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?

@diddl

Unless things have changed, dementia alone isn't a qualifier for continuing healthcare.

Of course it isn't. But if the hospital are suggesting that an individual's needs cannot possibly be met on a ward without a family member there 24/7 (which is a situation I have never encountered, despite involvement with hospital discharges for a lot of people with advanced dementia and complex behaviours that challenge) then they are suggesting that the individual has high needs across a number of the DST domains, at a high intensity. That IS.a trigger for continuing healthcare.

@Welshmaenad. No sadly it isn’t. From personal experience.

Keep taking time off
Lose your home
Protect the NHS

@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?

Yes it can. It (well a related Benzodiazepine) was the only thing that kept my Gran from hurting herself, others or becoming absolutely frantically distressed. For some reason lots of people are weary of using them though.

@B1rthis your post is probably the most insensitive thing I have read on here in a long time.

Those saying family should provide 24/7 care in hospital are being ridiculous. There is a medical need here and care should be provided. If someone has such challenging behaviour they cannot be left alone for fear of them harming themselves or others, care should be provided. My mum lived with us for two years prior to going into hospital. I had a 4 yo. i was not aware of anyone with dementia other than my grandad who seemed muddled and smiley and enjoyed people looking after him. Dementia is not like that for everyone. For some it is truly hell on earth.

In my mums case when she needed 1:1 care a few weeks after admission to hospital it was usually bank staff who were called in to sit with her, distract her, help her with food and toiletting and keep her safe. In those early weeks they tried all kinds of meds but she just didn’t seem to sleep.

The reasons for her move to a side room (for 1:1) was in part her disruptive behaviour day and night, shouting a patients, staff and visitors constantly or buzzing. She was very agitated and sometimes aggressive. It was after she fell though that she was moved so that was the main reason. It was very hard for staff and patients before she was moved to the side room.

When the dst was done (many weeks into her stay) there were a number of points which scored severe which is why she was granted CHC funding. She was Incontinent, needing to be given covert medication, high falls risk, poor cognition, confusion, aggression, agitation, difficulty swallowing (soft diet and thickened drinks), risk of sores (due to low weight and immobility), needing 1:1 care and (by then) 2:1 to mobilse.

All her needs were due to dementia.

It took maybe 6 months to get her medication right. You cannot just sedate people to the point they are drowsy. If you do they won’t eat or drink and could have difficulty breathing/swallowing etc.

Re: sedation

Benzodiazepines (like diazepam and lorazepam) all cause tolerance and dependence in long term use. They may work a treat to sedate a person to start with but the effects will wear off and increasing doses will be required. They also make a person drowsy (obviously) but this can be to the point they can't eat and drink, may fall or just have no ability to interact at all.

Antipsychotics eg risperidone at least don't cause dependence and are licensed for control of aggression in dementia (which no other medications are) due to being somewhat effective but cause drooling, stiffness, poor mobility, sometimes sedation, increase stroke risk and shorten lifespan.

All in all 'sedation' is not an easy option and should only be done short term where no other options are possible. Treating the cause of distress eg infection, pain, constipation is best and/ or having good care and a good environment that reduces triggers. These are rarely possible in an acute hospital but should be in a decent care home.

"But if the hospital are suggesting that an individual's needs cannot possibly be met on a ward without a family member there 24/7"

They aren't really though are they?

They are saying that they don't have the staff/facilities/know how which isn't the same.

She has been cared for up until now by her 83 year old husband so might not reach the criteria.

By the time my parent (who had dementia) might have qualified we didn't have the heart to put them through the testing.

The care home had known residents be on end of life care & not be eligible!

Some people seem to want it both ways. Any thread on here from a person who cannot afford a house or rent and they're told to move to a cheaper area, work more hours/second or third job, 'no one owes you a home and living in the area you were born', 'don't have kids until you can support them' (so you wind up having kids in your 30s). Then when it comes to 24/7 care for elderly relatives it's 'surely you can'.

@MercyBooth

Keep taking time off Lose your home Protect the NHS

Yep!

@diddl

"But if the hospital are suggesting that an individual's needs cannot possibly be met on a ward without a family member there 24/7"

They aren't really though are they?

They are saying that they don't have the staff/facilities/know how which isn't the same.

She has been cared for up until now by her 83 year old husband so might not reach the criteria.

By the time my parent (who had dementia) might have qualified we didn't have the heart to put them through the testing.

The care home had known residents be on end of life care & not be eligible!

CHC doesn't require any testing of the individual. Most of them aren't even aware the process is happening, it's based on assessment of their needs across the domains on the DST and is argued out in meetings between the hospital, family/advocate and social services.

It's also quite normal for individuals who are palliative not to qualify, if their nursing/health needs are non-complex.

Then when it comes to 24/7 care for elderly relatives it's 'surely you can'.
I could be totally wrong here and sorry if I am, but this hapened last week only. I'd assume when the lady is better physically then they figure out other care but for the moment it's while she's in hospital. Between a number of people surely short term it is feasible?

Ha! @stayathomer. You try starting awake in a hospital chair, then driving home an hour each way, (once someone has arrived to take over from you) then do a full days work, go home, change clothes/ wash, eat, drive back to the hospital and repeat ASAP- because your partner also has to go to work, eat, etc.
Exactly when do you think you can sleep and how many days do you think you can do that without sleep? Not long. - I actually slept at my desk at work and was lucky to not get caught and fired.

Perhaps I misunderstood then.

However despite my parent having an illness (dementia) that meant that they could no longer look after themselves it seems that they wouldn't have qualified.

The upshot being that they self funded & saved the NHS several thousands of pounds!

@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.

My uncle by marriage tried to strangle my aunt. Luckily my mother was visiting, and hit him with a frying pan.

Bargebill19
Moved into our house with my husband while 6 months pregnant and had my baby and sat with my newborn guarding the stairs at 3 o clock most mornings as dad would try to use the stair lift at that time so I'd pretend I was taking my son downstairs for a feed. When he went into hospital for 3 weeks we did exactly that, 4 of us took turns keeping watch. My sister quit her job and moved in with only her youngest leaving her other three with her husband 3 hours away and we timetabled it around my brother's job. I fell asleep in the hospital a number of times and sometimes drove to collect my sister as she didn't trust herself mot to fall asleep. It had to be done and I'm proud we did it. We stayed in the house 18 months

Sorry when I say our house I mean parents home!

@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.

Your child is your responsibility - another adult is not. In the same way your child has a right to live with you but another adult does not, that you must buy and cook food for your child but not another adult etc. Your child and other adults are different. Obviously.

A parent who can’t look after themselves is as much a responsibility as a child in my book. I appreciate that book is now out of print.

5 years ago, my grandmother (with dementia) was admitted to hospital and we (the family) were asked to provide someone during daytime hours to sit with her, feed her, make sure she didn’t fall/climb out of bed (which was how she ended up in hospital to start with). The ward was severely short staffed and the other patients on the ward also had dementia and wouldn’t stay in their beds and kept climbing over the bed rails (One of them was extremely bruised from falling out of the bed).

We did as we were asked, I did the first day and other members of the family did the Next few days (we were lucky that due to work commitments we could do this). We shouldn’t have had to, the NHS should be properly funded to make sure there are no staff shortages and they can deal with the patients they had in, but that wasn’t the case.
When my Grandfather was admitted to the same hospital a couple of years later, they were able to fund a HCA to sit with him to do the same thing, so we didn’t have to (although again, we would have been able to if needed).

@Blossomtoes

A parent who can’t look after themselves is as much a responsibility as a child in my book. I appreciate that book is now out of print.

Perhaps back in the days when women were at home all day, had children earlier and families didn’t need 2 incomes to pay the rent/mortgage and due to life expectancy dementia was rarely the cause of an elderly parent needing help. Times have changed. A family taking on the responsibility for a parent with dementia faces aggression and violence whilst sacrificing their own financial stability and future. We rightly praise people who are carers and are paid to do so, but demonise families who can’t do it for free.

A family taking on the responsibility for a parent with dementia faces aggression and violence whilst sacrificing their own financial stability and future. We rightly praise people who are carers and are paid to do so, but demonise families who can’t do it for free

You’re preaching to the choir - or at least to someone who’s got the T-shirt. No aggression or violence but complete helplessness. I could no more turn my back than I could on my child. I’m not demonising anyone but for me the responsibility (not the bottom wiping) was firmly on my shoulders.

@Blossomtoes

A parent who can’t look after themselves is as much a responsibility as a child in my book. I appreciate that book is now out of print.

Yes, and if you had to work you would have to get childcare for the children. No different for the elderly - except a child is generally smaller, lighter and easier to wrangle. Try that with someone a foot taller and twice your weight, intent on trying to fight their way outside.

You’re conflating care and responsibility here. I’m talking about the latter - read my previous post.

You said the book is out of print. It’s not.
Responsibility and care go hand in hand.