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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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:

sandgrown · 10/06/2021 06:48

We should be thankful we live in the UK . In some countries it is fully expected that the family do all the feeding and personal care of relatives in hospital.

Sassymcsasserson · 10/06/2021 06:50

As a nurse I have never heard of this and don't think it is acceptable at all. You have a right to say no. I think it's probably good for your MIL to have people she knows around her and if your FIL is there most of the day that should be enough. All the hospitals I've worked in get what we call 'specials' to sit with patients like this (Basically a healthcare assistant and that's what they do for their whole shift). If I were you/your DP I'd be telling the hospital with work and DC it's not something you can do. Oh and she should absolutely not be in a side room, it's their responsibility to swap your MIL with a patient from a bay that is suitable. Hope you get this sorted. If the ward are not accommodating get in touch with the hospital PALs (patient advice and liaison service).

LadyMcBee · 10/06/2021 07:00

This may be an annoyance...but it's just pragmatic.
I have seen on several occasions as a student nurse the disruption dementia patients cause, and this is actually a pretty good way of trying to keep your MIL calm. Sedation for a chest infection might cause further setbacks. I have seen patients throw an open bottle of water, pads, and sick bowls at other v ill patients, I've seen patients become aggressive towards dementia patients because of their behaviour, security having to hold back dementia patients as they would not stop coming into the corridor to hit staff and then along to other patients, I've been pushed, screamed at, and scratched.
If your MIL family can inhibit this and keep her calm which is much better for her wellbeing and the rest of staff and patients, then I think its positive

SpeakingFranglais · 10/06/2021 07:03

My dad was in hospital at the beginning of January, he had advanced Alzheimer’s, he was in a sideward and the bed was alarmed so he couldn’t wander.

Sadly he passed away there but that bit isn’t relevant. We weren’t asked to come in and look after him.

Ironmanrocks · 10/06/2021 07:16

I haven't read the full thread so apologies if I am repeating. I stayed with my mum almost 24/7 for the last week of her life. There was a bed for me and she was in a hospice. I knew she was about to pass away.

I know 2 people with vascular dementia one stayed alive for around 5 years and the other nearly 10. What they are asking of you is utterly unsustainable. Do you know how long she is likely to be in hospital? Is there a way you (wider family included) can offer a couple of shifts a week or at the weekend?

I really feel for you. It is a terrible time anyway but trying to juggle your own life around what they are asking has made me really sad.

Good luck.x

MsJinks · 10/06/2021 07:23

A dr ‘insisted’ I supervise my father on discharge at home 24/7 for a week - just me - when I said I’d fall asleep she told me to get a baby monitor that would wake me if he moved. Looking back he wasn’t really ready for discharge, and also whilst I interpreted it as no option there would have been if I’d insisted on refusing. There just aren’t the resources and this is various caring bodies solutions- drs, social, hospitals now it seems. They do have to find the resources if you refuse, but I guess it’s at a cost to other work/services and they know how to make you feel bad and think no option.
You can refuse but it’s a long road of no, no, no. The short 3 weeks I cared for my parents on understanding I had no choice did none of us any health favours though - and you can’t care for others unless you have the reserves so really do not exhaust yourselves- work out what you think is feasible, halve it, and insist that’s what you can do. I now recommend well understating your availability to get the right level of care as things happen and then none might be in place and you can’t get it readily covered. Hope it works out for you all.
Oh last time I was on a ward visiting my mum - pre cv - they were nearly all disruptive, barely sleeping noisy, and trying to escape - my mum used to buzz alerts for one regular escapee - there just aren’t the resources to supervise I guess - but saying only she is disruptive is doubtful.

MattyGroves · 10/06/2021 07:24

@Ilovemaisie

This is normal and expected on children's wards. A parent stays to help with personal hygiene, assisting with food etc. I would imagine this is the same concept.

I have sadly spent quite a long time on the children's ward and they have always been clear that you can leave your children if you need to. I have even seen children left overnight in the care of staff. E.g. if the parent had other children to care for too.

I never did this because the care I saw from staff wasn't always great but it was an option. If it's an option for children, it is bizarre that it's not for an elderly woman.

MachiaNelly · 10/06/2021 07:35

This is normal and expected on children's wards. A parent stays to help with personal hygiene, assisting with food etc
True. My daughter has SEN and spent a lot of time in hospital with her epilepsy. Even when she became adult I had to stay with her 24/7 as she didn't understand why she was there and would wander off if given chance. It was way too much for staff (who she didn't know, and who didn't know her) to deal with. It would have required constant 1 to 1. And would have been virtually impossible anyway as she would be anxious with no familiar face and she is non verbal. I imagine someone with dementia will present similar challenges. It's just not possible on a medical ward and I think it's reasonable that they ask for support.

Musmerian · 10/06/2021 07:40

You are perfectly within your rights to refuse. What are they going to do about it anyway?

Sometimesonly · 10/06/2021 07:49

I'm not in the UK and this is quite usual where I live. If a person needs1 -2 - 1 care surely it is obvious that a hospital cannot provide this? When my MIL was in hospital we took it in turns and also hired a carer to sit with her when we couldn't be there - is that a possibility?

MachiaNelly · 10/06/2021 07:58

Care homes most certainly do not send their staff into hospitals to sit with patients

Yes they do. I have first hand experience of this with a relative.

Supersimkin2 · 10/06/2021 08:09

Dementees on a ward frighten and exhaust the other patients, who need all the rest and normality they can get.

The needs of a dementee don’t trump the needs of the patients.

Rachie1973 · 10/06/2021 08:09

@MachiaNelly

Care homes most certainly do not send their staff into hospitals to sit with patients

Yes they do. I have first hand experience of this with a relative.

Some might, but not many.

Ilovemaisie · 10/06/2021 08:19

Matty covid unfortunately did change things a bit with regard to staying with children. Normally you can swap parent and take turns, parents are encouraged to take a break etc. With covid rules you couldn't leave the hospital once you were in (thank goodness for on site Costa and M+S) but really they couldn't insist a parent stayed. A boy in the bed across from my daughter's (he was 15) was left alone (although when his dad did come to visit he was rather rude and obnoxious so I am glad he didn't stay).

diddl · 10/06/2021 08:21

I would say do what you can & no more.

It's a bloody cheek on their behalf imo.

The money they save by not paying care home fees as they don't recognise dementia/alzheimers as an illness & then they have the fucking cheek to demand that free care is provided whilst in hospital as well??!!

chubley · 10/06/2021 08:29

I've heard it's the norm in some countries for family to provide all personal care to patients of all ages.

In the UK this often isn't possible. What if there's only one family member - or only one living near enough? That person might be willing and able to do it but still needs to sleep, eat and wash and have breaks.

On my only stay with one of my DC on a children's ward there was a pull-down bed in a wardrobe and they provided sheets, pillow and blankets - bliss! A chair beside the bed is not adequate if someone is there all the time, but maybe with several people taking turns it won't be too bad. It's good in a way that they let you do this, better than the no visiting rules till recently, during Covid.

osbertthesyrianhamster · 10/06/2021 08:30

This whole paradigm of having 'family help' is going to have to go the way of the dodo bird with so many living so long with dementia, retirement age increased, people having children later in life (usually due to cost), people needing to move to work and afford to live, etc.

DinosaurDiana · 10/06/2021 08:31

You need to not be available. Full stop.

Tagaagajavdv · 10/06/2021 08:32

If this is a UK nhs hospital it doesn’t exactly surprise me.

As a student nurse we had a patient who would scream day and night for her family and was verbally and physically aggressive towards nursing staff. She had dementia and it wasn’t her fault but she already had a 1:1 HCA at all times, had input from multiple specialities and so as a last resort the ward asked the family to have someone with her during the day time, every day.

The ward can’t insist, they may have begged you desperately but they have no legal recourse (in the UK). What would the consequence be if you didn’t provide a family members ?

Iquitit · 10/06/2021 08:33

It's quite common where dementia patients are concerned, wards aren't set up to be safe or provide 1-1 care, there just isn't the staff and many don't know how to deal with dementia patients.
I'm coming at this from the pov of a care worker, I've been told by nursing staff that I cannot leave a resident until a family member arrives, or in some cases someone else from the care home, and there's no way management are going to sanction that.
Unfortunately with an ageing population and dementia and Alzheimer's on the increase, this problem is just going to get worse.
The alternatives aren't much better - risk of injury, falls, leaving the ward etc or sedation.

Iquitit · 10/06/2021 08:39

MachiaNelly

Care homes most certainly do not send their staff into hospitals to sit with patients

Yes they do. I have first hand experience of this with a relative.

Some might, but not many.

Every home I've ever worked in has, unless the resident has capacity, or a family member can meet them at the hospital, and if they're disruptive, aggressive etc, the ward quite often tell you you have to stay until they 'settle' or a family member relieves you.

Underhisi · 10/06/2021 08:41

"Dementees on a ward frighten and exhaust the other patients, who need all the rest and normality they can get.

The needs of a dementee don’t trump the needs of the patients."

So are you saying they don't get medical treatment? Likely to be you one day.

diddl · 10/06/2021 08:47

Dementees??

Is that really a word that is used?

Sounds very disparaging!

CovoidOfAllHumanity · 10/06/2021 08:48

MachiaNelly I honestly have never seen or heard of a care home sending in a 1:1 staff member in almost 20 years working in elderly medicine in the UK

Care homes usually cannot afford to do 1:1 care even for someone who is on their premises let alone someone in a hospital. Who is going to pay for the extra staff member? How will that staff member get a break? It means at least 2 staff will be required to alternate every shift and have their transport and parking paid. I have never known a care home that can afford to do that and still look after the people they have in the care home.

The only way I can ever see it happening is if the person is funded for 1:1 care in the care home already in which case they would have a staff member already assigned.

In my experience 1:1 is provided by the hospital paying an extra bank HCA if required but they cannot do it for all patients who ideally require it only those at highest risk.

If it was my family member I would do all I could to be there and relieve their distress because I know my input would reduce the risk of accidents, poor care and them being sedated or restrained but I would not be 'insisted' at to do something beyond what I am able to give whilst working FT looking after other people's relatives with dementia and my own kids. There is a limit to what families can do or be expected to do.

CovoidOfAllHumanity · 10/06/2021 08:50

People with dementia
People who have an illness
A very common one
1 in 5 in their 80s, 1 in 3 in their 90s

There but for the grace of God we all will go so please have some compassion

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