Mum's confusion & hospital dismissing our concerns

[NellyTheCake]

My mum has advanced heart failure but lives at home alone with no carers, is housebound but manages quite well. I live about 5hrs drive from her but she has one other relative nearby who helps out if needed.
Last week she was admitted to hospital because her heart rate was too slow. She phoned her other relative to let her know she was going to hospital and sounded ok, just fed up.

Since then her mental state has gone downhill. When her relative visited her a couple of days after admission, mum thought she was at home. A day later she was in another country!

Mum talked about how she'd been out to the shops with a nice man and lots of other nonsense.
Mum's relative spoke to the ward staff and told them mum was confused. They promised to document it and do an assessment before they sent her home.

Yesterday the hospital called me and said mum was medically fit to go home and had refused carers. I asked about the confusion but the person I spoke to didn't know anything about that.
Today they called again and said mum was medically fit to go home but she needed a bit of physio first. Then they said that mum wanted to speak to me because she didn't think anyone knew she were she was. I told the staff member that someone had been in to see mum 3 times and if mum didn't know this then she was still confused.

I then spoke to mum who told me they had put her in a cupboard and wouldn't let her out. She wanted to call the police because they wouldn't let her go home. She had no recollection of any one visiting her. She told me she had none of her belongings with her.

After speaking to mum, I spoke to the staff member again and they admitted that mum had tried to escape and wanted to call the police. They thought I could talk some sense into her.

Mum's relative has been in to see her this evening. Mum now thinks she's at a train station.
But when this was reported to the staff they just said they would make a note of it. The relative came away with the impression that our concerns are being dismissed and that we are just saying this because we don't want to take any responsibility for mum.

They don't have any explanation for this confusion. They don't seem to have investigated why she's like this. They don't appear to have documented anything about this. Just keep repeating she is medically fit to go home.

We don't know what to do next.

Has anyone got any suggestions?

You need to ask if they have checked her urine as often confusion is caused by a water infection. Def push for her to stay in as they need to monitor her

Has anyone at the hospital checked if she has a UTI (especially if she had a catheter for any time during her admittance?) UTIs can cause major confusion in older people.

Oh x-post!

When you visited your Dm in hospital, how did she seem to you? How did she end up actually being admitted?

They've done repeated blood tests throughout her stay and found no infection

I agree about UTI and any medication could be causing confusion (codeine etc)

Are you able to get there yourself?

Did anyone mention hospital delirium? Or is she on any medication they might have withdrawn?

I can't get there until the weekend by which time they might have sent her home.

It's not an infection. They have ruled that out.

My concern is that they are ignoring this confusion. They seem to think she's just a doddery old woman who talks nonsense sometimes.
My mum isn't that at all. She's very articulate and can have long, intelligent conversations.

Nothing I've said or mum's relative has said has made any difference. They say she's medically fit to go home.

Hospital delirium is sadly quite common.
That doesn’t mean it might not be something else.
The hospital environment is terrible, not only are you ill, but kept awake with obs checks, staff noise, other patients talking and snoring, bright lights on early when you are trying to sleep etc. The sleep deprivation, worry and whatever out you in hospital in the first place all take their toll.

DF used to call me at all hours when in hospital , before his dementia was diagnosed, and very mild memory loss only, talking absolute rubbish, and full of anxiety. One call
he’d think he’d been in an car crash, the next he was being held hostage abroad.
After a couple of good nights sleep at home he was back to normal.
The as his dementia progressed, each traumatic even brief hospital stay would lead to a huge decline in cognitive skills.

For now, so far away, all you can do is be guided by the staff. Arrange for some home care for the first week while she recovers at home after discharge and then reevaluate.

Ask for an assessment to be done on her fitness to return home. A physio will need to assess her to make sure she’s capable of completing certain tasks before she returns home. You can also request an assessed discharge where a physio travels with her and assesses her inthe home. And a care package for returning home with visits from carers to help rehabilitate her. Plus ot and physio assessment in the home for any support she may need or aids.

Medically fit to go home doesnt actually mean discharge though. It means she no longer needs an acute bed, not that she is ready to be at home independently. I agree though that without some kind of assessment of this confusion they can't state that she is medically OK and nor can they make an appropriate discharge plan.

I'd get chippier and nastier with them. Ask for the name and role of the people you're talking to. State clearly that you disagree she is medically fit until there us some kind of decision on what is causing your mum's acute confusion. Keep saying it, even if all you get is silence. Ask when the doctor us going to be available.

You could request a referral to the community rehab team and this is an NHS service free for up to six weeks. They will assist your DM on a reducing basis to get her back to base line in her home and work on her achieving goals that are set to enable her to be independent again. Speak with the ward sister.

Mum has refused any care package. They said she has capacity to make that decision.

I said how can she have capacity when she thinks she's been shut in a cupboard! Or is on holiday in another country!

Last week they agreed to do an assessment, now they say they've spoken to her and she just wants to go home. So after some physio they will be discharging her to her home.

She is probably dehydrated.

No, not dehydrated.

She was at the end of last week because she refused to drink but they put her on a fluid drip.

Fucks sake. That's rubbish.

Right. Keep saying very loudly that to you, she is presenting with acute cognitive impairment and therefore you are questioning her mental capacity to refuse care. Ask who did the mental capacity assessment; they should assume capacity but NOT if she has a temporary impairment of mind.

Thanks for everyone's replies.

I need the hospital to explain why they think mum has deteriorated like this.
But they don't think there is anything wrong with her.

That's the problem I have. And I don't know how to get them to acknowledge that mum isn't right.

Unfortunately if they think she has capacity she can refuse what they offer.

I’d try a local private recommended care agency & speak to them about a week of care disguised as home help. They will be used to this sort of request.

The hospital arranged care and re-enablement package is basic, times random and not usually very helpful. We were promised all
sorts for re-enablement that just didn’t happen. Instead DF had some lovely ladies who came on a very strict deadline at random hours, one came to make him food at 1, and the next turned up for dinner and bedtime at 3, and called me annoyed that he wasn’t cooperating, and she only had another 15 minutes before her next call. Poor man didn’t want to eat again so soon or to go to bed!

So we thanked them kindly and said no longer required. And I spoke to a local agency who sent someone round at set times for an hour to ‘cook and clean’ and of course do a lot more as he needed, but for him it was face saving as it wasn’t ‘care’, just a nice helpful housekeeper until he got back in his feet

My mum had this. They sent a dementia nurse to assess her. She asked me how long she’s had Dementia for. I said if you can get it overnight she’s got it. It was madness. Such wasted resources.
it turned out it was my mum’s sodium was too low. You need to tell them she can’t be discharged. Try and get her GP
involved if they know what’s going on.
being in hospital can cause great confusion, but I know how worrying it is when it’s not normal.
I really hope you get some help and answers x

Thank you!

That's the words that I need to know when I speak to them tomorrow.

I'm so worried they're just going to stick her in a taxi and send her home.

You need to ring the ward, ask for the discharge co-ordinator and ask if a discharge to assess notification has been sent to the hospital social work team.
It’s likely that this hasn’t happened if your Mum has declined support at home and has been deemed by ward staff as having capacity regarding this.

You could also contact the hospital social work team directly and discussing your concerns regarding your Mum’s current presentation with them.

Thank you
I'll do this tomorrow

I had the same with my mum when she got hospital delirium. The stories were totally wild and the ward sounded like a riot! It went after about a day, she couldn’t have been discharged though. Hospital ‘capacity’ seems to consist of the patient being able to say yes or no rather than actually being able to understand the question.

My mum goes delirious when she is in hospital and talks rubbish. She was last admitted to a frailty assessment unit a couple of years ago with breathing difficulties due to COPD.
I picked her up from hospital and she thought she was waiting on the railway station platform for me to bring the car round.
Obviously I was beyond worried - no hint of dementia previously.
Took her home and I was able to stay with her for a couple of days when she reverted to her normal self. I had a dementia assessment done by her GP a couple of days later and she was fine.
It's very scary to see your mum so altered but it may only be temporary. A couple of nights good sleep in her own bed will probably help. She had limited her food and drink as well while in as she was scared she wouldn't be able to get to the toilet.

Get in your car and go and advocate for your mother.