Omg I’ve just worked out that my husbands care cost is £46 an hour because he needs two Carer’s but that’s £46 an hour or £1104 per day or £7778 per week or £402,960 a year not including administrative fees the government pay me 40p an hour or around £9.60 a day £67.25 a week £3497 a year includes administrative fees but to be fair do get a £10 Christmas bonus although I’ve not included any holiday or double time bank holiday payments for the first figures either. My question is do you think thy have the decimal point in the wrong place for the latter or am I just thick😂
We are 21st century slaves.
Are you aware of NHS Continuing Healthcare, free help at home for the most disabled?
Hi absolutely I also know how difficult it is to get it to get anyone in authority to listen for them not to fob you off with miss information or clear lies and I also know if someone needs that level of care the only place they’re going is the local care home cheapest one they can find!!!
Sue, that’s not right. If you are entitled to CHC there is a CHOICE.
The care can either be provided in a care home OR in someone’s own home.
This was agreed long ago after a BBC Panorama programme. Google “CHC Pointon”.
My experience went from mobile and continent to bed bound and double incontinent overnight because hospital screwed him over and ignored my pleas to stay with him came out almost 3 weeks having been told had pneumonia which they treated by laying him flat on his back then a massive fit that they treated with epilepsy drugs that they forgot to read the label on turns out wasn’t a fit just a reaction from having no med and side effects to the new ones they have him had him so screwed over on the two occasions they picked to get him out of bed he had little cognitive ability cos he was either withdrawing from drugs or high on others sent him home with a package of three care visits a day around 15 different people popped in and out in different varieties over the next 10 days even I couldn’t keep up. They forgot to tell us after 7 days they would then be charging £46 an hour for the privilege of scaring half to death. Took a week for social worker to finally get back when I requested visits to stop told that was our assessment had to call community nurse cos wasn’t on list but apparently not warrant a visit phoned social worker again waited two weeks to be told she didn’t know anything about continuing health care and need to be dying quickly anyway but she could give me there number. Rang the number told need assessment from social worker spoke to GP who spoke to community nurse who had not even closed the front door before telling me he was not fast track and needed to be dying in the next three weeks and what is the point cos I don’t want a 100 different people coming in especially in the middle of a pandemic when I told her she was incorrect and I wanted a personal assistant to help with familiarity I was told she had never heard of personal budgets and they don’t do that but she did promise to call once a month and contact Macmillan nurse not seen or heard from since we did have a bad urine infection and after antibiotics didn’t work was recommended to go back into hospital but guess what after going right to the top wasn’t allowed to go with him or visit for first 2 or three days apparently can make up own rules we said thanks but no thanks can’t be bothered chasing and justify need we do and are managing at the moment. I refuse to spend the time he has left fighting but when my times my own those people that shut the doors will have their heads on platers mark my words!!!
What will happen if you get ill suddenly?
Surely it would be a good idea to have someone other than you involved?
We were fit as fleas when we reached 50. 54 I was diagnosed with cancer, then my husband died suddenly of a heart attack, then I was nearly killed in a car accident, left unable to walk properly until I had two knee replacements. How would you manage if anything like this happened to you?
If this was re-ablement care it should be free for up to six weeks - four visits per day, there would need to be a major improvement in the patients condition for it to stop after one week.
Welcome to the world of lying, misleading, two-faced, shifty and conniving Social Services.
I do have family that help out. I’m happy with my role. Yes if I wasn’t able he would probably have to go in a nursing home as the last resort. I don’t know what the future holds we have fabulous days and then bad days where you think this is the end and 24 hours later we are having a fab day again and wondering what all the fuss was about. I’m not a trained nurse and not had any training but I have time patience and bucket loads of love still left in my bucket and having seen first hand some of the care or lack of it he’s received then I’m absolutely the best he’s got at the moment and when his time comes I will be with him every step of the way we’ve had a happy life and I was going to say I owe him that but actually I owe it to myself it will be a privilege!!! The system doesn’t help it just makes you feel undervalued and worthless the amount of Carer’s allowance isn’t just about the money it’s about a system that tells you your the bottom of a pile. I’ve sat and cried through the pandemic because again we’ve been sidelined and ignored for our dedication and hard work it makes me angry I would love the people making the decision to walk a day in our shoes and then justify what we do against the allowance. My family pick me up when I’m low and make me feel like a million dollars but not everyone is so lucky!
I wonder how the government nhs and social care would hold up if every unpaid carer downed tools for a day or two and see how they would cope? Bet you then we would have the respect and recognition we deserve. But as Carer’s we wouldn’t do that and they take advantage of us for it!!
Agreed.
However, if you become ill because you haven’t accepted enough outside help, where would that leave your husband?
Would it not help to have someone in a support role for you, so they can do some cleaning, cooking, laundry etc. to give you less to do?
Bless you!! You make it sound like there’s a magic fairy waiting outside Almost every request I’ve made has been ignored or I have been Told wrong information or lied to And when they have listened or promised they haven’t followed through could give you a list as long as my arm but like I said before I cope and if I need help I shout the people I can relay on but I shouldn’t have to I have kept a diary of things that have been done or not done and a note of misleading information and lies when it’s time to pick my battles I absolutely will be shouting it from the roof tops and making sure that I will be the one slamming the door!!!
Not suggesting a magic fairy at all.
Right now I could do with one if anyone knows of any magic fairies out of work!?
I was just trying to give ideas of alternative ways of looking after you in your situation.
I know of a number of carers who have DIED in their caring role, my own husband included, when he was 58.
The cynic in me wonders if SSD want us to die so that they can do what they want with our carees!
Leaving things to the last minute doesn’t always work.
Father in law tried that, there was a much better solution to mum in laws situation if only he’d listened to me.
Maybe my husband would still be here if FIL hadn’t been so pig headed.
FIL never considered the implications for the rest of us trying to support both of them.
Think what I’m saying is it doesn’t help me to chase and call and feel like I’m begging for actually what is supposed to be there in the first place. That battle is harder , more degrading and time consuming then just doing it yourself!! I know there is supposed to be all these lovely systems in place but probably because I do a good job of keeping my home tidy and my husband well cared for I’m low on their priority list!
I am sorry if i sounded ungrateful 
I get frustrated sometimes I absolutely know what help is available and I also know each person’s situation is different with different local authorities and for some the help comes easy. I do get upset my children and lovely grandchildren have all had to take a back seat over the last few years. I haven’t had an hour off since the two hours I had on the 7th of March. It makes me feel like I’m letting them down.
I also know I’m the sort of person who cleans before the cleaner comes😂 if you asked me what I needed the most what would really make a difference it’s reassurance, reassurance that how i care for my husband is good not because I want a pat on the back just to know he safe that he’s ok someone to look him over once a week to say yes you’ve done everything right and there’s nothing to worry about.