AIBU to worry about how I'll manage financially when I'm older?

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And to be absolutely terrified?

I'm 56. Haven't worked since DS was born in 2000. Originally the plan was to go back part time when he went to school then more hours as he got older. Unfortunately I was diagnosed with rheumatoid arthritis 25 years ago which put the kybosh on that plan. DH has been the breadwinner and is on an okay wage (about £30k) but not enough to pay into a workplace pension or anything. We don't have any savings to speak of (about £2k for emergencies).

I have tried to find very flexible, part time work for years but it's absolutely impossible with no references etc and knowing I'll need time off sick several times a month when my symptoms are at their worst and/or the side effects from the drugs I take are particularly bad. I did have a job briefly (a few weeks) in a shop in 2011 but they let me go when I couldn't stand behind the counter and was off sick for a week, which I completely understand even though it was heartbreaking. I have applied for PIP but was turned down. I did not reapply because it was so dehumanising and stressful and we could manage on DH's salary just about.

What will happen when I/we reach pension age? DH is five years younger than me if that makes any difference. I'm so terrified of getting older that sometimes I think it would be better if I didn't. No money and health that is already declining makes for just such a bleak prospect. I think of the retirement my parents had - little UK breaks, days out, the occasional treat for DS, not well off by any means but comfortable and happy - and think what the future holds for me in comparison and it's so frightening. I've never been on holiday in my life and we have never been able to afford driving lessons let alone a car!

AIBU to be terrified of the future?

Hi OP. I've never applied for Pip myself but do know someone who worked for a while as an assessor.
The advice he gives is that you should complete the form as if it is your "bad day" rather than a good day and I believe, in come areas, Citizens Advice will assist with the form filling.
Have you looked to see if any Rheumatoid arthritis charities/support groups provide any sort of advocacy service to help you with a re-application?

I would ask an RA charity for help in filling in the pip forms again as it sounds like you do qualify. Don't worry about what anyone else thinks. Pip fraud is so rare and all the furour around it is just manufactured moral panic.
Also reapply for uc and apply for the limited capability for work element.
If you get to pension age and your state pension isn't the full amount, you'd need to apply for pension credit to top it up.
Millions of benefits go unclaimed and I'm concerned you're one of those people who are entitled but not receiving.
Benefits aren't a moral issue. They are there to help people exactly like you.
It's hard I know. I'm also disabled and part time and worry about the future. Can't see myself working past 50 as it stands. I just have to take every payday as it comes and squirrel away as much as possible.

Some very unhelpful and picky comments here and there's no need.

Can you volunteer OP? You have been out of work a very long time I would be worried too.

Thank you for this

I have all my CB contributions, I checked a couple of years ago. We aren't entitled to any UC because DH works full time, we had a small amount when DS was younger but nothing for about 10 years.

We had to opt out of DH workplace pension contributions because it was about £100 and the month it came out we didn't have enough left for essentials. If he ever earns enough to cover it he will opt in but there isn't much hope of that unfortunately. I can't pay anything into a pension as I have no income at all.

This is excellent advice, thank you. I hadn't thought of NRAS. They were very helpful when I was first diagnosed. I will get in touch with them this afternoon.

It's a very normal wage where I live. The majority of jobs are <28k.

Op you need tp get proper advice about this. For example, can you claim UC even if your income prevents payment it could still be covering your NI?

Definitely reapply for PIP and base the form on your bad days. Lots of applicants get turned down on their first go.

Please do reapply for PIP. My mum suffered with RA for 26 years and I know how difficult, and expensive, it makes life. She was rejected for DLA but her GP and consultant said to reapply and write/explain as if it is your worst day, rather than saying stuff you can do on good days. It is thoroughly depressing to have to do it like that but it worked.

I think the years you were receiving child benefit also count towards your state pension contributions, OP. You can check your qualifying years online - if you’re familiar with Martin Lewis’ website you’ll be able to find your way to the right government website via that.

lots of people have an ‘oh shit’ moment - my parents didn’t really get round to understanding how their lack of forward planning was harming them until my dad was 80, could no longer manage the odd bit of paid work to supplement his meagre pension, and my mum’s ability to budget and live on fresh air couldn’t stretch to replacing a perished water tank or 23 year old car.

You’ll be more alright than you currently think: you’ve got stable social housing for one thing. Go back and have another look at PIP and see if your husband can carve any pension contributions out. Those deductions are before tax, so he may find that the loss is offset by tax and it is building up. Even 15-16 years of small contributions will help. You will both get state pensions, even if not full whack; plus pension credit, (under current rules) and you may be eligible to apply for other help such as attendance allowance.

UC Is on how much earned and expenditure not hours worked.
How much is your rent?

Everyone I know who has been successful with PIP got rejected first time round so you may get rejected and have to contest their decision.

Would you be able to do anything from home? Just to supplement your income a bit, that could then free up money for your husband to pay into his work based pension. Even if you were self employed. What skills do you have?

You can still claim UC when working full time. A quick run through a calculator and making a few assumptions about your rent suggests possibly £1400 a year so do check. Definitely try again for PIP.

Citizens Advice and Scope with also assist with completing PIP forms..
Please remember when you are filling them in you are described your WORST day.. not your good day..

As well as checking again for your benefits which is most important.
Can you look at some extra ways to bring in some extra money? There are things like bank switches, survey sites and plenty of websites and bloggers doing a make £5 or £10 a day challenges?

I think being worried is a normal response here. Most of us by now (hopefully) realise the state of the UK economy and finances. There is a question mark over how long welfare will be available for and how much, there is a question mark over the NHS and whether we will have to co-pay or worse have private health insurance for a totally private system. There is a question mark on what age you get your state pension and how much it will be worth by the time you get it.

Anyone who is not pretty self sufficient financially is right to be worried. The UK is not doing well financially at all and at some point all the support it is giving out is going to have to stop.

On top of that we have events outwith our control like changing world order and a potential stock market bubble burst re AI (affecting everyone's pensions and investments unless you have a final salary pension of course).

I'm in a much better place than the OP but I'm still worried about the future. I own my house though so reckon I could sell it and live in a flat releasing cash or do equity release. Not ideal but could be done. I also have some private pensions and a fully paid up state pension but with all the unrest in the UK around it's finances I fully expect there to be some problems with my older age. If the NHS becomes private, that will change everyone's finances especially as they get older. Same with most of us who are still expecting to get a state pension. Relying on a country who is in financial trouble to pay all your bills is foolish indeed. So I can understand the OP being worried.

I had a relative who had RA and it was indeed a very disabling disease. The only thing I would say is in recent years it does not seem to have affected her so much. I wonder if the OP is on the best drugs/options? I can remember this family member being so ill she was dragging her leg across a carpark and literally couldn't get out of bed. Then she seemed to get alot better so not sure if it got better as she aged or if she found a better combination of drugs or went private. She went back to work though and started her own company. I don't see her anymore due to divorce or I would ask and update the thread.

At least the OP is trying to make some sort of plan for the future. OP - how about something very part time and low paid that at least would let you pay up your state pension. I don't usually tell people to claim for welfare but in this case it does sound worth applying for again.

Hope your situation improves OP. At least you have some family to help you in your old age. I unfortunately do not which worries me greatly.

It's well below the average for a full time worker in their 40s or 50s, which was around £53/54k last year:

Average Salary UK: Full Breakdown by Age & Region | Starling

NMW is over £25k now.

I think the child benefit you got for your son also reduces the amount of years you need to pay in.( By 12 or 16 depending on when they changed the rules)

I agree with the advice to try again for PIP. Contact an advice agency for your condition or citizens advice for help completing the form this time.
As for the rest, I guess like all worries, you have to think whether there's anything you can do to change things. Unfortunately in your case, there appears not to be. So there's no point in spoiling the life you do have worrying about what you won't have in the future.
You will have a home that will be kept in good, safe condition for you. You will have enough to meet your needs, and there are ways to find joy that don't require money, so you will have to build your retirement around these things.
Which isn't meant to sound unsympathetic, I hear you. My retirement won't be the best either, but if there's no resolve to the situation, there's nothing else to do but the best you can with what you have.
Friends and family, good books, music, time in nature, visits to free events, you can make a good life OP.

The AI bubble bursting is just the latest bogeyman the press are touting.

1929, 2000, 2008, 2020 - the stock market always bounces back and then some in the long run. As long as you have a sensible strategy a crash isn’t something you need to worry about.

As a number of PPs have said, please reapply for PIP with the support of CAB or advocates from charities associated with your condition - many disability charities have examples of what the questions are really asking, and what is a fair answer - it is definitely what are you able to do on your worst day, NOT what you can sometimes manage.

RA is a chronic condition with fluctuating elements, you need experienced support to help you to communicate just how difficult that can be.

If you are rejected, appeal, just don't try to do it alone.

Good luck

Could you possibly look into working from home? One of my son’s friends managed to get a permanent job doing call centre work, think through an agency who recruit for civil service.

But it's much more than slightly below the average for Mumsnet, where everybody is a corporate solicitor on half a million a year or is married to one.

Apparently.

PIP doesn't give NI credits

PPs suggesting doing pip form on your worst days - are you aware that's actually fraudulent to write worst days as if they're how you are most of the time?

The futures nir here yet?
Love one day at a time. You've no idea what will happen.

This is what I'm worried about and why I haven't reapplied. On some days I can bathe and cook etc so I know that if I were awarded PIP it would be fraudulent.

I will talk to NRAS (I have emailed them this afternoon) to see where I stand and ask them specifically about this but I would be worried that if I got it I wouldn't be entitled to it and would get into bother further down the line.

It's how you are at least half the time. You have to be able to do the activities in à safely, timely and reliable manner