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


All Calls Are Being Diverted To Us.

3pm Friday September 30th 2016.

RING RING RING RING

Vapid young female South London voice. Hello?

Me: Is that Social Services?

VYFSLV……..All calls are being diverted to us.

Me: And you aren’t Social Services switchboard then?

VYFSLV: No.

Me: Who are you?

VYFSLV: We are in another building. All calls are being diverted to us. Really sorry.

Me: Well could you put me through to Katie Xxxxx. She’s my mum’s social worker and it’s really important.

VYFSLV: I can try.

Me: Well yes please, try.

RING RING RING RING

VYFSLV: Hello?

Me: Is that you again? You were putting me through to social services!

VYFSLV: All calls are being diverted to us. Really sorry. We are in a different building.

Me: A different building? And you can’t connect me to social services? What are you? Some sort of dead end?

VYFSLV: I’m really sorry but all calls are being diverted to us.

Me: Could you try someone else? Try Rxxx.

VYFSLV: Well I’ll try.

RING RING RING RING

VYFSLV: Hello?

Me: You again.

VYFSLV: I’m so sorry. Really frustrating isn’t it. It’s been like this all day. All calls are being diverted to us and we are in a different building. Really sorry.

I was calling from the acute care ward at St George’s Hospital London SW17: Mum had been blue-lighted there after a suspected stroke. (We are finding out that she may have had a mini-stroke, but her acute collapse is as a result of an infection, probably urinary,  which had penetrated her blood cells.) I particularly want to talk to Social Services, as this emergency is partly the result of the inactions of the carers employed by their agency. I don’t know what to do about Mum’s care.

But all calls to Social Services in my now Kafka-esque world are being diverted to a tired young woman in a different building, including the calls she makes herself.

I can see now, on the CCTV recordings of the two calls that the carers made to Mum, that she had been very unwell that morning. She was too ill to get out of bed at 6-7, and she refused her breakfast, both very unusual. They washed her and left her and turned the lights out. She had actually asked to go to hospital. On their return at 10.00 am she was still very unwell, could not get up, and they fed her her porridge in bed. I was unaware of all this but I phoned at 10.30 to ask if she was alright before I went out with a friend for the day. I was told no, she couldn’t move her left arm and could not get out of bed.

I went round, the carers were gone and all signs were positive for a stroke – tongue tracking to the right, lop sided smile, not able to lift left arm, confused and dozy. So I called 999, the paramedics arrived and wanted to know when this happened……..well it was before 6, which meant that the crucial 4 hour window for stroke treatment had overrun.

Social Services came in in April this year when I stepped down from my role as Mum’s carer, exhausted and overwhelmed. I found myself overseeing the motley crew of carers from a private care agency and their various disastrous interventions some of which I’ve blogged about before. The low point was when mum was thrown on the bed, her arm in plaster, by a carer who was frustrated at the lack of equipment supplied to help her. This went to the police, as my son had seen it on CCTV and Mum had complained to her support worker the next day. The matter was eventually dropped after weeks of police intervention. Other carers have just been rude or stupid and I have complained endlessly, changes are made, hope is created, and then one way or another, shit happens again.

For instance, on September 6th. Mum has just returned home after staying in a respite home, organised by Social Services – in some ways they are really very good to us, and credit where its due – so I could get a break.

The night call.

Video 1

Two carers. Mum in the front room in her arm chair.

Carer 2 does not say hallo but stays in the hall.

Carer 1 sashays across to turn the telly off

Carer 1 How you like your stay in the home?

Mum, animated and friendly It was quite nice actually. They were very good to me there.

Carer 1 now on her way back towards Mum.

Carer 1 How you going to like living there?

Mum shocked. I don’t want to live there. I want to stay here in my home.

Video 2

Mum is hovering above her seat, but can’t get up. The two carers stand looking at her.

Mum Well help me won’t you? You can see I need some help.

Carer 2 Oh, you want us to help you.

Carer 1 If you want us to help you, you must tell us.

Video 3

This is sound only. Mum’s arm is broken and in plaster. I think Carer 2 is helping her out of her clothes.

Mum You are hurting my arm. Please be careful.

Video 4

Carer 1 and Carer 2 stand watching as mum tries to get into bed

Mum Give me a hand will you? You know I need some help getting into bed.

Carer 2 gives her a shove and Mum falls on the bed. She’s not hurt but she’s really cross.

Mum Oh! You’re just fucking horrible you are. What’s the matter with you!

Video 5

Carer 1 and Carer 2 leave and put the light out

Carer 1 I don’t know what was wrong with her tonight.

And they leave without saying good-bye.

After I complained and sent the videos up to the agency, these two women have become model carers, polite, and helpful. I think they were particularly rude to Mum at that time because the police were pursuing their colleague on her behalf, but who knows. It’s a tough job, underpaid, and fairly easy to get. They don’t get paid for their travel time. Generally they do as little as possible in as short a time as possible. I’m sure that’s not true for everybody. But it is for most of the people mum has had “caring” for her.

And now, after this particular crisis last Friday, I can’t even phone Social Service’s switchboard. So I try Rxxx’s email address which I had taken down by hand at a meeting a few days before. After about half an hour, and no reply, I think I have noted down the wrong address – it’s quite a complicated one, and so, battling with intermittent 4G, only accessible at the end bay of the Acute Ward, which is fortunately empty, I google her and send an email to the address listed on the official Trust web-site which differed by one letter from the one I had noted, and got this in return:

postmaster@swlstg-tr.nhs.uk

Undeliverable!

Delivery has failed to these recipients or groups:

Rxxx Social Services (her email address with one letter wrong).

4G has now disappeared and I have to leave Mum to go outside. It’s now 4.55 and I try the number I have for Occupational Therapy: Mum’s OT is nice, sensible, and surely, I think, will be able to put me through to a Social Worker. But she doesn’t answer the phone, and I speak to a very cross woman who clearly thinks I am stupid.

I try email again, adjusting that one letter from the official entry on the web-site to the one I had scribbled down, and get through to Rxxx after the end of the working day, only because she happens to be working late. She replies and phones immediately.

As of now Mum is still in St Georges, her acute care was phenomenally good, but she has suffered from some very indifferent care on the ward there too. Some amazing nurses and some who really couldn’t give a shit. But at least I can complain to the right people.

Mum might be going home today……………………I have to talk to Social Services this morning.

“Excellence in specialist and community healthcare” aka “Just sit tight in your home because it will be months before we give you an appointment for an assessment for a wheelchair.”. 


About a month ago I asked Mum’s Occupational Therapist for a new collapsible wheelchair: her own was on the point of permanent collapse. I was worried the dodgy brakes might fail or one of the wheels fall off its axel. While we were waiting, two weeks ago, I had to take Mum to A&E for a broken wrist. A nurse observed that it was the worst wheelchair she had ever seen. So I mentioned it to the OT again.  This morning Mum got this letter. Apparently there’s a bit of a wait. They can’t even afford capital letters or a full stop for their slogan, so there’s not much hope for any actual “Excellence”. 

Thanks again, David Cameron, and your now historic insidious management of our NHS. I shall of course have to pay for a privately funded one. Or try to blag one on Facebook. 

Cheers. 

My Life Going Down The Pans. Part 5.

The final part of my attempt to explain why I am in no fit state to complain to Victorian plumbing about their non-flushable toilets, of which we have two. 

Wednesday 10 am. “Did they ever send me an appointment for my cataract operation?”

“No mum. I’ve phoned them 3 times now for a follow-up appointment after your first one, and they’ve all assured me that you would get something through the post.”

“Well phone them again.”

I phone the Royal Eye Unit. Again. After giving mum’s details, and explaining that this is the fourth time I have called, I say this.

“I am not getting off the phone until I speak to someone who will give me an appointment.”.

Amazingly, this works. It’s a technique advised by Teresa, who has had years of dealing with short-staffed and occasionally lazy and careless NHS administrators. We have an appointment for the following Monday morning. YES!

1pm. Mum’s mental health care nurse phones for an update. The phone call lasts for about 40 minutes we cover the mishaps.

7.30pm Mum calls. She’s in a bit of a state in the loo. I go round. I help clean her up and then get on with cleaning the loo, which in one way looks like a plasterer’s radio, but in other ways, doesn’t. The evening carer arrives at 8.30. I say it’s far too early for Mum. She says she has lots of other calls, it’s difficult to get them all to bed at the time they want. She is a nice girl, really and I feel a bit sorry for her. It is a struggle with Mum this evening as she is very tired and it’s difficult to get someone who is 79kg and hasn’t much use of her limbs into bed. Normally she gets herself into bed. We don’t know it but this is the beginning of a Urinary Tract Infection which will lay Mum low for a while. The evening carer says she really needs a device called a Sarah Steady, which would make the process of transferring Mum from sitting to bed easier for her. I promise I will ask the Occupational Therapy for one.

All these phone calls are in addition to running Mum’s house and garden, let alone my own life and work, and are mostly as a result of professional people not doing their job properly. I am pushing against a tide of negativity and can’t be bothered, what’s it got to do with me-ness, and that’s not even including my close family member who just visits on a three weekly basis and brings a shepherds pie.

Which is why, when Teresa asks me why I don’t phone up Victorian Plumbing myself to complain about their bloody toilet, I say, I just can’t face it.

In the end the job is done, with a tiny sink, and a flushable loo with an independent cistern, and now just needs decorating. Mum has already christened it, and pronounced it good. IMG_2086

But we are left with two non-flushable toilets and a cistern and a ball-cock, which in a better week, I decorate with flowers and herbs before my husband takes them to the dump.

IMG_2006

And thanks to the power of targeted advertising, I frequently see this.

Screen Shot 2016-07-21 at 19.32.40

Thanks, Google.

Life Going Down the Pans. Part 4. Mum gets locked in the car – The Podiatrist.

In which I try to show another day’s worth of why I don’t have the energy to complain to Victorian Plumbing about their non-flushable toilet pans.

Tuesday Morning . I think the Prochloperazine situation is sorted now, after another conversation the following morning with a Doctor, a new Doctor, and actually a very nice Doctor. Can’t wait to see what happens with the August prescription.

10.15. I arrive at Mum’s. She has an appointment with the podiatrist at Surbiton Hospital at 11.00. It’s a fifteen minute drive at the outside, but we need to start to leave 45 minutes before the appointment as it’s difficult for Mum to leave the house, and get in and out of the car.

“Have you been to the loo?”

“No.”

I notice she is struggling to walk with her frame, and as we are in a hurry, I take her to the loo in her wheelchair.

10.25. At the back door. I’ve taken her so far by wheel chair, but now she will have to get up and step down two steps, using the rail that Occupational Therapy have put in. She just manages the steps and I get the wheelchair in behind her again and wheel her to the car.

10.30. It’s very difficult for her to lift her leg into the car. I have to remove the wheelchair, and support her weight with my body behind her, as she transfers. I throw the keys over into the driver’s seat so that I have my hands free. It takes a good five minutes.

10.35. When she’s in, I shut the door. The car alarm goes off immediately. She’s locked in the car somehow and the alarm is horribly loud. PAAAAAARPPPPPP

She looks at me. She can’t hear anything.

“MUM! THE KEYS ARE IN THE DRIVERS SEAT!”

PAAAAARRRRP

“What?”

“THE KEYS ARE IN THE DRIVERS SEAT!”

“?”

“THE KEYS!!!!LOOOK!!!!” I circle the car, and point, madly, at the keys.

PAAARRRRRPPP!!!!!!!!!!!

She struggles to lean over, and picks them up and drops them. She looks at me, smiling. She’s a bit deaf and the alarm probably isn’t bothering her the way it’s bothering me.

PAAAARRRRPPPP

She persists and this time picks them up and looks at them.

“MUM!”

IMG_2085She’s still looking at them. It’s a big bunch of keys by any standard. I often look at them and wonder what half the keys are for, but the other half are for the car, my house, her house, the house in France, two possible keys that don’t work for the postbox to the house in France (I get the letters out with a bent wire coat hanger), bike padlock key, Waitrose card fob,  and most bulkily and uselessly, a mobile control which doesn’t work, to the burglar alarm for her house.

PAAARRRRP

“MUM! PRESS THE BUTTON ON THE CAR KEY!”

She looks at it. Car keys have changed since she she last drove a car.

PAAAAARRRRP.

I mime pressing a button. The next door neighbour comes out with a crying, sick-looking child in her arms.

“Is everything alright?”

PAAARRRRPPPPPPPPPPPPPPPPP

‘I’m really sorry!”

Mum looks at me, waves at the neighbour’s crying child, and drops the keys again.

PAAAARRRRRRRPPPPPP.

She picks them up and presses buttons on the burglar alarm remote.

Eventually she presses a button on the car key. That magic click happens and all is quiet and possible.

11.00 We leave.

11.15. The traffic is heavy, and we arrive at Surbiton hospital car park, already fifteen minutes late for her appointment. All the disabled bays are full.

11.20 We have a similar trepidatious transfer from car seat to wheelchair seat, with me taking Mum’s weight as she swivels around, but finally we are in the lift at Surbiton Hopital. “Life going up.”, says the lift.

11.21 I check in on the screen, and also explain to the receptionist that we are late, and ask if we are too late?

“No, no, you will be fine. Lots of people have been late today because there has been an accident on the A3. Just sit down and wait and you will be called.”

Various clinicians appear and call people in to have their fungal feet fumigated, hard skin filed, corns plastered, bunions caressed. Or whatever it is podiatrists do to bunions. Bunted maybe. Bunions bunted.

Time passes. Listen. Time passes.

11.41 I ask the receptionist if he is sure that we are ok for our appointment. He is very nice and reassuring. Yes, he is sure, don’t worry, it’s because lots of people were late because of the accident and everybody is being seen late.

12.00 I go back to the receptionist. One of the clinicians is standing at his side. “What’s the name? But you are so late! Your appointment was at 11.00! I called you twice, the last time, I am sure it was 11.15. I am really sorry but you have lost your appointment.”

I explain why were late and that we have been waiting for forty minutes on the advice of the idiotic but nice receptionist whose ears I mentally box for not telling the podiatrist that we have been here all that time.

12.05. The podiatrist agrees to see Mum, and in five minutes of deft know how she cures mum’s painful big toe, caused by a corn under the toe-nail, which has been bothering her for YEARS, (I never knew corns under the toe-nail were even a thing. Did you?), and praises Mum’s feet as good feet, which Mum really loves. We all like to think we’ve got good feet.

12.15 “Life going down.”, says The Lift. “She said I’ve got good feet,” said Mum.

3.30 I see Almaz, the carer, at Mum’s after I have done the shopping. She says it would be good if there was a commode on wheels. I phone up the Occupational Health department to ask for one and also for a ramp for the back door.

“Is your Mum in a wheel-chair?”

“Well sometimes. But she uses a frame mostly.”

“We only install ramps for people in wheel-chairs.”

“She will be in a wheel-chair soon enough if she has to get over the thresh-hold with that frame. It’s a real risk. I’m always frightened she’ll fall.”

“Alright, I will put her on the waiting list. 9 weeks.”

“Thank you.”

Well, that was progress……but there was more…..

Life Going Down The Pans. Part 3. The Chemist.

In which I try to explain another reason why I don’t have enough energy to complain to Victorian Plumbing about their non-flushable loo pans.

Monday  July 4th . The Chemist.

11 am. Mum’s pills are dispensed monthly in packages called dosset boxes. There is always some anomaly and I have learnt to take nothing for granted.  I had already popped in on Saturday, to tell them we would run out by Monday morning, but they weren’t ready.  I had made up Mum’s Monday morning pills from spares  that I had at home.

Really sorry, they aren’t quite ready. Come back after lunch?”.

IMG_2002(One of Mum’s dosset boxes is pictured above. I took this photo last Sunday to show the Carer’s Organisation that the girl who came last Saturday did not give Mum her pills. They include a diuretic. And that’s probably why her ankles swelled and she wasn’t able to walk for three days…..but that’s another week…………)

2.05 pm. The Chemist. Sorry! Not quite ready! Just doing them now. We’ll post them through the letter box later!”

The letter box isn’t big enough, and if I’m not there and you knock, Mum might fall over getting to the front door. When will they be ready?”

“Come back after 3pm.”

3.15 pm. The Chemist. I had picked up the pills, and taken them home, given Mum her afternoon tablets, spotted one was missing from the box, twice a day, every day, and brought them back.

“You’ve missed the 10mg amitriptyline dose.”. 

“Oh! Sorry. Give us an hour and I will put them in.”.

4.15 pm The Chemist. This time I look closely at the boxes before I take them away. I see I’ve missed something.

Why is the prochlorperazine in a separate box, and not in the dosset boxes?”

Because the doctor has prescribed them to be taken when needed. I can’t put them in the box without the Doctor’s specific instructions.”

But we discussed this last time and you said you would do it! You put them in the dosset boxes last time.If they are not in the dosset boxes the carers won’t give them to her.”

I’m really sorry. I can’t do it. You can do it at home.”

But I will have to break the seal on the dosset boxes and the pills will fall out.”

Ok, you can do it here and I will reseal it for you.”

4.30 pm The Chemist. In the dispensing area of the chemist, I break the morning and afternoon seal on 28 days worth of pills, insert half a prochlorperazine table, which will keep my Mother’s schizophrenia suppressed, and the chemist reseals the boxes for me.

5pm. My mother’s home. I reflect on how this happened. In April, before Mum was allowed home from hospital, I asked to look at Mum’s medication list. I noticed that the prochlorperazine had been removed. I asked why. I was told by a young doctor that it was an anti-sickness medication, and that as Mum was not feeling sick it was unnecessary. I had to point out to a Hospital Doctor that this medication is a first generation anti-psychotic, and was keeping my mother from madness. It was also an anti-vertigo drug, and was helping her stay upright. It’s widely prescribed as an anti-sickness drug, but that’s not why Mum has it. “Oh!”, she said and looked it up on her computer. She said she would reinstate it, and she did, but as 3x a day or as needed, for sickness. Since then I have had conversations with the chemist and the doctors at the surgery, and I sent a note to the surgery as the conversations with three doctors had no effect. 

IMG_1523

The reply to this note was a letter, saying that the prescription was for sickness.

IMG_2080

In a subsequent conversation with this GP, I had to point out to her that this medication’s original use was as an anti-psychotic, and that although it has these other effects, for which it is widely used, it is still a goddamn anti-psychotic and it works for my Mum, for both vertigo, and most importantly, her bloody psychosis. But without the swearing.

“Oh!” she said, “You want an off-licence prescription! No problem.”.

So far every month since April, there has been a problem with this particular medication not being in the dosset  box, not to mention omitted pills because the chemist just forgot to put them in. How hard is it?

And the week went on….

Life Going Down The Pans. Part 2. Mum’s marooned……

……………..or why I can’t complain to Victorian Plumbing. Saturday 2nd July. My home.

8.30pm “Could you come round and help me. She’s left me in bed without the zimmer frame and no telly. I was watching the football!”

 

8.45pm. Mum’s home. I go round to discover that Mum has been put to bed at 8.10. Her zimmer frame has been left on the other side of the room. as are  her shoes and the remote control for the television. Mum is stranded in her bed at a child’s bed-time. She had been enjoying the European Championship football her front room, like the normal person that she is.

The previous evening a similar situation had ensued, and I had phoned the Care Agency to protest. As this was the second time in a row, I not only phoned the agency, I also sent them an email.

This evening at about 6.30 I telephoned your office to pass on my concerns about the Carer who has attended my mother on Saturday evening. 
Stating this again – she came in at 8pm while mum was watching the Germany Italy match and told her she had to go to bed. Mum protested that it was too early, but she was made to go anyway. She was then left in bed with the Zimmer frame in the other room, and her shoes on the other side of the room, making it completely impossible for her to use the commode in the night. She also left mum without the remote control to the tv in the bedroom, which meant mum missed the end of the match. 
I left the Carer a note expressing my concerns. She totally ignored it. 
Tonight she came at 8.22. Here’s a picture of how she left the room, Zimmer frame and shoes, and the telly. 

IMG_1769

IMG_1770Luckily enough I can check up on mum with video cameras. So I am at her house now and have put the zimmer and her shoes next to the bed. It’s now too late for mum to watch telly. She has been looking at a blank screen for 2 hours. 
I really don’t think this is right and this Carer should be retrained. It looks like her name is………

To date, this email has received no reply, but further phone calls have elicited promises. I know these are empty, as it all depends who they can send. Mainly the carers are very good now, but sometimes they are useless.

10 days later on the 10th July, this happened.

IMG_1930

If Mum was able to vault over a bed rail to use a commode, she wouldn’t need a carer, a bed rail, or a commode. To compound the stupidity, one of Mum’s phones was left on, which meant that had she felt she needed to press her Age-Uk alarm for help, because just for instance, she couldn’t get out of bed, it wouldn’t work, as it needs the phone line. Fortunately I went round that night, as I was worried that she was having problems getting in and out of bed.

I complained again……….and the week went on…..see part 3