Mum won't stay at the hospital for tests

[ArgggghhMum]

sorry duplicate as I posted on elderly parents, but no replies and I’m so stressed, so aibu to be so stressed with my mum …

Anytime my mum has to attend the hospital (at least monthly) she won't stay for tests.

Just off the phone with mum who apparently was at the hospital all day after the community nurse sent her there. Found mass? Shadow? on lung in x-ray , needs a CT but... Eh she's not bothered as her breathing is the same (terrible) as usual so she didn't wait because it means an overnight and they will send her an appointment soon.

Sometimes she won't even wait at a&e when referred by GP if it's 2+hours. And to be honest, it's always "fine" in the end up to now.

I suppose we have different views on risk. I find it impossible to deal with her as I know the next 2-3 weeks or however long it takes for the appointment will include her deciding she's dying of cancer , catastrophising etc. She could have just waited and had the test tomorrow

She was diagnosed with pneumonia last week, so maybe just that? But who can tell as NO TEST

Op I completely feel for you. Its incredibly frustrating when a loved one is ill but won't have the necessary tests etc. Please keep us updated, sending virtual hugs by the buckload x

Well she managed to stay put long enough for an x-ray, so although frustrating that she's acting erratically right now, it can't always be like this.

What sorts of things help you to cop? Because if your DMum had capacity (and you don't suggest she hasn't) she gets to make her own decisions no matter how wrong-headed anyone else thinks they are. And I suspect that if there was any way to persuade her to make different choices, you'd have persuaded her long ago.

So what remains is how you look after yourself through the frustrations of all this. Are you her only DC?

This is a big bone of contention between my husband and I, as he thinks she does not have capacity. I think she and I have not agreed on a single thing in my whole life, and her medical care now is no different.

@chantico hit the nail on the head, absolutely no consensus on anything, and I know she is disappointed about it, but I have to protect myself. She has so many conditions, but is still smoking cigarettes, has pile of sweets and cakes etc. she has fibrosis of her lungs, heart disease, diabetes , actually I probably could not list everything

And yes, I’m the only child, and her siblings and their family are far away

Unless she has been declared incapable of being in charge of her own healthcare, there is really nothing you can do. You are not being unreasonable to feel frustrated but she is a grown woman and can make her own decisions. If she is going to spend the next few weeks catatrophising, let her know what you think she should do and leave it at that. Empathize but don't engage.

This is so difficult, but I think you have to let adults make mistakes if that is what they want to do.

But equally those adults can't reasonably insist on total support from you. You are an adult too with your life to live.

I think this is where you give your opinion and step back. Perhaps let the doctor or hospital know but ultimately, it's up to her. People handle things differently. My dad wanted to know everything and had every test going, my mum is having here treatment but doesn't want to know the ins and outs of it. Perhaps she's sick of the poking prodding and nagging.

If you can find the capacity to explore it with her when she's in the mood then do so but respect her wishes.

I usually say 'mum, as long as you're happy with it I am but if you want me to ask any questions for you, or take you anywhere then let me know. It's ok to change your mind as well so if you do just say the word.'

You can tell your husband that making poor choices in a not an indication of lack of capacity. She is an adult and she can do whatever the hell she likes. Leave her to it.

An mca can be done around capacity of treatments and investigations
If a HCP believes and has done the assessments properly then she can be placed under deprivation of liberty (DOLS)
It's very difficult though and a grey area.
I've done a mca on patients and they can't retain or understand risk to their health.
Like I said grey area .
I'm an elderly care nurse specialising in dementia.

You have listed a whole catalogue of serious health conditions which she clearly chooses to ignore as far as possible by continuing with her lifestyle.
you don’t say how old she is but I’m presuming elderly.

Her long term health is unlikely to be good and she’s unlikely to change; no doubt you know that. It’s hugely frustrating for you and to a lesser extent the HCPs but there is nothing at all you can do.

Try as much as possible to step back from her choices and provide support in ways that don’t worsen her health but sadly she has chosen her path and did so long ago. She probably doesn’t want to hear the results from a scan or the advice that will go along with it so the easiest option is to not have the scan for as long as possible.

As per pp, you have to protect yourself from the upset. The one thing you can do is push it back onto her, because ultimately it is just attention seeking.

”Mum, we both know you have serious health issues which you are not prepared to engage with. You make whatever choices you are happiest with, I will support you in those.” and then never give it air-time or attention. Just “I understand you can’t breathe properly Mum, but it sounds like the discomfort isn’t at a level you want to do anything about yet. Anyway, I met Jenny for lunch blah blah blah.”
There must be zero Attention Cookies

Unfortunately making bad decisions in itself doesn't mean she doesn't have capacity. You can see it's the wrong decision, but she's got the right to be wrong. We went through similar with my DGM repeatedly refusing to be taken to hosp by ambulances called when she'd blacked out and fallen. So you have my sympathy!

How do you normally react to the catastrophising between discharge and tests? I'm afraid I'd rapidly lose patience and be pointing out calmly that if she stayed for the tests she wouldn't be in that position, so it's up to her.

I did have a relative who was terrified they had inoperabe cancer (it wasn't, thankfully), so they didn't go to the Dr for months because they were scared. Completely counterintuitive, but understandable that they just hoped it would go away. Do you think it might be something like that going on?

Broadly I agree with Theresa

You need to find ways that help you to cope, and minimising conversations about her health will be one way to do that. My stock phrase would be along the lines of "That sounds really tough, let me know when you're ready to let the doctors investigate properly" and then move on to something else

Make sure you're giving her time that you're able to give. Only let her encroach further if it sounds like a genuine emergency. Make sure you have enough time to do the things that you find fulfilling - it's dreadfully easy to get sucked out of balance.

Even if your siblings are too far away to be day-to-day help, keep them in the picture of what your DMum needs, so they really appreciate how much it is. Then if you ever need to buy in care, the amount needed won't come as so much of a shock. Also, idc I think it would be good if they could take over so you can have a complete break every now and again. So make the most of when they visit to get them to see what needs to be done, and start having the harder convos about care.

Also, at some point get a health LPA (probably just for you as you're on the spot) and finance/legal affairs for all siblings

Sorry - I've been the voice of doom, including both her stubbornness now and her possible longer-term needs, which I mentioned because tackling the practicalities can, I think, give the structure for you to find the balance that helps you cope.

Also, remember that your DMum is probably scared, and it is fear that is leading her to act like an ostrich. Yes she's being exasperating, but perhaps what she's craving is gentleness

I strongly recommend you detach yourself from her medical problems and if she wants to offload her health anxieties onto you, having made the choices she has, say something along the lines "I'm not going to discuss this until you've had the CT scan" (/or whatever she has chosen to wait for rather than have straight away) or "If you are concerned about this you can take XYZ (appropriate action) but I'm not going to discuss it with you now".

I wonder if she refuses investigations or following up on her health problems because she enjoys the attention you give to her as a result of the uncertainty and anxiety her choices produce. So I would really stop providing any attention at all, positive or negative. Just refuse to talk about her health so long she refuses to address it appropriately. Better for you both.

You are her relative not her keeper, and it's medical professionals' job to assess her capacity, not yours. Disengage.

I expect if you really think about it there is a broader pattern of her parentifying and overburdening you. Free yourself! Get your husband on board so that he is not guilt tripping you.

I find it impossible to deal with her as I know the next 2-3 weeks or however long it takes for the appointment will include her deciding she's dying of cancer , catastrophising etc. She could have just waited and had the test tomorrow

You need to be a little totally all about you when she starts this.
Mum I am not talking about this you had rhe option of having the tests when you were in hospital but choose to have an appointment on X date. I will attend with you on the day but I am not listening to specualtion for the next few weeks.
And tell her you will hang up if she insists and hang up.

Some of this is attention seeking but some of it is a fear of the hospital. I would contact her GP see what they recomend there is little point in her turning up to A&E and then been processed just for her to walk away.

As she has complex needs has she been referred to a geriatric team?

In some cases as the team are able to take an whole person medical assessment they can schedule a lot of tests to happen on the day of her appointment or block book them before the next appointment. And they look at her mental health and general care needs so she is not ending up in A&E to begin with.

Good luck🌻

Thank you everyone for the responses, a lot to deal with and work was manic today, but I need to find time to read them. Lots to think about.