Can I refuse Mum's discharge from Hospital

[LadyShmuck]

I was going to NC but I'm so tired I can't work out how to, so if you know me, hi!

Background to this issue.
Mum is 71 with undiagnosed dementia which has deteriorated rapidly over the last 2 years and she is now doubly incontinent, unable to care for herself, cannot communicate in any meaningful way and needs 24/7 supervision. She lives with my dad who can't walk and has significant mobility issues. He cannot meet her care needs at this point in my opinion. Up to now they have refused to get carers, instead stumbling from one issue to the next with frequent propping up by me and my siblings.

Over the past 3 days she has had 2 falls (collapses? Can't be sure) and also it has become apparent that she hasn't taken her blood pressure medication and her blood pressure was at 250/118 on Monday night. We have ended up in A&E on all 3 nights, finally this morning a doctor decided to admit her and said that we should expect her to be in for a while for her to be assessed and get things in place so that she can return home safely or go into residential care if that was more appropriate. I left my mum in the Early Assessment Unit at 8am this morning.

Around 12 the hospital called to say they would sort an outpatients physio appointment and for their 'interface' team to assess her with a view to discharging her today. I said this didn't align with what the doctor this morning had said on admission and that I wouldn't support a discharge today on the grounds that she clearly can't be kept safe at home. The nurse I spoke to repeated their plan and given that the call woke me up after being asleep for an hour for the first time in 36 hours I'll admit I wasn't at my sharpest when I took the call.

What can I do here? What should I be asking for, I cannot allow her to go home today, my dad has finally admitted he can't cope and doesn't want her to come home as he can't care for her or keep her safe.

Any wisdom appreciated, I'm panicking at the thought of her coming home today and spending another night with her in A&E to go through all this again.

Admitted is not a bad think. It gives everyone time and space to workmoutbwhats best for her.

Pneumonia again isn't necessarily the end though it can be or can be the stat of the end in older folks it really depends on what else she has going on. Hope things look better over the next few days.

Exactly

It is not safe

What will be in place

You expect at least 3 Carer's to attend per day at thre very least

Poor you
I have been through. This hell
Last year

My dad sadly died few days ago
But in the end a good package was in place

It's perhaps early to start "preparing for the worst". It's not an uncommon infection to see in people who are elderly. Sometimes the antibiotics work and it clears. Sometimes, as a PP said, it can be the start of a decline. In the kindest of ways, focus on what you can do now rather than guessing possible outcomes. You've advocated well, OT have assessed and won't agree to your mum going home, antibiotics are underway for the pneumonia.

If you can, visit your mum for her comfort and to break up her day, especially at mealtimes. There aren't enough staff to assist people individually with eating so family are invaluable then, even more so if you keep a note of her appetite and drinking. Try to take in some family photos for your mum to look at and something to alleviate boredom. And very importantly, pick up dirty laundry and take in clean stuff more often than you think you need to. There's not a lot of space so you can only take in a small amount but it is amazingly how quickly all forms of clothing become soiled with urine, faeces, drinks and food. It's rather like small children but with more faeces in a lot of cases (especially when someone either cannot recognise the need to go, cannot get themselves to the toilet or are experiencing dietary and medication changes).

Chin up, it's exhausting but you'll manage. Make an effort to befriend the staff if you can and get an idea of the ward routine so you know when is best to call. Staff do generally and genuinely want to help, they're just a bit buggered at the moment.

Op, you must be so tired.
Hoping your DM rallies quickly now she being treated for pneumonia.
Take every opportunity you get to recapture lost sleep. Could it be a plan you and your brother stagger visits and go for less than the maximum time allowed this weekend - just 30 mins not the full two hours etc? DM will need to catch up on rest just as much.
Pack snacks, toothbrush and spare pants for yourself so you are one step ahead. Excellent news that respite care being discussed

Gosh poor her and I feel for you also

So so hard

I have sat in hospitals with my poor father and cried and cried

I am still crying now that he is gone

You sound like a wonderful daughter
Treasure her and continue to fight all the way

It's a bumpy journey but I'm so glad now for all we did xxxxxxx

And hugs to you @thisisasurvivor
You also need precious sleep

Thanks so much

It is never easy xxxx

But this is why hospitals are full to the rafters with what is quite meanly termed ‘bed blockers’. Essentially elderly patients who have had falls and accidents because they live in accommodation completely unsuitable to them. OP’s mum now needs 24/7 care, that cannot be provided at home by family or well meaning neighbours.

I’ve seen this play out many times, and it never ends well - usually a hurried admission to a care home where the patient dies shortly after in a bewildered state because they don’t really know where they are.

It’s much better to settle them in after the first fall and then they can get used to their surroundings before taking a turn for the worse, which hopefully will be delayed by the fact they’re receiving proper care.

It also means hospital beds are unavailable for those there in completely unforeseeable circumstances which isn’t fair really.

Im sorry about your mum OP 71 is very young for this level of dementia, it must be very distressing for you. Hopefully you can get her settled in somewhere now she will be properly looked after.

Please do. If their is not good care for her refuse it ! Contact Pals

Sympathies. Been in a similar situation. Hold your ground and keep mentioning full assessment for discharge, unsafe at home and your Father's disabilities.

It was awful and the staff used all sorts of emotional blackmail on our family. Despite the fact my mother had already been discharged home once to a house with an upstairs bedroom and stairs at the front door unable to climb stairs. My Dad (himself no spring chicken) ended up carrying her up them.

Dad was had pneumonia several times. MIL gets it a couple of times a year.

They do have some savings and a house owned outright but we'll need to navigate what we should be paying for etc over the next couple of weeks. House won’t be included in the assessment while he’s living in it.

My best wishes to you and your Mum. I hope she responds to the pneumonia treatment soon.

My 87 year old mother was in hospital with pneumonia over Christmas and New Year. She had very low oxygen sats, was a dyed in the wool smoker (40+ a day) and we too feared losing her. She made a full recovery though, and is now using nicotine patches and vapes instead of cigarettes, which is something we never thought we'd ever see.

So pneumonia doesn't always mean the end, although it can be scary.

With regard to the unsafe discharge, what we all said yesterday still holds and you may now have to make your point just as forcefully to the staff on other wards as internal communications within hospitals can be pretty poor.

Keep OT onside. She cannot be discharged unsafely. She needs full assessment. You and your brother are not available and your Dad is unable to cope. Keep ramming that home to staff and do not let them fob you off.

All the best.

Pneumonia doesn’t have to be the end of the road. My 89 year old mother just spent 10 days in hospital with double pneumonia. She is prone to getting it but hasn’t for a few years. She is now back in her care home. The infection has gone but she is still very weak and has declined cognitively quite alarmingly. But she is still here. Although I’m not sure she want to be

So far so good OP. Once admitted there will have to be something in place before discharge. Just make sure it's good enough.
When DM was in this situation there was talk of respite care. The initial week or two would be funded but after that you have to pay unless limited savings or income. What happened in the end with DM was they sent her home with a care package which was so inadequate it was a disaster. Sister and I did a rapid tour of care homes to arrange her to move in self funded and we found a lovely place. Sadly she was readmitted to hospital within the week and died.

Maybe not as bad as I thought about the pneumonia, my Grandma got pneumonia in hospital after a stroke and died within 4 days so I think I just assumed it was terrible news.

The hospital seem to be struggling to control her blood pressure, they said overnight it was back into 200/120 region even with the medication so I need to ask about that when I call at lunchtime.

I feel awful leaving her in hospital, I hate thinking of her all confused in there. I just hope she's got lovely kind people looking after her, the nurse I spoke to this morning was nice and it did ease my mind a bit.

It is super hard to leave her OP, but it's equally important for you to get home to eat and recharge so your have you wits about you to deal with decision making/chasing.. There will be lots of lovely people in her ward doing their best for her, even when over stretched, If you are not beside her she will probably drift off for a snooze. Does her bed have a white board behind it for patient details? Next time you are in, bring your own white board marker and write on the board things that will help the staff. Needs her glasses on at all times. Mum is always thirsty. Mum loves very milky piping hot tea. Mum has extra cold feet but the warmest heart. Tiny little nuggets will make her connections with people a bit better as with dementia she can't say these things herself.

You are doing brilliantly @LadyShmuck , imagine if you’d just accepted her back home , you would have had to go straight back in again . She is obviously quite unwell so is in the best place - is your dad ok at home alone ?

I work in homecare. An assessment needs to be carried out before your mum gets discharged from the hospital. It sounds like your mum needs a homecare package and your dad could possibly need one too. Equipment would need to be put in place in their home to provide safe living such as hand rails etc

@Floralnomad dad is managing ok, were just having to pop in to walk the dog and take care of laundry. We're going to need to get dogwalker and domestic help sorted for him in the interim. Longer term he's looking at moving into a flat or bungalow so he can get around easily.

I went to visit my mum this afternoon and she actually seemed better than she has in about a year. She was much chattier than usual and although she didn't know why she was in hospital and couldn't remember what she'd had for her lunch, her speech was a lot better and she managed a few full sentences whereas she normally only manages a couple of words.

Be really firm about what you are and aren't prepared to do. It took a strongly worded email from my friends son, to the hospital social work team. To get them off our backs, about buying new furniture and preparing for discharge. We stood our ground and he was discharged to a nursing home.

Sounds like she is improving then , but stand firm on the fact that she cannot go home even with a care package .

Has she officially been deemed not to have capacity OP? If hospital are saying she has capacity to made a decision about going home then there is little you can do. It sounds like she may be quite advanced and not have capacity. Ensure that is documented if so. Decisions will then have to be made in her best interests. It's normally quite a jump to go from living at home with no carers to going into a care home. It's likely they will encourage your mum to try having carers first.

We are getting towards this stage with my dad and it sounds really heartless refusing to help. But you have to. Social services are so stretched that if they think there is even a 1% chance of discharging someone to be cared for at home they will. So you have to be very, very firm. And it's not being heartless - you have to think about your mum, and you, and your dad, and your family too. All the hospital is concerned about is your mum.

Hope you get appropriate care sorted for her soon.

@Hairyfairy01 that's a good question about capacity. I assumed they had judged her not to have capacity as they've been asking me everything about medications, allergies, where she lives, who looks after her etc however I will definitely need to clarify this. The hospital have not said that it was my Mum wanting to go home, just that they didn't think she had medical reason to be in hospital (which now seems not to be the case, as they're struggling to control BP and she's on antibiotics)

As for moving straight from home with no carers to a care home, it's our mistake to have not had care in place, although I do think a lot of the resistance stemmed from my dad not wanting people to see her in the state she was in. He was embarrassed for her.

Even carers coming in multiple times a day wouldn't be enough, my dad isn't mobile enough to help her in between care visits, and she's started to do some fairly dangerous things at home that my dad had never mentioned before she went into hospital. To be honest, my dad will need domestic help, he can take care of feeding and washing himself but his mobility really limits him. If there was a way for her to stay at home safely and have a good quality of life, that would be the preferred option, but I think we're way past that. I wish now that I'd tried harder to make them get help earlier.