What happens with rheumatoid arthritis?

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My mil. Has it and fil is exhausted looking after her. I believe she can’t move without pain and can no longer get in a car, I think she can shuffle with a walker. We haven’t seen them in 3 years as they don’t want to risk covid.
inspired by the dementia thread about how do people actually die with dementia, can anyone help with what happens with RA?
the live 6 hours drive away and don’t want anyone in the house. It’s just awful. I don’t know how to help short of phoning, that seems not much really.

Can you contact social care in the area and ask them to do an assessment ?

They’ve done all that. It’s just that fil. Is doing all the care, wiping bottoms etc and lifting. He’s 84. She’s always in pain, they yell at each other of course. It’s insane.

Has FIL had an assessment of his needs as a carer?

I’ll find out, thank you. Would that be through the gp? I think they may have been offered some sort of help but turned it down as they think the helper wouldn’t cope with mil being dizzy, slow. It all sounds bananas. Mil had to hire a private ambulance to get to the dentist. As I’m typing the whole thing sounds insanely mad. They just say it’s ok we don’t want to discuss it, but I suspect fil must be at breaking point, he’s been her sole carer for years, before covid.

There's help out there but they have to be prepared to access it, and dare I say likely pay for it. This is often the sticking point for older people, though it's surely what any savings are for.
Instead many often struggle on until a crisis develops, a fall, a head injury, a broken hip, a death or illness or hospitalisation of the carer, then things are taken out of their hands.
They need to contact social services for an assessment. But unless they're willing to source private carers or let people in the house they carry on.

Thanks, I’ll pin mil down today and find out some facts. They are both terrified of fil. Being I’ll/ catching flu let alone covid or anything else. It’s obviously not sustainable and very scary. The daft thing is they moved 6 hours drive from their friends and grandchildren, and us, for some wierd idea that they wanted to go back where they were born. They could have so much help if they lived here, it’s heartbreaking.

About the 'weird idea'...

I too have that longing. That said, we're in a different position, there will be family and a friend there and we don't have support where we live now. We encouraged one adult son to move in that direction and the other adult son might come with us, when we go. We'll be young enough to make new friends and community contacts, too.

It's a powerful draw. When DM was dying, I heard the familiarity of the accents of the people around her and thought 'home'. That's what I want for myself. The shape of the landscape is 'right', the weather is 'right'.
Just in case that helps you understand the weird idea!

Thanks pickleme that helps me understand. And I know fil never felt settled here. Just annoying that we moved here to be near them! And I think they mil has relatives there, but they are the sort of remote cousins that visit once in a blue moon out of obligation. We and there mates often say, if only..we could help…they’d enjoy…
its so sad, but I guess it’s what they wanted. No one can understand why!
im glad you will have sons and will make friends.

This might be a daft question but is she seeing a rheumatologist? With chronic conditions like RA, medication that previously worked can become less effective, but there are lots of medication options and some new ones too, if she's no longer under rheumatology, can she get her gp to refer her? It can be hard to manage but it's worth trying different meds if they can lead to some improvement in mobility and/or reduction in pain.

This.

What medication has she actually tried?

I have lupus and the medication is very similar - there’s things like methotrexate, mycophenolate, hydroxy, all sorts. And they’re not painkillers- they reduce the amount of disease activity in the body. Often as people get very elderly they tend to get forgotten about in terms of new treatments but they should absolutely have the same right to treatment as everyone else. I wouldn’t accept being in terrible pain with something fairly treatable at any age.

This website is very good-

www.versusarthritis.org/

www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

The problem with MIL's RA is likely not that she doesn't have access to new treatments, but that due to her age she developed it before all these new treatments were invented and has horrendous irreparable joint damage as a result.

Very occasionally I will see an elderly person with pain due to a big flare of RA, but it's much more common to see RA that isn't active but has left a legacy of deformity, damage and chronic pain.

With RA modern medicines can usually get it stabilised, but they cannot fix the damage already done. However at her age there is likely to be additional illnesses such as osteoarthritis and arthritis. Perhaps even diabetes (some medicines will have caused this in the past, they did for my DM).

The heavy medications will make things like kidney damage and liver damage more likely, and of course the lack of mobility and fitness will make things like high blood pressure and heart problems more likely as well.

The caring duties are onerous. We're in Australia and we couldn't cope with the external assistance. A carer coming in 5 days a week in the mornings to shower and dress her. She has a walker and if we take her out (rarely, most people come to her) she needs a wheelchair. She has massage, Occupational therapy, cleaner and additional shopping assistance, once a week for each of them, plus gardening help. But she is getting less mobile and I can't bare to think what will happen when she gets bed bound. She's hoping she doesn't live long enough for that to happen.

Cope WITHOUT the external assistance....

I have a friend whose parents are in this exact situation. They moved back to Yorkshire - a very ling drive from friend who lives down South where the family moved when the kids were teenagers.
The mum was diagnosed maybe in her 40s. Dad was against medication. I think 30/40 years ago there was very limited medication (in the last 15 years lots of effective drugs have been developled).
Dad has been fully responsible for mum's care since then. They argue a huge amount. She is in constant pain and he has to do everything.
My friend hasn't seen them since pre-covid and in any case I don't think they have any spare rooms.
The parent definitely need more help but I think they are reluctant to access it - they always put barriers in place. I wish I had useful suggestions but my friend gave up trying in the end as every suggestion was thrown back by parent on repeated occasions. Of course, at some point it will become to hard to deal with and then I anticipate mum will end up in a care home.

Thanks everyone, this is giving me more of an idea what to ask, they don’t like to say, and like on garysmum post, put up barriers.
all I know is mil didn’t take medicine for a long time, preferring turmeric etc. she was also sure that she had limes disease and the cure for that works against ra cure, I be,ieve. She has absolutely damaged joints and is in constant pain. And has osteo arthritis too.
I believe she last saw a reuhmatologist a few years ago, I’ll see what I can find out, but again, they prefer not to talk about it.
I’ll find out what I can, but I’m not at all sure how I can help.
thank you for sharing your stories with me, massive hugs to everyone it’s such a hard thing to go through. 💐

Hi everyone.I have been having burning pain in my knees and elbows.My gp did a blood test and everything came normal except esr and ra factor.Esr 26 and ra 15.I am having another appointment with him tomorrow to discuss the results.So I have been Google it and I am depressed.Has anyone know anything about increased risk of lymphoma in people with RA?I am really anxious person.Please help

It's a tough one.
If she has joint damage, medication isn't going to fix that however she should be able to access pain meds and meds to reduce further damage. She also probably should also try and see an occupational therapist.
They can often suggest equipment and aids that really help with everyday life. Slide sheets and seat swivels can help with beds and cars.
If she can access hydrotherapy that also may give her some pain free time which will help with her moods (it's exhausting being in pain on top of the fatigue that comes with RA.
I've had RA for more than 20yrs and have been through some tough times and better times and I think that there is good care out there and help available but unfortunately you do need to shout to get it. I suspect more so if you are older to avoid it being dismissed as 'old age'
Even with joint damage getting the right orthotics and supports can help with pain and movement. A year ago I had serious foot pain that limited my ability to walk due to damaged toe joints, new orthotics and shoes have greatly reduced that and now I only have intermittent pain and can walk again. The damage is still there but it's now supported correctly.

Sorry ultra123 I’ve no idea, good luck with the gp to,orrow, I hope it goes well.
wonky legs thank you I’m sorry you are going through this, it isn’t easy, you sound like a strong person that’s for sure.
im not sure she’d be able to get hydrotherapy if she needs to book an ambulance to go to the dentist.
I’ll find out more, today when I called was obviously a bad time.
sending love and healing vibes, for what it’s worth, to all.

She needs actual drugs, not turmeric, and if she's not seeing a rheumatologist for years at a time, she's not taking anything.

Nobody should be enabling her to self diagnose Lyme disease as an excuse for not getting treated. She needs to see a doctor asap, this is an inflammatory condition with a wealth of great treatments. The osteo is what happens when you carry on with inflamed joints and bullshit herbalist nonsense. One course of steroids would feel miraculous to her.

Thanks I found out she’s taking sulfasalazine and hydroxychloroquine which is one used for malaria (?) the side effect is muscle wastage so she’s thinking of stopping it. I think the muscle wastage is because it’s so painful to move and she’s so stiff she has never excersises even when the doc said to.
she said she’s on the waiting list for a physio but it’s no good.
they are finally hopefully getting someone in a couple of afternoons a week to give fil a break. Even then she is saying there’s no point because it’s taking something like 4 hours to get her showered, dressed and downstairs.and a helper can’t do that. Sounds utter hell.

She shouldn't stop without the advice of a rheumatologist - she risks everything flaring up even worse.

Basically she needs a rheumatology review - options may be limited if she already has permanent damage, plus physio - and to then actually do the exercises.

Thanks for this. I found out her rheumatologist moved so she is under a staff nurse(?) at the rheumatology department. It’s like pulling teeth to find out this much. No idea what I can do to help. I’d like to talk to them but will need permission, tricky!

I’ll tell her not to stop without advice though, thanks for that.