lifted about! You are supposed to be helping her to get back to how she was before, not supervising her decline. And no-one, not here or at Kingston Hospital has ever told us what is wrong with her!……….It it was you or me who arrived at A and E not able to weight bear, you would hope someone might be interested to find out why! “.
“Hmmm, said the Sister, and we discussed Mum’s case a bit more. The effects of over medication, the falls, the vertigo, the falls, the pain, no fracture….
“Well, she has Sacral Insufficiency then. She won’t ever get much better.”
“OH”.
I just have to pretty much ignore this news.
The head physio arrived. He listened to me too. “I see, well we could get some chair based exercises for your mum sorted out. I will get X to come by and give her something to do. She’s not on at the moment, she will come round tomorrow.”
“Please do! If she can’t stand she should still be having some form of rehabilitation to help her. She has arms and she has a spine she can use, which should be exercised. She should not just be sitting doing nothing. You must be able to do something for her.”. Tomorrow was the only afternoon I wasn’t visiting.
X never came. She was the physio who had been round the house. I didn’t expect much and she didn’t even meet my expectations.
But, I had spotted a few of these scattered around the ward.

    
 
Mum has a set at home, and uses them daily. “Could Mum not use a pair of those pedals?”, I asked the Head Physio.
Yes of course she could, no problem!
And so she was set up with a set of pedals that had been lying redundant so far as I could see, and she used them, and she stood up and sat down again for most of the day.
“For goodness sake Mum, if they come and ask you if you can stand up, don’t say you are in pain, or they will leave you to it. Just get up and get on with it.”.
Within a couple of days Mum was on her feet again, and the physios wheeled a wheelchair behind her as she walked up and down to the Xmas Tree at the end of the corridor. Arrangements were made for her discharge.
She could walk, so she was out. They also gave her a chance to go without the catheter, and there are no retention problems. The Sister, who was nice, said about Mum’s discharge plans, which were basically that I would move in with Mum for 6 weeks, that it was good to give her a chance of living in her own home.
I’ve just asked Mum about the staff. She said the nurses were very good, but how the physios got away with doing £@*k all, she didn’t know. They had a gym full of stuff that they didn’t use. And it was only because I looked out for her that she got the pedals, and mobilised herself out of there. Her opposite neighbour is still in there, desperate to leave.

INCONTINENCE (3). The Biscuits.

The dog, who is so far reprieved, owing to apathy, and not to any great improvement in behaviour or continence, was standing square at ninety degrees to Mum’s head, in silence, as if he was staking her out.

I thanked the neighbour and said I would get mum up off the floor.
“Aw,”, she said, “do you know, the dog was just standing looking at your mum the whole time I was here. He’s so sweet!”

“Sweet!?!”, I interobanged, with my eyebrows.

She smiled at me and left. She is sweet.
I shut the door, went to the kitchen and picked mum up. She is pretty hefty, as one of the side effects of the drugs is weight gain. This is also a side effect of an Irish childhood, which engendered a love of potatoes and cake. Still, all that Pilates training hasn’t been for nothing, and I have been picking her up off the floor quite regularly since dad had been unable to do it, for about eighteen months now.
She was fine, but this will set her back again with pain and mobility.
“That dog’s very good you know,”, Mum said, as I handed her a cup of tea.  “He sticks to me like shit to a blanket.”
“He knows what side his blanket is buttered.”, I said.
“Hmmmph.”, she said.

I know that she knows that I know that his existence and her independence are co-dependent.

I was in a meeting on carers’ rights when I got the phone call telling me about the fall. Just before the meeting started I had been talking to an elderly gentleman whom I had noticed struggle out of his car earlier. He walked with a stick. He had been telling me how he cared for his wife, who was prone to falls, and had fallen last night, and also for his son, who can’t work any more because he has a condition where the cells walls of his vascular system break down, and are not strong enough to contain his blood, so that the vessels that he should be able to rely upon to transport his blood; veins and arteries, venioles and arterioles and capillaries,  all leak.  He seeps blood.
My new friend, the elderly gentleman, who someone really should be looking after, said, “You can just imagine the laundry bills.”. He was telling me how his son’s heating had broken down, and the chap who came to fix it, and had driven all the way up from Portsmouth, turned out to have been a college friend of this unfortunate son, who had been a talented draughtsman, designing air conditioning systems for flagship hospitals and airports. Apparently there are few of his calibre, and he is in high demand, but cannot work, ever again with pipes and tubes and drains as his own interior pipes and tubes and drains leak.

I didn’t get to hear any more because the meeting started and then I got the call from Age Uk. If mum has a fall, she presses a button on a pendant she wears around her neck, and I get a call. If I don’t answer, the organisation works down a list of my sons, the neighbour and finally my sister. By the time I got to mum’s, which was fifteen minutes after I got the call, two of my sons were texting me, and the neighbour was round, making her comfortable with a pillow.

So I have no idea if carers have any rights.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Later that day the dog started barking at the hall table. I thought he was barking at a picture of my brother in law, who hates him, but it turns out that he had noticed a dog biscuit that I had left behind the picture inadvertently, following an attempt to train him to lie down on his mat using treats the previous day. He wasn’t having that biscuit after the repercussions of my training. I put it in my pocket, and sat on it later.

The following happens nearly every day.

Kerry gets one dental stick a day, but he wants more, and he bullies my mum by barking at her intently, one eye trained on Mum and the other on the drawer where they are kept. Mum calls them ‘chewies’.
He is barking. He is shouting “CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE……..”
I don’t want the dog bullying my mum. She has it hard enough as it is. I want the dog to leave her alone and lie down.
“Lie on your MAT!”.
(The cleverest dog can understand a couple of hundred or more words. This is not the cleverest dog. I keep it simple. I know he knows what I want him to do.).
He looks at me without moving his head and without stopping the flow of his barking. That glance is a moment of pure and concise communication between us, between human and dog. We both know where this is heading. What follows, me trying to instruct him, and him ignoring me, is simultaneously a superfluous, perverse and inevitable ritual.
“Lie on your MAT!”.
“CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE……..”
“LIE ON YOUR MAT!”.
“CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE……..”
“LIE on your Goddam MAT!”. I make a move and he walks around the coffee table, past his mat, and barks at mum from the other side of her chair.
“CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE……..”
“Lie on your MAT!”.
I now grab his collar, and drag him over to his mat. His mat is more a soft and rather luxurious large cushion, but to keep it simple for this stupid dog I call it a “MAT”.
“CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE……..”
“LIE DOWN”. He won’t lie down, but he has stopped barking. He looks at me defiantly, “DOWN.” I push down on his haunches so that he has to sit. He is looking straight at me. The last thing he is going to do is anything I want him to do. He knows I want him prostrate, but he won’t lie down. He is the three year old recalcitrant toddler in the middle of a supermarket yelling “I WANT SWEETIES”. He is the thirteen year old who has been told to go to his room. “MAKE ME!” So I make him. I now have my hands firmly on both his rump and shoulders and I push him down.
“Now STAY you BASTARD.”
He looks at me and waits precisely until my back is turned and gets up and attempts to regain his previous position and bark at mum again.
We repeat until Mum gets up to go to the loo. He won’t give in, but when mum is out of her chair, he forgets what he wanted and peace reigns again for a while.

The day before this was one of the days things were fairly relaxed, I was not too hard pressed and I gave in to my optimistic side. I waited until Kerry was fairly settled, and I trained him with treats and kindness. I knew very well that all foods other than the dried food ‘for senior dogs with skin problems and sensitive stomachs’ upset his sensitive stomach. The skin problems are past even this prophylaxis, but I thought the odd dog biscuit wouldn’t do any harm to his sensitive stomach. I had stopped issuing them daily because of the diarrhoea. But just three or four …….surely……..
Well that training session was a great success. Four sequences of “lie on your mat”, dragging him across the room, forcing him down, repeating the command, and rewarding him with half a biscuit, proved effective enough to get him to obey the instruction. On the third time he could take himself to his mat and lie down. Hurrah! I made myself believe that it would have a lasting effect.
The day moved on. I took him out for his walk.

At the end of the block he squatted and diarrhoea issued. I sighed. Three dog biscuits had brought us to this. I had one tatty plastic bag with me. I turned it inside out and grabbed the squit. Fortunately it’s autumn and I was able to wipe the grass over with leaves, which I then picked up. There are two schools in the area and he copiously decorated the grass verges outside both. I did my best. Sorry, girls.
The next day we reverted back to our previous pattern.
“CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE CHEWIE……..”
“Lie on your MAT! Damn your eyes!”.

 

 

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.