Change to discharge plans :-(

I’m posting on here a lot as im still in the midst of supporting my mum adfer 11 weeks following a massive stroke. Ive been out of my mind with worry, stress and exhaustion. Previously we were told by the medical team that they were planning on referring mum to level 2 rehab.

But last week we were told as her recovery had plateaued (i disagree - it’s more up and down and slow due to setbacks/infections), it’s likely shell be sent home with carers and a hoist or to a care home. This was a shock.

They gave us 2 weeks to support her to try to get to a level of recovery suitable for a level 2 referral. But I’m so scared that she won’t get there - especially as the ward often skip her physio when overwhelmed with work.

I have no idea how my dad would cope with mum at home, even with a care package. And I’m deeply concerned she’ll not get the support and medical attention she needs once discharged. We dont want to put her in a care home as we want her to continue her recovery journey.

Any words of wisdom out there?

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Hi EMG
In your note you mention a hoist. Has anyone explained to you how this might work in reality ?
What would it be used for day to day ?

Are they expecting the house to have adaptions ? Is that practical ? Does the house have space for a downstairs bed ? Have they discussed washing facilities ?

When they have mentioned a hoist, is this a fitted ceiling track ? Or a semi portable hoist, a bit like a mini crane ?

Have they mentioned a downstairs adjustable bed ?

Apologies for the questions but I am hoping (if you didn’t know the answers already) that you can flip these back to the health professionals to get a greater understanding of what they are proposing.

Sorry, I am not sure if your mum’s capability.
To give you an idea of a possible set up that might exist for someone who has very limited long term movement. As you can imagine, this isn’t a 5 minute piece of work if it’s required and it might not even be remotely practical.

  • profiling bed. Similar to a hospital bed capability in that it can be raised and lowered and the head section likewise. Air mattress with pump to prevent sores if in bed for a long period of time
  • toilet
  • bath ideally with a fold down shower table over the top which allows a shower but also somewhere to dry after a bath
  • waterproof floor
  • level floor
  • portable hoist to allow transfer from bed to toilet to bath or ceiling hoist to do the same. Ceiling hoist requires beams to be structurally tested to see if they can carry the weight

The home solution will depend on movement capabilities both in the short term and going forward.

Hope this helps
Nigel

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Hi @EMG72 all this must be very worrying and frustrating for you in equal measure.

I agree with @Nigelglos that if you don’t know the answers to the questions he raises you need to find out. You also need to ensure all your concerns are raised with the relevant people at the hospital and if you don’t think ypur dad can cope you must tell them. I do think though that if they put a care package in place and the relevant adaptations in the house they will probably discharge her. One of our neighbours, a few years back, had a brain tumour, lived on their own & was unable to do anything for himself. He was discharged home with 4 x carers visits a day and that was it. He was bed bound and we used to get regular calls.to.help him. I don’t say this to frighten you but to prepare you for what might happen.

In the meantime are you able to do physio stuff with your mum to help her reach the level she needs to be at to move into rehab? I don’t know what she is able to do at the mo but anything you do with her needs to be tailored to her current ability level. If she can show she can participate in and benefit from rehab they’re likely to reconsider.

Sending lots of good wishes your way and i really hope you get the outcome you want for your mum.

Best wishes

Ann xx

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Unfortunately it’s often a bit of hassle to get what you want. Not ideal when you are at a low ebb.

The people suggesting solutions don’t have to live with them. The people suggesting solutions may be looking at lowest cost and not optimal suitability.

A lot of disabled adaptions are a bit ugly. It’s as though the manufacturers all skipped the week when they were talking about making things look good.

A bit of fighting for what you truly need will pay massive dividends.

Good luck.

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My mum is 77, has left side paralysis, has had multiple infections which is the reason for the slow progress. Shes got a PEG (the pricedure knocked her for six - another setback). She can use the Sara Steady with help, and wheelchair. On bad days, it’s the hoist.
She’s not yet continent and her catheter will be removed (they tried but she retained urine).

The consultant asked me to focus my energy on mum so I’ve asked physios for in-bed or seated exercises. As a famiky we’re doing them with mum. I’m tempted to call the discharge team to get an idea of what to expect if she’s sent home.

A former nurse told me to stand my ground of it means mum getting the support needed to get to rehab or home but with better mobility. The fight has no end and im the only family member able to advocate as I’m determined and live locally.

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The stroke journey is a tough one but it sounds like your mum has the right person advicating for her.

Give the exercises you are given a try. If your mum is up for it it’ll help loads but don’t overdo it as fatigue coukd slow things down. Sadly in hospital family & friends often have to sort everything for the patient…the staff just don’t have enough time.

I’d agree with the advice on standing your ground. It’s tough right now but it should get easier. Don’t forget to look after yourself too. You need all the strength you can muster.

Best wishes

Ann

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Thank you.

I’m feeling that staff are just ticking boxes now and withdrawing their support now it’s been 12 weeks. And I’m questionning everything they tell us.

It’s incredibly hard work!

Today a nurse left a blanket made by a charity next to my mum’s bed which is usually given to end of life patients. You can imagine how I felt when i saw it. I handed it back.

Awful :confounded:

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Oh no that was a bit thoughtless of them but probably well intentioned. There probably is an element of box ticking going on but this is when you need to stick to your guns & ensure they are doing everything they need to be to help your m improve.

Best wishes xx

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Thanks all.

I needed some encouragement. I’m at the end of my strength in terms of hospital stuff but can’t ease off yet!

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Stay strong you’ve got this. Maybe take a little bit of time out so you can recharge your batteries. A day or 2 now will pay dividends later xx

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Quick update…there may be another change on the horizon. My mum’s improved a lot since getting over her last chest infection and PEG insertion. She’s focused, energised and engaging in her therapies. So she may now be referred to level 2 rehab afterall. We’ll get an update this week. We’re keen to support her recover from bad dysphagia- her speech therapist seems to have disengaged and not giving us any hope whatsoever (she’s refusing to do another swallow test pre-discharge which might not be for another few weeks, which seems weird). Can anyone here recommend any exercises we can do with her to practice her swallowing as we can justify another swallow test? I’d like to see her move on to thickened water which in turn will help manage her dry throat/ encourage speech.

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Thanks! Sadly, there’s little bandwidth for time off as we need to be supporting mum constantly according to the consultant in order to get her into level 2 rehab. It is what it is at the moment. I hope to book a holiday later in the year but right now I can only take the odd day which is when I need to catch up with work and life admin.

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It’s very difficult I know. But sounds like things are moving in right direction for your mum & fingers crossed she gets the rehab referral she needs.

Best wishes

Ann