To try and remove my DM from hospital

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My elderly DM has been losing her cognitive skills, and mobility has been deteriorating for a while with several falls she has also been experiencing hallucinations.
We has a family where not sure if she was developing dementia and was hoping a MRI scan would confirm what it is..fast forward she has had the scan which has shown a slight bleed and a small tumour, her own gp recieved the letter detailing the findings and told us to take her to A and E which is what we did.
She has now been admitted to hospital but this hospital isnt specialised in neurology and so they are liaising with a hospital that is who said that they want her to have another scan then she will see them as a outpatient.
We have read up on the type of tumour she has and it can apparently cause dementia type symptoms so we are no closer to knowing what is exactly causing her decline as one doctor shrugged his shoulders when we asked abt this and it isnt clear on exactly what the plan of care is for her. In the meantime whilst in a unfamiliar environment she is going downhill mentally and in her mobility and I feel we may lose her altogether or she will deteriorate so much that there is no point of return.
They have discovered a urine infection and are treating this and wish to see if this makes a difference but we know as a family that she was showing symptoms when that was clear.
We know the hospital are concerned that she lives on her own despite the fact we are always going in but at least in her own home she knows the surroundings and was still functioning to a extent and loved attending to her pets which gave her joy in life.
We are prepared to accept a care package for when she goes home but in the meantime I want her out of there.
What would you do.

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if she's on oral.antibiotics for the UTI then I would say yes.

I am sure they wont keep her longer than necessary.
have they set up care package?

Are they otherwise looking after her? Would you be able to stay with her 24/7 if she went home until a care package is in place?

Hospital stays in themselves can exacerbate dementia as well as cause what's known as hospital delirium, which could account for her being worse while she's there.

But oral antibiotics can be taken at home in her own environment.

Problem is that I work as well but we as a family are going everyday.
She herself keeps asking to get out of there and picks up when she is taken for a ride in her wheelchair.

Nothing has been set up at all and we always think they get people out fast but that's not always the case.

Can you go in all the time whilst she’s in hospital to keep her company and talk about familiar things?
Can you show her photos and videos of her pets?

If she has not recovered fully from the uti, she is likely still quite confused therefore is probably not safe to be discharged yet

Unfortunately they won't be able to just let her out with out a good care plan . They have a duty of care so would be responsible if they let her out there are many people that are unable to leave due to having no safe place to go once discharged I myself was in a situation where they wouldn't let me leave as I had nowhere safe after being hit by a car. As I was unable to loom.after myself and had no one to.look.after me. Until my ex who was a friend at the time said he would.look after me 24/7

I'd wait until the UTI is clear personally and ask again about care package for when she can return home. Best of luck.

If you take her out, that might make it harder/slower to get the treatment she needs. Whilst she is in, it is in their interests to sort out her ongoing treatment, and any tests/scans she needs as quickly as possible, so she can be discharged - and it is much easier to get those tests done.

If she needed another scan, and you’d taken her home, you’d have to wait for her to be sent an outpatient scan appointment, whereas if she is on the ward, they can just send a porter for her. And this would be easier for you and her too.

It may feel like they aren’t hurrying to get her home, but I am sure they are going as quickly as they can, and if you take her home, that could slow down the whole process of diagnosis and treatment.

I know it is difficult and distressing having her in there - for you and for her - but she is in the best place, and a bit of time in hospital now may be beneficial in the longer term, because of a faster diagnosis and establishment of a treatment plan.

I hope she is better, and home, soon.

In my experience of family relatives it takes a little time to organise the care package so this will have to be in place first. You also have to consider whether even with a care package and family popping in will be enough for her to manage living alone if she has deteriorated significantly.

She is safe, getting her home might make you as a family feel better but what about her if she does not improve.
Face it she had a tumour and a bleed.
Take time to follow the correct path to make sure she has a good care plan, if she comes home.

If the dementia type symptoms are caused by a tumour growing, then surely it's logical they will get worse regardless of where she is? The hospital is concerned about sending her home to live alone, and may feel she needs 24 hour supervision for her own safety, rather than solely on her medical needs. You visiting once or twice a day would not be enough. She might be happier at home, but would she be safe? What happens if she leaves the gas on, forgets to take her medication (or double doses) or forgets to eat? What happens if her dementia symptoms get worse?

The expense of a 24 hour package might be prohibitive compared to her staying in hospital. If you can't guarantee you can provide 24hr care in her home and the hospital can't provide it, she needs to be safe and therefore it's wisest to keep her in. They try to get patients home as fast as possible IF that is the best medical thing for them. I think you need to step your emotions aside (and it must be heartbreaking to see her upset), and focus on what is medically best for her.

If she is being kept in hospital it is because they think she needs round the clock care in order to get well enough to go home. They don't keep people in if they don't need to.

If you can be there 24/7 to take care of her, then I am sure they would let her home if she has no pressing medical need to be there.

Hey sorry to hear about your mums situation and results. Worth asking the nurses if she can have oral antibiotics to take home. Therapy team will do a review is she's safe to be discharged alone or with a package of care. Believe me, hospitals are desperately trying to discharge patients at the moment as everyone is full and over capacity, they wouldn't be keeping her without good reason!

I agree with PP that of the infection hasn't cleared they can't rule that out. She could have had an infection for a long time hence you commenting on the decline before admission.

If it were my mother (in a manager in the NHS), I would ask to speak to the nurse in charge, enquire about the antibiotics, the outcome of the therapy assessment to see if she is MOFD and TOFD, and whether she has had a referral to the neurology service. And what her estimated date of discharge is. Ask what is stopping her going home today. Wards work on a "red to green" process where they have steps they need to do to get the patient on their journey home.

If you're still concerned/getting no where, speak to PALS.

Best of luck, hope she recovers well x

Sorry about your mum. What a difficult situation. She may well need 24hr care like others suggest and the therapists may delay assessing her if a uti is causing more confusion. Is she able to make her own decisions and self discharge. Do you have power of attorney for her. Its not always easy to remove someone from hospital especially with no care package in place
The doctors really need to discuss her illness and her future needs and care with you all.

The care is an issue but if you can get her out and looked after I definitely would do ASAP. Hospital is hard for anyone but elderly people deteriorate fast in hospital and many have gone in able and alert and come out after an extended stay unable to walk and very confused.

If she's getting muddled she's not going to take the antibiotics properly.

She's surely in the best place to get the best care till they know what's going on.

I only just managed to keep my DM out of hospital over Christmas after repeated falls and wandering incidents - I had to set up regular care visits for her, as I wasn't able to be there regularly myself. The NHS may be able to provide emergency cover initially IF she is allowed home - to my knowledge the hospital will talk to the local reenablement/nursing teams to step in, my GP surgery certainly did - but you may need to sort private carers yourselves if your DM has available cash to pay for it. If you can arrange that swiftly enough, you might get her back in her own environment.

My DM is now in full time residential care. Sorry you are in this situation, its really hard I know. Keep pushing forward, it will work itself out.

Oh, I set up meals on wheels as well - that was an extra check in the daytime, and they were also kind enough to get mum to take her antibiotics for her UTI if I left them out (they just made sure they were under her nose)!

Have you spoken to adult social services about a care package for her? I would also ask the discharge team about moving her to a nursing home as an interim step. This happened with my mum and was a nicer more stimulating environment than hospital but she had more support than at home.

What would the care package consist of & would she let carers in?

Would she be safe on her own for the time she is alone?

Would full time care be a better option?