Respite

It's very common for carers to be offered 'respite'. Typically, the person they care for will spend a night, or some night(s), in a care home so that the carer can have a day or few days respite from the demands of caring.

I haven't done this yet but since S has been given Continuing Healthcare funding I could easily do it in the future. There's a specific budget available. But, and this is something that you have perhaps to experience to appreciate fully, even now I find that my efforts to do more, get out and see friends etc are limited by my need to know that S is OK - even though I know that she is being well looked-after. There's almost a time-limit sometimes - I feel the pull and have to come home. Even though I talk about longer respite - even a single overnight away e.g. - I currently find it hard to imagine myself doing that. She still depends on me - I've kept her going. And as a result, I'm somehow dependent on her.

I think I might well eventually come to accept that extended respite, i.e. beyond a weekly 'evening off', will be necessary but I also feel that the difficulty that many carers have in accepting this is underestimated.

S has had another fit

Fortunately it's clear that it wasn't as bad as the last time. Although it was horrible to witness and hear (she was breathing in a strange gurgly way for 7 or 8 mins) she recovered quickly in terms of vital signs. The first responder got here before the fit was even properly over and her oxygen level was normal (it helped that as she was in the hospital bed I was able to get her into the recovery position very quickly, unlike last time when she was in a very awkward crumpled position and it was deemed potentially dangerous to move her).

It was scary - you know anything can happen but it's still a shock when it does - but I found I was able to cope. I was very reluctant to go to A & E after our last experience and I phoned our GP before I agreed and he said to go, if only for the bloods. Our carer came straight to the hospital, as did S's daughter who brought her very recently-born baby with her. So the waiting was actually quite bearable. 

All the tests were fine, including a chest x-ray (as the thing started when she was drinking and coughed so there was a risk of aspiration pneumonia developing) ECG and various blood tests. Her chest sounded fine as well.

Rather than wait 3 hours for an ambulance home, S's daughter drove me to collect the wheelchair and vehicle. I then drove back and our carer helped me lift S into the chair and we came home in tandem. We then got her back on the bed and settled ready for an evening snack. She had eaten most of a sandwich at the hospital so no problems with her appetite. Two days later everything suggest that she is pretty much back to where she was so just a 'normal' fit, if there is such a thing, but we shall see.

I've looked at the NHS Choices page on seizures (fits):

http://www.nhs.uk/Conditions/Epilepsy/Pages/Symptoms.aspx

It confirms that there is an enormous range of symptoms that can constitute a seizure, e.g. S regularly has what could well be Myoclonic seizures, particularly at breakfast time and these can occur in conjunction with other types of seizure.

Also, it confirms that not all seizures are due to epilepsy.

It looks as though this is yet another area that I need to get clued-up about.

A very powerful cry from the heart

She's FINE - so we the authorities don't need to do anything but YOU should...
Take the morning/day off to get her to all her medical appointments because otherwise she won't go. Ring them and apologise for her non-attendance and rearrange another appointment, booking yet another day off when she says she doesn't feel like it today.

BUT SHE'S FINE.

Attend said medical appointments and sit slightly behind her in order to nod or shake your head to indicate whether what she's saying has some basis in reality or is a complete and utter nonsense.

BECAUSE THAT'S COMPLETELY NORMAL AND ROUTINE THING TO DO FOR PEOPLE WHO ARE "FINE".

In fact, go everywhere with her now because she's visibly vulnerable when she's out, and a target for the unscrupulous. She's also not really safe on her own out and about any more due to all the falls and her inability to access public transport or cross roads by herself any more.

COS THAT'S NORMAL FOR PEOPLE WHO ARE "FINE".

Nearly get hit by a car yourself when she runs out into the road like a naughty toddler, but unlike a toddler you can't put her on reins.

BUT SHE'S FINE. (YOU"RE A NERVOUS WRECK BUT WHATEVER.)

Do all her shopping because the only thing she can cope with buying anymore is bread and biscuits. Which is lucky because that's pretty much all she eats.

BUT SHE'S FINE.

Supervise her 24/7 because she wanders and has a tendency to turn up places in distress, very frightened and confused.

BUT SHE'S FINE.

Supervise what she's wearing because she tends to wear exactly the same clothes whether it's a heatwave or a snowstorm.

BUT SHE'S FINE.

Remind her to bathe and wash her hair because she doesn't know what day it is, so she doesn't know it's bath day or hairwash day.

BUT SHE'S FINE.

Remind her to use the loo and get out of her chair now and then because otherwise she can sit there in front of the tv for hours and hours and hours and then have an accident.

BUT SHE'S FINE.

Clean up the mess when she has an accident because she "couldn't be bothered to do that now/didn't feel like it/ didn't have time."

BECAUSE THAT"S STANDARD BEHAVIOUR FOR SOMEBODY WHO IS "FINE".

Turn her heating off when it's 26 degrees outside and she's whacked it all the way round to the max "because it didn't come on".

BUT SHE'S FINE.

Go down there to turn her heating on when you ring her to remind her to eat or take her pills and you can hear her shivering.
Also make her put the cardigan on that's sat over the arm of the chair next to her, and press "ON" on the electric fake gas fire that you had fitted because you hoped it would stop her fiddling with the central heating.

SHE'S FINE THOUGH.

Ring her and remind her to eat and take her pills a few times every day.

YOU KNOW, BECAUSE SHE'S FINE.

Go down there immediately every time "the tv won't work" because she can't work the tv all the time and she can't follow instructions over the phone, but it's Ok because it's a two mile walk and the exercise is good for me.

SHE'S PERFECTLY FINE THOUGH.

Realise that you've just got used to most of the downstairs curtains being closed all day every day "because people are looking at her".

SHE'S FINE THOUGH.

Get a Power of Attorney then register it with the bank so that you can pay all her bills for her because otherwise she wouldn't, and everything would get cut off.

BUT SHE'S FINE.

Remove all banking paperwork and her bank card from her home and give her pocket money - because she's been stuffing charity envelopes with hundreds of pounds every month and giving her bank details to people on the phone and strangers on the doorstep.

BUT SHE'S FINE. AND DEFINITELY NOT BEING FINANCIALLY ABUSED BY THESE CHARITIES, CHUGGING COMPANIES AND INTERNET SUPPLIERS/INTERNET SECURITY SALESMAN ETC BECAUSE THEN WE'D HAVE TO DO SOMETHING.

NO. NOT EVEN THE ONE WHO MORTALLY OFFENDED HER BY TELLING HER TO GET HER CARERS TO BUY HER A MAGNIFYING GLASS SO THAT SHE WOULD BE ABLE TO READ OUT HER CARD DETAILS OVER THE PHONE. (CARERS?! HOW VERY DARE YOU! SHE'S FINE.)

Redirect her post to your house so that she no longer receives the charity begging envelopes full of raffle tickets etc because she treats the "suggested donation" part as a bill she has to pay. If it says "Suggested Donation £30" then that's what she sends them.
Except that she doesn't really know which note is which any more so she puts three notes in, but not being sure which ones they are she puts another few in to be on the safe side. And in this way she could draw out £150 from the bank on Monday morning and have none of it left on Wednesday afternoon despite not having left the house except to post a couple of letters.

SHE'S FINE THOUGH. THIS IS JUST SOMETHING YOU HAVE TO DO FOR PEOPLE WHO ARE FINE.

Register the Power of Attorney with the phone company so that you can a) pay the bill and b) so that you can buy her a phone and stop her renting one from the phone company, because she could have bought many many many phones for the amount of money she's paid to rent the same one since 1985, and c) so that they will talk to you because you need to get Caller ID on the line so that you can buy a TruCall machine which will screen her calls - both to protect her from salesman/criminals and because she says "debt collectors" are ringing her to ask questions about her neighbours and she's giving them chapter and verse about who's got a new car, and who stays where overnight, and who she thinks isn't really disabled. You don't know if this is true or not, but you can forsee lots of trouble with the neighbours if she should mention it to them.

SHE'S FINE THOUGH.

Buy a TruCall box and set it up so that only friends and family can ring her.

BECAUSE SHE'S FINE.

Buy her a Buddi telecare system which she refuses to wear, even though she's had several falls. Because she's not going to fall again you see.

SHE'S FINE THOUGH YEAH? TOTALLY.

Be at her house when she gets up in the morning. (Anywhere between 5 am and 9 am.) And again when she decides to go to sleep. (Piece of string) And also if she gets up in the night. Because she can no longer manage cleaning her contact lens regularly and keeps injuring her eye by not putting the neutralising tablet in, taking the contact lens out out too soon, confusing saline solution with cleaning solution or by not cleaning it at all and putting a cracked dirty contact lens into her eye.

OR

Replace her £120 contact lens about every three to four weeks before it cracks, and take her to A&E regularly when she forgets to put the neutralising tablet in or takes the lens out too soon before it has worked.

SHE'S FINE THOUGH. SHE'S NOT ENDANGERING HERSELF AT ALL. NOTHING FOR THE AUTHORITIES TO HELP WITH HERE.

Fill in all forms and do all life admin - because she can't.

SHE'S FINE THOUGH. THIS IS ABSOLUTELY NOT A SIGN THAT SHE NEEDS ANY HELP FROM THE AUTHORITIES.

Guide her step by step through how to sign her name when she needs to - because she can't really write any more, and can't remember what to write either.

SHE'S FINE THOUGH.

Turn down invitations to people's weddings because you can't leave her unattended, don't have a holiday for the last six years or the next 15, realise that the idea of having a social life or even a gym membership is ridiculous and give up your whole life to supervising her.

BECAUSE SHE'S FINE.

Take whatever abuse she wants to throw at you very day cheerfully and compassionately, always validating her reality and negating your own.

YOU NEED TO DO THIS BECAUSE SHE"S FINE.

Fight back tears when an entire bus queue gives you sympathetic looks and pats your hand or shoulder as they get on because of the evil things she's been saying to you at the top of her voice for the last eight minutes while they all queued for the bus.

BECAUSE THAT'S FINE.

Buy her a cup of tea in town and then get back on the bus with her after she refuses to do the shoe shopping you came into town to do because you've upset her by not having the energy to cry and she likes it when she's able to make you cry.

STANDARD. NORMAL. "FINE".

Take anti depressants and sleeping pills just so that you can cope with the stress of dealing with her because her behaviour is so "challenging".

WE WOULDN'T NORMALLY INSIST THAT YOU STAY IN AN ABUSIVE RELATIONSHIP AND DRUG YOURSELF SO THAT YOU CAN COPE, BUT WE WILL ABSOLUTELY EMOTIONALLY BLACKMAIL YOU IF YOU SEEM TO BE SUGGESTING THAT YOUR MENTAL HEALTH MATTERS TOO.

BECAUSE SHE'S FINE.

I came across this online. The person who wrote it has given me permission to post it. They said they are going to edit parts of it as they did it at 5 a.m. and 'it is not very well written'. I beg to differ.