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?

Sometimes a care home will send a staff member in the ambulance initially to explain what the problem is when a patient can't (not even that very often) but I can't see how they could be expected to stay beyond the end of their shift because they would not be paid

How can the hospital 'insist' they aren't paying!

Thanks for the explanations re sedation, makes sense.

@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.

I would not class the time I spent with my grandad when he had no idea who I was or why I was there “quality time”.

Besides, OP hasn’t said they don’t want to, but that with working full time and young children to get to and from school, it’s not feasible.

@CovoidOfAllHumanity

Sometimes a care home will send a staff member in the ambulance initially to explain what the problem is when a patient can't (not even that very often) but I can't see how they could be expected to stay beyond the end of their shift because they would not be paid

How can the hospital 'insist' they aren't paying!

Well in my case because I felt that by refusing to stay, I'd be held responsible (maybe not officially, but I would feel responsible and others may see it that way too) should anything happen to that person, it was certainly hinted at by some staff "You have a duty of care" - though I must emphasise that in this situation the majority of staff who asked you to stay were extremely grateful and brought tea/food etc. In the past I've rang work and let the ward staff fight it out with our manager/nurse, when it's got to several hours after my finish time. Part of it too is that you do feel a sense of responsibility for the person you've cared for and they are distressed, confused, ill or in pain and it doesn't feel right to leave someone you are caring for on a daily basis in that situation. I've often stayed a long time until family members arrive, or until the ward have managed to arrange 1-1 care, or they've settled, or been sedated. And then had to fight to be paid for those hours.

Parents stay with children for emotional and psychological wellbeing, help with feeding, washing is part of this. Children are normally dependant on parents. Adults depend on visitors. An older adult with extra needs should have extra help. Family do not usually provide 24/7

What does the rest of the family think Op? Have the hospital said how long she might be in for? Because your husband may be able to get extra time off on compassionate grounds as it's his mother(obviously depending on his job).

That's their job, not yours. However, if she's that dependent on support I'd say she's not going to be well looked after there without family support, wards are horrendous for people like her. The staff can't cope and she'll be poorly treated.

In our local hospital they would hire a private security firm to sit with patients who were disruptive, distressed or at risk of wandering off the ward. Some of the staff were excellent with the patients but it wasn't ideal for either the patient or the security personnel.

My gran had vascular dementia and even at the end she remembered my dad and me but not my sister,who lived closer and saw her a number of times a week. She told me to leave the ward because I was being too loud, I was sitting quietly holding her hand. She died two days later. With dementia there's no guarantee that they'll even remember family members.

Whenever I have been in hospital, there has usually been at least one patient with an adult with them all or most of the time. This has not been in elective wards where most MNers would be used to staying, but in wards with very elderly people who need a lot of help.
It is like children's wards. Not every parent can stay with a child all the time, some are single parents with other children for example. But because of staffing levels the expectation is there. It is the same with adults who need 24 hour care.
If there is no family members there, the amount of care they get will vary a lot depending on the hospital and staffing levels.
A lot of healthy adults only have experience of elective wards so don't really know whta hospital is like for for others.

I dont know, back in 2013 I was in hospital having surgery and there where several dementia patients dumped on the surgery ward because the hospital had no where for them, most had been abandoned by family.

They where not cared for at all, the nurses moaned constantly and it was us patients trying to help them which was crazy because several where irratic, freaked out and quite frankly dangerous.

I tore my stiches trying to catch one who must have been pushing 90 year old when she threw herself on the ground again (for the hundreth time, nurse would just step over her) how she didnt do serious damage I dont know.

Then there was the one that constantly screamed (all day and night) that she had been kidnapped and needed help but if anyone went up to her would turn violent and attack accusing you of being the kidnapper, you couldnt close your eyes because there was a risk she would be standing over you ready to attack when you reopened them.

These where just the 2 I shared a room with, there where more in the other rooms.

It seemed cruel how little the nurses cared but I do also get the nurses point to be honest - its not their job and they seem like they had this ALOT, its not a one of case they are dealing with.

They arent mental health/dementia specialists and the wards arent set up to handle patients with these condition + they have a ward full of other patients that need the physical surgical care they are there for without having a handful of patients that are completely uncontrollable needing constant 24/7 watching taking all their time.

@SinisterBumFacedCat, exactly.

And often so fond of making pious comments.

So many people just have no idea. It’s obvious from replies here how many people don’t understand that dementia sufferers will often stop recognising close family, and even be hostile/angry with them. My DM stopped recognising me some years before she died, and someone I know thought her dh of over 40 years was some random stranger in the house, was frightened of him, and kept trying to lock him out.

As for care home staff accompanying a resident to hospital, my DM’s care home did this more than once (to A&E) because sending DM on her own, with well advanced dementia, would have been hopeless - she wouldn’t have been able to explain or understand anything.

However we lived close by so were able to go at short notice and relieve the staff member - dh would drive her back to the CH while I stayed with DM.
What on earth they did when a resident had no family near, or only those quite unable to help (frail elderly spouse with no transport etc.) I have no idea. Several residents only had family a long drive away.

Whether A&E or in-patient, hospital is a terrible place for anyone with dementia, when they can’t understand what is going on or why. That was the main reason we asked for no ‘striving to keep alive’ for DM once she reached a certain age and stage of dementia. (She went on to 97 anyway, with no ‘striving’ involved.)

But as per my pp, we were never asked to stay continuously with her after she broke a hip, although either a dd or I were there with her for much of a day while she was assessed and admitted.

I sympathise with the hospital here. Your mil must be very hard to deal with if they're insisting on this. They are not set up to care for patients 121 - but then, I can see it's not feasible for family to be with her 24/7. I'd talk to her consultant, see what he suggests.

If your MIL doesn't even know who her Huns is any more, will having family there calm her? Or will she not recognise them either and think they're strangers?

Definitely time to think about full time care before there is a crisis - your MIL falls, your PIL has a breakdown or can't cope any more.

It's very hard. Good luck with it all.

If you can afford it, you could hire a carer to stay on the ward with her? I know it shouldn't be necessary, but it is the only way she will get good care.

And I have also helped patients with dementia on the ward. I helped one woman who was very distressed get dressed in a dirty dress. Not great physically for her to be wearing a dirty dress, but she calmed down and lay in bed quietly then.
This is going to be an increasing issue in hospitals as our population ages. Once you hit ninety plus dementia becomes very common.

@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.

@B1rthis Lovely attempt at passive aggression or attempting to guilt trip the OP (or OP’s DH). As PP have pointed out, I don’t know if you missed that her MIL has vascular dementia WITH Alzheimer’s, or you just don’t know what that means. She doesn’t know who the OP’s DH is. She may not even know who she is, herself. She’s lost the memories of her entire life at this point. Worse, she may even be afraid of those she used to love. Her whole personality is gone. So in addition to the exhaustion of having to function as an unpaid 24/7 hospital worker, OP’s DH and siblings also have to suffer the death by a thousand cuts that is watching a beloved family member with dementia + Alzheimer’s WHILE doing it. In some ways, it is worse than caring for a stranger because you keep praying they’ll come back to you, and they never will. So imagine being trapped in a hospital with those thoughts for hours and hours. ODFOD.

Although they demonstrate ignorance of what we’re discussing, a lot of the pious posters here are dead right.

Compassion is the key. It won’t do MIL any good, but practical support and understanding will help MILs family.

Lots of people have zero understanding of dementia. I suspect my father has vascular dementia, but my mother is in denial and won't encourage him to go to the GP about it. Her view is they can't do anything anyway.
I know when my grandmother was in hospital we were not lucky to be able to sit with her, she did not even know we were there or who we were. Sitting with her meant scrolling on phones or reading sat in a chair and helping her or dealing with her difficult behaviour when it started. But we could not be there 24 hours. Because most people have to work and while most employers are very sympathetic to a parent who has to stay with a child in hospital, they are not to adults with a relative with high needs in hospital.
It is tough, you have my sympathy.

At my hospital a HCA is rota'd to work solely with the one patient if needed

death by a thousand cuts that is a very good description of dementia. Both of my parents have developed different types of dementia at a relatively young age. It’s very likely I will too and I regularly tell my DCs not to be my carers if that happens, I want them to live their lives.

It’s shameful that in an age where the words Mental Health are bounded about so regularly we are neglecting the biggest mental health crisis in older people, which is only going to get bigger, because we have learnt to ignore it, to sideline the care to usually female relatives, to promote the rights of a person with dementia to refuse care and medical intervention because that is cheaper, to pretend that a medical condition is a social problem and not the responsibility of the NHS in anyway. Dementia is the biggest killer of women in this country, the slowest killer and has the least provisions available. It’s sick.

That's bizarre

That’s the reality of staffing levels in the NHS. Thousands of staff have been leaving over the last 10 years. There’s something like 50k empty nursing posts. And lots of empty Doctor’s posts too. They have voted with their feet - and who can blame them?

So now people like OP and her family feel the brunt of that reality. Is it good enough? Certainly not, but don’t blame the staff.

huh??
YADNBU

never heard of this

Umm as a hospital hca I've not come across this - the hospital itself would provide a 'special' hca to be with her 24/7 if she's a risk to herself/others.

Sounds like either a misunderstanding or they're short staffed and hoping the family will provide care so they don't have to.