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Care & carers

Who cares for our Carers?

(13 Posts)
62Granny Tue 06-Feb-24 16:35:25

Did any one catch this programme last week? It was on ITV on Thursday 1 st Feb, it full title was : Tonight: Lindsey Burrow - Who Cares for our Carers?
It didn't tell us anything we don't already know, but did highlight how much is saved by the government by unpaid carers. There was one lady who was looking after a bed bound mother and a husband who had dementia. As she said she didn't expect her retirement to be quite like this.
Lindsey herself carers for her husband with MND and has a young family and was still working as a physio.

Primrose53 Tue 06-Feb-24 16:45:39

I saw it 62Granny and as you say, nothing new but it did highlight the strain some carers are under.

People don’t realise until it happens to them. No time to yourself and full on 24/7.

What they didn’t tell you was when you receive your state pension your Carers Allowance stops even though you are still a carer.

Judy54 Tue 06-Feb-24 17:02:56

Yes there are also many young Carers caring for Parents whilst trying to juggle school life and doing the things that a Child should be doing. Instead of playing with their friends they are undertaking domestic chores. They go under the radar and there is very little support and help for them or Carers of any age.

62Granny Tue 06-Feb-24 18:14:55

Primrose53

I saw it 62Granny and as you say, nothing new but it did highlight the strain some carers are under.

People don’t realise until it happens to them. No time to yourself and full on 24/7.

What they didn’t tell you was when you receive your state pension your Carers Allowance stops even though you are still a carer.

Yes I thought that about the carers allowance, it is due to happen to me soon.

62Granny Tue 06-Feb-24 18:16:36

Judy54

Yes there are also many young Carers caring for Parents whilst trying to juggle school life and doing the things that a Child should be doing. Instead of playing with their friends they are undertaking domestic chores. They go under the radar and there is very little support and help for them or Carers of any age.

I always feel sorry for young carers too, especially when they help to look after other siblings too.

Whiff Wed 07-Feb-24 06:49:41

I can tell you from experience no one. I cared for my husband when his cancer was terminal this was in 2003 and where told you apply for DLA . My husband had a question and the woman he spoke to asked how long had he been given he said 4 months to 2 years she said no point as you have years and put the phone down on him. Our McMillan nurse went mad and filled in the forms. My husband didn't live the 4 months he died in 2004 aged 47 . I got £43.10 carers allowance.

When my mom lived with me the last 18 months of her life I was allowed 6 months carers allowance because I was told my mom would get better she had cancer and dementia it had gone up to £62.20 . Mom died aged 90 2017.

My brother is carer to his wife and father in law but only allowed to have one carers allowance for his wife . Which will stop when he reaches state pension age next year . But by then they both will need more care. He had to give up work nearly 5 years ago to look after them . He gets a small private pension a week plus his carers allowance.

And a child carer gets nothing . It's heart breaking for parents if their child has to look after them and siblings. This country gives away millions every year to other countries about time they looked after people in this country.

Trouble is very few MPs have had real jobs before becoming MPs after uni . They don't know what it's like to do without..Even labour MPs which used to be workers who became shop stewards then went higher up in the unions before becoming MPs are all university educated.

They have no idea what the real world is like. I didn't watch the programme but this is my experience.

Allsorts Wed 07-Feb-24 06:59:39

I didn't watch it. I've total respect for Carers, they should get help themselves and respite. It saves the National Health a fortune, these selfless people caring for loved ones, I especially worry about children doing it for their parent, elderly people trying to care for others and they need help themselves. this is so wrong. There's are not enough paid Carers, if you get one, the visit is so short it's almost pointless, there's no real communication or care anymore.

MissAdventure Wed 07-Feb-24 08:14:54

I think unpaid carers are unsung heroes.

Its exhausting, and I can't imagine how difficult it must be for those who cope alone, if their partner has dementia.

They really are overlooked (conveniently)

pably15 Tue 12-Mar-24 20:42:52

I care for my husband who has dementia, and because we're both getting state pention, I can't claim carers allowance because it's a benefit and you can't have two benefits, it seems the state pension, that people paying all their working life for is classed as a benefit too, As whiff said, this government's too busy giving billions away to other countries...

Whiff Wed 13-Mar-24 06:18:40

pably15 get in touch with Citizens Advice and they will make sure you get any benefits you can get. Should beable to get Attendance Allowance for your husband. It's worth a try.

Make sure you have to hand your NI numbers , diagnosis, bank details, savings ,what pension you get and how much, whether you rent or own your property,if rented who do you rent from how much,if your home is owned with ot without a mortgage. Drs and consultant details. They may not need all the information but better to have to hand just in case. The more information you can give the better.

I contacted them about my husband's state pension. He died in 2004 aged 47 been told I will get 48p per week from my husband's contributions. I will get full state pension in April. They said I could get pension credit. I had to go too their office and spent 3 hours with the advisor and she helped me talked to DWP and they filled a form in and gave me a reference number to quote when I ring DWP on my birthday to see if I will get it or not. The advisor wrote down exactly what I have to say.

I think they do make home visits but not 100% certain.

Cabbie21 is brilliant about anything like this so might be worth sending her a PM . Her advice helped me when I had problems claiming PIP and having to go too the PIP tribunal.

Have you been in touch with Alzheimer's and dementia charity ? There may be help for you in your area . I never bothered when looking after my mom in hindsight wish I had.

Hope some of this may help . You are traveling a hard road and it's heartbreaking watching someone you love disappear as they died long before their bodies. Unfortunately last 4 months of mom's life she became violent but it was out of fear she didn't know who she was ,where or who I was. She thought I was her mom . But for all mom lost she always knew when she needed the commode and never wet or soiled herself. In her lucid moments before things got this bad she insisted on wearing a pad like a thick tena lady as she was frightened of wetting the bed. I am proud of the fact my mom never had a sore on her body.

But I didn't realise how much it cost me healthwise. Please look after yourself and make sure you eat and drink . It's very easy to neglect yourself . 💐

pably15 Wed 13-Mar-24 08:44:13

thanks for the information Whiff.....my husband does get attendance allowance, a lovely lady from dwp helped to fill in the form, also downloaded a form from council about a reduction in council tax and got our gp to sign it. Alot of information you only find out on forms like this,,

ferry23 Thu 21-Mar-24 18:36:37

This is such an interesting thread for me to read. My son has various mental health issues, he's autistic and has MS, so I've had to care for him in one way or another all his life (he's in his 40's) with minimal, if any, input from his father, my ex-husband. He does live independently but needs a huge amount of support and help. I had to give up an interesting and rewarding career to look after my Dad which I did for 11 years until he passed away 7 years ago. Because I had a pension and some savings when I gave up work I wasn't able to claim any financial help until all my savings and my pension pot had been used up (I still had a mortgage). Then I got Carer's Allowance but of course that stopped when my state pension kicked in. The last few weeks have been particularly difficult. My son's best friend passed away unexpectedly and he was so distressed that he came and stayed with me (I'm not really set up for 2 people in my flat but I would never say "no" to him). When he went home last week he was told his landlord wants to sell the property he rents so he'll receive a Notice to Quit next week. All the emotional and practical fall out from his friend's death and him having to move will fall onto me by default. I love my son, of course I do, but I'm SO tired of trying to care for and prop up other people. Just today I put my head in my hands and just wished someone would come and care for me! Just someone to make me a cup of tea would be wonderful. But then I read this thread. There's a lot of selfless people here who are feeling the full brunt of being an unpaid carer. You have my utmost respect.

62Granny Sun 24-Mar-24 18:25:57

Have you thought about a personal assistant for your son? It would be managed via Direct payments , which he could claim a social worker or Welfare rights officer from the local council would be able to help also they should be able to help with finding him new accommodation? I recently attended a meeting with someone from Accessibility Wales, and she is helping someone I know who looks after her brother and father who have both had strokes. I didn't know this organisation as existed , but they are there , we just need someone who knows about them to point you in the right direction.
There also should be a Carers Association in your area, try the local library for info. Everyone is entitled to a Carers assessment, they can signpost you to help in your area as well.