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?

You don’t understand chronic and debilitating conditions. People with conditions such as RA tend to not have a couple of really bad days then the rest are perfectly normal, feel great full of life, no pain or tiredness just like a ‘normal’ person. It’s days which have pain and tiredness and can’t do a lot just better than the worst day.

My dd has a chronic illness, on her worst days she is bedridden and sleeps around the clock.
On her better days she can get up but her capabilities look nothing like a normal life, it’s just better than her worst day.
And that ‘good’ day where she can do more has repercussions where she will be in bed for days if she does too much.

It’s easy to think that someone having a good day feels just like you do on a normal day therefore their pip claim is fraudulent but good days for a person with a chronic illness is probably like you feeling unwell with a virus but you can still get up and make a cup of tea or brush your teeth or make a sandwich but you’re not fit for much else as you feel like shit

If her husband was in his 60’s I would agree but he’s 51 and potentially has a lot of time to build up an OK pension plot. Additionally none of us know what the future holds so I don’t think anyone in their 50s or younger should rely on Pension Credit being around when they’re pensioners, or it may be around then but eligibility will be tougher than what it is now.

I agree, the OP has secured housing and will be entitled to a raft of benefits.

Use this time. Like others have said, give PIP ago again. Also, doublecheck there really are no benefits you're entitled to.

Up until retirement, could DH do another job? Also, even though he retires from working fulltime - he might be able to continue working a few hours a week for extra. Admittedly, mine was younger, but he's done a couple of bar jobs over the years - one was the same time every week, the other was flexible each week and worked around his shifts. If you can live on what you've already got, then it could be saved. Also, one you get your pension, that could be saved.

The current full UK state pension is approx £12k, so 1k a month

If you rent you would get this paid

If you dont get the full pension, you can apply for Pension credit, which comes with some extras like free TV licence & some other discounts

If you claim PIP that will continue or you can claim attendance allowance

Free bus pass

Discounts on various other things

I do understand chronic and disabling conditions - I was born with one and have developed several

It's how you are at least half the time

Please apply for PIP again . Go to Citizens Advice and ask them for help to fill in the forms . They need to be filled in as to when you are having your worst day. This could mean you need help with showering and dressing , help preparing food etc etc .
You could also be entitled to the mobility element.
There Is also a benefit called Employment Support Allowance for people of working age . I’ve no idea if this applies to you but it could do .
First stop Citizens Advice.

Was thinking the same thing! My DH has RA and is self employed in a very manual job. His medications (methotrexate and adalimumab) keep his RA largely under control.

I did work when I could. The three years after DS was born, before I became ill, was spent being a SAHM and we budgeted for that and could afford it. Then I got symptoms of RA and was diagnosed about 18 months later.

DH's salary is absolutely average where we live. And he doesn't have a family to support, DS is 25 and left home years ago. He works 8-10 hours a day, how and when can he earn more? We live in a very small town and there aren't opportunities to earn £40 or £50k here. Luckily rents and other costs aren't as high as areas where he could, so it balances out.

Disability can happen to anyone, at any time. I was in my 20s when I started to get symptoms but didn't think for a second it could be something so life changing. I worked from leaving school to two months before DS was born.

I'm genuinely happy that you are not in a position to understand this from experience, and I hope you never are. Disability crushes you physically and mentally and being unable to plan or contribute to your future isn't something I'd wish on my worst enemy.

Completely agree. I went on some PIP training this week as part of a new job role and even the trainer from the leading welfare rights organization in the UK confirmed that you do not write a PIP form based just on a worst day. It really gets my back up when I see people giving this kind of poor advice again and again on these threads. As you've said it's based on how someone is on the majority of days and from expereince of supporting people during their PIP assessments I am pleased to say that I think most assessors do explore this majority of days issue in some detail.

You do not fill out a PIP form just based on a worst day as had been repeatedly discussed on this thread. To claim ESA op would have needed to have paid Ni contributions over the past 2-3 years which she has not. they may qualify for a small amount of UC.

It might be because I'm having a particularly bad day today but this has me in tears. I did not know I was going to become ill when I had DS. Me and DH had our plans in place for the future, two salaries, moving toys bigger place, etc. But this disease took away my health as well as my ability to be the mother I wanted to be. I wish so much that I could have done better for him. He is now very happy, went to uni and is a vet. He always says he had a lovely childhood which helps with my guilt but I wish I could have given him holidays, fancy xmas presents etc.

I will say though that DH's salary is average/good for where we are, but it was always the plan for us both to be earning.

Op please do not let nasty posters make you feel bad x

OP, some people come on to threads like this solely to put the boot in, have nothing constructive to say, and often don't know what they are talking about where medical conditions are concerned. I have suspected RA myself as well as other conditions that make life harder and affect my earning capacity, and I just wanted to say that some of us do get it. You've raised a happy, successful son, that sounds like pretty good going to me. 🙂

Don't let anyone put you down.
You have nothing to feel guilty about. Chronic conditions can cut anyone down.

You were dealt a shitty hand, but you raised a fine son in a loving & happy home, who has done well for himself.

You should be proud not guilty.

Re biologics - I have asked to be put on these but my NHS trust only funds them for people with JRA (and a few other conditions). Or people who can't tolerate methotrexate. My side effects they say fall into the category of what's expected. I'm on quite a high dose (25mg a week which I inject). The advice is to take it on a day when I can have two days clear to recover but the side effects can pop up throughout the week too. I also take sulfasalazine which isn't very pleasant but not as bad as the mtx. I was on the mtx pills but they changed me to injections because I could not tolerate them.

A lot of the pain comes from damage done to the joints in my feet and hands before I was diagnosed. I was in pain for quite a long time before my diagnosis (I was originally told by a GP I had bunions!). That can't be fixed, the only thing which helps is painkillers which also make me tired and a bit dozy.

I have applied for lots of voluntary positions including ones I can do from home but I don't have any references so they never get back to me. Unfortunately you need references to do voluntary work just as you do with paid work.

Thank you to all of you who have taken the time to offer advice and help. I will come back to this thread and use it for reference. I don't have anyone in real life to talk about things like this with so it has felt really lovely to have so many people offering support and kindness. Thank you and I hope you are all having a lovely weekend 💐

Have a look at https://community.arthritis-uk.org/ its Arthritis UK community. You may find good advice there and also connect with other people in a similar situation if you’re feeling isolated. They also have volunteering opportunities and may be able to provide advice on PIP.

If giving my opinion is putting the boot in, so be it. OP has not worked since, what - 30 (?) and has waited until now to start thinking about old age, pensions, etc? And it's been impossible to find flexible or part-time work in all that time? And DH has never been able to try and get a better job? And nobody has ever thought about basic things like pensions? Give me a break.

I know what illness is, I accept that some people can't work and I have a friend with the juvenile form of RA. But I also grew up in poverty - largely due to unemployment, addiction, my parents' absolute fecklessness with the money that did come in, and total lack of future planning. They too had "no money for driving lessons", holidays and the rest. It was miserable. And as an adult, I had to pay for the basics they couldn't, and I still hav do it now. Basic, basic stuff like groceries, petrol, washing machines for God's sake.

I don't wish misery on the OP but I don't understand why anybody has to reach pension age before the penny drops. You have to take responsibility for the hand you are dealt, long before you are sitting and working out how you will cope in retirement.

If you don’t earn anything and your DH is a basic rate tax payer, have you claimed the marriage allowance? You can back date it for 4 years, so it would give you about £1k if you haven’t claimed it.
Make sure you use the HMRC website or call them, there are lots of companies who offer to do it on your behalf but take a big cut.
I hope your pip application is successful, I can’t imagine how tough it is living in pain every day.

Nothing I said was cruel in any way. And it touched a nerve with me because I grew up with nothing (for different reasons). When you became ill and life threw you that particular curveball, it should have been your husbands' A1 priority to get a better job - move, retrain if possible, whatever it takes to support a family. Apply for every benefit possible, think carefully about housing options, etc. You could also have used that time to do bits and pieces of volunteering, so that you don't now have a 20-year CV gap and no references.

You are not helpless. Somewhere along the way you stopped thinking about the future and now you're worried, and making all kinds of excuses, and I'm just not going to sugarcoat what I'm seeing. Your son has done exceptionally well to go to university and get a career. Do your best now to pick yourself up, re-apply for PIP, help your DH and do whatever you can to make sure DS doesn't have to come back and pay for your life in retirement.

It is cruel to rail at her for what you think she should have done 20 years ago.

Unless you have a time machine and are planning to go back in time to forewarn her.

It's just having a go at someone, it's not constructive.

Telling her she should have done better is not helpful. She can't go back in time.

Theres lots of people living on similar and on this site its akin to living in a hovel getting your food out of skips

The posts here about OP being able to claim benefits on such a household income show how divorced people are from the reality. You wont get help on that income for the household because it is 'ok'. OP might get pIP but thats not income dependent.

Lots of people wont earn above that amount due to the role they're in. Not everyone in this country can progress and progress and progress and then end up on about 70k, it doesnt work like that in a lot of jobs.

Obviously the husband's income in too high

Yes this, my OH is someone like this, used to work for HMRC, central London, very low wage, very low wage, then moved into Local Authority, customer service, he has no qualifications, isnt able to get any, struggles to communicate, very likely dyslexic, very likely ASD. Gets by on personality but did not manage to get a job when we moved area, interviews were probably a car crash. He isnt really capable of learning

He has no diagnosis, theres nothing wrong with him as such. The job he does now is still central London but costing a huge amount of commuting cost and its a low wage for his age (60s) and the area, a bit above OPs husband. It wont go up, its a LA, he's moved on from customer service but he has been lucky and he knows it, its not about skill or ability so he got lucky

Its his job and he's good at it. He wont be employed anywhere else

Its impossible for posters on this forum it seems to understand that people have different abilities and its not, as the poster implies 'a medical problem', these things arent always solvable, trainable, changeable, fixable. There are many many people in public services up and down the country on wages like this, its fairly normal.