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Elderly parents

My Mum has been in hospital for six weeks

52 replies

MrsSchadenfreude · 16/10/2022 07:30

She went in because she’d had a stroke, had another small one while she was in there, was then diagnosed with stage 4 lung cancer. The doctor told her she was getting worse (but has told me she is stable). They won’t let her come home with carers unless she walks (with a frame - which she was doing until she was told she was getting worse), and she just says she will walk when she goes home.

I am overseas, and have been back twice to see her since she has been in hospital. I’m going to go back again next week. I would like her to go home with nursing care if possible but have no idea how I would arrange this, or maybe into a hospice. She tells me every day how much she hates it in hospital but all the hospital say is that she is not well enough to go home yet. I don’t know who I can talk to. They told me last week that she was having a scan of her heart, and that someone would call to update me. But no-one ever does, and I just get told that she is stable and she could have weeks left or months and months. It’s the same whether I phone or am there in person. And I don’t know what to do.

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idontknow202 · 16/10/2022 07:46

Hi,

Im sorry for you for what you are going through, it sounds so stressful, especially dealing with it from abroad.
Have you contacted PALS? They’re usually an excellent starting point to understand and go between the over stretched staff and family and give you a plan.
There is also the care coordinator for the ward your mum is on if you can speak to them. They would deal with making sure your mum is safe at home with short term care support (usually 6weeks ) while long term is implemented.
Our hospital also has a patient advice line to call and you can speak to a nurse on the phone and they ask questions on your behalf, does your hospital have anything like that?

hope you can speak to someone to help you make a plan to get her out of hospital, the longer it goes on the harder is it for them to adjust to going home as everything is done for them in hospital.

DenholmElliot1 · 16/10/2022 07:55

and she just says she will walk when she goes home.

It doesn't work like that. The staff need to see that she can walk before they can send her home and you need to spell that out very clearly to your mum. So if your mum hates hospital so much she is going to have to walk in hospital to show them she is capable. Unless of course, she can't walk - in which case a care package needs to be put in place - by you - to enable her to live independantly at home. Failing this, a care home place will have to be found. There really aren't any other options unfortunately and you need to be quite clear with your mum and explain this to her.

Sorry for all the stress, it must be horrible.

Knotaknitter · 16/10/2022 08:15

There is a hospital discharge team that will arrange getting your mum home or to a rehab place or a care home. That's their job. You do not have to arrange services, they will do it when she'd ready to be discharged. If she has her own funds then what she/you wants comes into it, otherwise it's based on what she needs.

I am really sorry, I've been in the position of not knowing what was happening, no-one calls, no-one answers the phone. It is incredibly frustrating from the outside. Your mum is warm, looked after and being fed and it's probably less frustrating for her. I'm assuming she's mentally competant, if so then this is her problem to fix. They might not see the need to be telling you anything if she's in charge.

MrsSchadenfreude · 16/10/2022 08:47

@DenholmElliot1 I have told her that so many times - that she has to show them that she can walk with her frame, and the longer she lies in bed, the harder it will be for her to walk.

The staff have said that she sometimes seems confused. I haven’t noticed this. She said that she is having some mad and very vivid dreams, and sometimes wakes up and momentarily doesn’t realise where she is, or thinks she is still in the dream. The dreams can be a side effect of her medication.

She just says she wants to feel better. I’d like her to feel well enough to come home, sit in her armchair, watch TV and potter a bit in her garden. Two months ago she was up a ladder clearing out the gutters. And now we’ve come to this.

The care co-ordinator is one of the people who is always supposed to be calling me and never does. Apart from when I got a call to say “we’re taking her home this afternoon” which turned into “she’s not medically fit for discharge.”

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MrsSchadenfreude · 16/10/2022 08:51

@Knotaknitter I’ve come home when they said she was going to be discharged, only for there to be delays and then it doesn’t happen - no care package in place etc. My feeling is that she might be bored silly in hospital but she is safe, warm, clean and looked after.

I also curse her GP who is still not seeing patients in person, and repeatedly dismissed her complaints of chest pains as a pulled muscle for months and months.

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SingingWaffleDoggy · 16/10/2022 09:11

I’m sorry to hear your mum has been unwell 💐
It is unlikely that your mum
will be able to walk safely after such a long time in bed as her muscles will have weakened and you may have to reconsider the reality of her pottering in the garden.
Saying that, if your mum
wants to be at home then there are things that can be done to make that happen.
I would approach PALS to support you with getting an appointment with your mum, one of the medical staff and the discharge coordinator to discuss your options. There is a fine line between continuing investigations (like the heart scans) and prioritising quality of life (being sat at home looking out to the garden).
If mobility continues to be a problem she will need to have equipment to ensure this is managed safely, such as a stand aid or hoist, and a hospital electric profiling bed.
On this note, the home environment needs to be thought about. A large room with space for a bed, commode, recliner chair and a table would likely be best if mobility is an issue.
Then there is the issue of care, which I am happy to give advice on if it helps but don’t want to overwhelm you.

MrsSchadenfreude · 16/10/2022 10:02

@SingingWaffleDoggy thank you so much. I will PM you if I may. My Mum lives in a small bungalow, so if she can manage walking with a frame, my thinking was that she should be able to get herself to the loo from the bedroom or sitting room without too much difficulty. She was walking fine with the frame when I was there a week or so ago, and sitting up in the chair next to her bed. It seems that she has given up hope since they told her that she has got worse. The stroke has also affected her eyesight, so she struggles to read. I suggested that she might like to watch TV but she doesn’t seem to have any interest in that either.

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SingingWaffleDoggy · 16/10/2022 20:22

Please do. I’d be happy to help if I can.

MysterOfwomanY · 17/10/2022 10:00

OP I wonder if they are (consciously and intentionally or otherwise) waiting for her to pass away, and (ditto) dragging their feet about arranging home care ?

The hospital my Mum was in told her her kidneys had failed and then, puzzlingly, faffed around doing more scans and NOT getting the palliative team in to sort out a return home. She died the day after the palliative nurse (at last!) first came to talk to her.

However, in hospital she had people there all the time to look after her. I don't think a professional would have been there 24/7 if she'd have been sent home, her partner and I had no nursing experience and Mum was both very heavy and burdened with multiple painful problems. We would all have liked for her to get home for her last few days BUT I suspect staying in hospital saved her episodes of pain and distress and ensured her death was relatively peaceful.

I really sympathize. Is there any way you can arrange extended leave / remote working to enable you to physically prowl round the hospital clutching a notebook and and wearing an expression of dogged concern? It's so hard getting to talk to people (bad enough BEFORE bloody COVID) and I resorted to being a (always civil!) pest who just wouldn't go away. Even then the doctor who "will be there in ten minutes" would sometimes vanish to another corner of the hospital and then go off shift.

And I HAD health PoA. Thing was, Mum sometimes had capacity, but sometimes (yay for uti delerium) not, and, well, she was ill and would misremember stuff, so it was always this hideous chain of misinformation, "they're sending me home tomorrow" when tomorrow was just a team discussion of her case... And so on.

MrsSchadenfreude · 17/10/2022 11:31

I’ve just had a call to say that she has deteriorated very quickly. I’m flying back tomorrow morning.

OP posts:
SingingWaffleDoggy · 17/10/2022 11:44

💐

MysterOfwomanY · 17/10/2022 20:55

Best of luck OP.

MrsSchadenfreude · 18/10/2022 15:08

I’m sitting with my Mum now. The palliative care team think she has hours left.

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GlendaCheese · 18/10/2022 17:03

Sorry to hear about your mum 💐.
Glad you can be with her.

hippoherostandinghere · 18/10/2022 17:09

I'm so sorry. I've been in your shoes very recently and it's the most difficult thing. Sending you strength for the next few hours and days and I'm glad you got back on time.

Rushingfool · 18/10/2022 17:14

Very sorry. Hope you are ok and have someone to support you.

Knotaknitter · 18/10/2022 18:53

I'm very sorry. I hope that there's someone you can talk to over the next few days, even if it's remotely

SingingWaffleDoggy · 18/10/2022 19:48

I’m sorry to hear that but I’m glad you’re back with her. Hoping you’ve got some real life support, if not we’re here for you if you want a chat x

glittereyelash · 18/10/2022 20:29

I'm so very sorry to read your post. My mum was very similar to yours she seemingly had a stroke then was diagnosed with lung cancer she was very confused as the cancer had spread to her brain which we only found out afterwards. I'm glad you are there with her now take the time to say everything you need to even if she's not conscious hearing is the last thing to go. I hope you have some support in this difficult time.

MrsSchadenfreude · 18/10/2022 21:03

She was very alert when I arrived and we had a chat about a friend who had been to see her yesterday, and chit chat about some other visitors. Then she became agitated and kept trying to climb out of bed. The nurse gave her something to calm her down and then about an hour later she said she was in pain so they upped the morphine dose. She’s been asleep ever since. The “death rattle” is much in evidence. I don’t know whether to go back to hers overnight or to stay here or to book into a local hotel so that I can get here quickly.

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Cookerhood · 18/10/2022 21:08

Will they let you stay? When I was in a similar position with my mum they moved her to a side room & I was able to nap on a chair beside her.

ReedOfFate · 18/10/2022 21:10

All the best OP Flowers

Solasum · 18/10/2022 21:33

Stay OP. You will be glad you did 💐

gendercriticalcomingout · 18/10/2022 21:46

Can you stay at the hospital on a put u up bed? In a relatives room?

I'm so sorry Flowers

MrsSchadenfreude · 19/10/2022 04:11

I stayed. I’m on a put you up bed. She’s still here.

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