Hospital say ready for discharge, family disagree

[Pl242]

Posting for any advice or insight which would be gratefully received.

MIL currently in hospital after a fall resulting in fractured shoulder. Also has dementia, limited mobility (now further curtailed by shoulder injury as can now longer use walker/zimmer), is incontinent and also generally very frail.

After just over a week in hospital they advised she was ready for discharge. They stated she would be fine with a care package of carers coming in four times a day to change her and move her from bed to chair then chair to bed. She would need to be confined to her bedroom at home. They said this would work as she was not attempting to move from chair/bed in hospital.

FIL, her primary carer, expressed that he was not able to cope with her coming home at this point. Prior to fall she was coming to end of 6 week care package following a minor stroke in March. He and other family members disputed the hospital assertion that she wasn’t trying to move from chair/bed in hospital. She has been. Is constantly removing sling as forgets she has a fractured shoulder. Dementia symptoms currently much worse in hospital due to delirium and drowsiness from painkillers. We all think it’s just totally unrealistic for them both to be confined in an upstairs bedroom as we don’t think she can be left alone so in effect FIL would be placed into an almost 24/7 caring role save 4 x 40 mins carer visits per day.

The hospital staff said our only option was to request a social services assessment, which we have. MIL remains in hospital whilst we wait on this. Since this there have been a few other incidents in hospital which have confirmed our view that her being discharged is unrealistic - passing out when physios try to get her to walk, pulled out a cannula overnight leading to blood loss and passing out. Doctors also saying she’s not making much progress, there are other things that have cropped up which they are investigating eg infection. Yet in same breath saying they think she should go home and would be discharged if a social
services assessment hadn’t been requested by the family. None of this makes sense to us.

Grateful for any insight on what we might expect next, tips on how best to manage decisions. FIL torn between wanting to try and bring her home vs going into a care home, but worried that if he says yes to the care at home package he’ll essentially be left alone to cope with a very difficult scenario.

Sorry this is long. Thanks for reading.

You need to talk to the assigned hospital social worker. Start calling. You also need to make serious noise about their misconception of her mobility between calls. Try the occupational therapist.

In our area we have 'discharge to assess' with a social worker involved, which means people pretty much always go home with a care package for a minimum of 72 hours. If this fails, then a care home is arranged.

As a community therapist I found this terrifying at first but I do see some positives. The biggest one is that 24 hour live in care is sometimes arranged in order to get someone home. This NEVER used to happen. The other big one which has taught me a lot is that people do often manage surprisingly well at home - that people are always at their worst in hospital. I knew that but seeing it in reality has been good learning.

Having said all that - things need to be based on properly understanding the person's needs.

I haven’t read all the responses, so sorry if repetitious. But being brutal (trying to be kind too), you can’t rehab someone with dementia, as they don’t tend to retain rehab skills. This is probably why it’s not been offered- but you could ask to have a phone call with ward physio/OT to elaborate on this. Also, patients with dementia, falling and having strokes, declining food etc suggests she is now entering last phases of her life, and is likely to continue on a similar trajectory over next months. I don’t think hospitals are good at explaining this to families. Maybe reframe a conversation with your dad, about moving her to residential care where she can be looked after for next months, and he can visit and enjoy the good moments with her, and not shattered from night time care etc. It would also mean you don’t end up in permanent crises management. From afar, with a previously ‘failed’ care package, think it sounds like she needs residential/nursing care, and it’s really about bringing your dad round to seeing that. If council were funding it, suspect they’d try care package again, but if you’re self funding, consider looking at care homes now. For self funders, it’s like booking a hotel and can be done quickly and often on trial basis too (try 2 months and see etc). Good luck, it’s exhausting

(Apologies- didn’t mean to imply directly it’s like booking a hotel. Just that assessments and decisions can be straight forward and relatively quick )

This is why we need to bring back cottage hospitals/ convalescent homes. I hope she gets better soon.

@Pl242 there seems to be a real myth doing the rounds at the moment that if you are self funding you do not need a care act assessment. Everyone is legally entitled to a full assessment by a social worker. This should happen ahead of any discharge process. Please push for this. Otherwise the hospital will assume you can manage at home. Equally you need to find out if there is discharge to assess pathway. This is standard in many areas now, and means that when a suitable bed in a care home or nursing home setting become available, the patient will be discharged there for anything from a day or two to 6 weeks while the community health and social work team assess their level of need. This is for everyone, not just people funded by the local authority. If this happens the team will work the family to find the best possible solution to care.

@HipHipWhoRay I agree, we found getting DM into a self funded care home very straightforward. SS not involved at all.

@Pl242 if you do go down the care home route it is worth looking at the different care homes in your area.

We were able to get DM into a home which has different levels of care available. DM started in residential care and is now in nursing care.

DM's care home has lots of equipment available to help her from bed to wheelchair to bathroom. Her room is pleasant and airy. The staff are good and look after DM very well.

@Thingamebobwotsit True - but it can take ages, and then the level of care recommended and provided might be inadequate anyway. That was our experience. In our case, MIL was desperate to get out of hospital, but it was held up for endless days waiting for the assessment. And then the care package put in place was hopeless (one carer to heat up a microwave meal twice a day and help get both of them up and take meds for a few minutes in the morning). It just didn't work without extensive family support, which was impossible due to work commitments. I mean, it would probably have kept them both alive (though we were really worried about the risk of accident for FIL, without a mobile MIL there to support) - but for any actual quality of life, they needed far more support. In the end, we wished we'd said no to the SS assessment and gone straight to private care more quickly - it would have avoided a couple of miserable and unnecessary weeks in hospital. If course, they were lucky to be able to afford that.

I am a SW in Adult services. I think provision varies from area to area. I would continue to maintain that it would be an unsafe discharge without a SS assessment because even though she is self funding, you will benefit from advice about appropriate care homes for her needs, and a written assessment will provide relevant information to a care home.

We do have reablement and rehab homes in our area and ward staff will not generally know what provisions are available. We sometimes have joint SS and health short term care home beds for instance, but our arrangements change regularly. Our rehab homes probably wouldn’t take her unless medics /OTs say that there is potential for rehab.

In your situation I would:
Push for SS assessment to explore options.
Start investigating care homes.

You may also want to consider what she wants if she is capacitated, and what you want as a family. If she doesn’t have nursing needs, you may find that she would not have a better quality of life in a care home versus what can be provided at home. But this depends on what FIL wants and lots of other factors - would she benefit from the social contact for example?

Lots to think about and no easy solutions.
Best of luck.

We had a similar situation and opted for a private care home. We sold the idea to fil as a temporary measure, expecting the move to be permanent. It was a tough time settling her into the home but eventually she settled was well cared for and much to our surprise 4 months later we were able to get her home, with a live in carers joining her.

Best of luck

Unfortunately dementia and restlessness often go hand in hand - I hate to say it, but the reality is being in a care home doesn't protect you from falls either. My MIL broke her hip in a home and a friend's Mum is on about her 3rd break - also in a care home. People are not supervised 1:1 at all times and falls still happen. The advantage in a care home is fast discovery and trained staff on hand. Both homes are good places with as many measures in place as possible - but when a person cannot remember they can't walk unaided and still try they are vulnerable to falling.

Thank you again for all these replies. Very helpful and much appreciated.

Totally agree with that. Risk can, to an extent, be mitigated. But it's still there.

The big thing a decent care home will have is that they are set up for care of the elderly. Corridors, doorways, room space are all set up for someone with limited mobility who needs support.

Basically the medical team have assessed that she is 'clinically ready' for discharge (this doesn't actually mean that she is 'ready' by the way, just that her needs are now care related not acute medical related)
You need to contact the discharge Co ordinator. Ask about the comprehensive geriatric assessment. Find out who in the family has been answering the discharge coordinators questions. Have they done a capacity assessment? What was the result? You need to know that capacity is situation specific, so even with dementia she could still be deemed to have capacity over 'where I should live' and they've recorded that she's repeatedly said she wants to go home.
Our situation is not dissimilar, dad was admitted 6 weeks ago, fractured top of femur, a week after the op, 2 hour phone call from a discharge Co ordinator who hadn't met him but was talking about 'discharge to assess' Then came post operative delirium. Then aspiration pneumonia. 4 weeks in somebody suddenly decided to randomly ask my brother what my dad was like 'before'
Please request a multi disciplinary team meeting (often called by the acronym MDT) be persitant. Make sure the hospital clinical team and the social work team have on record the wording 'unsafe discharge' say it a lot and make sure her husband keeps saying it. Find out what they are asking her husband when you're not there. Make it clear there is no one at home able to provide care.
Unfortunately my dad has other medical conditions prior to the fall and won't be coming home as he's now on a palliative pathway, yet we are still having conversations from the discharge coordinator that they would move him if they had a bed available as quite simply he isn't ticking the box for an acute bed in the orthopaedic ward he's currently occupying.
They focus solely on clinical need. Its in the hands of the discharge coordinator/ hospital social worker team what happens next in your case as she's now a 'care needs' case. Become these peoples new best friend or worst enemy, phone them and expect to be called back, say 'unsafe discharge' lots. Follow up telephone conversations with an email.

'Thank you for taking the time to speak to me on x date, we discussed xyz . You stated xyz...
It's brutal as they want the bed back and within all of this you're having to learn as you go. Particularly if her husband is her advocate then you'll find there's conversations going on that you dont even know about and you risk him being so overwhelmed by the options they are bombarding him with that he'll just agree. Again, if she has capacity and agrees to try the 4 care visits then it will be arranged and relatives wouldn't even be told.

Sadly this constant fighting is just the norm now. If you don't use the right words, keep phoning and emailing, you get pushed around.

There are re hab hospitals. I think they used to be called cottage hospitals?
I worked, until recently, in a re hab hospital which took in mainly frail, elderly patients and a lot of these were dementia patients.

I would ask the hospital about these. Sometimes they are quite a distance from where you live, but it is probably a good option for your MIL.

Does your MIL have savings/assets over £23,250 in her individual name @Pl242 ? Any joint savings/assets are split 50/50 in a local authority financial assessment.

Do MIL and FIL have any additional property or land, aside from their home? If so, MIL would be self funding.

FIL needs to make plans to return to his home; their property will not be included in the financial assessment if he is living there.

If MIL has Savings in excess of the social care threshold, you could privately arrange a respite bed in a care home of your choice on a temporary basis to give time to review.

It may be worth saying to the hospital and social services that you think MIL has reablement potential (that she is currently not mobile, but has potential to be). The previous care package MIL had sounds like a reablement package and there are some post hospital respite care packages available in certain situations and certain areas, subject to availability.

People are not supervised 1:1 at all times and falls still happen.

@Beamur - even when people are supervised 1:1 all their waking hours, falls still happen! Anyway, in DD1’s care home, the careworkers are trained to let the residents fall, rather than risk causing themselves an injury, by trying to break their fall. (She has up to 12 falls a month)

It’s obvious that she can’t stay at the hospital for the whole time it takes for the arm to heal, but equally she can’t go home. And a dementia patient probably won’t understand what they’re telling her in a rehab/physio place. So in your shoes I’d get visiting local homes (take FIL) and find one you feel happy with. Try a few weeks of respite initially - see how she recuperates and how fil feels about coping with her. I always feel so sad for an elderly person having to cope with a dementia spouse.

OP having been through this with a parent I agree with people saying that a residential home is the best place. The strain on FiL and you if dealing with carers, trying to keep MiL safe etc will be immense.

Age U.K. would be give advice about how you would fund the home. I think their call Centre is open today. You will probably need to look for a nursing home that offers nursing care.

I'm sorry your going through this but having gone through something similar it sounds as if she does need a social care assessment and she would better cared for in a care home. It sucks. She would have to self fund if they have more than £16k in assets too.

My nan currently pays £4.5k a month!!!! For her care home. I'm not sure what we are going to do when the money runs out.

I agree. My mum was discharged in similar circumstances and it was awful. Community care often missed appointments or could only pop in - certainly never stayed 40minutes as previously quoted.

DH had had two months in hospital, during which time I had experienced a close family bereavement. Hospital said they were discharging him home with carers four times a day. I said it wasn't safe and I wouldn't be there. I held firm (also burst into tears and walked out for five minutes) and they funded him for a month in a nursing home until the worst was over.

Care home is not necessarily permanent. If she can heal from her fracture there, and give FIL some respite too, they may be in a better position to cope at home in a few weeks time.

Had this recently with my mum.

We refused to accept her home. It was then proposed that she would go into residential setting for assessment. In the end she was discharged from there to home BUT we refused to accept her home. That's your only route. The hospital has a duty of care and she will qualify for i think its up to 6 weeks respite care for assessment. When she is in that placement, then you have the breathing space to decide next steps. Whether that is full time residential or home with care package.

Refuse to accept her home. Your dad must be the one to do this if its his home. Specify that there are long periods where no one is home, there is no one to care for her, there isnt suitable equipment at home, bed, chair, stairlift, bathing facilities etc. Refuse to accept her. Stand firm.

Usually a patient needs to be medically fit for discharge AND therapy fit for discharge, which would be back to their baseline mobility, or as close to that as possible.
I've never heard of upstairs living. It would normally be downstairs with bed and commode etc.
You could ask the ward to keep night diaries. If she has night needs is your father going to be able to meet these?
If she hadn't had a package of care before the normal procedure is usually to try homw with a POC before thinking about care homes.
There are usually plenty of community hospitals who take rehab patients.
It sounds likely to be a failed discharge if she goes home now and she would end up back in hospital so they wouldn't actually be gaining a bed at all.