DM about to dangerously discharge

[DorsetCamping]

Apologies for the continuing saga but am at wits end.

To be brief DM (74) has been in hospital 3 times over the last month due to various conditions and the last admission being for 10 days and near deaths door. All pointing to her continuing decline and inability to cope independently.

She reluctantly agreed to go to a rehab unit last week and seemed to be making reasonable progress, no doubt due to be constantly monitored and with the 24/7 care.
Tentative Plans were being discussed for her to go home with an enhanced daily care package.

However, yesterday she had a fall, whereby her walking frame tipped and she banged her head. Thankfully she is ok but naturally it raised deeper concerns about her safety and needs when she goes home.

Onto this morning, she said she is self-discharging and that if I don't go and get her tomorrow she will call a taxi . Said that there is no way she is staying, hates it and is exhausted.
I have spoken to The nursing staff who are adamant that it is not safe for her to go home, especially with yesterday's fall and that her care package needs a new review. More worryingly is that no carers will even be available in the immediate future given COVID and calls on resource.
They have told DM all of this but she it's falling on deaf ears.

I am so cross her with, it's like dealing with a toddler. She has no clue about the worry this is causing or the implications with lockdown. All she keeps saying to the staff is that either I, or her elderly neighbours will help if need be.
I mean, WTF?!
They did ask me about her mental health as she seemed so low today but ultimately it is her decision.

I am so exhausted with her. All she is being asked to do it sit and recover - you'd think she was in a prison cell the way she goes on. I can pretty much guarantee that if she goes home tomorrow she will just end up in hospital again and we'll be back in the same merry go round.

This may sound uncaring and cruel but go off grid to your mum for the next 72 hours. Be absolutely unavailable to her; she is safe and she needs to rest. This is your time to rest and recover, too.

Five years ago this week my DF had a catastrophic accident after getting discharged too early. He was back in hospital after just four days and died 96 hrs later. Know what you are going through.

Spoken to SS, they are escalating reinstatement of DM's care package but can't guarantee it will be by tomorrow.

May well need to off grid for a while!

No update about reinstating care tomorrow ...bracing myself for the fallout 😖

Will have my fingers and toes crossed for you

It's very hard I know but you must step away. Do not go and get her. You need to tell social services and the hospital what you have told us here - you are a key worker, you have children of your own to care for, and so you CANNOT take on your mother's care. I had to get used to including 'I work full time, I'm a parent myself with primary age child, my husband works away and I live a two hour drive away' in all conversations about my dad's care. Social services didn't like it but they had to accept it. Get your statement in and make it clear they will be responsible if she has any problems after discharge.
The alarm shouldn't be for you to respond to. You need what I know as a 'community alarm' that if pressed goes to a central team who will answer it and go to the house if necessary. You have to pay, but it's worth doing.

Thank you for all your support, I am truly grateful.

SS have just phoned to say home care is in place from tomorrow teatime. She will have 4 x daily visits, with a stricter regime of monitoring DM's wellbeing. The District Nurse has been instructed to make regular visits to check DM's leg ulcers and she will be allocated a social worker.

Can't deny I'm not Struggling between feeling glad I no longer have to fight with DM about staying in rehab and awful sense of foreboding about what what happens now.

Very few alarms work like that, it goes to central monitoring centre and they call one of the two emergency contacts on her file. Unless it's clear that she has fallen or has a fire /needs an ambulance/ fire service they call the relative /neighbour to go check first or to meet ambulance there. It's hard (almost impossible!) to get an agency to agree to be emergency responder for a client with lifeline (unless your area has a specially funded service which most don't)

Well if she goes home without care set up she'll just bounce back into hospital again or have a rotten time. Don't facilitate it. It's fine to say tell mum once care has been set up to start I'll pop round but I'm not stepping in for a discharge before we have a start date,

Carers are working during this period, but all care agencies are busy so it takes time to find her slots again. That's not adult services being difficult, that's just how agencies work as 28 visits a week (4x daily x 7 days) is a lot to cover and weekly rotas may have already been sent out - so that's a lot of rejigging for care cordinator in agency to do as they have to guarantee they can cover every care call from that point, before they can accept a package even if it's a restart.

Please take a mental step back. If mum has capacity she knows the risks even if not acknowledging them. Ward staff can do MCA.

She's been admitted to hospital 3 x recently despite a 4x daily package, this tells the story that she's not really coping or that her health is deteriorating / fluctuating a lot. You can't prevent the road she's on with worry or angst in your part, nor fix it for her.

It's what she needs to do for her own sense of control until she feels ready to listen or accept her limits now. Or for increasing evidence that she's losing capacity or being unrealistic

All you can do is be wise, give advice, stay strong, remind her the nhs rehab unit will be her best opportunity to increase her strength, get more mobile and well enough to stay independent at home longer but it's her call, You don't need to step in to fix her choices, she's likely going to fall again soon and it sounds like she'll need to keep failing before she accepts she might need more.

Argh cross posted. Glad it's all set up OP. That's great news

It's going to be ok Dorset. She's going to have people in and out all day, she'll be eating regularly and they will be reminding her to take her medication. There will be people other than you keeping an eye on her so you don't need to feel that you are bearing that load by yourself.

Now I've made you feel better, the next thing to brace yourself for is her getting rid of the carers.

How are the carers going to get in to her house? Is there a key safe or something in place?

A key safe is a good idea. I think you can get them from B&Q. That's 5 visits some days including the district nurse. That's good news. Maybe she will feel more secure having people call more frequently and you will have a bit more of a break. I'm a community nurse and I see some relatives exhausted caring for an elderly relative. Make sure you make time for yourself.

On the face of it, I'm ideally placed to take care of my father - I'm retired, no dependent children, DH still fit and active, live 10mins walk away etc. But I wasn't willing to do it (he would drive me distracted), and I found SS and indeed hospital discharge team very sympathetic to that. I was under not pressure to "do my duty as a daughter".

Yes, thankfully DM already has a key safe.

Hospital transport will be taking her home this afternoon in time for the teatime carer and I will meet her there. District Nurse has been also been lined up to administer DM's insulin in the short term and dress her leg ulcers longer term.

I've also been advised to try and get a referral to a Community Matron (?) to oversee DM's conditions. Not sure whether that has to be instigated via the GP?

Told my DH that it was his job to look after her
I am in my 50s and (IME) this belief is widely held by people of my parents generation, they speak and act as if we are obliged to Sacrifice our well-being in order to keep them alive for as long as possible

Great news. The district nurse can refer to community matron.

Thanks for all your advice @HappyHammy

Take care and hope mum is happy to be going home

B1rdbra1n, yes and I think he's an only child because why have another when you've got your 'insurance policy'. She died several years ago, so it's not a problem any more but it certainly was on more than one occasion.

We don't have any children so goodness knows what will happen to us .

Well not a great start. First carer and District Nurse arrived at 4 - all good and I left them to it as I had to go to work myself.

10.00 frantic phonecall from DM, bedtime carer hasn't turned up. She can't stand up from the sofa so has slid herself off it and crawled to the bathroom as she was desperate for a wee. I am 40 mins away so have to drop everything and race over. DH also driving over as he is closer, leaving DC at home. When I arrived DH told me he found DM on the floor, thankfully not hurt but no way is he going to be able to pick her up (she is very overweight)

So as I type she is now on a mattress on the bedroom floor, quite comfortable under her duvet but I am beyond livid. This whole house of cards is utterly reliant on good care being in place which we were assured was all in place. What if I hadn't picked up the call? What about her meds (which I have had to administer)? What if she had hurt herself?

No point ringing anyone at this hour but I will be ripping someone's head off in the morning. I also have no clue how we get DM off the floor. I cannot ring for yet another ambulance

Oh you poor thing! If you can’t lift her and she is at risk where she is, then it’ll have to be an ambulance. Do you have an emergency number for the care agency so you can get them to assist seeing as their failure has caused the new issue?

Sorry I’m late to this but having similar problems myself. So sorry about last night what’s going on ! Hope you find out today it’s disgusting if there was no
availability to call at your mums they should have told you.
I’m just in the process of organising care for my mum. I’ve had the assessment over the phone and be passed to the local team, just waiting for a phone call, hoping care can start soon as dh and me wants some need to go on holiday ASAP.
My mum has a pendant alarm with my name and someone else’s, would it be possible to take my off ? I can’t take anymore emergency calls through the night. What would happen, would they send an ambulance? Feeling so gulilty but so desperate too. Good luck to you. Hope things become easier

they speak and act as if we are obliged to Sacrifice our well-being in order to keep them alive for as long as possible I think everyone would want to keep their elderly relatives alive for as long as possible (providing that's their wish too), it's the sacrifice bit which is the problem. But things have changed so quickly. I'm a bit older than you, and my parents grew up to adulthood before the NHS existed. My grandfather was petrified of going into hospital because the building had been converted from the workhouse. It's not so long since the family was the only reasonable option. And of course it was less often so onerous for so long - people died of heart problems and other nowadays manageable illnesses before they got to the horrors of dementia. So a not wholly unreasonable belief has changed quickly into being quite unreasonable and out of tune with the other responsibilities of life.

Dorset That's dreadful! So sorry that's happened. OK, it could have happened anyway after the carer left, but it really is not acceptable for the carer not to turn up and there to be no Plan B.

Oh dear. Not great but a familiar story to me. She sounds safer in a carehome. Even if the evening carers had turned up she might have got out of bed during the night or she could fall during the day. If she is on insulin that needs monitoring. Have the care agency told you why they didnt arrive. I hope you are all ok today.