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?

Presumably you have annual leave, or dependency leave you could utilise.

Another outdated paradigm right up there with 'surely' everyone has 'family help'. Many people work temp contracts, zero hours, insecure employment with no paid time off at all and/or possibly not then being given hours if they take time off.

I'm in a job where I could take holiday at very short notice for this kind of thing but as a teacher dh does not have that option and sil's workplace everyone has to book holiday for the year in January and there is no leeway.

@esterwin

Someone who forgets they cant walk should have bed rails to stop them getting out of bed. This is basic care.

Bed rails will not stop a very determined adult and can present more of a danger if they go over the top and fall.

Wow this is such a difficult situation for you all. I know I would struggle to provide 24/7 care for either of my parent around looking after my children and work.

I think if it were me I would do a lot of care for a week or two (possibly by using annual leave,/ carers allowance, asking friends for childcare help etc). Then after that if it was going on longer term be very clear with the hospital about when I can and can’t help. As someone else said there must be things in place for patients who don’t have family who can care for them.

Have you contacted the local authority or a hospital social worker about arranging care for when she is discharged?

I can understand it must be hard for the hospital to manage these situations.

Also they are not allowed to restrain people. In the care home they had the bed on the lowest setting and crash mat on the floor. They didn’t use the bed rails. Mum had DOLS in place in both hospital and the care home (for many months) as she repeatedly asked to go home.

@esterwin

Bed rails are totally outlawed and a massive, massive no-no in falls risk patients. They create far more danger than any they might mitigate.

Sorry your MIL is so unwell.
Hospital must be a very frightening place for her, and this is why the staff have asked for family to be present. To calm, reassure and head off any issues. OK, MIL may not recognise you, but you know the things that will upset her and the things that might calm her, I would hope. Yes, they could get a 1:1 HCA, but she would never have met MIL before and will therefore not know her as well as you do, so will not be as good at the calming etc as family.
You will not be expected to do any 'care'.
I have often met care home staff staying with patients in hospital - usually those with LDs or serious brain injuries. These patients and their carers are usually given a side room so they are not getting in the way of other patients in a bay.
Yes the NHS is strapped, and yes we work very hard, but if someone needs a 1:1 they will get it somehow. From staff. I've never known them insist on family.

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.

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.

This. We find it properly or we give people the option not to endure it.

@esterwin this is why people who have not spent12 hours in the company of someone distressed and cognitively impaired should not make such sweeping statements. You can bet that sweet 96 year old lady who can barely take a step will volley herself over those bedrails the second you drift your eyes to write your notes and give herself a head injury. This is NOT basic care. It's basic negligence.

I’m my mother’s only child. If she needed 24 hour care in hospital I could maybe manage for about a week using a combination of carer’s leave and annual leave, with DH providing 100% of the care for our children. There’s absolutely no way I could provide round-the-clock care for my mother, work, look after my children and take care of my own needs for an extended period of time. People can be hospitalised for months, even years and this level of care from family is simply not sustainable. It’s easy to say you’d just make it work, but the reality of caring for someone and meeting your own commitments if tremendously challenging.

Even in larger families, this level of support may not be possible. My friend experienced this with her father who has dementia. Between the three siblings, one is disabled and needs care themselves, one lives overseas and one is a full-time carer for their child. It’s also possible that if a patient is elderly, their children may simply be too old to provide the care. My Mum’s neighbour for example is in her 90’s. He daughter is in her 70’s and would herself be far too old to spend night after night sitting in a chair on a hospital ward.

The fact that a family cannot provide 24 hour care is not a reflection of the love they feel for the patient.

@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.

I agree 100%!

My Mum had to do this for my gran several years ago. It was just her having to do it for hours each day, alongside a full-time job. The one night that she was ill and unable to attend the nurses/staff were unable to watch my Gran so she fell and suffered a subarachnoid brain haemorrhage (which she survived).

When my Gran was moved to a local smaller hospital they provided a mental health assistant 24 hours a day to watch her.

The behaviour in severe dementia is similar to the challenging behaviour in very severe Autism- it's not simply to do with keeping the patient calm- it's about controlling them enough that they don't accidentally hurt themselves or someone else.

A couple of years ago I was a patient hospital in a surgical ward when an old lady was bought in with a broken hip having fallen in her nursing home. She also had dementia. The home she was in were refusing to have her back as they couldn’t cope with her needs and I can understand why.
As soon as she was left she would pull out her IV, take her night clothes off and pull her dressings off.
She trow food at the nurses and other patients. If she was awake she was screaming and all night she would cry for her daddy.
It was heartbreaking to see as a completely unrelated individual but at the same time it was a nightmare for the rest of us sharing her ward including the lady in the bed next to me with advanced cancer and bed bound. I was also bed bound so neither of us could get even a few minutes break in the patients lounge.
Her children would visit but spend most of the time trying to speak to the nursing staff about her care but she had one idea who they were anyway so they just confused her more.
To stop the self harm the hospital had have a care assistant with her 24/7. She was still there after I was discharged after a couple of weeks and I often wonder what happened to her and I doubt what remained of her life was happy.

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.

This will be about money and staffing. They don't have spare staff to give 1:1 care and they don't want to fund an additional person but if they have identified that 1:1 care is needed then they should work with you to provide care when family aren't able to be there. Believe me, you won't want to leave her by herself. Speak to the ward manager and/or matron and get it sorted. It is not acceptable to expect someone to half sleep on chair next to her bed all night and go to work the next day. You can bet your bottom dollar that the night staff will be going home to bed after their shifts!!

I have never seen this requested before (except on holiday in Spain when DH sustained an injury and I was told I would need to stay and look after him overnight in hospital as the nurses wouldn't do it). In fact when my own DD was first admitted to an adult ward we had to insist that we stayed with her (profound & multiple learning disabilities) and some of the staff made it quite clear that we were not welcome there - even though we were doing most of their work for them! I did not sleep in a chair though - was either given a mattress on the floor or a fold up bed and even then I was on my knees with lack of sleep and I didn't have to go to work. I have, however, observed a lot of very poor care on wards for unaccompanied dementia patients - including some sustaining injuries.

@Comefromaway

Our reality was being attacked by a 6ft adult male, someone who screamed in your face and punched you black and blue.

Yes, Mil tried to push her daughter down the stairs and threatened her husband with a knife.

Ok, its horrible and as someone who has worked with dementia is heartbreaking and pushes you to the edge of sanity sometime but why do you think that is some random persons job to deal with?

Nurses are under paid, over worked and dont have magic powers to stop them acting like that - many people I know who work in healthcare are petite women so equally no match bodygaurding 6 ft screaming punching males or knife wheilding women who ambush you on the stairs.

Why do people think its them that should get attacked instead?

Their minimum wage long hour jobs does not cover that.

Why do people think other innocent patients should be subjected to being attacked because you dont want to be a carer?

People saying they have work - millions of people work and million have children, they pay proffesional child care while they work so why do people think care for their parents is different and a public problem instead their own.

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 but for some reason people think their parents are everyone elses 'job' instead of their own but the truth is they arent and we are one of the few countries that shit all over our elderly relatives by abandoning them then moaning no one else stepped in.

@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.

What happens when the family run out of holiday/compassionate leave from work? Or when they have to look after their own children? What if, like me, they are an only child? Or a single parent? Or have disabilities themselves? And don’t have the means to hire a private carer. Because this is the reality for many families.

Do I think the NHS should be acknowledging Dementia as a medical disease and offering treatment? Absolutely. Right now they are shirking their own responsibilities, this has already been completely at the expense of sufferers and their families.

What you are ignoring is that when a person with dementia ends up in hospital, it is usually at the crisis point, what has been building up for years of denial and avoiding getting outside help in, at which point the family is run ragged and burnt out themselves. What is it about this illness that kills so many that society demands families sacrifice their lives entirely so the NHS can effectively wash its hands of any responsibility, compared to other terminal illnesses?

mam so what you are saying is it’s the families responsibility to take the aggression, the attacks, getting pushed down the stairs etc because it is their duty? So a big violent aggressive patient attacking his smaller wife or daughter or granddaughter is acceptable because it is their responsibility to take it? No wonder families get weighed down by the FOG of caring for an elderly family member with dementia because if this. Carer burn out is a real thing, carers often end up dying before the person they care for and it’s no fucking wonder if society is so happy to abandon them.

I think a lot of people have a somewhat romantic view of dementia, trotting out that the patient can clearly remember their childhood whilst not being able to recall what they had for breakfast that morning.
Our reality was being attacked by a 6ft adult male, someone who screamed in your face and punched you black and blue

This is absolutely true.

@mam0918 That attitude would take us back in time to when many elderly people with dementia were cared for at home and were abused or very badly neglected.
It is simply too difficult for people to look after someone with severe dementia at home. That is why generally people go into care homes.

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?

They can't insist on this on an adult ears. They can suggest it would benefit her however it they are saying it is needed due to her condition they need to pay a staff member - hca / nurse to do one to one ( HCP here )

Adult ward rather not ears

@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?

It’s too open to accusations of “chemical coshing” I suppose. It’s a bit hypocritical because my Mil’s medications she takes at home for her dementia do also sedate her. She’s not awake for many hours of the day, and when she is awake she often suddenly nods off.