Delirium and how it’s managed

[HermioneRuby1]

My father was admitted to hospital yesterday after a long spell Jan and Feb where he was in with pneumonia and heart failure. He had a pacemaker and was home with my mother who is basically his full time carer and very much struggling with it. The care package they had wasn’t great and disappeared completely when Mum just got on with it. He has had a catheter on at home since leaving and it’s been giving him Ian but district nurses couldn’t come and remove it as we’re short staffed. He started declining, breathless and confused so mum rang 111 suspecting ITI. He was then taken to hospital yesterday morning, mum left last night at 8pm but he’d developed severe delirium overnight. He was trying to leave the ward and staff asked my 75-year-old mother to come in at 11:30pm. I took her in and when we arrived he remained very agitated trying to walk off the ward. My mother felt she had no choice but to stay overnight as staff appeared unable to manage him. She is exhausted after being up all night previously and being with him all day and I’m concerned about her as this isn’t sustainable. I can and will continue to support and be there etc but I don’t know how we can manage his delirium and agitation going forward without burn out. He won’t settle without her by his side and he is awful to her when she is and it’s not him I know it’s the infection but she is concerning me more at the minute, she can’t mentally take much more. Any experiences and advice welcome.

Could she stand to go home & just leave them to figure out for themselves what to do? Can you help her set healthy boundaries, she's no good to anyone if she's exhausted.

Tried this, tried to speak to nurses when I was there at 2am with them for help to do this but it’s hard when Mum wants to help Dad and nurses just leaving her to it with him. I even said this isn’t safe for her she is struggling to cope as it is. Guessing they don’t know how to handle him. Tried to offer to do shifts but the that won’t work as only me can take her home so would mean he’s left anyway and they’d have to deal with him during the cross over which as we live about 50 mins away so over 1.5 hr round trip plus it would make him worse when I turned back up instead of her as it’s her he wants. It feels impossible hence my asking for anyone’s experiences.

Delirium can settle quickly and can last months. It tends to settle more quickly in a familiar environment, and this is a challenge for hospital discharges as until the patient gets home, there is no knowing if the familiarity of home will greatly improve the delirium. My advice would be that when he no longer needs to be in hospital, you get as much support as you can set up for home and try and get him back as soon as possible. At the moment, although the ward will always ask for someone familiar to be there when a patient is very confused, it is not compulsory to say yes. Could you or other family go without mum and allow her to rest up a bit,especially over the weekend. They can book a 1-1 special or mental health nurse in hospital if needed and if family being there does not calm his agitation, then there is little point to being there.
Longer term, if your parents are generally struggling to manage at home, you need to facilitate some urgent discussions re what the plan is for them both. Have they nominated power of attorneys? Do they have advanced directives? Do you know what their wishes are? Do they live in a suitable property for their long term needs?
When you say the care stopped too soon after previous discharge, it's this because your mother told them she was coping, or were they assessed as being able to self fund and choose not to? There is a misunderstanding about the short term free care that people are discharged with. It is not free for 6 weeks, it is provided to ascertain what is needed longer term and if deemed to be a long term need, there is a financial assessment and if people are over the financial threshold they are told they then need to find privately. This may all happen within a couple of weeks depending on how obviously the long term need is and how available the social work team are.

It is an incredibly hard situation though, especially for your mum, so make sure she feels able to say no if she needs to, and try and get her to rest up and recharge her batteries.

OP delirium is absolutely awful and distressing, I have personal experience of a loved one with severe delirium, it was pretty traumatizing. On a separate note, I work in Older people’s mental health and so know how the system should work from that viewpoint.
Whilst I commend you and your Mum, you are correct that the current situation is unsustainable. The ward have the duty of care and processes to follow.
They should be putting in a mental health liaison referral which will trigger an assessment by a skilled mental health professional who will understand delirium ( unfortunately many general trained Nurses do not have adequate training or experience of this).
There are also channels to arrange a one to one member of staff to be with your Dad during the worst of this but you will have to be very clear that you as a family will NOT step into the breach or they will not deem it necessary.
There are medications which can be given to calm delirium but they have pro’s and cons- the mental health team should be able to discuss with you if the delirium persists.
The most important thing of all is that the underlying cause of the delirium is identified and addressed and it sounds like that is happening. When you are with your Dad focus on encouraging him to eat and drink if you can as this is something staff may struggle with if he is restless and agitated.

It sounds like he has a serious infection which may have triggered it. You may need to create with the ward doctors, sepsis is a real possibility especially with his recent history, and you need to advocate on his behalf. Refer to the trust’s Patient Safety policies, get PALS involved, the Frailty team. There may be an internal number to report safety concerns. dm cannot realistically stay and do it effectively herself if over tired and needs a break.

Delirium often isn’t helped by the hospitals constantly moving people who have it from ward to ward. I fully understand the pressure on beds, especially acute medical, but as it is well understood that changing the environment does not help with delirium , it would be beneficial if it could be kept to an absolute minimum.

The treatment of delirium is to treat the underlying cause eg infection and possibly to give some sedatives whilst waiting for it to settle if very disturbed. They are taking the piss asking her to come in like that. Encourage her to go home and switch her phone off. They will have to handle it as they would if he had no family. There will be a liaison psych team who can advise and the ward can assign a 1:1 if they choose to pay for and source the extra staffing. They won’t do that whilst family are filling in. It’s very nice for him to have a familiar face but you cannot do more than you can manage so put in boundaries and decline to support if it’s past what you can cope with.

this is bread-and-butter acute medicine. Delirium is a common problem in unwell older folk, still has no really great management options and can cause real problems. Treating the underlying cause is the most important thing (including infection, pain, nausea, oxygen levels...those sorts of things). Often maintaining a safe, quiet, calm environment with familiar faces helps, but that isn't always possible and staff should be mindful that family need rest too. If conservative stuff like the above doesn't work then there are some medications that can help (antipsychotic type medication) and if that's what's needed to keep him safe then that may be appropriate. Delirium can resolve very quickly, or it can take a while. The patient often remembers it quite vividly so patience and kindness is really important.

Leavd the hospital to figure it - he’s going to need a DOLs which requires a Best Interests Assessor arriving, doing a mental capacity assessment, assessing that he’s too unwell to understand he needs treatment and then a DOLs put in place so they can hold him for treatment.

It’s really badly understood and treated. My DM had severe delirium and staff misread arthritis as Alzheimer’s. She was basically fine when I was on the ward with her all day everyday but I lived 250 miles away and had 2 SEND DC so took the odd weekend off. Then I’d return to severe deterioration. The hospital didn’t even do the basics of personal hygiene, eating and drinking. Just left to deteriorate and die with no basic nursing never mind medical care. Should delirium lead to fatality? There’s always something else recorded on the death certificate with elderly people with pre-existing conditions. But non-treatment exacerbates death and leaves relatives with guilt and complex grieving.

A DoLS doesnt hold people in for treatment, the authorisation assesses if the current restrictions in place are necessary, proportionate, less restrictive and in the person's best interests. However the hospital can complete their own mental capacity assessments for the decisions in question and treat him under best interests

Thanks all. We’ve been there today again and he’s relentlessly all afternoon been going on and on about we’re all in it together, keeping him there, he’s got no money or clothes and wants to get the bus home. It’s his house and why should she (Mum) be able to go home and he can’t. I spoke to the ward manager and told them that Mum can’t be contacted to come in late at night to calm him down tonight she is extremely stressed and exhausted and they will need to deal with him and give him something to calm him. They seemed to try to justify it at first and I get it but it’s actually unsafe for her she is not able to. I have emailed PALS for further support also. We go again tomorrow and hope for improvement.