Mum refusing medication

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My mum has recently been diagnosed with rheumatoid arthritis. She absolutely refuses to take any medication for it. She doesn't trust doctors and lies to me about what they have said to her (e.g. she said they told her she should stop a course of steroids as soon as she felt better and not finish them - she only took them for 2 days).

I'm just at a loss. Do I need to accept this as her belief that she does not want any medical intervention or do I need to try and gently encourage her?

She just says she doesn't want substances in her body, she looks up medications on Google and says that she doesn't trust them because of what people say.

She smokes so it's ironic because she's happy to have that in her body - I simply can't understand her view. She's only in her 60's so could have years of reasonable health left if her condition is managed properly. Her intelligence level is fairly low, I'm not saying that to be nasty but it is - I think she doesn't fully understand that what she reads online needs to be taken with a pinch of salt.

Also just FYI this isn't really a cultural thing - the rest of the famiily would normally follow medical advice. It's just her.

It is tough to see a loved one in pain or making wrong decisions, but, she's a grown woman who has made her choice. She is the one who has to live with the arthritis. Let this one go.

Why are you so bothered,if the pain bothered her that much she would eventually give in and try the meds. Steroids come with major side effects hence why they are used for a short time only as a last resort treatment.

How are you not more worried about her smoking?

What do you mean, why I am I so bothered? It's my mum. And I doubt that she will take them. It's already very bad and she's very stubborn.

Obviously I'm worried about her smoking, which is probably the main cause of it. But there is advice all over the place on how to stop smoking and how to support your loved one with that. It's a constant uphill struggle and actually very distressing.

This thread is about how best to cope with the medication refusal because that is something that is harder to find opinions/ advice on.

A lot of the medications for rheumatoid arthritis have quite strong side effects.

One of the principles of medicine is consent, and many people do choose not to have treatment for illnesses/disease.

A neighbour of mine chose not to have any treatment for cancer and as a result (probably) died much younger than she would have done.

Realistically your mum is probably scared of doctors and scared of being ill and is burying her head in the sand.

However, if you are saying she took the steriods but didn't finish the course, sounds like she is seeing the doctors and doing at least some of what they suggest.

I have RA and to be honest would take absolutely anything to ease it and the associated symptoms. I am quite happy to describe for your mum's benefit the double knee replacement that I had to have as a direct result of my RA. Earlier medical intervention may well have stopped the necessity for this.

Also, I gather from my rheumatologist that smoking is one of the main environmental causes of RA.

I have a relative (my uncle) who refused treatment for a condition and died younger as a result. It's distressing for the family but it is 100% her decision.

Do I need to accept this as her belief or do I try to gently encourage her? I thing you can do both.

@Tezza1 Thanks for sharing and so sorry to hear that, that must have been so difficult for you. Do hope you're OK now and your knee replacements went well. I do worry that the same/ similar will happen to my mum. As @Octavia64 said she is probably burying her head in the sand because she's scared.

I just feel really helpless. It's like I can see the path ahead of her and I know it could be less horrible than it currently looks if she would take medication and stop smoking - but she doesn't have the willpower to stop smoking and she won't let doctors/ western medicine help her.

Do I need to accept this as her belief that she does not want any medical intervention or do I need to try and gently encourage her?

I understand that you must feel very worried & frustrated. It’s not mutually exclusive- you can do both of the things you suggest. I suppose the question is, would your mum dig her heels in the more you suggest medical intervention?

Yes, the knee replacement went reasonably well, and helped a lot with pain and mobility, but I am now unable to climb more than a couple of steps at a time and there must be a handrail. Everything incIuding the toilet seat, car seat and my bed must be organise so that my hips are higher than my knees. My recliner has to be motorised. I'm looking for a hotel for Christmas and want an oldish style hotel. However, it must have lifts and accessible showers, and I didn't start looking early enough to have a huge choice. Plenty of modern ones, but I don't want that. However that's all due to RA, not the knee replacement.

Anyway, it's fine, but let me be a warning about the joint damage that may occur if your mother doesn't actually take precautions. Mine is on the severe side with multiple joint issues. Your mum's may well be much milder. Someone I know with RA is off on a six week bus tour of Europe which also means two 24 hour flights.

@noworklifebalance That's exactly the problem - the more I encourage it the more she runs away from it. Every time I talk to her I have to try really hard not to get frustrated and say 'well if you just took the medication....'

@Tezza1 I will definitely share with my mum - when she is in a receptive mood ;) One of my parents' favourite things is their yearly holiday abroad, they just go to a resort in Spain, but I know she would be devastated if they couldn't do that anymore.

Thank you so much for this and I really hope you find a suitable hotel and enjoy your Christmas!

Does she actually understand that it's not just pain? That the ra is attacking her joints and damaging them? My neighbour has ra and has had 2 knee replacements, a shoulder and a hip and she's on medication. Without the medication she'd be in a wheelchair.
My mother is similar to yours , it's like she freaks out when diagnosed with something and buries her head in the sand.

@romdowa I don't entirely know what she understands to be honest. Her intelligence has never been high and she is quite superstitious. Sometimes she says things like 'hmm, well, doctors aren't always right, and maybe I would trust a different kind of doctor' - I think she means like a shaman or something.

I mean I do get it to a degree, putting substances in your body is scary, but I don't think she understands that Western medicine is evidence based and doctors recommend certain things for a reason.

If some kind of shaman/ witch doctor said they were connected to the spirit realm and recommended these herbs, she would take them.

Sigh.

(I don't mean to be dismissive of those who believe in spiritual things... just that I would like her to give Western medicine a chance as well!)

Is it a fear of getting older and not wanting to give in or admit this or is it that she has read the possible side effects and is worried about them. My DM is similar, although she has agreed to take a particular medication she does nothing but grumble about it and blames every little pain and niggle on the fact she has to take this medication. Perfectly happy to continue to smoke though and then protests about taking medication which is putting chemicals in her body. You just cannot win

I would shut down any conversations she starts about her aches and pains etc with 'I dont want to hear about it when you know there is help but you don't want to engage'.

Is there a doctor she does trust? Like her gp or even the practise nurse? My mother will listen to her gp about things

Oh God, that so awful. My DM has rheumatoid arthritis but she was first diagnosed over 40 years ago (early 40s so quite young). The new medications are bloody marvellous compared to what she had in the early years.

She is in "remission" now with her medications, but the damage is done. Her fingers are so twisted she can barely hold anything - they point over 45 degrees to the side and are swollen and stiff. Her toes are similar, joints swollen, has specially made shoes. She walks with a walker and her balance is so bad that she has fallen and ended up in hospital.

She can't have any operations because that would cause the RA to flare up again and undo whatever the operation fixed.

That is the future your mother could face if she doesn't take her medication.

If you Google rheumatoid arthritis images maybe that would shock her into taking the medication?

Why are you mocking your own mother? When it comes to a point where she cant do without medications or steroids she will take them.

I know 84yr old with RA- sometimes gets aches but does not take steroids or daily painkillers and does all shopping by foot and carries her own bags takes care of pets etc. She too has been offered meds but has not wanted to take them using diclofenac etc occasionally

My husband has RA affecting his knees, he dosent take painkillers as he can take only paracetamol due to cardiovascular problem and even that he uses perhaps a few times a year and chooses other treatments first- supporting sleeves on joints, horse heat treatment gel i buy mainland europe (sold in chemists as sports people use it as well),hot baths etc- works for him to get over the worst days.

my mother was one of the people who rolled her sleeve up for an untested injection in a car park a couple of years ago- didnt think to mock her foolishness then or now when she suffers side effects from it.

Yes very similar by the sounds of it. The only thing my mum will take is Naproxen for pain relief. For some reason that's OK but nothing else. Even statins for blood pressure she has a massive issue with (she's overweight and has high blood pressure too).

I think it is a bit of both of the things you say - she's had massive issue with medications that have hair loss as a side effect for example (she's quite vain and really struggles with that). But also she Googles everything relentlessly until she finds things that support her view not to take them.

There are side effects which are a concern but my view is they are for the most part nowhere near as bad as what the RA will do if left. It's like she is just short sighted and not thinking of the future.

It's just so frustrating when there is a simple thing that could ease it all so much.

@Bingbangboo64 I am expressing my frustration and venting on an online forum which is absoolutely harmless and she will never see. I'm not mocking her and you know nothing about our relationship. It is a very difficult situation all round and I'm upset and frustrated by her behaviour.

OP.
I can see how frustrated you are. You are not mocking, you are bothered, you are getting a hard time here.

There is nothing that you can do despite how much you want to do and are obviously trying to do for her.

This is her very unfortunate decision and choice.
Ultimately it will impact on those around her.

Not everyone accepts medical advice, many kind pp have given examples of this.

Just strap yourself in for a very difficult, upsetting future and accept her wishes.

I wasn’t able to distance myself from my relative with similar views because they needed care, support and help, so I did what I could right up until the bitter end.
It was extremely traumatic and distressing.
They did it their way I suppose.

I never entered into conversation about it but made it clear very early on that I wasn’t comfortable with their choice.
It made a more harmonious relationship and we just “got on with life” as hard as it was.

Good luck OP, I get you x 💐

My DM also has an issue with statins, I think there has been a lot of mixed stories in the press which has caused this reluctance. In some ways I can see the idea of a pill for every ailment and then pills for the side effects being a slippery slope, GPs are very quick to dish out medication as they do not always have the resources or the time to spend investigating alternatives. It is also an issue of control and wanting to be in charge of your own body and I do get that.

Her body - her choice. Point out the pros and cons and leave her to make her own decison.

The flipside of this is you don't have to listen to her moaning about her aches (and I say this as someone with an autoimmune condition). Change the subject every time. I don't think you advocating for medicine is helping, and it might be making her more entrenched, so changing the subject might be easier for you both. "Gosh my hands hurt today" "Yes, that's a shame. How about the weather we're having?". If she pulls you up on it, you can then say that she has been given choices that help her (though TBF, I will never take steroids again; they wrecked me physically and psychologically), and that you respect her choice not to take them, then change the subject again.