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Mum refusing medication

36 replies

cloudcs · 29/08/2023 05:26

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.

OP posts:
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cloudcs · 29/08/2023 09:49

Soontobe60 · 29/08/2023 08:25

What makes you think that smoking causes rheumatoid arthritis? Did you read that online?

Smoking is a well known risk factor for RA.

OP posts:
cloudcs · 29/08/2023 09:47

Thanks everyone. I do of course understand the need for bodily autonomy and absolutely want her to have control and will respect her wishes at the end of the day. I just think she is a bit misinformed and in denial.

She is so stubborn that it seems like there's little chance changing her mind until it's too late. I can just see her hurtling towards a world of pain which could be reduced/ prevented, and when it hits it will be too late and she will have regrets.

I fear you're right @OHVanessaShanessaJenkins and I probably just need to prepare for a rough ride. I'm dreading it :(

OP posts:
Ponoka7 · 29/08/2023 08:52

My DP came off his arthritis painkillers because of the breathing issues they were causing. I'd only take steroids as a last resort because of my experiences of them. If she is overweight could you join in looking at natural ways, such as exercise, what to eat and supplements that she would take? If you can still exercise it does wonders. The thing with people who had belief systems in shamans etc, they didn't abuse their bodies in the way we do. Rather then preach at her, when she does complain perhaps go down the natural suggestion route. There's nothing wrong with eventually saying "I don't want to listen if you won't do anything to help yourself". If she has capacity, she has autonomy over her body, even if you judge her intelligence to be low. I've seen medication refusal from all sorts of people. You've just got to remind yourself that you like being in charge of your own body, so even a parent has the same rights.

Wednesdaysotherchild · 29/08/2023 08:38

I’ve got one of these - she has osteoarthritis and it sounds like heart issues (she is vague on what the Dr said) and won’t take anything. Garlic tablets cure everything apparently. She’s always been like this though - no vax for me as a kid, she even binned her anti-biotics and painkillers when she had a C-section with me. No painkillers despite walking being painful. She will go on her own terms and tbh it’s her choice - she has capacity. I’m done wasting my energy trying to persuade her!

Elphame · 29/08/2023 08:35

She has the absolute right to refuse treatment and you need to accept her choice.

ShellySarah · 29/08/2023 08:34

I went through some very similar with my mother in the last couple of months. Wouldn't seek help and buried her head in the sand. It was cancer and now untreatable.

I told the consultant how she refused to seek help and she said she's an adult, it's her body, she made her choice.

It's hard but you have to respect her wishes.

Londonnight · 29/08/2023 08:31

Rheumatoid arthritis is just awful My 85yr old mum has had it for around 40 years, and she is in constant pain even with painkillers. She is on high dose medication for it and has been for years. Her hands are so twisted now she cannot hold a knife or fork.

I can guarantee once the pain gets really bad for your mum she will start to take the medication. The longer she leaves it, the more damage she could be doing to her body. Medication has come a long way since my mum was first diagnosed, so it really is worth taking. But only your mum can decide if and when she does that.

HelpMeGetThrough · 29/08/2023 08:28

Soontobe60 · 29/08/2023 08:25

What makes you think that smoking causes rheumatoid arthritis? Did you read that online?

It's not strictly true it causes it, but my Rheumatologist has said that if you have RA and smoke, it can make it worse, especially around it being nodular.

Soontobe60 · 29/08/2023 08:25

What makes you think that smoking causes rheumatoid arthritis? Did you read that online?

HelpMeGetThrough · 29/08/2023 08:23

If and when it gets worse, she will certainly want to take something, even if it's just for the pain.

I have it and at the moment it's out of control and the pain is intolerable. I'm on a cocktail of drugs and live on over 200 codeine per month and it's not touching the pain.

EmmaOvary · 29/08/2023 08:09

This is so hard, OP. My dad was the same. Refused to see doctors even when he clearly had prostate cancer symptoms. By the time he was diagnosed it was no longer treatable. Some people have incredible cognitive dissonance when it comes to their own health - my dad also smoked. All you can do is try to gently educate but ultimately accept that it is her choice. No matter how stupid you think it is.

CallItLoneliness · 29/08/2023 08:05

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.

ruby1957 · 29/08/2023 07:59

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

SilverGlitterBaubles · 29/08/2023 07:54

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.

OHVanessaShanessaJenkins · 29/08/2023 07:54

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 💐

cloudcs · 29/08/2023 07:48

@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 posts:
cloudcs · 29/08/2023 07:41

SilverGlitterBaubles · 29/08/2023 07:00

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 Confused

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.

OP posts:
Bingbangboo64 · 29/08/2023 07:40

cloudcs · 29/08/2023 06:52

@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.

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.

OrderOfTheKookaburra · 29/08/2023 07:24

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?

romdowa · 29/08/2023 07:19

cloudcs · 29/08/2023 06:52

@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.

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

nonamesavailable123 · 29/08/2023 07:09

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'.

SilverGlitterBaubles · 29/08/2023 07:00

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 Confused

cloudcs · 29/08/2023 06:54

(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!)

OP posts:
cloudcs · 29/08/2023 06:52

@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.

OP posts:
romdowa · 29/08/2023 06:41

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.