To think we shouldn't have to be with MIL 24/7 in hospital?

[HamCob]

MIL has vascular dementia with Alzheimer's. She is usually cared for at home by FIL who is 83 though recently it's been getting too much for him-but that's for another thread.

She was admitted to an elderly care ward at the hospital on Saturday with a chest infection. Due to her lack of capacity and erratic outbursts the hospital have insisted that a member of the family is with her 24/7. They have provided a chair next to her bed and my DH and his siblings have organised shifts but they also have full time jobs to work around.

I just wondered AIBU to think the hospital should be providing her care?

you need to stress to the hospital:
What the limitations are of family support and why

Really they don’t. If they are just not there at night and the behaviour is seriously difficult (danger to self and others) then the hospital will have no choice but to manage and find the resource.

I don’t know why but the (excellent) hospital my father was in was very reluctant to sedate him no matter how bad he got. But I imagine that is an option of last resort.

@Production1 the Nurse explained to me that they are only legally allowed to use a certain amount of sedation on a patient. As you say, saving it for a last resort scenario I would imagine.

Personally Ive never heard of this. If you had a baby to look after or work to go to or even another person you looked after, you wouldn't be able to do this.

It will be a staffing and funding issue. Wards are run with a minimum number of nursing staff. (It used to be one qualified nurse for eight patients. I don't know what it is now.) This clearly doesn't allow for one-on-one care. For a patient to be allocated a carer 24/7 it has to be approved by management and then paid out of the ward budget. But managers are reluctant to do this as it means taking money from somewhere else. This puts pressure on ward staff to just "deal with it". Like asking relatives to stay to keep the patient safe.

We need more funding, we need more staff etc.

It's not necessarily a funding issue. If an adult with learning disabilities needs to go into hospital then someone from their care home has to go in with them if needed. The hospital provides medical care not social care. The hospital can insist on it and the care home has to provide it as it is what they are paid for. Your family gave presumably chosen not to have outside care is that right? Could mil be in a nursing home but fil didn't want that? If that is the case then he (or wider family) have taken on the responsibility for meeting her needs. Meeting her needs involves providing her social care in hospital. If she was in a care home, the carers would also be expected to do it.

They cannot insist
What will they do? Kick her out?
You just say no, it's not possible and they will have to manage
They are exploiting your good will
Make it clear you will not be doing it going forward. Set out your boundaries

Hospitals are able to provide a 1:1 but they don't like to because they have to pay for an extra member of staff so they will only do it if the person is very challenging
Their other options will be to sedate her and/ or discharge her early and they are likely to do those things but they cannot force a family to do 24-7 1:1

So in this situation could carers be organised to come in instead of family. For those saying they need someone to stop them pulling out catheters etc, if someone isn’t trained in how to deal with patients in this state how do they expect a family member to cope with a sick distressed patient?

@Production1 the family need to explain it in advance for benefit of the patient, in order for the hospital and social care to agree and arrange adequate care. If they don't, there is a real risk of MIL having insufficient care, either by being left unsupervised due to an incorrect staffing ratio, or by having someone unsuitability qualified/trained who doesn't understand her needs. Do you think ward staff just wish extra carers into existence if family didn't show up one night?

Sedation cannot and should not be used to control patient behaviour. It has been historically, but it is rightly considered abusive now. It is one thing to provide prn sedatives for anxiety; quite another to provide them when the anxiety/behaviour is the result of another un-met need.

Surprised this is allowed due to covid restrictions.

Maybe they think she'll be happier and less confused with someone present?

If they actually expect physical care then that's not on.

There is no medical/ social care distinction for a person in an NHS medical bed. If you are admitted to hospital then it is assumed that all your needs should be met by the hospital in every place I have ever worked.

Care homes most certainly do not send their staff into hospitals to sit with patients
The only circumstance I could imagine this might happen is if the person already had funded 1:1 CHC funded care in the care home or at home which is vanishingly rare in dementia care.
I work in dementia care on a specialist ward and even we will only send 1:1 staff to the general hospital for a few days in an emergency and only if the person is detained under MHA. We cannot afford to do more than that and still staff our own ward.
No care home I have ever heard of would have staff to 1:1 their patients in hospital so I cannot see that family should be expected to either.

If family are able and willing to sit with a person to help out then of course that is likely to be best for that person but there has to be a limit. The hospital have no right at all to insist. They may ask but they cannot insist.

Of course sedation should ideally not be used because it has very negative consequences but in the real world it is used where there is no alternative. There is no legal barrier to its use if a Dr prescribes it and considers benefits outweigh risks in the particular situation.

It is practically impossible to provide very good dementia nursing in an acute hospital because there is no space to wander, it is noisy and overstimulating and staff do not have specialist training or time plus the persons behaviour will be worse because they are ill and in pain.

It's a hugely difficult situation and if family can help that is great but it really cannot be insisted upon in any legal way.

@B1rthis

Not heard of this but so unbelievably jealous of your DH and his sibling! To have the opportunity to spend so much quality time with someone who you adore in hospital after all of last year's trust guidelines banning so many from even entering the hospital, how wonderful that must be.

Oh please! Sitting with the shadow of your beloved parent is not wonderful. And it’s definitely not quality time. Romanticising dementia certainly doesn’t wash with those of us who have sat in that chair.

I am so shocked at all the explosive angry posts on this thread!! Take a step back and think about this logically - could it actually god forbid be because they feel family input is the best approach for the patient?! And they won't 'expect it' a simple conversation with the staff setting out what you can and can't manage is all that's needed. If noone says anything they will just think you are all ok with the arrangement. They won't begrudge you, they can't change something they aren't aware is a problem. It's also not 'you' and 'them', approach its as a team who are working to make sure your mil is safe - this is why they will ring you to come in, they recognise your family are best placed and skilled at managing her distress and not them. But if you can't do it then they absolutely will, it might just not be with the finesse of those who know her inside out.

It's a hard line to tread as alot of families would be incredibly angry if you hadn't contacted them to help! So open conversations are probably the way forward.

We dont want to sedate people - they fall, they break things, they become confused, even more aggited in some cases. Sedation =not good=absolute last resort

Also to address some of the language used in previous posts, patients with dementia are not 'disruptive' , they have a set of behaviours associated with their disease that can be successfully managed in a number of ways, they certainly are not purposefully doing things to disrupt or upset people. They are normaly scared, in pain, disorientated and especially in a ward environment.

Get the hosp social worker I volved as they are often good as objectively assessing and talking to relatives where care needs arnt being met at home and putting forward/recommending other care options e.g. care homes. It is a very difficult decision but they are skilled at supporting through this.

Best wishes and hope she gets better soon x

@ineedaholidaynow

So in this situation could carers be organised to come in instead of family. For those saying they need someone to stop them pulling out catheters etc, if someone isn’t trained in how to deal with patients in this state how do they expect a family member to cope with a sick distressed patient?

Because as a family member, you’ve learnt to recognise the signs of agitation and step in. It might just be a case of holding the patients hands and talking to them, distracting them and waiting for them to go back to sleep. Or constantly reminding them to not ‘do that’. It’s not training as such it’s care and long years of practice looking after your family member suffering from dementia. You know so much more than anyone else will about that persons habits etc.

We have called family in before as the alternative is significant chemical sedation. Its obviously only effective in patients for whom family members are soothing, which is not always so with dementia . I routinely sedate people (in ICU) but can do so as I am very experienced with the drugs and can manage an airway. In an elderly frail person whom it is not appropriate to intubate it is much more difficult and you really need to be very very cautious. People who don’t know that don’t know the first thing and I have no idea why they’re sharing their ignorant views.

When my father who died of Alzheimer’s was in and out of hospital in the last year of his life, one of us stayed with him continually. It was a very scary and stressful environment for him.

He was never, ever a shadow. I have noticed the kind of people who spout callous bullshit like that are rarely the people who were actually caring for the person day in/day out. We cared for dad at home - including me, working 12.5 hr shifts, 60-80hrs a week and 50% nights - until he died. We would never, ever speak of him like that. We had an insight that those who don’t have that prolonged expeifence of direct care simply never have.

If you as a family truly can’t between yourselves provide someone, tell the hospital and they will do what we have to do for those with no family or limited family support : cautious chemical sedation, and try and get an increase in nursing staff to assist.

So for the last 15 months ppl have been stopped from visiting family but as soon as it suits, it changes. And while we keep hearing about the oh so serious Delta variant too.

They can't force you!

From a lack of capacity perspective the clinician involved needs to make a decision based upon the patients Best interest. Legally family or any adult cannot consent for another adult under the mental health act, the clinician can take into consideration the families point of view but the clinician make the decision. Many people without capacity stay in hospital without family present.
The hospital need to make an assessment of her needs. She is under their care and as such their responsibility to ensure her health and safety needs are met. I would ask for a meeting and be very clear what you are willing to do. I've had hospitals really take the mick with asking family and social care staff but refuse to adjust their assessment to state they need additional care. However, ask them if family was not here would additional support be needed, if the answer if yes they need to source additional care which could be additonal member of staff on the ward on a 1 to 1 basis.

Sorry haven't RTFT. When my FIL who had dementia was in hospital, it was so horrifically short-staffed that his relatives found the only way to ensure his safety and well-being was to provide care themselves. It was awful. They even ended up helping other patients on the ward because they couldn't bear to see them suffer.

For example, catering staff would deposit food in front of patients some of whom were physically unable to feed themselves, then swoop through an hour later to clear the untouched trays away. Catering staff and nurses both said they had no time to feed patients. Heartbreaking.

So yes, the hospital SHOULD be providing better care. But if they can't, the best thing may be for relatives to do so.

B1rthis
Not heard of this but so unbelievably jealous of your DH and his sibling!
“To have the opportunity to spend so much quality time with someone who you adore in hospital after all of last year's trust guidelines banning so many from even entering the hospital, how wonderful that must be.” Clearly doesn’t know anyone with dementia.

It is normal where I am, though if there was only one family member how would it work then? I was in hospital with a lady with dementia and spent most of the time talking her out of climbing out of bed to ‘catch her plane’. She would pack her pillow case and climb over the bed bars, so dangerous. Nurses couldn’t watch her 100% of the time. It was just lucky that she stayed put a couple of hours in between ‘flight delays’! Thankfully she ate and drank well, or imagine I’d have helped with that as well.
Nursing staff knew what was happening and didn’t say a word.

When my dm was in hospital we found the staff just had no time to care for her physically. She didn't have dementia but was extremely anxious and frightened in that unfamiliar setting. We took it in turns to sit with her all day but once she went asleep at night we slipped away, arriving back early next morning. But that was our decision. The hospital gave us no guidance or made no demands. We were lucky to have a big family but all were working during the day so it was very stressful. We roped in grandkids who were students..anyone who could fill some hours. But we genuinely felt she could not be left alone as nurses too busy.
I don't know how those patients survived during the pandemic with no one around personally for them. Its a hugely stressful time for a family but l think it's OK at times to say there is no one available at the moment but someone will be along at say 10am or whatever suits.

Anyone with dementia in unfamiliar surrounding can become high adjitated and very difficult to manage.

On a practical level a normal ward would not be able to offer 24 hour 1 to 1 .

I don't understand why people are saying it's any different than been asked to stay with our kids.

This won't be popular and does happen they would have to sedate her for her own and other patients safety .

Emotive language like it being a 'burden' to sit with elderly parents isn't helpful. The truth of the matter is that for busy working adult children with jobs, childcare responsibilities and health issues of their own, that's unfortunately exactly what it is. It may benefit them and your MIL, but no, they can't insist.
Hopefully, PIL had planned for the eventuality that she may eventually have to go into care. Have they got her name down anywhere, tried anywhere out for respite?
Be very careful here too going forward. Only will realistic care be set in place for your MIL if you step back a little.

They cannot insist someone stays with her. Ds (teenager with severe learning difficulties) would require at least 1:1 and for some of the time 2:1 care if he was in hospital to manage his very unsafe and at times very aggressive behaviour - unless he was sedated. We have had a conversation with the hospital learning disability nurse and they said that if he required someone with him, a hospital cannot insist a family member stays.

I had this when my mum was in hospital. I told the hospital I couldn’t possibly spend every night at the hospital as I had a job and kids. There was tutting and eye rolling from the nurses who said in that case my mother would have to be moved onto the main ward. Out of a side room. I said fine. They said it wasn’t fine as she was dying and it was disturbing for the other patients (they didn’t want to put the curtains round because she kept climbing out of bed).

Well they put her on the main ward anyway and she still managed to climb over the bed sides 3x and plummet to the floor. Broke an arm one time and fractured her skull another! They just said they didn’t have enough staff to cope with her so these things would happen. She was badly neglected there I know she was.

You can certainly complain but I doubt anything will change.

"To have the opportunity to spend so much quality time with someone who you adore in hospital after all of last year's trust guidelines banning so many from even entering the hospital, how wonderful that must be."

People who require someone to be with them for caring reasons have always been allowed to have them. It is visitors that are not allowed.