Refusing medical help

[LittleRayOfSunshine61]

Hello all,

I guess I'm looking for some advice or just to rant or something. I'm not quite sure. Be warned, it's going to be pretty lengthy.

My mum is 62 and has never been a big eater but has always been a drinker for like ever. Now don't get me wrong she never touched alcohol until 7pm and always went to bed at 10pm. But drunk plenty.

Anyways for the last 3 month now she's eaten nothing. Like nothing. We've been to the GP. She's had camera down and up. Ct scans and also MRI scans. During the wait for these results she stopped drinking alcohol as she couldn't stomach it as she wasn't eating. And her body was starting to give in. She was struggling to walk and when she did she'd need to lay down for half hour. She then made a joke about using my little ones old potty in the kitchen so she wouldn't have to climb the stairs. Then she started acting confused and asking what day it was 100 times and that she wanted to go out and buy this gift which was for my nephew 10 years ago.

So took her back to the GP and told them about her struggling to walk and her memory. And was this now starvation or malnutrition and would they now intervene and do something?

They weighed her, took her blood pressure, talked to her and told me she had only lost 2lb since her weighing in August and her blood pressure was the best it's been in years and all her results were clear minus scarring on her liver from years ago.

They told us she needs to see a dietician and be put onto those build up milkshakes and that they wasn't concerned for starvation as her stats were normal. I asked how could this be when the last thing she's eaten was September? Doctor basically told me she was either secret eating or the milkshakes and cups of tea she drinks were making her survive.

Anyways, not even 1 week on from that appointment, my mum cannot walk at all, cannot wipe her own bum, hasn't got changed in a week, has not had a bath. She's refusing help with it. And we said enough is enough and attempted to take her to the hospital, she's point blank refused treatment and when they assessed her, they have said that she's sound of mind and they have to listen to her as it's human rights. I argued with them and told them what I'm telling you now and they've basically said she has to do it on her own accord or be sectioned...

We've tried everything to help her. Electrolyte drinks, vitamin drinks, build up shakes, soup, mash potato, bananas. Even baby food. She has them for 2 days and then she refuses. She is dying very slowly and painfully. I'm frightened that my 3 year old may find her dead.

We've tried talking to her, shouting at her, crying at her. You name it We've done it. I work full time and have a 3 year old. It's so hard. So I suppose the question I ask is..

Has anyone gone through something similar where their parent has refused to go to hospital and somehow has managed to get them there?! If so, what advice would you give?

If you managed to read it and make it this far. I appreciate it. Thank you. Have a lovely day. X

If she has been assessed as having capacity there is absolutely nothing you can do.

Talk to your mum and accept her decision. Ask her about her wishes for her future, further medical treatment, resuscitation and funeral plans.

If she wishes you could help with DNAR and RESPECT forms so she can set out her advance wishes and they can be respected.

My mum followed a very similar path finally getting her wish a few weeks ago. It was very hard for me but I respected her wishes. I'm so very sorry you are facing this situation.

My mother in law stopped eating, but she was 84, she was living off sips of water for around 4 weeks, she was virtually bed bound. We had the GP out who said she had a urine infection and prescribed antibiotics which she wouldn’t take as she had to take them with food. We called the GP out again as father in law was trying his best to look after her but despite them making the appointment the GP cancelled. Then we rang for an ambulance who took one look at her and said she needed to go to hospital. She was in good form for the first few days, but it was clear they couldn’t get her to eat and within 5 days she had to have a drip inserted. Unfortunately she died 10 days later and on her death certificate the reason for death was anorexia. She was also assessed by the mental health team, but she was charming with them insisting she would try and eat, she also refused to have a scan.

I can only assume your Mum is getting some nutrients from the alcohol, as there are calories there, but it would seem that she does have some mental issues with food, but I don’t know what the answer is, we couldn’t help my MIL.

https://www.niaaa.nih.gov/publications/brochures-and-fact-sheets/wernicke-korsakoff-syndrome
alcoholic encephalopathy
I’d push for a proper work up
sadly recovery can be long (and often futile).

Were you with her when the doctor told her these things or has she just reported to you what the doctor said?

My first instinct when I read this was that the doctor has told her that she has something terminal and she doesn’t want to tell you but to pass under her own terms. Particularly with the rapid decline.

Not quite the same situation by my DF went to the GP with a swollen neck per him. He was diagnosed with throat cancer after an appointment with ENT (who put the camera down there and then). At that point he seemed hale and hearty but within 2 weeks he had lost the ability to follow a conversation and was incontinent and 3 weeks after diagnosis he died, the cancer having obviously spread quickly to his brain. Your mum’s sudden decline over the last few weeks sounds a bit familiar. I am sorry and hope this isn’t the case.

StopGo - the thing is, we have had this discussion. Everytime we bring up funeral plans, will, forms and everything, she's in total denial and tells us to stop being dramatic and morbid. She's not dying she's just got the flu. It's so difficult. We respect everything she's saying but we just don't want her to die right now, with her still being young. I'm sorry you went through that. It must of been devastating. It's not easy. We all know it's going to happen at one point but it never makes it easier. But thank you for taking the time to reply. Means alot.

Mindymomo - oh my, that sounds awful. You poor thing, having to go through that. It does sound very much similar to my Mum. Just the age is different. Now, if she was in her 80's I probably would accept it a little bit but because she is still so young I want her to fight. It could possibly be too late for her. My mum charms the doctors all the time and they fall for it I tell them it's bull. She always tell them she only drinks 1 or 2 glasses of wine a night and I'm like bottles not glasses. But she's not touched a drop of alcohol for way over a week. The calories are coming from the milkshakes I believe. She's having full fat milk in her tea and her milkshakes. And she's still taking her vitamins. Which is odd. I'm sorry you had to go through that. It's awful. Thank you for your reply though. Means alot that you've taken the time.

Katrinawaves- Yes, I've been to every appointment. I make sure of it as my mum can charm doctors and does tell little white lies. I couldn't believe it myself when I saw the scales. I was the one who converted it from kg to stone. So I know she wasn't lying. We all thought stomach cancer or something similar. Even the doctor was convinced at the first appointment. But all scans are clear. Bloods are clear. Camera biopsy was clear. Other than having extremely bad acid reflux she has a healthy stomach and bowels. So we do generally believe that it is an unhealthy relationship with food. I'm sorry you had to go through that, there is nothing worse than the c word. I dread it. Thank you for your reply. Means alot.

@LittleRayOfSunshine61 I faced that brick wall as well. Sadly with my mum she 'cried wolf' too often and Drs, nurses etc disengaged from her. I truly understand your distress and confusion.

Finally convinced her to go to hospital. Ambulance will be coming shortly. Fingers crossed it's not too late or nothing too sinister.

Thank you everyone 😊😊

I wish you and your mum all the best @LittleRayOfSunshine61 I really hope they find some effective treatment at hospital and that this is a turning point for her. You sound an excellent daughter fighting for her health. 💐

This has stuck so many bells with me and my family and not eating, the rapid deterioration.
When you get to the hospital ask about possibility about wernicke-korsakoff syndrome.
Really hope your mum gets treatment she needs.

@iamyourequal thank you so much for your lovely comment. My mum seems to be getting a little better. It will take time and effort, but she's finally in the right place.

@foodtoorder - omg, wow. I was really thinking that the 😕 was dementia as both grandparents died recently of it. This syndrome sounds exactly like her condition. I really appreciated this and I shall ask the hospital today.

@foodtoorder - My sister has told the hospital this morning, they've referred her for brain scans. So thank you so much for this. Xx

@LittleRayOfSunshine61 hope you see an improvement. Atleast she is being investigated and looked after.

Hi OP. I hope all is going g as well as possible. This reminded me of both my mum and my dad.

My mum started eating almost nothing. That turned out to be oesophageal cancer (though it took the GP a long time to find it. An endoscopy finally revealed it). My sister and I actually did begin to think our mum had an eating disorder, but now I suspect she was just eating things that were easy to swallow (ice cream etc). My dad had Korsakov's syndrome, due to alcoholism.

I hope you can make some progress and that things become easier for all of you

Oh dear OP. That's is really hard to go through.
My thoughts would be alcohol induced dementia but who knows. 🤷‍♀️
I hope you are both ok.

Hope you both figure out what's going on OP must be difficult🤍

Thank you everyone for you lovely replies.

A Little update. My mum is still in hospital. She's had a blood transfusion due to her HG levels being extremely low so they expect a bleed somewhere. She's had a full body MRI, camera up, camera down and some other tests. They've found some activity on her brain that they were concerned about and mentioned onset dementia. Her colon is white and its meant to be pink so they're investigating that but other than that everything is clear. No bleeds anywhere. No cancer anywhere. No clear signs of anything. Her blood levels are good and back to somewhat normal. Her blood pressure is very low and been low for a few days now, that they'retrying to sort out. She's still not eating and her mind is out of this world somewhere but she's getting stronger and her movements are coming back. She can get off the bed and walk with aids. So massive improvement there. She had a CT scan on her brain today which is fully clear. No signs of anything, yet the MRI showed some sort of dementia activity. So they're going to do another MRI but just on the head. And now they're going to test the pancreas and her thyroid. Poor woman doesn't know whether she's coming or going. They don't think she will be home for Christmas or the new year for that matter. But as long as she's safe, getting looked after and will get some what better then it'll take as long as it takes.
Hope everyone is keeping well and is ready for Christmas..I have a 3 year old so I've got to try and keep the magic alive for her.