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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

260 replies

HamCob · 09/06/2021 22:39

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?

OP posts:
Iceybirb · 10/06/2021 16:56

But if someone is actively extremely distressed, no longer knows who they are, no longer recognises their family etc, would they not benefit being sedated?

lastcall · 10/06/2021 17:04

@Production1

N/c.

This happened with my father. Also quite shocking outbursts. Our family just could not do this for various reasons. The hospital had to provide a mental health nurse/ HCA to sit with him 1:1 all through every night shift.

They can ask you, and maybe they’re trying to ‘insist’. But you don’t have to. You have to think of your own sanity and health as well. They cannot make you do it. You can only do what you can do. They will have to do the rest.

This.

They're going to have to properly staff the floor so this can be done. Insist on speaking to a supervisor and telling them they're going to have to sort it as that is their job. There is no one available to sit with her 24/7, else they'll be homeless from losing their job/home.

diddl · 10/06/2021 17:13

"If you want your parents/kids/family member looked after you are expect to do it yourself or pay a proffesional - NHS are not dementia babysitters and have never claimed to be, they are only their to treat her chest infection."

But dementia is an illness that should be managed by the NHS whilst the chest infection is being treated.

They save 1,000s by not paying towards the care of dementia patients.

Perhaps some could be invested into so specialised training/units?

Thecurtainsofdestiny · 10/06/2021 17:24

It can often be better for the patient if family are present in this kind of situation as that may be more calming than the presence of a stranger.

But it's also unrealistic I think to expect family to be there 24/7.

When a patient with dementia goes into hospital they often will become distressed ("stress and distress behaviours") especially if there is delirium present.

Locally, this situation would lead to a referral to the Old Age Liaison Psychiatry team, who would assess the patient and advise. And a bank HCA ( or RMN if needed) might be advised for 1-1 support ( along with other recommendations to improve things for the patient).

Can you ask if there is an OA psychiatry liaison service available?

Jent13c · 10/06/2021 17:28

@Iceybirb the problem is that dementia can be a pretty long term condition. There are drugs that would sedate someone but all have many many side effects such as they slow someone's breathing efforts. So realistically their airway is at risk. This can be managed in the short term if an immediate situation arises (such as the patient is a harm to themselves and others around) but realistically how often are we going to be sedating them? They could live for say 5 years unable to communicate/being aggressive. Plus everyone reacts differently to drugs and often they can actually make people worse.

Thats just one side effect (a VERY common one), there are many more cardiac, renal ones etc. So putting aside the ethical considerations of long term sedation it could potentially contribute to their death.

SinisterBumFacedCat · 10/06/2021 17:37

Very many people with dementia, if they knew how they were going to end up, would not opt for enforced longevity. If I go this way please give me the sedation that will hasten my death.

osbertthesyrianhamster · 10/06/2021 17:45

@SinisterBumFacedCat

Very many people with dementia, if they knew how they were going to end up, would not opt for enforced longevity. If I go this way please give me the sedation that will hasten my death.
Thing is, when to do it, because if you're not compos mentis then how does one know if you've changed your mind about your advanced directive to be legally euthanised, IYKWIM (not that I disagree, a 100% agree with advanced directives, living wills and legal assisted suicide)? And with dementia you often don't realise you have it.

I guess, advanced directive not to be treated for anything? But again, you'd have to make this when you're still legally with it.

SinisterBumFacedCat · 10/06/2021 17:53

Absolutely. If we are not going to treat dementia symptoms which are passed off as social or fund care without bankrupting families then we should be given the option to end our lives before it gets too bad. Advanced directives written when you are healthy that state that life prolonging treatments should be avoided. Dementia runs in families, these are the people who have watched it slowly take a loved one and been powerless to stop it, expected to sacrifice their own jobs, health and families. You know what’s coming.

JewelGarden · 10/06/2021 18:07

@Iceybirb

I have a question - why is sedating people who are extremely distressed/erratic/violent frowned upon?

Unless of course it would negatively impact their breathing/physical health.

Can Valium not be used in such situations?

Dementia patients are often admitted with pneumonia and sedation can make this worse because the patient isn't able to cough up all the stuff from their lungs. It can result in a long, slow death in hospital if the person doesn't have a nursing home placement to be discharged to. Also no one wants to be controlling patients behaviour by using sedation, it's a form of restraint and all forms of restraint have to be used very carefully.

That's half the reason nurses like having family in with patients who climb beds and pull out lines etc, the family can use restraint that the medical staff don't want to or can't use because it's ethically questionable.

stayathomer · 10/06/2021 18:11

Very many people with dementia, if they knew how they were going to end up, would not opt for enforced longevity.
My dad was happy a lot of the time he was confused, would chat away asking questions while we tried not to cry , it's like anything I'd say (of course I don't know this), where it's difficult for people to watch but the person going through it- it's just the way it is

Welshmaenad · 10/06/2021 18:15

Management of extremely challenging behaviours due to dementia is in fact a medical need - one you should highlight, OP, should it be decided that your MIL does need placement for care, and insist on a DST meeting to discuss the NHS finding her placement under Continuing Healthcare. The fact that they have insisted on family providing 1:1 care whilst in hospital being the evidence that she has high needs across a number of domains which could nit be met by normal ward staffing.

See how they like them apples.

JewelGarden · 10/06/2021 18:18

@esterwin

Someone who forgets they cant walk should have bed rails to stop them getting out of bed. This is basic care.
There's forgetting you can't walk and there's being 93 and frail and terrified thinking that the nurse is coming to try to kill you so you try to scale the bed rails.
KOKOagainandagain · 10/06/2021 18:20

I have 2 SEN DC and lived 250 miles from DM. When she was hospitalised after a fall/suspected stroke I drove back and forth like a mad woman. Her doctor wrongly assumed she had diagnosed Alzheimer's because he had misread the notes - it actually said arthritis. So they missed sudden onset delirium. Whenever I arrived on the ward she was distraught. I could calm her with 1:1 provided before me. Make sure she ate and drank, went to the toilet, was clean. Basic stuff. Hospital wouldn't provide 1:1. She fell and had an alarm but staff would remove it and place her buzzer out of reach. They left her food out of reach. She lost so much weight that they had to monitor weight loss but they still wouldn't feed her. Too staff intensive.

They moved wards but I couldn't be present due to other demands. They immediately medicated her. She developed distressing side effects.

The last two months of her life were crap and led to 'complex' grieving for me.

I support the idea of the NHS but the reality can be crap.

KOKOagainandagain · 10/06/2021 18:21

Provided by me not before

diddl · 10/06/2021 18:26

Unless things have changed, dementia alone isn't a qualifier for continuing healthcare.

imaginethemdragons · 10/06/2021 18:31

There is a shortfall of over 80,000 nurses in the U.K.

COVID will have made that 100 times worse due to the mental health PTSD burden on those nurses now. Plus those who died, retired, left or changed careers.

There are not enough to deal with patients. That’s the top and bottom.
Families are asked to help out to keep the patients safe.

Blossomtoes · 10/06/2021 18:51

There is a shortfall of over 80,000 nurses in the U.K

There are 38,000 nursing vacancies currently.

www.kingsfund.org.uk/projects/positions/nhs-workforce

helpmeeee11 · 10/06/2021 19:02

@mam0918

helpmeeee11 - It is not for family to provide 24 hour care to stop this. It is for a paid member of staff

But who is this paid member of staff?

and who is paying for them?

If you want your parents/kids/family member looked after you are expect to do it yourself or pay a proffesional - NHS are not dementia babysitters and have never claimed to be, they are only their to treat her chest infection.

It is NOT a nurses job or specialty and they cant just give 1 on 1 care to just 1 patient they have several to look after and the NHS already cant cope without family ditching their care responsabilities on them.

Actually they can and do give 1-1 care for patients at risk all the time.
N0tfinished · 10/06/2021 19:22

@murbblurb

My thought also for those berating the op - you go and sit 24/7 beside a distressed demented version of anyone, let alone someone you love. Op - stand your ground, give your effort to your FIL in accepting that he has done all he can and it is time for full time care.

Our society needs to stop dancing round the elephant in the room - dementia steals all quality of life and puts people in a state that no one would want to be in, a mindless shell of themselves. There is no treatment and we need the right to escape.

Absolutely. Ethical nightmare though. Who can approve that when the person suffering doesn't have capacity? I would sign anything now to prevent enduring that in my later life...
esterwin · 10/06/2021 19:26

It is an ethical nightmare. The nurses in hospital were convinced my grandmother had dementia even though we kept telling her she had a lifetime history of mental health problems and needed to be medicated. It took an official complaint for her to be properly medicated and the "dementia" disappeared.

Iquitit · 10/06/2021 19:28

@Iceybirb

But if someone is actively extremely distressed, no longer knows who they are, no longer recognises their family etc, would they not benefit being sedated?
I have mixed feelings towards this personally, because sedation is restraint and restraint is to only be used when all other methods have failed and there's a risk of injury to the person themselves or others. They would basically have to be sedated to sleep, constantly, because sedation can actually make things worse in view of walking/falls, aggression and eating/drinking.

The problem is, within social care and hospital settings, the other methods take time and money and staff and quite often one, or all of those isn't available, sedating someone to 'keep them quiet' is abuse, but, if they injure themselves or someone else, it's the staff on duty that can be accused of failure of duty of care if they're not monitored.

Dementia is a nasty and ugly disease, it is nigh on impossible to manage in some circumstances and people will, and do, hurt themselves or other people, leave places, get into all manner of problematic circumstances.
IMO, we need to accept this as a society, and realise that practically without massive investment in the area as a whole, this is the kind of thing that will not just continue, but increase. Unfortunately no one has that magic wand that will prevent the behaviour or make someone understand.
I don't think it's right that this sort of thing happens, however it does, and even if OPs family are successful in getting 1-1 care funded, then the demand will shift to another patient and their family, somewhere else, having to do the same thing. That's not to say that I think the OPs family should suck it up, and in this particular scenario, then yes, repeatedly saying no and forcing their hand to provide 1-1 care protects OPs MIL and their family. However, that doesn't solve the wider problem that's led to the OP being in this situation to start with, and that's what needs addressing on a wider scale.

I do sometimes think that it would be kinder to sedate people who are desperately distressed, but who we cannot provide comfort for, who are wanting and needing something that cannot be given - like a long deceased family member, or who ask for a family member but the disease has removed their ability to recognise and be comforted by their presence. I feel it would sometimes be kinder than just letting them suffer psychologically through it. But it needs to be a very careful balance. Some meds for dementia, or associated problems do have sedative side effects , some people are prescribed mild sedation for their anxiety, but ultimately nothing is going to make that person understand or cure their dementia - it's the nature of a terrible disease.

Looubylou · 10/06/2021 19:35

It is normal for family to be called in occasionally if a confused patient is distressed, however, 24/7 cover is ridiculous. Explain people have jobs and also need some energy reserves to support after discharge. Just say no - it is their responsibility to keep her safe. Unfortunately, these situations often lead to premature discharge with inadequate planning. Be aware of that and insist on safe discharge plans.

Butteredtoast55 · 10/06/2021 20:06

From the other side, when my DM was in hospital there was a lady with dementia on the same ward and another lady who was blind. One night the lady with dementia repeatedly kept climbing into other patients’ beds, was scratching and biting them and was about to hit the blind lady with a chair when my Mum woke up and shouted for the nursing staff. Later that night the lady with dementia defecated on top of another patient’s bed. The nursing staff cannot be there all the time, and I expect they are understaffed and need the help. I remember how upset one of the nurses was that they just couldn’t give the care they wanted to and that they had asked the family for help and they had said ‘She’s your problem now’
I am not suggesting that this is your attitude, OP, but I expect it isn’t unusual for overwhelmed families of high-needs patients to be desperate for a break.

Underhisi · 10/06/2021 22:08

"The truth is your family is your responsability, if it was an severally austist child (even a violent large teenager) you wouldnt just dump them on the NHS and expect someone else to do the work"

If my severely autistic teenager was in hospital I couldn't and wouldn't look after him there 24/7 without a break. No one could do that. I don't think you understand what that sort of caring is like. If you shut your eyes for a minute you risk getting punched or bitten. Someone who thinks it is possible is thick as fuck.

FedUpAtHomeTroels · 10/06/2021 22:23

Sedation can make them a high falls risk, and so can bed rails. In their confusion they try to climb out and over the rails.
The hospital I worked in would have a staff member come in (usually from the bank) and do 1-2-1 care with someone like your MIL.
They talk to them, and keep them safe. We never expected family to sit with them 24 hours a day.

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