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?

I seem to see it differently from the norm but I don't think this is that unreasonable.

If she can't be left unsupervised without being a risk to herself or others, someone needs to watch her and I don't think there are reams of nurses sitting around twiddling thumbs. I was in hospital only a few weeks ago and saw how stretched they are.

Is it possible they are just trying to safe guard her. Yes, it is the nurses job to care for her which they will be doing. I think unless you are being asked to prescribe meds, take her observations, cook her meals while she is there....asking the family to be on hand to stop her wandering off or causing distress to other patients isn't unreasonable and it's not the role of a nurse.

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

I don’t see how they can insist tbh. Plenty of elderly don’t have family nearby or at all - what then? And if you don’t do it what can they do - call the police?

We are in a similar position, FIL86 with Vascular Dementia, tumours in lungs and pancreas also, been cared for my MIL83 but his condition deteriorated to the point where he was admitted for assessment and respite for MIL. He is limited to one named visitor although it's a rural community hospital and they've conceded to allow DP in as she's accompanying her mum. They're not having "visiting times" as such but have to pre-arrange roughly when they'll be visiting and are limited time-wise to an hour / hour and a half at a time. Certainly no suggestion of round the clock attendance, although the dementia journey is different for everyone.
Is the same attendance expected of all patients?

@Katela18 The DP would be entitled to unpaid leave under dependency leave, legally. It is legally for parents, spouses, children and anyone who lives with you who needs your care. But that is all legally.

I work in a large hospital and they have advanced care teams to provide 1-1 for patients to ensure there safety. There has to be a special assessment done to meet the criteria but the team is there for exactly what your MIL needs. However there isn't enough team members to cover patients a lot of the time but they cannot insist you are there 24/7 but with staffing numbers slot of the time low they can't proivde 1-1 care for your mil

YANBU, and report this to PALs and Age UK, and write to your MP. It's maybe not the hospital's fault, but appalling that this should happen, and it shouldn't be the case with children either!

This happened us with my father. He was having very uncharacteristic outbursts & aggression. We were unable to do 24/7 but a meeting with his consultants team & a medicine review helped a lot. It turned out he had been prescribed Tramadol which was causing hallucinations. She might have an underlying bladder infection, which is well known to alter mental state.

Can you request a review from a geriatrician while she's in hospital? A good few years after the incident above, when my DF had deteriorated further, he was prescribed Seroquel. It helped enormously with his aggression & anxiety. We wouldn't have been able to keep him home without it because he was starting to bully his carers & my Mum.

Late to the party but this sounds a lot like what happened with my husband's grandfather. He was admitted with a raft of issues including an infection, delusions and psychosis-type symptoms (the latter two of which have now been diagnosed as vascular dementia down the line) and the hospital were very insistent that someone from the family stay with him at all times, including overnight. I can only assume it was because he was occasionally violent but having the family there didn't help - he recognised them but their presence didn't settle him at all. Eventually about 72 hours in someone complained (one of the daughters worked at the hospital as a nurse so perhaps knew where to direct the discussions) and they managed to get staff coverage overnight.

@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.

You're not helping. Have you ever cared for a family member with dementia? Until you have, back off.

When my mum was in this position (vascular dementia, demanding, shouty, forgetting she couldn’t walk and getting up - she had a couple of falls) she was put on a side ward with 1:1 care. I used to visit everyday usually outside normal visiting hours when my small son had gone to bed and they were always grateful for a break.

I don’t think family should be expected to do this, that said, I am and only child and was the only visitor. I visited daily for 3 months, that was hard enough.

Sounds like your MIL will need care when she comes out of hospital. A lot of dementia patients transfer to care homes from a hospital stay. The change of routine and illness means they often deteriorated rapidly as my mum did but I would have never got her into a home from our home (she lived with us for 2 years before admission to hospital and subsequently to a care home).

Hospital is an ideal place for her needs to be properly assessed as she is being observed 24/7. My mum was so ill she was granted CHC funding and given 1:1 care for some hours when she first went to the home until he medication was sorted.

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

Nurse in acute medical ward. Go in and meet with the senior charge nurse. If they continue insisting ask them what they would do if you were to leave. They have a duty of care to try and keep her safe which would mean 1-1 nursing (potentially 2-1), really low bed. If they don't have the staff then they raise it to their next level to assess which wards are safe to borrow staff from/put out for bank shifts/agencies. This is not your job to provide this care and is entirely unreasonable.

On another level get the medical plan from the senior charge nurse too. It is INCREDIBLY distressing for people with dementia to be in hospital and my priority is always to get them home as soon as possible. If they are actively treating her for say an infection then do they discharge plans in place for as soon as she is switched to oral meds? As you can imagine cognitively impaired patients are often non compliant with vital signs monitoring/medication/daily blood tests and you end up treating the behaviours which are probably normal for her rather than the actual reason she came in.
Sadly we often get patients in from nursing homes which need surgical intervention who wouldn't be fit for surgery and sadly they pass away distressed in a side room on a busy acute ward when they could have the same palliative support by trained nurses who know them in their own surroundings.
I would try and ascertain what is the reason she hasn't been discharged yet.

For people judging the OP for not caring as a family and stating they would sit with their kid. Please spend a 12 hour shift caring 1-1 for someone with advanced dementia who is actively distressed and reevaluate your response. I had to quickly evacuate a pregnant staff member last night from a lady who was pleasantly confused and all of a sudden scratched me across the face then aimed a punch right at my colleagues stomach.

To those posters who asked what happens to these patients during Covid - I'm nhs but not a nurse and I volunteered for weekend shifts January February March this year and was often used as an 'eye line ' supervision for agitated patients with Covid to stop them getting out of bed , pulling out lines etc .
Not possible for the overstretched critical care nurses who were doing their nursing tasks - and 1-1 agency nurses can cost the NHS £1000 a shift .

I also can see that as much as possible a family member should be there out of kindness for the patient if possible and I'm sad to hear the anger here about this .

I appreciate it is shit for you but between you I think you need to step up and be there as much as possible. To give a fellow patient's point of view: I was on a ward with a lady with the same diagnosis and she was competent disruptive....loud yelling out the same sentence over and over again, every ten seconds or so. Pulling her lines out, going over to other patients and screaming at them, and hitting them if they did not answer her repeated question ("does my son know I'm here?" and everyone had tired to kindly talk to her but she had forgotten within minutes). The nurses were run ragged trying to deal with her and all their other patients, the other patients were suffering and not getting any sleep at all for night after night due to this woman. And then she attacked a bed bound patient and that patient ended up badly hurt.

These are the sort of things that can happen and I suspect the nurses on your MIL's ward have seen these sorts of things and are trying to do the best by ALL of their patients, not just your disruptive MIL.

Talks to PALS, if safety concerns the ward needs 1:1 HCA with her. They may REQUEST that a familiar face be there IF POSSIBLE but the rest is bullshit.

@nighttimeonly

I appreciate it is shit for you but between you I think you need to step up and be there as much as possible. To give a fellow patient's point of view: I was on a ward with a lady with the same diagnosis and she was competent disruptive....loud yelling out the same sentence over and over again, every ten seconds or so. Pulling her lines out, going over to other patients and screaming at them, and hitting them if they did not answer her repeated question ("does my son know I'm here?" and everyone had tired to kindly talk to her but she had forgotten within minutes). The nurses were run ragged trying to deal with her and all their other patients, the other patients were suffering and not getting any sleep at all for night after night due to this woman. And then she attacked a bed bound patient and that patient ended up badly hurt.

These are the sort of things that can happen and I suspect the nurses on your MIL's ward have seen these sorts of things and are trying to do the best by ALL of their patients, not just your disruptive MIL.

It is not for family to provide 24 hour care to stop this. It is for a paid member of staff. It sounds like the family are willing to do as much as they can but they should not have to 'step up' and be at the hospital over night every night before going straight to work.

Op's MIL is like this because she is ill.

Sadly an illness that will get worse & sadly an illness that the NHS doesn't recognise in terms of them needing to pay for any care!

If staff cannot cope because there are not enough of them/they are not trained/they don't have facilities, that is entirely on the NHS, not the family!

If staff cannot cope, what do they expect family members to do to make sure their relatives stay in bed/keep quiet/don't disrupt?

@esterwin

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

I'm in Ireland & bedrails are banned. They're considered restraint & also dangerous as patients do more harm to themselves climbing over them. If you walk into a nursing home at night here you'll see all the beds lowered to almost ground level with crash mats alongside.

My late father had dementia, required a hospital stay, and we were asked by nursing staff to sit with him because he needed 24/7 monitoring.
He had no idea who any of us were, and was aggressive.
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.

The costs of sitting in a hospital for hours at a time soon add up, mentally, physically and financially.
My father's Attendance Allowance was stopped, fair enough. We were expected to pay full car-parking rates, and the staff were forbidden from giving us a single cup of tea.

After he died I was told by a senior nurse that we shouldn't have been asked to sit with him.

OP - have they done a CHC assessment?

No you shouldn't have to, but in reality this is what is happening. A couple of years back my grandad was admitted to A&E, early dementia, was managing quite well at home with my Nan. Admitted with an infection so was more confused than normal. Has 2 small children so was sorting them out and go to the hospital as soon as I could. I was met by a very disgruntled HCA who was annoyed he had had to sit with him until I arrived. They are just too busy to provide 1:1 care, and without it people tend to wander and have falls. There was no need for his rudeness though!

[quote esterwin]@Katela18 The DP would be entitled to unpaid leave under dependency leave, legally. It is legally for parents, spouses, children and anyone who lives with you who needs your care. But that is all legally.[/quote]
My dh is a teacher and his sister works a minimum wage job in a supermarket. We also have autistic children who require a loot of support/input.

The most either of them would be entitled to is unpaid leave and even then the time you are allowed is limited. It's meant to be used to make alternate arrangements when a crisis/illness happens. Dh was allowed a couple of days to sort emergency arrangements when his dad was taken into hospital. His sister would be put in severe financial difficulty if she had to take unpaid leave.

In addition dh has a vestibular disorder which makes him physically unable to care for his mother with severe dementia.

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.

They can bring in a bank HCA to supervised 24/7. Complain

The hospital are taking the piss.

When I was a student nurse I used to do lots of agency HCA shifts and the majority of the time I would be there as an extra person to “one to one” a patient who was a falls risk or had dementia or had a tracheostomy they kept trying to pull out or similar.

I loved doing it as a student as it paid £250 for a “long day” on a Sunday, and it meant I didn’t need to work for the rest of the week then and could concentrate on my studies.

Hospitals often find it hard to cover “one to ones”, especially at short notice, but it being presented to family as their obligation is categorically incorrect. Not all elderly people have enough family to cover this level of 24/7 supervision, guess what the hospital do in those situations…they pay someone to do it.

@Comefromaway @esterwin

Oh wow, I hadn't realised that. My company gives 3-5 days dependency or emergency leave for this kind of thing and it's paid. I know a colleague of mine used it when her dad was unwell following an operation. So I naively assumed this was the case across the board.

Thanks for educating me!