Advice to resist pressure for discharge of MIL to my home

[Weaktea]

I’ll try to be brief. I’ve cared for Mil at my home for 5 years. Now severe advanced dementia and stage 4 cancer, incontinence she’s 92. A recent fall has left her with a broken foot and she’s on day 9 in hospital.
she is now completely delirious but they have said medically fit and need to have a discharge plan. Would I have at her my house? I’ve said no. They Mentioned hospital bed downstairs, hoists and visits from carers.
she used to have a little
mobility so I could just about shower her but they don’t think she’ll regain mobility.

i was at the end of my tether anyway, they have said they will refer to social services which I welcomed.

what can I expect or push for?

thanks!

@GivePeaceAChance The world of hospital discharge and social services itself, is a very different place to ten years ago :(

"We had POA on her health and finances and paid all her bills for several years. The SW was so adamant MIL had full mental capacity that I said if indeed that was the case, we would relinquish control of her finances and when her care bill needed paying, they would have to speak to MIL directly about it - which of course, ended in disaster because MIL didn’t have a clue how to pay it. When the bill reached £15k, they rang me and asked where her cheque book was. I was very blunt and said I had no idea and that they would need to ask her because, “You insisted she had MC"

SS brought this on themselves.

I am not saying the solution is not expensive but I also see all the time,families insisting their relative remain in hospital for a health funded short term package of care on discharge, which can take weeks to become available, even when they know that their relatives have savings over the threshold and will end up funding the care in a few weeks. So the hospital is used as a hotel, to get a couple of weeks free care whilst the Social worker does the financial assessment and then they have to pay anyway. Meanwhile, those 4 weeks they spent in a hospital bed awaiting their free care, prevented 28 bed days for other people to receive treatment. These same people then complain when their hip replacement or surgery takes over a year to come through but cannot see the connection. Our surgical wards are full of medical outliers awaiting care or placement or family to finish decorating bathroom etc and so they have to cancel yet more elective surgeries. It is all connected and we all need to take some personal responsibility. If the patient genuinely has no money, the family are not expected to fund any of the care. If they have the resources,they should use it.

a couple of weeks free care

This leapt out at me because family carers provide free care for YEARS in many cases.

"im afraid there is a terrible shortage of beds"

The man playing the doctor in a 1974 episode of Steptoe and Son called Upstairs Downstairs Upstairs Downstairs. 1974 NINETEEN SEVENTY FOUR

FIFTY YEARS AGO

Assessing someone's mental capacity is incredibly complex and it's decision specific. Just because someone cannot manage their finances does not mean they lack capacity for other decisions. Many enemy people have their finances managed by family whilst they have full capacity for most decisions.
There is complex law surrounding this which health professionals have to follow. We have to make the question as simple as we can and give the patient every opportunity to under stand what is being asked.
The decision about returning home versus a care home for example. If a patient is able to explain and understand the risks of being at home alone with carers visiting every few hours, they are deemed to have capacity. So if they say " I could fall and break my neck and die" and/ or " I might need the toilet after the carers leave and have to sit in a soiled pad which could give me pressure sores" then it is likely they have capacity around that decision. If they just say," I will be fine, I manage everything myself and don't need help, or...I am not going to fall, don't worry dear, it is clear they lack capacity, but there is plenty of nuance and even variation at different times of day for some people.
It is a very difficult job to do and clinicians generally take it very seriously as you are taking away control for that person when you den then to lack capacity and that it's a huge thing to do to someone.

@vdbfamily Maybe family members are working just like you are!

I don't disagree but an acute medical hospital, where people need to be to see doctors, is not the place to be even you don't need a doctor, as those 2 weeks could treat several other people. I don't know all the answers but I do know that acute hospitals with 25/30% of their beds filled with people who don't need to be there, it's not a good thing.

And all this is the fault of unpaid family carers how exactly?

You spoke to your experience but your parents have private resources to pay for care. If you work in this field you must know that family carers can ask until they are blue in the face but every assessment will say "family coping" until the patient ends up in hospital. If the elderly person does not have assets like your parents' they get nothing until they hit crisis point.

But yes, blame carers for the problems and lack of cooperation between social care and health care.

Money is absolutely part of the problem but more cooperation between the services and more consistency of approach between neighbouring trusts does not need vast sums of money and would enable better use of the resources available. But its easier to point fingers at the other "arm" and dump the problem on unpaid carers of elderly family without the luxury of large assets.

My late mother had dementia and lived with us. She was hospitalised with a chest infection and a UTI. Previously, we'd had Hospital at Home for her, but this time the surgery wouldn't send out a GP, so she ended up in hospital.

I wanted her home, but she only lasted two weeks before she died.

To my shock, this time the Homecare Manager for the area (possibly a new start) insisted on equipment that our carers said Mum didn't need.

I was forced to throw out Mum's small double bed to make way for a hospital bed. I was forced to have a very old, very large hoist in the house. It was never used.

The Homecare Manager tried to bully me into throwing out a lot of furniture to make way for the hoist, but backed down temporarily when the care company under manager said that they didn't need it. Nevertheless, she insisted on the hoist being there.

I asked if the men delivering the bed would help me to carry the old bed into the garage. "Oh no!"

"You do realise that my husband has hemiparesis following his stroke?"

"No. There must be someone who can help you."

"No. I have no children and no siblings."

"Neighbours."

"The man next door has dementia. The man opposite has cancer."

"There must be someone."

"There isn't."

I had to drag that ruddy bed out myself. To this day, I don't know how I managed. (It didn't come apart, in case anyone's wondering.)

I've swapped experiences with other people in similar positions. I've dealt with two very good Social Workers and one useless SW. All the SW Home Managers that I've been aware of have been horrible - maybe because they're being pressurised.

I'd tell them the truth. Tell them you were not coping and that you're at the end of your tether.

When my late husband had his final hospital stay, the ruddy doctor hadn't consulted with the OT and was getting ready to discharge him.

DH had been mobile before he entered the hospital. He wasn't mobile by the end of his stay. I wanted him home, but I wanted the house to be in a state where I could cope with him.

I was being pressurised to hurry and get the house ready. I needed to move round bedrooms. Our furniture was upstairs and I needed to get the bed moved from there down to the room that used to be my mum's. (By then, I had an Ikea day bed in there - not suitable for DH.)

I had to tell them that I couldn't carry the furniture myself and I couldn't magic a removal firm out of thin air, particularly during lockdown.

The doctor caused problems for me by telling DH that he was being discharged. I already had a shoulder injury from helping him up and down, etc.

In the end, I got the bed raiser I'd asked for and we got a carer coming in in the morning (temporarily until I could do what was needed) plus physio sorted out at home.

However, I feel we were let down. We'd asked about grab handles and - in the end - I got the one in the wetroom installed myself, after we were finally assessed after DH got home.

The rail he needed to access the house was installed the morning of the day he died, some months after he got home.

My late husband was in a stroke rehab ward 11 yrs ago. The chap in the bed opposite was told he was going home. He and his wife had been told he'd get a stairlift. No stairlift had been installed.

They told the wife to move his bed into the livingroom and to put a commode there. She refused. (Another wife had agreed - had been promised a through lift for her bedridden husband if she took him home. The lift never materialised.)

Her husband had left side hemiparesis and was still learning to walk. He was doing everything asked of him by the physios, but he he also had a thalidomide disability: his "good" right hand was deformed and couldn't grip.

She played hardball and told the hospital OT she was refusing to have her husband home.

A stairlift was quickly installed.

Sorry to everyone who has experienced similar or worse. I didn’t expect so many replies but will try to answer some questions.
She has no stake in my home and does not have savings over the threshold for care fees. She used about £11k of her savings years ago for the extensive adaptations needed to have her living here safely.

I have tried to get help, we are under the care of the local palliative team. They offer to visit once a week, on a Sunday. If they visit they just chat to her for few minutes, take her answers at face value and leave. If I ask anything medical they tell me to speak to the gp. They haven’t even been recently they now ring me and I ask if I ‘need the visit’ this week so I just say no now. They did refer to SS and they came and fitted grab rails and supplied me with a pressure cushion. We get 6 weeks of respite.

@vdbfamily I take your point but don’t
think it’s usually ever that simple. We haven’t really taken anything from the state (this is the first time she has ever been in hospital even) and must have actually saved them thousands.

Then there is the sense of care and duty for loved ones which can be strong if you’re a bit of a soft touch. It hasn’t always been horrendous, we (particularly DH and our DCs) have had some precious memories. but it does become horrendous and then a crisis occurs. I don’t think it’s fair to say it’s poor planning.

We did have a plan that we would look for care this year, unfortunately the crisis came first.

You have to hold firm and I agree record or write down notes and then ask them to sign to agree. We were gaslit by our social worker who deliberately ignored and omitted vital information from the care plan my nan required. I complained and escalated and we refused discharged stating it was unsafe. NHS versus social care are in battle as she was medically fit to be discharged but not socially fit anymore (dementia) including recently being escorted into hospital due to attacking people in public and she even punched a nurse during hospital. Eventually the social care manager came to "reassess" her case and we got a huge apology from her that the social worker had not done her job properly, ignored evidence etc. Finally we got agreement she required a care home of which we were funded 12 weeks worth from the council, in order to give us time to sell her home. She also got chc funding from the NHS to contribute. 6 years later she is still there (albeit doesn't know who she is or us and is aggressive) but medically still going at 97 years old. It is so important you fight for this if you do not feel you can safely care for her anymore. It is horrible to have to push back for the right help 💐

The problems you mention are all caused by the system and lack of funding, not family or carers. Point your finger at the government, not the poor families who have been to hell and back providing care, while also struggling to work and keep their heads above water financially.

This happened with me and my mother.
She was deemed medically fit to come home, however she lived in a second floor flat.

She was diagnosed with dementia and delirium and would go walkabouts.

My family and I argued that whilst medically fit, she wasn't mentally fit.
We couldn't look after her in our own home either....so a nursing/care home was found and she was very well cared for.
Her dementia got worse week on week and she was diagnosed with Alzheimer's in the end.

Maybe ring up a few care homes either dementia units....

You definitely need to get a social worker involved but my experience, sorry to say, is that they will send her home with a hospital bed, hoist and commode and carers maybe four times a day so you won’t have to do the personal care. Are you receiving attendance allowance? This problem arises when the family, such as out’s, cannot afford to pay nursing home fees. Our council would not pay for a nursing home as DM did not have dementia.

On a slightly different strand. Lots of people say the % of people who go into care homes is very low. I dont think it is and it will increase year on year. Both Mum and Dad ended up in one funded by the sale of their old home.

However here is an idea. Have a requirement when working to put some money into funding your old age. Before the howls of protest start could I say that we are moving more and more towards blaming and expecting the government to fund everything we do. Of course getting old is not the fault of the person. However in my exensive experience of managing my two very elderly parents and endless hospital/care home/GP visits.

This cannot continue.

Very elderly people in hospital screaming and shouting in wards. In one instance when I refused to have a lady with extensive dementia next to Mum because she was dangerous I was told the dementia ward was full. She had to be there. The ward was short staffed. It was hell on earth.

We honestly need a grown up conversation about this and how our country is going to fund this.

Severe advanced dementia, aged 92 and stage 4 cancer?
There is only one place suitable for her and it's a nursing home with professional care!
Please emphasise her safety to SS above everything else, say you cannot ensure this in a home environment. This worked for me and my late DM, I said my main concern (and the bottom line) was I just wanted her to be safe.

We’re all agreed it’s not a good thing. But this board is full of people trying to get help from SS, who have the capacity only for crises. Or with elderly parents refusing help. Over and over again, the lived experience is that no help can be obtained until there is a crisis. Do you really think families are not looking ahead?

The generation now in their 50s, 60s, 70s understand what the situation is, and by and large are making provision for their futures. But the generation older than that have parents who died from cancer of heart disease, who didn’t as a rule linger with dementia, and they saved money to pass to their children. And it’s this generation that the people on this board are struggling to care for against a background of overstretched NHS and overstretched SS.

Quick question I keep ruminating on please?

I feel like I will be asked in what ways she would be unsafe so that this can be ‘solved’. She’s not really at risk of falling, she can barely move so is unlikely to even try and get up and they’ll say she can’t get out of a sided hospital bed. She refuses to even stand for the OT. So how is she unsafe?

There's nothing they can do if you refuse to take her. Stay strong, they cant force you. Just say no, you don't have to give anymore reasons.

@Weaktea just tell them that you are NOT taking her into your home again!! No amount of coercion will make you look after her anymore! Your husband is unable to do it!she is going into care, one way or another! you are also getting older as is your husband!

She may need help during the night if she's in pain or distress, or to go to the loo or just to wander around -- what would happen if you didn't hear her? She could well try and get out of bed herself, especially with the advanced dementia.
You say she is not at much risk of falls at present but this could change very quickly.
Also what would happen if there was a fire or other houshold emergency?
Do you have any health conditions which would make it unsafe for both her and you to care for her?