Delirium - looking for advice

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Location - UK

My Dad (81) had a stroke at the end of September and despite the awfulness of everything, we were hopeful that he was able to make progress. He spent 4 weeks in our local hospital where he started moving again, regained the ability to swallow and began to recognise us and his situation. He had a long way to go, but was medically cleared for rehab.

However on moving to a rehab centre, Dad started reacting angrily and would walk the corridors for hours on end. The walking was accompanied by shouting - let me out, help me (etc). He was in rehab for around 9 days and during this time his mood worsened significantly. We have now been told he is suffering from hyperactive delirium. Eventually the paramedics were called and on Friday he was transferred into hospital (a different location to our first one).

Since being transferred he has nearly constantly been in a heightened state of anxiety. He cannot sleep and has again been walking around and shouting. He doesn’t always recognise us as family or the medical team as nurses/doctors.

Despite what seems to be obviously serious from our perspective, the hospital having ruled out any physical cause of the delirium, have tried to discharge him. This has been blocked as the rehab facility have refused to accept him back in the state he is - and have closed his placement.

We now seem to be trapped - the ward he is on is a general ward without any specialist staff for stroke survivors, we have asked for a mental health review, but not managed to get this to happen despite speaking to several different doctors over the last 5 days. This has been so distressing for everyone in the family and its clearly unbearable for my Dad as he’s started talking about suicide.

If anyone has any suggestions or advice on who we should be asking to speak to at the hospital or where we can get some support, please let me know. Also, any advice on how we can best support Dad during his delirium outbursts would be well received.

Thank-you in advance,

Carrie

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Hello @CarrieR
Welcome but sorry you have had reason to join us

So sorry to read the unfolding journey above.

It’s not unique

We have had similar tales that progressed well but we have also seen those that haven’t :frowning:

There’s even a topical one this week.
You and @Scarlett-W seem to have similar challenges. @EMG72 also travelled a similar road about a year ago (I can’t remember how much of a match her journey was/is though)

I guess you’ve read around a bit since you came across the welcome post :slight_smile: But you may not have found the helpful ones for your situation.

In this regard the :mag_right: of the top of the page could be your friend.

Bear in mind that we cannot at this distance gain a nuanced understanding and even if we could we are able to diagnose cause and effect but we can give multiple examples of previous experiences. Including how to escalate with NHS management via the PALS service

If you use search :mag: for keywords such as delirious or delirium or violent or “trying to discharge” etc You will get a list of posts returned. If you click on one and read it and it’s not useful and use the back button you will return to the list and can select the next one and so on

When you discover a snippet of the history of somebody’s journey that seems relevant then either go to their profile and look at their activity to find their posts or enter a new search with @username and keywords and you will just search that person’s contributions.

Lots of the relevant threads start “Mum…” or "Dad…”. I’m reminded just at this precise moment that (more than?) one of the ones about delirium tracked the cause back to a urinary infection (?), another release that stroke combined with age increases the susceptibility to delirium.

there does seem to be an element of frustration for strokes survivors who find that their life long enjoyment of the right to freedom of choice has been instantaneously removed which generates behaviours then described in similar ways :frowning:

Have you also come across 40 things while browsing? It may help You to establish communications from a position of understanding. I guess the first need is to establish that your dad is still capable of rational thought even if he is currently in an emergent PTSD/ shocked state.

You should also consider using the SA helpline 0303 3033 100
and Stroke Helpline | Stroke Association for advice as well as
Age UK Advice Line: Free national helpline for older people | Age UK

There’s more others will think to add that I haven’t but keep posting and will keep offering our experience

Caio
Simon

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Oops - wrong thread :frowning:
See Behaviour changes and paranoia - #3 by SimonInEdinburgh

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Carrie,

You would like some help? So would your Dad. Can he talk / hear / understand ? If so then you’re in business. Ask him for 5 things he wishes for. Write them down on a piece of paper. Take it away with you. My first wish was “get me out of here”, and I tried to get out of the hospital, but I couldn’t because half of me was paralyzed.

Say his first wish were exactly that. Well, it may not be practical, so you tell him you’re all working towards that, and when abc happens so does xyz happen. That’s progress. If you can grant him 1 of his 5 wishes, or work towards the most attainable goal, then that’s a start. Keep your word, or you will lose his trust.

Maybe you’ll feel like you’re treating him like a kid ; fine. Just be fair, and one last idea ; write yourself a list of 5 things from him. You reverse rolls and think what are his top 5 wishes. Perhaps do it before he does, to see if they match. The point is go slowly, and methodically. He needs the feeling of home and safety, is my guess, but it could be that he wishes to run across a field (I did) , I just don’t know. Suicide is difficult, and likely to result in a botched attempt. The threat of suicide is nothing to do with suicide. If he wanted suicide he would not be giving a warning, would he?

Good luck, and let us know how it’s going ; keep making the list every so often. See if the lists match. If you can grant him just 1 item on that list, you’ve won him over

good luck, Roland

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@CarrieR Hi & welcome to the community. So sorry to read of your dad’s situation. It myst be very frustrating for all concerned.

I like @pando suggestion. That might be a good place to start.

In relation to getting him the assessments he might need. If you’re not getting anywhere with the staff then you could perhaps try speaking to PALS & see if they can help you push for the necessary assessments.

It isn’t unusual for people to get angry, have personality changes etc. That doesn’t make it any easier to deal with though.

Have a look at these leaflets too.

https://www.stroke.org.uk/stroke/effects/emotional

Best wishes

Ann

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