Emergency advice needed, relative's life depends on it

[fkthesystem]

I'm sorry to be posting here but I'm in such desperate need of advice that I need the traffic. I'm also sorry it's long.

My grandmother has had a government funded place in a care home for the last four years. She is kept there under a DOLs following having been sectioned for self-neglect as a result of a combination of severe mental health issues triggered by Alzheimer's (and now, four years later, the Alzheimer's has started to progress). She has never had an estate or assets to pay for care and we as a family don't possess the means either.

Her behaviour over the four years has admittedly been challenging at times (rudeness, biting, etc) but DGM is <5' and genuinely not a physically intimidating person, even if she can be difficult. However her behaviour as she's deteriorated both physically and mentally, so over the last 18 or so months, has improved and she is mostly co-operative with the care home staff nowadays with some encouragement.

As far as we have been made aware, her care needs up until the last couple of months were mostly showering and encouragement to keep sanitary. She has only very recently required assistance with changing her own pads (we don't know if she doesn't recognise or doesn't care when she sitting in mess). She was fully mobile and didn't require any special diets.

A few weeks ago we were alerted that she hadn't appeared herself and hadn't eaten, however we weren't told until end of play on the third day that this was occurring. We said we wanted her to see the GP the following day as a matter of urgency, and the GP prescribed antibiotics for a UTI. The home were calling my DM on a daily basis saying DGM was refusing to take her tablets or drink, as well as still refusing to eat. DM was going over daily and getting her to drink at least a cup of water and take her tablets without much difficulty, just a lot of prompting. The staff said they didn't have time to sit and prompt her to drink.

On the fourth day they called my DM and said DGM suddenly couldn't swallow fluids and that they'd called 999 because they were concerned she might choke. My DM took emergency leave and raced over there, to find no issues with her swallowing, no signs of a stroke, etc. DM had told the home she was prepared to take DGM to A&E herself due to the ambulance wait times, and so before DM even got there, the home had cancelled the ambulance. DM called me while she was there as my partner is a paramedic, and the staff outrightly refused to speak to him saying they didn't care what he had to say and wanted her to go to A&E. There was also a doctor from the surgery at the home when the swallowing difficulty occurred and the home reported that the GP refused to see DGM because "she'd be assessed at hospital". DM ended up taking her.

On assessment at A&E, they found urine burns so severe that they immediately safeguarded the home and made an in patient referral to one of the dermatology teams. They said they'd never seen damage like it. She has since been kept in hospital on IV antibiotics for the UTI. They have also had SALT in who have advised DGM appears to be having difficulty swallowing food which is why she hasn't always been eating and now requires a softer diet.

A few days ago they declared her fit for discharge, however the home said they wanted to make an assessment first. DM asked what they meant and they said they needed to see whether she required a hospital bed and whatnot first, fine. However last night they called DM to say they refuse to have her back on the basis she now needs nursing care, and that was that.

Having to stay in hospital for a prolonged period of time whilst another care facility is found, and then the upheaval of moving to a new home/unfamiliar environment is legitimately going to kill DGM. I know what you're probably thinking, "why would you want her to go back to somewhere that let her get to that state?" and whilst I do completely agree that their care was, at least on this occasion, awful, I am also aware of how difficult a change in routine is for DGM's mental state. The hospital were going to discharge her with District Nurse support as well as regular SALT input/review and OT.

We are in shock that the home can refuse to have someone back when no alternative plan is in place, and thus she can be left in hospital unnecessarily. We believe the safeguarding made against them and the complaint my DM has made about the whole situation has basically made them not want her back now.

We genuinely don't even know where to start with getting help now. We don't know who to call to find her somewhere else because she is public funded, we don't know if there's anyone we can call who is able to force them to take her back temporarily with additional external support in place, we don't know if we should be phoning someone like the CQC or a solicitor or something as the impression we've been given my the hospital is her UTI likely stemmed from the same circumstances that lead to huge skin damage from urine burns.

Please help with any experience/signposting.

then it was up to the care home to say that and not let the DGMs condition deteriorate. Short staffed as they are, that cannot be too much to ask? It is literally their job

I think I understand why people think the title is misleading, which I suppose if you don't know my DGM it might seem. Like I've said in the other messages, the bit that will kill her is the moving elsewhere, and so the emergency advice was whether there was a way of keeping her where she is. But it's been helpful to know that's not going to be possible and why, and what to do going forward or at least some avenues to explore.

It is not uncommon for the needs of an elderly person with dementia to increase to a level that a residential care home cannot cope with. If she needs nursing care rather than residential care then she needs to be placed in a home registered for nursing care. From your OP it is not clear whether the home she was in is registered for nursing care. As DGM is medically fit for discharge the hospital discharge team should get involved to find a suitable nursing home for her, a social worker should be involved to facilitate this.
I hope a suitable placement is found quickly.

Don't be distracted by the fact that when she recovers from this current illness she may be up and dressed and mobile . Thus doesn't mean she doesn't have significant nursing needs. The swallowing could be due to her Alzheimer's, the body forgets how to do things. As others have said focus on getting her settled somewhere else that can meet her needs, I'm sure she'll settle there (and I wouldn't send her back to the current place , once she's sorted I'd raise complaint for sure)

It would be a good idea to get this thread moved to the Elderly Parents board - plenty of people there with experience of this kind of thing!

That's not what they said though, they said "I don't want to speak to them because I'm not happy she remains here because then it's my responsibility". I was on the phone, I heard her say that in the background. It also wasn't a GP appointment, there was a GP on site anyway. If there was a situation that an ambulance was deemed necessary because they thought she would choke, it would make sense to have a qualified doctor at least make sure the situation wasn't imminently life threatening if they'd been told could be a several hour wait.

Again I'm clarifying these things because they are relevant to distinguishing between whether we've been unreasonable relatives or there have been failures that need to be reported to someone later down the line. But like everyone has said, this is a job for later now and finding somewhere appropriate is the task at hand.

It all sounds very worrying. I totally understand that you don’t want to see her life disrupted by a move that she will find confusing and distressing.

On the other hand, it’s worth considering the likely consequences of sending her back to a place that would provide what you’re calling ‘sub-par care’. If she’s having difficulties swallowing and the staff at the care home can’t help with that, that’s extremely serious. I imagine starvation would also be traumatic.

I hope the hospital social workers can find a place for her that will keep her as comfortable as possible under the circumstances. It’s an incredibly stressful situation. Much sympathy to you.

This is pretty much why I mentioned any of the home's actions and my concerns, because as biased as I am in this situation, it does seem to be unreasonable (even neglectful?) that she has gone from having no concerns raised to us as a family to "she needs nursing care" in a matter of a few weeks (when it's not to do with anything that's occurred as a result of the stay in hospital). At least if they had've reported problems to us and that they were struggling with her, we could have started to explore options earlier rather than leaving her stranded in hospital.

OP, others have given good advice.

And I think you've come to appreciate that a return to her previous care home isn't feasible.

I know that it's still what you want, but can you honestly say that in a few years time you wouldn't be angry that your GM was sent to spend her last days in a home which was demonstrably unable to meet her needs?

I wish you and your family well.

The next few weeks will be tricky and frustrating. From experience, you'll think you've found a solution only to be thwarted by some red tape or a delay.

Keep your GM's best interests central at all times. Be loving family and advocates. By being a consistent and regular presence, you'll help her transition to her next home to be more familiar and comfortable.

Unfortunately this happens fairly often. Homes declare they can no longer meet the patients needs. Was it a nursing home or care home? There may be an interim dementia/rehab unit she could be transferred to if her medical needs no longer need a hospital bed. This can be costly for as might be within a private setting bit at least she would be safe. The hospital discharge social worker should be actively seeking a p,ace for her. Have you reported the home to the cqc as her admission sounds largely due to their negligence and it is probably not in her best interests to return there.

If its not a nursing home this is actually completely within their rights to do. The local authority residential social care support team will now need to find her a space in a nursing facility, though like you say this could take time due to major shortages in spaces. Therefore, she will be kept in hospital until a space is available. Unfortunately, this is happening to so many people all over the UK. If she is in hospital, it is not going to kill her. She will be well cared for there.

Your grandmother will already of had input from a social worker previously to of had the referral to the councils residential team. They will of needed to carry out check on her income, assets etc to ensure she didnt have income/assests over the threshold to ensure she could be state funded. You can Google your local duty social workers phone number and call them to discuss or call your local council offices and be asked to be put through to the social care residential team.

Honestly, the best advice I can give you, once you have the social worker who will be dealing with hers number. Keep on top of them calling regularly, so she isn't forgotten. Having worked in this area, social workers are completely overwhelmed with their case loads, those who just sit back and don't chase regularly for updates/movement on the case will be left on the pile. The ones who are pests, will be dealt with first so their time isn't taken up longer than necessary dealing with regular calls etc.

TO EVERYONE

Thank you for all of the quick replies with advice on who to contact to get the ball rolling. It's not the outcome I was hoping for for reasons mentioned in my replies but I accept it is what's necessary and, in a physical sense, in her best interest. It's also been helpful to try to understand the whys about her need to move as this hasn't been communicated to us, it was a very brief phone call to my DM last night to say she wasn't suitable for their care anymore and so wouldn't be returning. No discussion about why, no where to go from here, they didn't even say anything about arranging to pick up her belongings. This post was therefore created in a state of frustration and panic because of the impact it will inevitably have on my DGM's (mental) wellbeing and that obviously feels very unjust to me when it sounds as though with better care in the first place, this could have been a significantly smoother, less traumatic scenario, even if the practical outcome wouldn't have been any different in the end.

The care home also won't of legally been allowed to speak to your partner if he is not next of kin or has power of attorney for her welfare. This is for data protection purposes of their residents which they are legally bound by.

Who is funding her care OP? If it’s the local authority then she should have had some social work input, especially if there’s a DOLs in place. If council are funding her then it’s likely brokerage will be looking for a new place for her, or be negotiating with the home to take her back.

Realistically, was the place she was in ever going to be able to meet her needs long term?

Do they specialise in care of people with Alzheimer's?

I don't know if it's local authority or council to be honest, I didn't realise there was a difference. She's definitely not had social work input while she's been there though, if that indicates it's more likely to be council.

The local authority and the council are the same thing.

OP, if your GM has reached the stage that she's started to have issues swallowing then unfortunately, the end is nearing. That will be why she is getting UTI's as well.

Obviously, she cannot go back to the carehome. Don't try to fight this otherwise her last weeks/months if her life will be miserable as they cannot provide the care that she needs and deserves.

Contact social services. They will be able to assist you with finding a suitable place for her.

There must have been an assessment at some point to decide the home could originally meet her needs and to sort out the DOLs. She should have also been reviewed annually but I know that often falls by the wayside. There would also have been local authority involvement after the safeguarding referral. Are you sure your mum is sharing all the info with you? Is she listed as your grandmother’s representative or is there someone else the local authority might have been liaising with?

This is really good advice

It was a state funded placement so social services were paying for a bed at the care home which turned out to be neglectful, severe urine burns is shocking, and obviously poor communication with family. The care home know they are in trouble so wont be making any efforts to take her back even if this was feasible. As others have said, having to move from residential is quite common, which is why dual registered homes who have both nursing and residential sections can be a good idea. Different homes cope better with dementia than others, it's not just the physical needs side, it's not always clear cut. I'm sorry for the disruption, but I would concentrate on getting social services involved and finding a good home.

To be fair, if they are also being left to sit in their own urine to the point they’re suffering urine burns, then they’re probably not getting the car they need either. But maybe there’s nowhere else for them to go so they’re stuck.

Your DGM does have somewhere else to go (the hospital for now) and so it seems silly the that the care home wouldn’t exercise a duty of care to make sure she ends up in a setting that can meet her needs.

She's in exactly the right place. The hospital will liaise with community social care services, formulate a discharge plan and she'll be placed in nursing care in the community. There might be a delay whilst a funded place is sought.

The current care home were right to refuse her return. Her needs sound to be more than they can deliver safely. The level of care a care home gives is quite different to the needs a nursing home can provide.

Your family must refuse to have her home under any circumstances. Even with wrap around care. Just refuse. I wouldn't even engage with this if it's proposed as an option.

Then it's a case of waiting until a nursing home placement can be found and keeping her as grounded and comfortable as you can where she currently is.

Her Alzheimers diagnosis hasn't been a straightforward one. She's always passed memory tests and has never been formally assessed as far as we've been made aware. We found out it had been put on her medical records at some point in the last four years by chance when I think she went to hospital once following banging her head and being on blood thinners and they mentioned it, then when we asked the home they said the GP had said she had it based on her behaviour. She has always been able turn her behaviour on and off depending on who she's around, and with no concerns raised by the home, we had no reason to assume she was getting close to needing alternative care.

I'm sorry the situation is so shit for you and your grandma. Lots of love to you x