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

[ShiteWithSugar]

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?

Thank you everyone for your helpful posts. I will think about applying for PIP again but as a PP said telling them how I am on my worst days is fraudulent so I'm not sure if I will get it, or if I should apply at all. I have emailed NRAS this afternoon to ask for advice.

To posters saying I have family and friends - I have DH and DS and thats it, and DS lives 250 miles away so I do not see him often. Me and DH have no friends or family between us but we muddle along quite happily, although I do feel lonely and isolated a lot. So nobody to help as I/we get older.

I have applied for hundreds of jobs but I haven't had one response. I used to work as a nanny but obviously can't do that now. The thing is I know I would be unable to work on the two days after I take my medication or when I'm really unwell, which with RA is completely unpredictable. I can be relatively fine in the morning and in severe pain by the evening. It also takes me up to a couple of hours to 'get going' in the morning because of pain/stiffness. There are so many symptoms with this disease - painful dry eyes, crippling fatigue, brain fog, but worst of all the pain. I take tramadol or codeine every day for it which also makes me a bit dozy especially on bad days when I need a full dose every four hours. I hate this disease with such a passion and wish I could just the normal and work and have purpose and be able to save for the future.

Sorry for moaning. But thank you all for your helpful replies, I really appreciate them all.

Variability is fine for PIP if dealt with properly on the form. They look at how you are the majority of the time. So if you can only cook two days a week, that would count as not being able to cook. You need to find a charity who specialises in PIP forms to help you with this as there is a real art to how it is done.

One £30k wage is a very low income for a family - its well below average, median wage for a worker in their 50s is £42k, and most homes these days have two earners.

Op - do you have any skills or qualifications?

You have my sympathies op my Grandmother had RA its not nice. You were astonishingly unfortunate to get it at age 31, thats very young.

Could you look for work that is less physically demanding? Something like a call centre or desk/computer based? If you have physical limitations like swollen joints theres fantastic technology now to make work more accessible, like voice to text notes.

You should try again for pip, did you try when the disease was in earlier stages and less debilitating? You may meet criteria now.

Understandable why you feel anxious OP.
As Tigerrag says above as long as over 50% of the time. I am a relative’s
appointee for her PIP and I know the form is quite daunting. Please apply so your claim is in the system as if entitled you will be awarded from date of claim, then get in touch with CAB etc for support in completion.

From the Universal Credit website.
“To get PIP you must experience difficulty with tasks most of the time. This means that you expect to have difficulty more than half of the days over a 12-month period.”

If you are qualified as a nanny, could you advertise to babysit for local families in evenings? You can earn £10 a hour sitting in for 3 hours with school aged children in bed and really all you need to do is offer a cheap rate to have people wanting you. You could turn down dates that coincide with your medicine. Even if you brought in £100 or £150 a month it could go straight in a pension.

People also pay cat sitters a lot. Im paying a teenager £100 for 2 weeks cat sitting and thats rock bottom rates.

If your dh keeps working, you should be ok until state retirement age, although any work you can get between now and then will be a massive help. You are horribly dependent on him and really should be looking for ways to make up your Ni contributions.

Can he add to his skills to improve his hourly rate? Get promotion?

Can you do data entry or virtual PA or even surveys to bring in some money. Can you retrain? Can you trade on ebay? What do you do for leisure?

You'll get to retirement age and be able to claim state pension, and if necessary, pension credit which should provide about £10k With incomplete NI.

Your dh, when he retires will receive state pension (£12k) plus any private pension he has accumulated, so together you may have anywhere between £22k (two state pensions) & 30k.
By then you may need housing benefit or HA retirement accommodation, because private rents will rise faster than your income, but you will be housed.

So don't fear it, but keep looking for ways to generate some income.

Please those who have said so to stop perpetuating the myth that you have to fill in a PIP or other disability benefits form based on the worst day
As others have correctly said it is how you are for the majority of days
If your worst days are 4 or more a week then that’s fine
if you have 2 bad days and 2 good days a week it is the 3 medium days that will count

That’s irrelevant, as the average is seriously inflated by a few very high earners at the top.

I live alone (in my late 50s) and manage on an income of £23K. I’m lucky in that my mortgage is paid off though and no other debt.

I cook from scratch, buy from Vinted, and really don’t spend that much day to day. Obviously bills and council tax are a big chunk but I do manage.

I'm pretty sure that I've read that advice from organisations that support people with disabilities and long-term chronic conditions to answer the questions about your illness and what you can and can't do based on your worst days, not your best ones.

OP you need to reapply for PIP. They tend to turn people down when you first apply by you can then appeal. It is definitely worth doing in your case as you have a long term health condition that affects man aspects of your daily life and ability to work.

Then you could look for some part-time, remote work. You could get reference from doing a volunteering job as there are volunteering opportunities you can do from home too and that will help with your job search.

I would make an appointment with your local Citizen Advice Bureau and they can advise you on benefit entitlement and help with your PIP claim.

Once you receive PIP you can also get additional support like cheaper Internet from some suppliers, a free bus pass and so on.

It is good that you have the security of a housing association rental.

You need to go back to your rheumatologist & ask for different medications, you need to find something that controls your symptoms better.
to the poster above who says you can’t work with RA- you absolutely can! I do.

You don't sound like you know what you are talking about.

The OP needs proper advice from CAB or a charity that supports people with her condition.

What you are suggesting is not how long term conditions work...you don't have a convenient, set number of good/bad or medium days.

It can be completely unpredictable and it also seems that the OP's condition is getting worse as she becomes older anyway.

@ShiteWithSugar Sounds grim for you. Please go to Citizens Advice and ask them to check what benefits you might be entitled to. PIP isn't the only possibility, and UC can be claimed with one of you working full time. They can also help you with the PIP claim, and with an appeal if necessary. You sound as if you should be getting something from the benefits system.

Just go for PIP - no reason why you shouldn’t get it. In older age you’ll get benefits and might even be better off than you are now.

It does sound like you’ve barely worked your whole life though (pre child/diagnosis), and your husband is 49 and only earning 30k. What has he been doing? People saying it’s average aren’t taking into account age - this is no where near the average salary of a person his age. He’s only 49 perhaps he needs to retrain and do something that pays more. If he also has a serious medical problem (haven’t seen you mention this but could have missed it) then he needs to claim the correct benefits.

30k in many areas of the country isn't a particularly low wage. Middle grade civil servants are only on 32. Obviously harder to keep two on one salary but it is doable but I think you will qualify for a littke UC because of your rent. If you can't work, you would need to submit fit notes and have a work capability assessment. Also, UC can't help you fill out PIP forms but can signpost you to people who can help like CAB or local disability organisations.

I can only suggest on the work front, have you thought about joining an agency? A friend does it, he does basic admin, reception work etc. It does mean getting to the work place, but he only accepts work on the days he is available.

I would re try with PIP and explain the variability and the frequency of the bad days. I would also speak to your rheumatologist. They are much better these days at adjusting your medication more often to make it more liveable with.

My Mum is in her 80s now but was diagnosed with RA in her 40s. She had to give up work and would spend large parts of the day bedridden. They eventually got her on to the right drugs and she became significantly more comfortable and still is now and she is no longer bedridden. Her medication still needs regular tweaking though. I tell you this purely to say keep going back to your doctor until they can get you the right medications and doses.

In terms of finances you will be OK. Tight, but ok.

Sorry to hear it is tough, are you in an area where you could improve your social life through clubs, groups, etc . Things like this can really help improve your health. Also meeting new people can help find employment or advice that can help your situation. Not had a look but can changing how your husband works improve your benefits situation, CAB and others can offer advice. Have you looked at side income which can be very flexible around your condition, eg reselling ,etc.?

Hate to say it but PIP is a game that is won by playing dirty- know people who train for their assessments, use AI to give their answers . Do what you need to get PIP and any other benefits before retirement age as you can't apply as a pensioner. The additional money could help with pension and even a much needed holiday.

It may be possible for the OP to find meds that work better than her current ones but, just as with any autoimmune disease, what works for one person may do nothing for another.

There are some very exciting developments in the medicines pipeline for autoimmune conditions though, so even if there's nothing now there may be in 5 years. That doesn't help with the OPs pension problem though.

Suggest

Check this

https://www.gov.uk/check-national-insurance-record

Suggest you check this

https://www.gov.uk/check-state-pension

Ask Citizens advice or a charity to help you complete these forms
Fill in as per your worst day

https://www.gov.uk/pip