A meeting, a toilet, a wedding, a kebab. Outlook – unsettled.

“I fancy the kebab.”, said Mum.

“I think you might find it a bit difficult to chew. “, I said. “Have the lamb casserole and I’ll have the kebab.”

We were at Pembroke Lodge in Richmond Park, just a few minutes drive from Mum’s home. Mum is a bit stronger again and although she cannot walk she can transfer in and out of the car, and  I have been able to take her out.

That morning we’d had a long meeting with the social worker and the Care company. We’ve had a very good carer with considerable character for some weeks now and Mum is well looked after if somewhat put out that she needs looking after. There have been fewer hospital admissions, and although Mum is still affected by her imaginary visitor, she is generally a lot more settled, and the psychosis is at a lower level. There is more than a little change in the offing and it may be the end of this settled period. Our carer needs a break. In addition the lady that comes in to give her a daily break and has been with Mum for more than a year now works for a firm which is being dropped by our council. There is a lot to consider, so instead of considering it, I take Mum to the park.

There is a wedding on; uncomfortable looking men, some in kilts, some in suits with striped waistcoats and purple cravats, who look, with good reason, as if this is not their first choice of clothing on a weekday morning. They stare – maybe they glare?  at the kilted groom, who has a knife down his sock; and there are goose pimpled girls in their shifts and fascinators, which are bits of dyed, stiffened net curtain, pinned to their dyed stiffened hair. They are drinking champagne just outside the window where we position ourselves in order to get a good view of them as they get drunk as quickly as they can while Mum eats her dinner as  quickly as she can. Mum always eats her dinner quickly, a trait she shares with her fourteen siblings, or the nine now remaining.  Food was at a premium in a large family in rural Ireland in the thirties and forties. Mum has an excellent appetite, and just lately she’s a pretty messy eater.

The wedding party are having their photos done. People who, it seems, have never got on  or perhaps have never met before, are ordered by a turbaned photographer to link arms, and affect  a crazy bonhomie.

I am having trouble. For one thing, I can’t see the bride and for another, the kebab is biting back. I’ve got six chunks of marinaded meat on two wooden skewers on a bed of extra large couscous and some garden peas.  I got the garden peas because I refused a third skewer. Who needs that much meat? Certainly not the clientele of Pembroke Lodge, mainly over 80 or very slender yummy mummies.   The meat is stuck to the skewers. I can’t get the meat off with a fork. I can’t get the meat off with my fingers. I have to bite the meat off. As I do this I realise I am eye to eye with one of the wedding guests. He’s fascinated. He’s not wearing a kilt; he’s one of those in a purple cravat,  and wing collars and a striped purple, white and black waistcoat, and he is staring at my attempt to separate this lump of meat from a glorified matchstick. I realise that having bitten the meat off, I have bitten the end of the stick off with it, and have to detach the two component parts from each other in my mouth and then spit out the wood. I think he is disgusted by this as he turns his attention to Mum who is eating as if she has a lot of competition for that lamb casserole. A lady in a green kaftan nudges him. What is he doing, looking at the voyeurs?  He throws me an apologetic glance which I catch, and return, and he turns his back on us. Maybe he can see the bride now.

He has given up on us and I give up on the meat.

I take mum for a tour of the gardens, and they are a bit special. Enormous flowerbeds with fantastical flowers give way to dramatic views to the West which are succeeded by a  glorious rose garden in full bloom.  We potter about for half an hour or so. Then I think she might have had enough.

“Have you had enough Mum?’

“No.”

It’s been quite sunny so I push her back past the flower gardens to a wooded area with squirrels and jackdaws. The daws are very bold in Pembroke Lodge; head’s cocked, their one light blue biro eye bores into your soul for where you keep your crumbs. They will pick your sandwich off your plate if you eat outside. They have no manners.

“Sit down on the bench, we’ll stay here.”, Mum said. “You must be tired.”, and she promptly fell asleep for about half an hour.

I drew her, the gardens, the jack-daw, on bits of paper and then wrote a complaint to the person who designs disabled loos, on account of having had a disaster earlier in the disabled loo on the entrance to Pembroke Lodge. New Disabled Toilets are now called Accessible Toilets, and that’s a better name because they are generally accessible, at least. You can almost always (but not always), get into a disabled toilet in a wheelchair, but because you haven’t much use of your limbs they are a challenge. This is because although they are furnished with handles, the handles are not generally in a position to help you to turn around so that you can sit on the loo seat. You are up off your wheelchair, bent over because you are holding on to the low handles, pretty committed at this stage to using a toilet, and you are stuck. So you pull yourself around using the sink. And you have to pull your trousers and pants down, which requires two hands and balance which you have not got, not bent over at thirty degrees.  It’s all very fraught, and I help Mum a lot in this situation. And then the reverse too. God knows how disabled people do this with no, or inexperienced help. The flush is on the wrong side, the tap is on the wrong side. Disabled Toilets or Accessible Toilets are the anti-convenience of the convenience world.

Then Mum woke up, I pushed her out of the Gardens to the information desk, where the assistant carefully read my complaint, and said she would take it to the office. I think I want to take it to the attention of all the designers of disabled loos. This is what you do to people whose lives are pretty shit anyway.

When we get back home, I am called in three times from the greenhouse where I am fighting a battle with the side shoots that spring out of the forest of tomato plants. It’s the care agency. The replacement can not make next week. The only replacement they have for our now very tired and  overwrought carer who I occasionally have to cajole to stay is one of the many who Mum fell out with and who swore never to come again. Is that Ok? It’s our only option, so yes. Hopefully she has built up some emotional and physical reserves of strength in the five weeks since she was last with Mum.

Then again. Can I cover Tuesday morning as this carer has an appointment. Yes no problem; Mum has an appointment too, and I was going to take her.

And finally. That carer says it’s too far for her to make that appointment from Mum’s house. Would it be ok if someone new comes in for two days, then the replacement who swore she wasn’t coming back will cover till the following Monday, when someone new will arrive for the week……Hey ho, here we go. Outlook – unsettled.

 

 

Childhood trauma leads to lifelong chronic illness — so why isn’t the medical community helping patients?

This piece is important and it resonates with me, but not because of health issues. Behavioural problems also stem from traumatic childhoods, and the fright/flight/freeze response precludes reflective processes. You can’t just ‘park’ your hurt and speed away from your own family problems without collateral damage to those left behind. What is left goes on.

ACEs Too High

ADonnaDadWhen I was twelve, I was coming home from swimming at my neighbor’s dock when I saw an ambulance’s flashing lights in our driveway. I still remember the asphalt burning my feet as I stood, paralyzed, and watched the paramedics take away my father. It was as if I knew those flashing lights were a harbinger that my childhood was over.

At the hospital, a surgeon performed “minor” elective bowel surgery on my young dad. The surgeon made an error, and instead of my father coming home to the “welcome home” banners we’d painted, he died.

The medical care system failed my father miserably. Then the medical care system began to fail me.

At fourteen, I started fainting. The doctors implied I was trying to garner attention. In college I began having full seizures. I kept them to myself, fearful of seeming a modern Camille. I’d awaken on the floor drenched…

View original post 958 more words

Overall, it’s quite possible that your Mothering Sunday is not quite perfect.

26th March 2017 and it’s Mothering Sunday.

Just by way of statistics, 1 in 5 women in the UK are not mothers by the time they are 45.

1 in 4 people in their lives will suffer mental illness. There is no gender difference here. It might be the your mother is psychotic, or she might have dementia , or she might have a narcissistic  personality disorder.

I don’t know what the percentage is of  people whose mothers are absent because they are dead/ rejected their roles at birth/rejected their roles later on.

You might have considerable caring responsibilities for your parent and  a sibling who is not pulling their considerable weight.

Overall, it’s quite possible that your Mothering Sunday is not quite perfect. Mine neither.

I’m lucky I have my boys. Blessings counted. 1,2,3.

 

 

 

No Good Deed Goes Unpunished, or “Where’s Home?”

I was in Casualty at Kingston Hospital last Thursday with one of my sons, who had a condition in his lower limbs which was both painful and mysterious. We thought it might be sinister, maybe a blood clot, and the doctor gave him a letter and told him to go to A&E. It was 6pm on a Thursday night and the waiting room in the front had only about a dozen people in it.

One of the Triage nurses is a friend’s daughter, a dusky rose, and she greeted us, and said that although it looked pretty empty, they had been very short staffed and behind the scenes it was heaving. Prepare for a wait, and Goodnight, her shift was done.

We both had books. He had Dostoevsky’s The Idiot. I had the latest Granta. Although we were worried about him, we were at least in the hospital. It was warm. The chairs are pretty comfortable. The reading was good.

And then it started to fill up. A builder arrived at about 6.30 and sat opposite us. He’d been told it would be a long wait. How long had we been waiting?

About half an hour, we said. What had he done?

“It was this morning, I was up a roof and drilled a bit out of my finger.” He held up his left index finger with a none too clean tissue wrapped around it.

He unwrapped it and a bloody bit of meat was exposed, dirty, with a bit of transparent flesh flapping off it.

“It’ll need stitches.”, he said. “I’ve got a scar on my forehead which healed with a ridge because I didn’t get it stitched. Look. Thought I was hard, see! Huh! If this heals with a ridge, it will interfere with how I work. I need my hands.”.

“Why didn’t you go this morning?” I asked.

“I work for myself. I had to finish the job. Get the day done and the money in. It was a cash job. I’m owed so much money on invoiced jobs at the moment that I can’t make ends meet.”.

“Oh dear.”.

“So I just wrapped it in tissue and carried on best I could.”.

A woman in a hijab emerged from behind the scenes. She was talking on a mobile and had a folder of notes under her arm, and was headed straight for the exit to the car park. Another woman followed. “Come back! We need those notes. You must come back in. Come!”. I wasn’t sure if the would-be escapee was a patient or a Doctor.

Now nearly all the seats were full and it was getting noisy. Sick babes were moved on in pretty quickly. There were some very ashen faces, people with arms in home made slings, people limping about, all accompanied by one or two friends or relatives. About a fifth of the sick people were recognisably not English and they had even more supporters with them.

Three blokes came in, builders, young men. The one in the middle was in shock, covered in brick dust, and his head was decorated in pink stuff that had been blobbed out of a sort of syringe, like a mastic gun. His eyelids and eyebrows were blobbed in pink. He had to be helped round, presumably he couldn’t see. It was 8pm by now.

We noticed an elderly bearded man on the other side of the room. He had an old tweed overcoat on, and a pair of track-suit bottoms and boots. There was a thick gold chain around his neck. That was all. His overcoat was open to his bare chest. He looked miserable. He got up and went over to the desk. “I want to know about patient transport. I’ve been waiting hours now. When will it be?”

“I don’t know.”, said the man at the desk. “We will let you know.”. The old man plonked himself down again.

And I didn’t see this, we were at the back of the room, but I heard about it from a woman called Joan, who I met the following day, and who was admitted from Casualty into the Acute Assessment Unit (along with my mother who was delivered by ambulance half an hour after I took my son home – it was a long night for me), because her stomach had swollen up like a nine month pregnancy on account of a kidney dysfunction caused by acute constipation, and who recognised me from the night before. An elderly couple were sitting in front of the reception desk. He looked just awful. Then he fitted and his head lolled to the side. His wife screamed. Joan shouted to the receptionist, who said, “Yes, we know about him.”. Joan said “But I think he’s dead! Look at him!” Nothing happened. No Doctors came out. Joan shook his shoulder and he came back to life.

That happened a couple of times before he was admitted.

The old man with the gold chain and nothing but hairs to keep his chest warm approached the desk again. “But when will it be? You don’t understand. I’ve been here all day. I need to get home.” Every “e” was elongated, pleading.

“How long is a piece of string?”, said the receptionist.

“I don’t know? Please tell me? How long is this piece of string?”

“Look we’ve got one ambulance for patient transport. And a whole list of people who need it.”

“But how long? Please give me some idea.”

“Two hours. At least.”.

“Two hours!”. He walked back to his seat and cried.

My son and I looked at each other. Poor man. This was very hard on him. We decided to pay his fare home. It wouldn’t be much more than a fiver. I looked in my purse. I had twenty quid and some shrapnel.

I went over and sat down next to him. He smelt mildly of booze, like a pub at eleven in the morning.

“Hallo” I said, “I’m sorry you are having trouble. Have you thought about getting a cab?”

He looked at me with big soppy blue eyes, and emptied his pockets. “I haven’t got any money.”.

“Don’t worry, I’ve got some.”, I said. “Would you mind if I paid for it?”

“That’s really kind of you, but I don’t want to be a charity case.”, he said, grabbing my hand. He didn’t smell that bad really.

“Well it sounds like it’s going to be a long wait.” I said. “Are you going to be ok?”

“Not really. I’ve been here all day. It’s been a long day.”

He sighed.

“How are you feeling at the moment. I mean can I get you a drink of water? Would that help?”

“No, no thank you. I’ve been drinking water all day. I could do with something stronger if you know what I mean!”

I knew what he meant.

“Please let me get you a cab. Look, there’s a free phone over there for the cab-service.”

“Are you sure? Well if you’re sure, that would be so very good of you.”

I was on my feet and moving towards the phone. “Where’s home?”, I asked. “XXX Sunbury Road, Walton.” he said.

Walton! What the bloody hell was he doing in Kingston A&E!!

It was absolutely too late to back out now, in the middle of the waiting room, between the old man I’d offered to help and the phone.

I explained the situation to the cab firm. “Well it will be £22.50.”, she said. “Has he wet himself?”.

I don’t know why she asked this. It was as if she could see him more clearly than I could.

“No, he just smells a bit of alcohol. But he’s been in hospital all day. It’s stale, quite mild really. But hang on a sec, let me check I’ve got money.”

I had £23.37 in my purse.

“Go ahead.”

“Ok, so the driver will be there in about ten minutes.”.

I went and sat down next to him again. He was very grateful. And so he should be. “You’re so kind.”, he said. “I’ve been here all day. It’s been so awful.”

“Why did you come here?”, I asked, “Don’t you have a more local hospital?”

Walton is so far away in this tight urban landscape, about a fifteen to twenty minute run, and it’s behind the back of beyond and then some, and I haven’t a clue what the hospital situation is like there.

“Yes, I’ve been to St. Peter’s several times, but they were no good. I thought Kingston might be better. But they were no good either!”

“What’s the matter?”

“I’m just so worried. I’m worried all the time. My Landlord wants to sell the bungalow and evict me. It’s so stressful. I feel very unwell.”.

“Oh! That’s awful.”

“Yes but the doctors and nurses just won’t listen. The problem is that none of the staff are English. They are all Johnny Foreigners. England’s not like it used to be. I can’t understand them and they can’t understand me.”

Ah.

In the background I can hear someone say. “If it wasn’t for foreigners, there wouldn’t be an NHS.”, which were my thoughts,  projected.

“Not one, not one of them was English. They just don’t understand. They come over here, taking our jobs. England should be for English people. Like you and me!”

I didn’t tell him I was half immigrant Irish, and married to an immigrant who was a hard working leading scientist, and I wasn’t clever or hard working enough to be a Doctor, and what’s more I suspected that neither was he.

“Are you a Doctor then?”

“No, I was an engineer. Why don’t they just go home to where they came from?”

“Well a lot of them were born here.”

Like my boys. They are a quarter English, and a quarter Irish, a quarter Italian, a quarter Kosovan. Where should they “Go home to?”. I didn’t voice this. They’ve got this foreign name. It was something my son and I had just been talking about. Was that going to be a problem for them in this new Brexit world.

“They can go where they like but they should leave this country to the English! Make it great again!”.

Oh dear god. What to say here? I learnt a little from Brexit. Picking arguments with selfish stupid old Xenophobes like you, self obsessed distant relation, who wanted an end to immigration and thought that leaving Europe would put a stop to, not the Europeans, because you had nothing against the Europeans, it was those Pakistanis you wanted out, or you graceless local politicker, who wanted more control of our legislation, which was fair point though, but we could stay in and change it, and you, my mum’s gardener, who voted to leave just for a laugh, to see what Boris could do, because, you know, he’s so ridiculous, and that’s one in the eye for Cameron, does not make me happy and did not change their viewpoint. I mean, nobody liked Cameron. But don’t give us Nuttall and the UKIPS and a right tight little England in his place. Don’t give us stupidity and lies. Don’t, for Christ’s sake, give us America.

At that moment the cab driver arrived. He was Asian.

“See? They are taking all our jobs.”

“Oh, do you know, cab-driving is definitely not for me. Or you.”

“No, I suppose not.”

As we said good-bye, he said, “You will come and see me, won’t you! You’ve been so kind to me. Will you phone me! I will pay you back.”

I said “Of course.”

“But how can you, you haven’t got my phone number!”

“It doesn’t matter. Just be kind to someone else. That will be good! Good-bye, and good luck!”

And I kissed him on his fluffy bearded cheek, because he was a poor old sod.

I went back to my son. “This is like a zoo, Mum. I wish we could go home.”, he said.

Yes, but where to?

Anyway, that passed the time.

My son gets called into Minors at about 9.15pm. Minors consists of a series of half a dozen cubicles big enough for a chair, a small waiting area, and a desk area. The nurse, a skinny lad, possibly Vietnamese, with an interesting top-knot held together by a kirby grip and an elastic band, shows us into cubicle 3, and points out our doctor, a West African woman whose hair is styled with what looks like lard, but can’t possibly be. She immediately comes over and tells us to vacate that cubicle and disappears into cubicle 4, emerges, and then disappears completely. After a few minutes, nobody else comes to cubicle 3, and we discuss occupying it again. The Doctor comes by again, brandishing notes and calling my son’s name.

Where have we been? She asks.

Here, we say.

But I’ve been calling you, she says, why didn’t you answer?

But we’ve been here. The nurse put us into cubicle 3, and you told us to get out of it.

But I went into the main waiting room to get you. ……

But the nurse called us, we saw you, and you told us to get out of the cubicle…….

Our faith in the Doctor was wasting away.

But as it happens, she was very good. Tests were done, and although she could not say what was wrong, she could say, with confidence, that there was no blood clot, no kidney problems. Go home and if it persists, go back to the GP, was the advice. And he’s now better. It was a thing, but not a persistent thing, and hopefully it won’t come back.

In the middle of all this my mobile rings. It’s Dinka, Mum’s Bulgarian carer. Mum’s not well. What should she do?

It was going to be a long night.

Electric blanket

Mum likes her electric blanket on to preheat her bed.  I had to write this to the care agency today. I had just got a reply to my week old email asking if the carers are trained to recognise stroke symptoms, which they missed in Mum a few weeks ago precipitating an emergency. I was assured that the carers had basic training in this, and it would be revised in the case of these particular carers. 

I will just take the electric blanket off the bed. She’s not been feeling very well lately and I wonder if that’s a contributory factor. She probably dehydrates more than she should at night with thethe extra heat. 

Dear xxxx

Thanks for the reassurance about the extra training regarding stroke.  It should be sufficient. 

Another matter, and maybe it should have been written into your care plan, but I don’t think that this is in the new folder at the moment; I wrote a note to the carers on Saturday asking that mum’s electric blanket be turned off by them on the evening call, after it had been left on all night. 

The next night the same thing happened and I highlighted that line on my note. The note is placed, by the way, on top of the page in the care book that they write in. They have to move it in order to get to the page. 

Last night, mum fell. I was called around in the wee small early hours of the morning. She fell because her non-slip Mat which she has by the side of her bed was not in place. I had removed it in the day and washed it. It was in full view, drying in the shower which is in the same room. If they had looked for it they would have found it within seconds. Anyway, I got mum up and she was ok

The electric blanket was on full. 

I’ve asked xxxxxxxx not to turn it on anymore, so it won’t be an issue, BUT are your carers aware that people with diabetes are potentially less sensitive to feeling heat than the rest of the population? 

They do a really important job, helping people to stay in their own homes, these women, and it is appreciated, very much, when they do a good job. But it is a very responsible job. Mum feels they are always in a hurry. The time they are supposed to be there for is half an hour, to put her to bed, I think? Actually they were in and out in twenty minutes last night. Which would have been fine if they had left mum safe for the night. But they didn’t. 

Kind regards,

Etc