General hand hold needed, delirium in hospital patient with mobility issues

[MarmaladeSunset]

I feel out of my depth with what's happening to my mum at the moment, I'll do bullet points to describe a complex situation:

• Mum is late 70s but had stroke in 40s, used to be able to walk a little, but since falls and ageing is barely mobile. Back in March before crisis she could stand up from chair, be helped to commode or wheelchair, could walk short distance from stair lift to bed, be transferred into bed.
• Early April she fell and broke shoulder and wrist, taken to hospital, then transferred to rehabilitation hospital.
• Shortly after this her and her DH offered new accommodation (old accommodation unsuitable)
• Rehab hospital said she could go home with a hospital bed and hoist, her DH said was impractical for her to go home as old home in disarray being packed up, rooms full of boxes, no room for hospital bed
• Mum has been very distressed in the rehab hospital, they were rolling her onto her broken shoulder to change her pads, she's been begging to go home but not allowed
• Late last week/early this week she began having what felt like restless legs but in her whole body, jerking and crying out, and problems with heart rate
• Transferred to main hospital early Tues am this week, heart being monitored, going v low then v high, lots of jerking and moaning and groaning, starting to talk nonsense, then followed by lucid day on Weds before being transferred to (noisy) ward
• Bad night Weds (no sleep), still lucid Thurs, Thurs lunchtime more kicking out and jerking body, her getting angry with her body, much sweating, very unwell, given tramadol
• Phoned from hospital this morning asked to go in earlier - she'd been crying out all night, wanting to leave hospital, get out of bed (which she can't do unaided)
• Crying out today, bashing sides of bed, asking to leave, not understanding why she can't go, not knowing who I am, talking general nonsense today
• Dr says she has delirium, will be monitored and given fluids, would hope for some improvement over next few days

I think my fears are - what if this goes on for months? What happens then? How will the hospital cope with looking after her every night if she's crying out and bashing the bed?

Having googled delirium there's much talk of familiar surrounds and family helping, I feel she'd recover from it better at home, but will they let her go home (to her new home once move is sorted) in this state? But if they did, how would her DH manage her?

I'm not sure how long a person can stay in hospital in this state and am struggling to see her like this.

I don't live near her but have come up temporarily to stay but at some point I'll need to go back to my husband, job and other responsibilities.

Oh darling I remember your last post. I’m so sorry about your Mum. Delirium is incredibly hard.

first : yes it does improve. Some people make a total recovery, though it can take months to be fully themselves

Yes the hospital will cope. They are used to people who need care throughout the night and are set up for it. They are used to anxiety and constant requests to go home etc… It’s harder on you than them.

But yeah it’s not the best place for her delirium. Noisy wards are just about the worst place but with her heart I can see why she is there. The trouble is if she’s going “home” but to a new house that won’t be familiar either . But at least she’ll have you and DH who are. She will need carers coming in, bed etc… is that sorted? It can take frustratingly long to get it which delays things for days/weeks. The hospital won’t discharge her until she has somewhere safe to go. The only way to get things moving is to really push them to get things in place, keep chasing and play the coordinator role. It’s a lot of work and exhausting .

Can you help DH with the packing and moving and boxes? What sort of accommodation are they moving to? It sounds like they need sheltered housing at minimum now.

Can you self fund respite care in a care home for a few weeks, as a halfway from hospital to home? That can be quicker if you can line somewhere up. With her physical needs I’d recommend looking for somewhere that provides nursing care. Even if she doesn’t need lots of nursing, it means there is always a qualified nurse on site overseeing the care staff which makes a big difference.

Depending on her recovery, it might even be that a nursing or care home is now the best place for her, if DH would struggle to cope having her at home. There are good homes around , and with you living a distance away at least you will know she is safe and there are people on hand if.anything goes wrong.

sending hugs and handholds

Daffidale thanks for the reply and the much needed hand hold.

At the rehab hospital they were sorting out carers to visit 4 times a day in mum's new home. But of course now she's left there and I'm not sure if it's still their responsibility or if the task will fall to the current hospital. I will discuss this with her DH and the hospital thanks for mentioning it. I was so shocked at her state yesterday I could barely think straight.

I would find it difficult but not impossible to self fund a care home for a very short time but my fear would be that I'm expected to self fund ongoing which I couldn't afford. Parents are on benefits so definitely can't afford it.

The dr said she was monitoring mum and would hope for some improvement early next week, though she also said delirium can linger.

My mum's moving to over 55s flats with pull cords in the rooms. I'm currently staying here in the organisation's guest room. There's a care home on site here too, so that could be a possibility perhaps, but I'd need to look into that. Thanks for suggesting it. If she recovers from the delirium her DH will be able to look after her at home with the visits from carers.

It was horrible yesterday as initially nobody at the hospital even used the word delirium or tried to explain it to us. We were so shocked to see her like that and just assumed she was in the process of dying. I asked a nurse if she was dying, he said no. The nurse in charge was talking to my (step) dad about care arrangements at home but we couldn't take it in as we were just so shocked and scared.

Another patient in the room, plus a friend I'd phoned both urged me to demand to see a dr and it was from her that we eventually heard the word delirium and could start to make sense of it. Worst day of my life.

I'm dreading going back to see her today.

it sounds like the new flat is ideal especially with a care home on site too . I expect the new hospital will need to take over the discharge plan. But it should be local social care organising the carers. Do you know who the social worker was? If not I’d get on to the social work and adult social care teams at her local authority, get them talking to you and step dad about care etc…

My Mum was had delirium - similar trigger of going into hospital after a fall. Like your Mum she lost all her balance and coordination. Could sit or stand. Sadly she was never able to get back the strength to stand , because her confusion meant she also couldn’t get to grips with the physio .

Best advice I had is to focus on reducing her anxiety. Don’t try to be too logical about it. If she’s asking to go home, keep reassuring her that you and the doctors are on the case and it’ll happen “soon”. Also reassure her that she is safe in the hospital - she may want to leave because she is scared and frightened about where she is, so keep doing anything you can to help her find the hospital less scary and overwhelming

Distract rather than engage too where you can. Similar things to what people would advise for someone confused by dementia - read to her, reminisce about good times, brush her hair or do her nails, give her a hand massage, potter about tidying her things, whatever she’ll enjoy and isn’t stressful or hard work for either of you

Thanks Daffidale. She's had a couple of hours of peaceful sleep while we've been here today which has been good. Though for the last half hour she's been jerking and delirious again. It's so hard to watch, like she's having an awful nightmare, thrashing around and saying things like 'they're coming for me' then nodding off again before doing it all over again 5 mins later.

Her DH is doing an amazing job stroking her hair and talking to her about random nice things like flowers. He read your post, thanks for all the advice and tips.

Seeing how disturbed and uncomfortable she is both physically and mentally my feeling is that she won't ever get to the stage of being well enough to leave hospital, but I hope I'm wrong.

We're very unlucky that now it's a bank holiday she can't have any more tests til Tuesday.

My father was hospitalised for three months last year and went through periods of hospital-induced delirium. It wasn’t really explained to us - we thought it might be alcohol withdrawal as he’s a heavy drinker. I don’t think the hospital staff really like to admit that it’s hospital itself that brings it on, but they must see it all the time. Mentally df did make a full recovery and came home to his independent living facility with carer visits, but it was marked for closure around that time so he’s moved into a care home now and for us its taken away so much of the stress.

Thanks Ryeman, I'm glad he recovered from the delirium.

My mum is getting worse, she is so uncomfortable now, her body is twitching and jerking, she's sweating and crying out and thrashing around and has no idea we're there.

I've read that people who are dying can suffer delirium as their organs shut down and I wonder if this is what's happening to her.

I'm struggling to go back to the hospital each day to see her in increasing amounts of discomfort and distress.

Sorry to hear your mum is going through this. Delirium can be so scary but it often resolves although this can take time. The hospital is the best place for her at the moment. There will be a social work team attached to the hospital who should plan the discharge when she is well enough. You could also ask to speak to them about the options. This could be home with a care package or she may need residential care (possibly of a specialist nature if the delirium doesn't resolve). She will be financially assessed for this.

As hard as it is, it's not time to make a decision yet as it doesn't sound as if she is medically fit for discharge.

I'm sorry you are going through this, I have been through similar not too long ago. I have only skim read so disregard if not relevant but I saw something online recently where they were saying that lots of elderly people in care homes and similar facilities are dehydrated and this presents as confusion (even dementia type symptoms) it was claimed that given the correct hydration (mineral balance important too as a part of that) there was a big improvement. 💐

Thanks for the replies it's so helpful.

Have any of you seen jerking, or spasming as part of delirium?

When my mum was more with it she was fine (ish) then her body starts with something she describes as intense restless legs, starting in her whole body. These spasms or jerks then gradually send her into a delirium. They also wake her up.

The dr is looking at this is part of the delirium whereas to me it looks as if it could be another condition and is causing the delirium.

She was given tramadol at her previous hospital, then stopped it, then had another at this hospital. So one option could be that she's been going through tramadol withdrawal, and/or side effects from tramadol.

I'm also wondering about epilepsy or other factors causing mini seizures.

I could be wrong but to me the jerking that overtakes her looks to be a condition that triggers and worsens the delirium.

Or maybe her body is dying and the delirium occurs as her organs shut down.

i am going through something very similar and i am sorry to hear all of this.

how are things now?
we are trying to move our mum to my sister's house as she has deteriorated too much to live alone now but we have no idea what kind of hoists we'd need. i am so sorry to join this thread asking you dor help but i wondered if you have any suggestions as she is heavy and cannot stand anymore to manouvre herself into bed or onto the toilet and is refusing ro go into a care home. thank you

@sunstilled my mum died the day after my last post.

I'm so sorry you're going through a difficult time with your mum. I'd suggest getting in touch with your mum's GP so that they can put you in touch with the right people who can advise on, and supply, the correct hoist.

When we were in hospital and they were talking about my mum coming home they did mention a certain hoist that I can't remember the name of, but the NHS would have supplied it for her. I'm sure you'll be able to get one for your mum. Best of luck.

My mum came out of hospital today after being admitted with delirium. She had a UTI which turned to sepsis. Have they tested your mums blood/urine for infection markers?

I'm very sorry for your loss. I haven't been active on this thread but couldn't ignore. Sounds like it has been a really traumatic time for you, I hope you have support

Thanks @LordFarquart38 very kind of you to take the time to comment. I'm lucky that I have a very supportive DH who is keeping me going. I'm taking one day at a time, it's all you can do when you lose a loved one.