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?

There's a lot on this thread quite defensive/sore for want of better words about it being a huge thing that a parent has their family in and around. Obviously them insisting if it's to ease their 'burden' is unreasonable but it's Wednesday and she was admitted Saturday. 4 days where she has breathing issues. You would assume it is for support over this episode, ie until she's stabilised. I know you're probably wrecked and stressed though OP

I’ve never heard of this. My DM with pretty bad dementia was in hospital at over 90 with a broken hip. One of us visited daily but the hospital staff coped fine - and at that stage she could be decidedly stroppy.

When Dad was admitted to hospital in the advancing stages of dementia he was a flight risk. Hospital only discovered that (despite us warning them) when he escaped and went wondering outside the hospital in his pjs.

They never asked us to stay, but we did visit as often as we were able and allowed. It was clear they struggled to manage him and his erratic behaviour. They tried him on mixed wards and then private rooms with someone in the room. Problem was he would physically fight to leave, he was so afraid and confused.

They eventually sedated him. Never told us. Never got our consent despite me having power of attorney. They let us think he’d had a stroke and it wasn’t until he was transferred to a geriatric psychiatric ward that some one told us.

Hospitals really struggle to understand and care for dementia patients.

Just thinking depending where you are their might be "dementia friends" who can help with a few hours

I'm going back 20 years when my grandparent was in a similar condition in hospital. They had my mother and I in and out until my mother could take no more. (Grandparent was nasty - through the disease). She insisted that they called the oncall mental health team and that they sort it. The ward tried everything with mum - it was too late, there was noone answering, there was noone spare etc so insisted she stayed. Mum walked off the ward down to the mh crisis office and sent a colleague up to sort. The ward had not even rang them. Fortunately for mum she worked in the team that provided said resource so knew the game.
Sadly OP your DH will just have to say no to going in each night. He and his siblings need to stick together and just say no. They cannot force him to stay - that would be illegal imprisonment! Clearly what is best for MIL is a care home and if she doesn't know who anyone is then them exhausting themselves is not going to help her sadly. They are best to put their time into FIL and sorting out a home etc.

I don't know if you're still following your other thread on this OP, but I have posted on it several times explaining why the ward will be asking you this.

You can say no, of course you can. It just isn't humanly possible for many families, but please just be aware that they have asked because they have the best interests of your MIL and their other patients at heart.

They aren't looking to just pass the buck.

It is sad that we as a generation find it a burden to sit with our parents and help with their care. I understand if there is no one around or the family live a long way around. But it sounds like here that your husbands siblings are coping even though it is tough. What changes? I would sit by my 18 year son for 24/7 if he was in hospital. At what age does it turn around. I bet if your DH was in hospital his parents would be there for him 24/7 - if they could. Just an observation.

YANBU. Stop it. Not your job. Other humans are being well paid to do the job.

Get MIL assessed and start the exhausting process of finding a long-term mh facility for her.

@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.

But utterly different because an elderly person with dementia is vastly different.

I’ve had to do this so many times for my now deceased mil. Hospitals just don’t have enough trained staff for 1-1 24/7 care.
In my experience, it was the only way to stop her pulling out lines and catheters etc. The only way she would eat and drink I was if someone helped her - so that was me as no staff freeto do so.
It’s shit, but at least you’ve got a family rota. There was just me and my DH, and we both worked full time. Not fun.

Mil was in a care home and bouncing between that and hospital.

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.

@Feelinghothothottoday

It is sad that we as a generation find it a burden to sit with our parents and help with their care. I understand if there is no one around or the family live a long way around. But it sounds like here that your husbands siblings are coping even though it is tough. What changes? I would sit by my 18 year son for 24/7 if he was in hospital. At what age does it turn around. I bet if your DH was in hospital his parents would be there for him 24/7 - if they could. Just an observation.

In some ways you are right but often with dementia patients, their families have been coping alone for an extended amount of time prior to admission.

Sometimes that hospital admission is their only chance for brief respite - or to admit they just aren't coping. Dementia is difficult. Very difficult.

I am an HCP with specialist dementia training. I understand both why the ward are asking (and why they can't just "get more staff") but also why families sometimes have to say no.

@MrsFezziwig

John’s Campaign: *johnscampaign.org.uk/*

Somewhat different emphasis to what is being discussed here.

Thanks for posting this. I hadn’t heard of John’s Campaign but I can see now that this is why we were asked to stay with my DDad. We did have a HCA allocated to us throughout the day and it was good to also have this help.

There does seem to be an assumption in many of the posts here that the hospital should have enough staff to look after the OPs MIL and that they are asking for help because of a lack of funding/manpower. I’m pretty sure that isn’t the case and that they are asking to have a family member with her in order to give her the best possible outcome.

OP I can see you have loads of replies here but hope you have a chance to read the link that MrsFezziwig posted as it explains why the hospital are asking this.

The hospital can specify that a carer or family member has to be present because the need is considered non medical. It's their job to provide nursing care but that doesn't include the supervison of the behaviours that come with dementia. The reason why this may seem surprising is because from your description, her needs are at a level that she would more usually be in a nursing home or have a very high level of home care, in which case nursing home carers or a main family member carer, would be expected to be present. It might sound like splitting hairs but nursing home carers or community carers are social care staff, not NHS . It's not so much that the nursing staff are saying it's a family responsibility - their point of view is it's not their responsibility, they are not set up to provide constant supervison to adults and can only meet her medical needs. So if the only people involved are family members, then by default family members have to sort it.

Contrary to popular belief, social care don't try and dupe family into doing things to evade responsibility. The principles underpinning social care legislation state that family are responsible for family, and that the state should only intervene if all avenues for support from family has been exhausted. That's why social care support is only offered if family explicitly state that they can't/won't, or if there is no family to trace.

I'm not saying any of this to justify it; the system doesn't, in my view, recognise societal changes where this level of family care is no longer the norm, nor practical, due to changes in women's employment for example. However this is the basis for the decisions that are made, and the reason why, to get the care your MIL needs, you need to stress to the hospital:
What the limitations are of family support and why
That if her needs are considered non medical & supervisory only, that you want an urgent social care assessment for her holistic needs to be addressed, to ensure that her medical treatment is not compromised.

It's a horrible situation and I'm sorry if my post comes across as blunt, I'm not in agreement with the system I just hope the explanation can help with where to direct your efforts.

'It is sad that we as a generation find it a burden to sit with our parents'

Yes, absolutely. Eldercare now often lasts way longer than raising children. The old and demented are often violent, abusive and, of course, get no benefit from family care as they can't recognise their relations. Or understand the word family, after a while.

There's no support services or financing for the decades of round the clock labour, and it's not like carers get a break from the demented with going to school, as parents do.

The very least the NHS should do is provide hospital care while MIL is in hospital.

It is terribly sad and the burden is terribly heavy.

osbert yes the circumstances are very different however I am basing it on my experience of when my daughter was in hospital in lockdown. I stayed in with her and had a pass to show I was allowed in the hospital as non staff or patient. The list of people were allowed to stay were family member or carer of children, those receiving end of life care and adult patients with extra needs such as learning disabilities or such things as Alzheimer's.
So while the care and needs will probably be completely different it's still the same concept that this particular patient needs extra help and support.

This happened with my mum however I was asked, begged really, rather than expected to help out. She was very confused and admission to hospital although unavoidable resulted in her becoming increasingly agitated, screaming and shouting out, repeatedly pulling her drip out, refusing medication, blood tests etc. She would not tolerate 'strangers' fearing she was being attacked and her distress clearly impacted on other very poorly patients. I obviously couldn't cover 24/7 but agreed I would sit with her during the night as this was when things were particularly difficult. I did this for 8 nights. It was exhausting but mum was much calmer with me there. The ward staff regularly checked I was ok, brought me tea and toast and really were appreciative.

@B1rthis I can only assume that your post is borne out of unhappiness about a situation where you were prevented from seeing a hospitalised family member during covid, but the way it is written is extremely insensitive and cruel given the OPs description of the current pressures. It is never 'wonderful' that ANYONE has a very ill family member in hospital, whether there are visiting restrictions or not.

@Feelinghothothottoday

It is sad that we as a generation find it a burden to sit with our parents and help with their care. I understand if there is no one around or the family live a long way around. But it sounds like here that your husbands siblings are coping even though it is tough. What changes? I would sit by my 18 year son for 24/7 if he was in hospital. At what age does it turn around. I bet if your DH was in hospital his parents would be there for him 24/7 - if they could. Just an observation.

The difference is that when you have an elderly person in hospital their children and grandchildren are probably of the age where they have their own families to support and jobs to hold down, mortgage or rent to pay etc. I'm sure the family is trying their best, most families do, but the reality is both parents in most families have to work and juggle childcare between them and simply can't abandon life for the weeks on end that it takes to provide 1-1 care for an elderly person with dementia.

I'm really surprised at the hospital OP - most hospitals do go down the route of sedation for patients who are so disruptive and require so much care and that's not just because they don't have the manpower, it's also because the patient when in that state is distressed and in pain.

@Itwontstopraining Brilliant post, thanks.

Trouble is, Alzheimer's is an illness like any other,. The fact that the NHS doesn't recognise it in a medical ward but does next door on the psych ward next door is the NHS's problem. Not ours.

Oh I meant to add, make sure you ask to see the hospital social worker, if there is such a thing these days?

@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.

You can always tell the posters who have had NO EXPERIENCE of a family member with dementia.

@Supersimkin2 I totally agree that the definitions of what are 'medical' and 'social' needs are arbitrary and should be addressed. Not least because in the main, medical needs are funded via NICE guidelines according to best evidence, whereas social care needs are legally allowed to be rationed according to resources. Which is why discharges from hospital are so commonly delayed with nurses baffled as to why, if a need has been identified, social care don't have a) agreed funding to address it or often b) even a suitable service they can contract to who can provide it.

However whilst those debates continue to be had, it's important that those stuck with the system understand it enough to be able to advocate for their/their families needs so that they can have the best chance of getting the support.

Best joke on MN today @B1rthis