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’m uncomfortable with comparing the scenario of caring for a child with caring for an adult with disabilities.

It’s great to hear how family moved in and provided care. It’s different from if the parent has a big noise and can accommodate this - it’s a privileged position. Many people don’t have multiple children who can share the care or there are other circumstances. I’m disabled and if my parents ever needed care, I’d be unable to provide it. Being healthy, being able to give up work, rely on someone else for income, share the caring role is quite unusual in my professional experience.

They cannot insist but they can suggest it would be beneficial to your loved one to have a familiar face there and give you the opportunity to stay overnight (usually not allowed). The alternative if they cannot keep a patient calm and safe is sedation unfortunately, we had this, she was a danger to herself and others lashing out.

But if they can’t remember family members it is not a familiar face is it?

She wouldn't be sedated because she's got dementia. Believe me she would. I work in a care home and have had residents sedated in hospital without due cause. One resident has advanced dementia but had no expressive behaviour, they just like to walk around. They were sedated the whole time they were in hospital for this reason and the fact they didn't have enough staff. We reported this to safeguarding but nothing ever came of it. Now the residents family and go have a ReSPECT form in place to state they are not to go into hospital under any circumstances.

OP I'd try and facilitate someone being there at the times of day when your mil usually requires extra support. Of course it would be best for her if she had a family member present 24/7 but most people I know just wouldn't be able to do this due to work and/or childcare commitments.

Emotions are a longer term form of memory. They may not know who you are, mistaking you for a wife/husband or mother or friend etc. But they will remember the emotion connected with that person - that they are safe with that person, the person makes them feel happy etc. It might just be that for whatever reason, that person can connect better with the patient than a too busy nurse.
Dementia is an odd beast.

Fwiw. Hospitals never demand that family stay, more it was worded in a way to suggest it would be better for the patient and helpful to stay. Guilt! Some hospitals will be very honest and say they don’t have the staff to provide 1-1 and it would be for the best.
Having been on the receiving end of a agitated elderly patient whilst recovering in hospital - I wouldn’t want anyone to suffer that. Neither would I want the care of my lives one to be less than optimal. However I know hospitals can’t just magic up staff - and trained dementia staff just like that.
So yes, the ‘guilt, sense of responsibility and care burden’ meant we agreed to stay.
Not right, but there isn’t an easy solution.
(Chemical and physical restraints and with any other being allowed.)

I just wanted to come back and say thank you for the supportive comments and advice, also to provide a brief update.

Things have progressed fairly quickly in the last few days. The hospital staff have had some honest conversations with FIL about the level of care that he is able to provide at home and as a family the decision has been made that full time nursing care is the best option for MIL (we are still a bit clueless as to how this is funded etc). A social worker is going to be assigned and hopefully we will hear from them on mon. In the meantime, though not sure when exactly she will go into an assessment facility where they can determine exactly what her needs are.

The ward manager has apologised to the family as apparently they should not have been asked to be with MIL at all times - this is not hospital policy and it appears that individual members of staff had taken it upon themselves to insist they stayed,

Just to add - there has been someone from the family with her at all times day & night for the last 7 days. We do not know how much longer she will be in hospital but we have agreed with them that a member of the family will not be with her overnight.

To address the points in some of the less than sympathetic posts, I can only imagine you have zero experience if caring for someone in the advanced stages of dementia. It is NOTHING like caring for a sick child, You choose to have a child and you base your life & working hours etc around their needs.
My husband has a few days compassionate leave that is it. I am a teacher and cannot take holiday so when I am at work he needs to do the school runs etc. SIL doesn't live locally/doesn't drive and BIL works shifts

As for the poster who said that DH is lucky to spend be spending quality time with the person that he adores - you have made some huge assumptions about the nature and history of the relationship here. Please don't it is hurtful, Not everyone adores their parents and in any case MIL has no idea who he even is. It is certainly not 'quality time'

Once again thanks for the advice and sending lots of love to the posters who have been/are going through the hell of dementia. Wouldn't wish it on anyone

In the 100s of hours spent with one or both parents when admitted to hospital (one who has dementia and one with serious disability and cognitive impairment) the only members of the family who haven’t ever done more than an hour of parent sitting are those who work in the NHS. Apparently it’s impossible to get short notice emergency leave

Given the NHS is one of the UK’s largest employers it’s completely unreasonable for them to expect it of others and not allow it for their staff

Also this is frankly ridiculous and the OP should push back hard

@CarrotVan

In the 100s of hours spent with one or both parents when admitted to hospital (one who has dementia and one with serious disability and cognitive impairment) the only members of the family who haven’t ever done more than an hour of parent sitting are those who work in the NHS. Apparently it’s impossible to get short notice emergency leave

Given the NHS is one of the UK’s largest employers it’s completely unreasonable for them to expect it of others and not allow it for their staff

Also this is frankly ridiculous and the OP should push back hard

I was working in the NHS during the last couple of years of my parents’ lives. My employers were nothing other than sympathetic, supportive and gave me as much time off as I needed. I was actually stunned at their generosity. I think your family members are being extremely economical with the truth.

Best of luck with it all op

If she's unsafe to be left unsupervised then they need to book an extra member of staff to watch her 24/7. This is what we used to do at the hospice where i used to work.