A huge mess

[madnessitellyou]

I am almost at the end of the rope with my dm.

She’s 81 and almost certainly has dementia. We’d just started applying for LOA but has declined so rapidly she’s not really got the capacity now. She can’t plan at all and is in complete denial about her current state. Df died 6 years ago and her mental health is in tatters; she almost gave up. I tried to get her to a doctor - not least because she’s also forgotten she has a pretty serious life-limiting illness that’s been completely neglected - but she absolutely refused to entertain that.

She sleeps all day and is up all night. Her car is smashed to bits because she keeps driving into things and forgetting. She’s in hospital at the moment and when she gets home (if?) we’re removing her keys. She’s won’t eat unless it’s brought to her and won’t drink either unless, again, it’s brought to her. Last weekend she was so weak she was, according to the ambulance crew, at very serious risk of arresting if they didn’t stabilise her before moving her. I’d called the emergency social work team as I had a number from the failed attempt to get care (see below) and it was the social worker that called 999.

After her last - very recent - hospital admission a care assessment deemed her as needing care but she sent them away so they discharged her.

I don’t want to be her carer. At all. I have a life of my own, a career I love and dc who need a roof over their heads. She refused to help at all when the dc were young and has throughout my life been critical and cruel towards me. I feel sick at the thought of admitting this. I should have been there when the carers first came but getting time off work is unbelievably hard (almost impossible. Please no judgment here - this is case).

She has the means to pay but we absolutely do not and without LoA I’ve no idea what I’m doing.

Help.

.

I’m so sorry that happened to you Camino.

You say Social Services are holding a best interests meeting, which means they will make decisions about what happens to her next. You won't have to do anything but they may ask your opinion as next of kin.

From what you have said she would be deemed not to have capacity to understand the LPA. So to access her funds a deputyship would be needed. That takes months to sort out and using a deputyship is very onerous. I had LPA for my mother but I would not have anything to do with a deputyship, I'd leave that to Social Services to sort out. In the meantime you of course do not have to pay anything out of your own money.

If they try to discharge her back home, make it clear you do not support that decision and you will not be providing any care. When you see issues ring Social Services or an ambulance as necessary. But hopefully she will be discharged to a care home.

Hopefully you have the beginnings of a plan by now OP. I remember very well the feeling of flailing around not knowing how to navigate all of this and even where to start.

The best interests meeting is supposed to be between hospital, social workers, next of kin. In our case, it was cancelled because the SW had reviewed the hospital paperwork and decided DM could go home again. Didn’t even meet mum! Long story short, she is now in a great care home that I organised without any help. However, the handover notes that the hospital gave the care home bore no resemblance to mum at all, so in hindsight I wonder if the SW reviewed mum’s notes or someone else’s.

I’m afraid that you have to be a (polite) nuisance when it comes to dealing with medical staff and adult social care. Take names and numbers, call daily. And don’t be afraid to say “no” - and not give in to emotional blackmail to be there even temporarily. Don’t believe a word they say about the help you will get - @CaminoDays experience is sadly not unusual. They are under tremendous pressure to get people out of hospital and home again, and I’ve read some quite hair raising stories on here of the pressure that (some) staff can put on relatives to enable an unsafe discharge.

Is your mum home again already? Have you tried contacting her GP to see if she could get a home visit to assess her if she won’t go to the surgery? We did it and sold it to DM as the GP wanted “to follow up after her hospital stay”.

We’re no further along. If anything, we seem to have gone backwards. She wouldn’t eat or drink so ended up back on IV fluids, which appeared to put pay to their assertion 48 hours previously that she was “medically optimised”.

They are now saying that they can’t do anything re a memory clinic referral until she’s seen by the mental health team to determine capacity. Naturally they don’t know when that’ll be. After I told them that no, I didn’t think she could go home, this week’s tune is “discharge home with care package” . Even though she had a care assessment earlier this month that determined she does need help, because she sent them away, that needs to be done again. It was done in the same hospital, less than a month ago. I don’t get it. Mind you, no doctor has read her notes because I’ve had to mention the CT results of the CT that was done in. The. Same. Hospital one month ago numerous times.

Yesterday it was definitely going to an intermediate care place. Today it’s maybe, possibly, likely home with care.

Oh and on the memory clinic, after her second admission, the discharge notes said GP to refer to memory clinic. GP say it’s nothing to do with them, it’s the hospital, who say it’s the GP.

I felt very, very low last week. This week I’m really annoyed!

@madnessitellyou you are right to be annoyed, different bits of the national health service do not always talk to each other (GP and hospital - and indeed, as you are finding, different departments in the same hospital 🤦‍♀️ - we had different hospitals too, it was madness!). Then if they go home or to a care home, the council services, who are even further removed and also have different departments.

What is really broken is that both health and council are motivated to push the cost and responsibility for a person to the other service. A person who just needs to be helped.

Wishing you the strength and boundaries you need - especially for the ‘capacity’ arguments - well done for holding your lines this far.

Rather than taking the keys
Remove the connections to the battery and the engine will not turn.

Wont work will if she will think to pop the hood😬

Arrange to have the car towed to the mechanic while she is out and apply to have her licence pulled by the DVLA. The local police know so they dont end up looking for a "missing/stolen" car.
Plus that way she will "know" where the keys and car "are".

If she wont agree to a tow. Add a note in a clear plastic cover to the top of the battery asking that the cables are not reconnected as that parent not medically fit to drive.

Today I had the delight of trying to explain for the 1000th time what my concerns are. And finding out that she needs to see occupational health, but there isn’t one on the ward at the moment. They are still banging on about a care needs assessment - done three weeks ago on the ward she is on currently - and are simply not reading her notes. No signs of dementia apparently; they didn’t know she’d had a CT scan showing that’s a real possibility. I told the assembled nursing staff who all seemed to be at the desk at once that I have no idea where anything is up to because I’m told something different each day, sometimes in the same conversation.

The doctor yesterday said she’d be discharged home. Then said when the physio saw her she could only manage a couple of steps. When I pointed out she lives in a two-storey house with an upstairs bathroom and bedroom all he could say was “I hear what you are saying”.

I’ve emailed the ward manager with everything so it’s in writing, including the assertion that I’m not her carer. If she goes home I’m scared she’ll send the carers away again - I can’t be there 4 times a day to make sure that doesn’t happen. Because they have yet to assess her for capacity, it’s a case of shrugging their shoulders and saying there’s nothing they can really do to insist on care (I had a literal shoulder shrug).

I don’t expect my mother to be prioritised, but I do expect people to actually communicate with one another.

If they aim to send her home ask that the care plan include a obligation on homecare staff to formally notify their manager that care is refused and a what happen next is agreed

Such that a formal "safety net" plan is put in place so someone has to decide if she is at in danger from neglect.

🌻

Say unsafe discharge, and you can’t care for her

If her memory is not good it may be good idea to move the car to your house until she forgets it.
Ensure her care package is in place before she leaves the hospital otherwise takes ages going through GP even if you have private care there are certain things an occupational therapist is required for.
we still have both parents age 90 and have put this all in place over the last year all working very well the routine regularly meals and regular medication has worked so well for them both.

Still nothing to report. They keep saying the social worker “will call” but so far nothing has been forthcoming. Meanwhile, my “medically optimised for discharge” mother is barely eating, barely drinking, and had a fall on her ward in the early hours of this morning.

Hang in there.

Tbh dont expect that the hospital will push for the discharge as she still clearly needs the bed.

The SW is likely pushing her down the list to deal with more urgent cases which will be based on the bed management team requests.

I know we all hail the NHS, but personal experience, and every thread on here about elderly parent / patient care is honestly just a shit show. I 100% accept social care is more than broken, but why is it time and time again hospital staff fail to read basic patient notes and just fail to fecking communicate with each other. I'm so sorry OP, the stress of all this really takes it toll and yet the hamster wheel keeps turning.

I think they are pushing for discharge (although maybe not as of right now) and simply don’t understand what I’m trying to tell them. It’s astonishing.

@madnessitellyou couldn’t leave that last post without asking if you have had a multi disciplinary team meeting with the hospital. Can you use this phrase and also ask is there a rehab type place locally she could go?

Please please do not go along with the discharge. Make it their responsibility to organise sensible next steps or she will just end up back in hospital. 💐 try and be firm but incredibly polite.

I’m hoping that the social worker has called you and is also fairly on the ball.

Don’t be afraid to say ‘I was told the opposite 20 minutes ago by X’.

The hospital will have to restart the process again once she is deemed fit to be discharged to somewhere else.

Bluntly her falls during the night are a "good" thing. I would check what had been documented and a reason found. Was she able to raise the alarm or found by staff etc and if physio have been back to see her

Try ask "without asking" is you need to if the staff are recording her intake of food and water. As in how do they know how much is she eating and if she is filling in the menu etc and if she has had a nutrionist referral.

Your aim is the nursing staff provide documentation that she is not a safe discharge to home.

When I was in a similar position, I found it never hurt to turn up holding a notebook and pen, wearing professional clothes (and a professional smile :/ ) and have a back pocket full of phrases like,
"Just talk me through the plan for..."
"I just want to be sure I understand how..."
"Can we doublecheck that XYZ has been considered and accounted for..."

Of course that was just the starting point. Grim patience and persistence and more time off work than I wanted to take was also involved.

They REALLY need to bring health under the same roof as social care. I'm not necessarily saying the funding arrangements should change - the E&W "pay yourself if you have the money" does mean that at least SOME people get the care they need - but the arrangements should all come from the same budget - the bed blocking fines just aren't working well enough.

No idea of the physio has been but it’s my understanding (from what I could work out when they called me at 6am) she was found. They’ve done x-rays today because she seems to “be in pain”. I use “” because she’s presenting as being in constant agony because the effort of moving all due to her frailty and how weak she is due to lack of food and drink is too much for her.

She’s also really deaf - refuses hearing aids - and I think she’s being offered food she doesn’t like but because she can’t hear, is just saying yes to everything. I’ve told them so many times. They have a board behind each bed and tomorrow I’m taking a whiteboard pen and am going to write this on.

She’s been driving?! Good grief. I’ve been through this with my aunt, we did do as much as could but in the end they need 24/7 care, it’s really impossible and puts them and you at risk. Be very clear and firm with SS that you can’t provide care.
It sounds like she needs full time care. I’m sorry she wasn’t there for you, op but even if she had been it’s an incredibly hard thing to do. Don’t feel guilty.

I had a relative discharged in safely who had repeated falls. Like many times a day. Sent home with a care package. I said I was unable to help in any way as only relative local. So the social worker said we will install a fall alarm they will wear which will mean an alarm will trigger each time they fall

so I said well who will the call go to? The answer was you! I said so every time they fall multiple times a day I have to go round and check on them even though I don’t live near and will be at work?? Yes was the answer…. So I said to the social worker how about it goes to your mobile phone instead??

I would contact PALS.

I’ve been unequivocal in saying I will not be providing care. One doctor said his understanding that care would be difficult for me to provide. I told him it wasn’t so much difficult but an absolute certainty that it wasn’t happening. I’ve told every single person this. The other thing I’ve learned is that no one reads notes.

If you can get the nurses on side and go through what is in her notes and be clear that you think its in her best interest to be in a home you will be in a better position. This also makes it clear that you are not trying to blame them for anything.

They are working within the system and will have a much better understanding of how to ensure her file shows her actual needs.

Hearing is a "simple" fix in asking the staff to get her to confirm using more than "yes" as this should be happening as she is suspected of lacking capacity.
But you should ask them how they manage hearing issues.

Again there can be a disconnect between food and nursing as the care staff may not be notifying the lack of food intake.
Again its asking how this is being tracked

Etc.