Is it me or are social services being unreasonable?

[Rogersgal7]

Hi I have been lurking around and not posted until now, just wondered if anyone else has had a similar experience and what they have done.

My nan is in hospital as a result of a fall (this is the 2nd time she has been hospitalised for this in the last 18 months). First time she was discharged home with a package of care from S.S where a carer visited twice a day. She was able to live quite independently then.

This time however she has deteriorated and the GP has advised she has dementia. She has been acting quite strange when we visit her in hospital , hiding her food and saying that she will make us a cup of tea. She also gets confused about where she will sleep that night and worries that there are people trying to get in her bed at night.

I understand that a lot of how she presents is typical of dementia however social services now want her to be discharged home (she lives alone) with someone who will visit her twice a day. My problem with this is that she is not safe on her own she has full support in hospital and at times she even forgets to use her walking frame and is a high falls risk. It also concerns me that last time she was sent home there were times when her carers didn't turn up so she would be left alone.

I visit her 3 times a week and working full time (as does my mum) we cannot be there as often as we would like. It also doesn't help that she is telling all of the hospital staff and social services that she wants to go home , she doesn't understand the implications of what this means and without sounding mean she probably doesn't know what her home looks like.

I just want what is best for her and feel that S.S do not understand the full extent of how dangerous her living alone could be. I would love nothing more than her being in her own home with 24 hour care but this wouldn't happen.

If you have managed to stay with me through this post , thank you and does anyone have any advice as to how I can support my nan or where to go next as I feel I have hit a wall with S.S. I understand that S.S are doing their job in trying to support people at home as long as they can however I believe if she went home they would have a safeguarding issue on their hands as I am sure she would forget to lock her doors or forget to eat/drink . With some of her behaviours I am worried what she would do when alone at home. She is also in a large 3 bed council house and has little income so wouldn't be able to fund all of her care herself if she went into a care home. I feel so stuck and let down by the system.

These responses are so helpful thank you I definitely feel better informed now, keeplooking - they did test for a uti and it was negative.

I would also ask Social Services and OT's about assistive technology. There's a huge range of gadgets out there to help people keep safe.

This is a link regarding AT for people with dementia; though that is not a diagnosis she has at present it may still be useful in her situation.

www.alzheimers.org.uk/info/20030/staying_independent/30/assistive_technology/4

YABU OP, no advice just an identical experience.

I'm sure all the faffing and debating and home-caring and shuttling to and from hospital must actually be more expensive than keeping geriatric wards. You wouldn't discharge a toddler from hospital on a home-care package. So much for cradle to grave.

Sorry your in this position OP

I don't know the technical ins and outs my granny has dementia but it was left too long and now it's not possible for my mam to get power of attorney because of it.

We were offered a full care package even though she isn't really at risk of falling and wandering (won't leave the house) but as she is still classed as been able to make decisions herself she is refusing to have any home care put it.

Is it possible to ask for a second opinion from adult services?

I think you need to insist on full blood and urine tests to see if she has ANY infection. My Granny never had a day's confusion in her life until she was admitted to hospital aged 99. She started to have the most bizarre hallucinations of things happening outside the window, as well as hiding her medication and saving it to "kill herself". The Ward Sister kept trying to brush it off as old age or dementia and I had to be extremely insistent that this was NOT normal for Granny. Eventually they tested her blood and urine for a third time and it turned out she had a chest infection. She did get home for a couple of months and when at home, she had zero confusion or hallucinations.

So until you get a definitive diagnosis of dementia, do keep pushing for tests for an underlying infection. ❤️

Very sorry to hear about this situation with your nan - went through a similar issues with my mother with multiple falls over a 3 month period, confusion and deteriorating mental health. The standard thing seems to be to offer home care until it is clear that she cannot cope. We had 5 visits per day (3 carer and 2 family) but in the end it was not enough and she couldn't be left - in her confusion she started ringing family and the emergency services repeatedly because she was confused.

In the end it was clear that she could not cope but to get her into a home and safe we had to self-fund as ss dragged its feet and there was no decent home that accepted the low level that ss pay - the average cost of the ones we considered was around £1,000 per week.

One last thought is whether your nan is on strong painkillers after her fall? Mum reacted very badly and became very confused on them

I was in your position a couple of years ago and was advised to use the phrase 'unsafe discharge' to the staff repeatedly, which did help.

Also, we were - in the end - offered a temporary place in a nursing home for a month. These things do exist and you just have to keep pushing at the hospital social workers every single day.

Well YANBU but it took two falls a week for DH's grandad before he went into a care home. He also had dementia and was frequently quite aggressive to his wife because of it.

I feel for you, it's awful

Please, please, PLEASE get her checked for a urinary tract infection. We went through utter hell in a similar situation for approximately a year with an elderly relative. We were told he had dementia, which had come on fairly quickly, and he was unable to be left alone at all as he'd fall, try to wander (with or without his trousers) and generally needed constant supervision.

After a year, he had a hefty dose of antibiotics for something unrelated. He started to get better. As I'm sure you're aware, dementia doesn't get better. It was only at that point that we learned that a UTI can cause pain in the young and severe confusion in the elderly. The whole debacle had a major impact on the family that still continues after his death (unrelated; heart attack) even now we are a decade further on from his first diagnosis.

If this really is dementia, then as she has a spare bedroom, perhaps this would be of interest? homeshareuk.org/

If you're saying she wants to go home, how do you purpose social care not allow her to
She has legal capacity at this stage I assume. It may be dangerous but if that's what she wants to that's what she wants to do, and if social care didn't work with that it would be illegal.

You say you feel let down by the system, but the system isn't there to provide the care you want your nan to have. It's there to provide the care she wants to have. Which it appears to be trying to do.

Hi I can realise sympathise with this post as I have experience of it and come across situations like this every day. Your nan from what I understand has expressed a desire to return home and I guess ss are trying to respect her wishes and in a lot of cases this is right and the best option however if you have serious concerns that she does not understand the risks of this due to her dementia then one of the options you have is talking to her medical team and ask for a mental capacity assessment with respect to the decision to return home. This is a formal assessment that can be done that looks at whether she can understand the risks and then retain the information and then go on to express her wish etc. People are allowed to make 'unwise' decisions like return home even though it's unsafe if they are deemed to have capacity. However if the assessment shows she did not have capacity on this matter then u could have what's called a 'best interest meeting' with the healthcare professionals looking after her and come to a decision on her behalf. This is always a tricky one. Sometimes on ward rounds patients can appear to have capacity and express their wishes etc however when u actually perform an assessment their actual understanding of the risks in the decision they are making is very limited. I hope you are ok all of this can be very stressful. I hope u come to the right decision

Have a look at the Age UK website - it has loads of advice. Could you make sure your gran is getting any benefits she's entitled to, and ring her GP to ask them to assess her for memory issues. If there are, she should be assessed by a memory unit by specialist staff.

This us a difficult time - when the person doesn't want care but they have no accurate diagnosis of dementia so you have to do what they want - which isn't always the best thing for them.

I'd get a power of attorney in place too. Ask the hospital for the OT team to assess your mum's house to see if it's suitable for her to go home to.

I'm really sorry that your family is in this situation.

It's really easy to blame the person who has the unenviable task of telling you that resources are too limited to give your granny the care she needs but I promise you that no one goes into social work to do that. The blame for your situation belongs a little higher up.

I hope you manage to get something acceptable sorted out.

So sorry you are going through this.

Get everything in writing. Seriously. I had a horrific experience a fortnight before my father died after a long illness when we got an unexpected bill for £9,000 and social services basically tried to re-write history. Fortunately I had a good memory of the conversations despite everything, I had witnesses and they had messed up in other areas as well. My MP got involved and was amazing but it was the last thing I wanted to deal with at the time.

It wasn't entirely social services fault. They had moved offices around the time my father was moved to a care home and were spread over multiple locations. However they also hated me because I refused to put father in a care home of their choosing and put him in a different one that wasn't on it's last warning. You would not believe the pressure I had from them.

Your nana may not have to go into a home if they have proper support. However if they do, check here

www.cqc.org.uk/

and it will give you the background of the home.

You need to get a definite diagnosis of dementia. We had this with my Dad. Ask for her to be assessed. My dad was assessed by a specialist psychiatrist for elderly people. We were there while they did the assessment and it was clear he had dementia. He had the same symptoms as your nan. Confused about where he would sleep, saying he hadn't had meals etc. Care home will be funded by the state if needed but you have to fight for it. My dad was in hospital for ages while they decided whether he could have funding and in that time got a hospital acquired infection twice.

My mother has dementia and went into a care home for supposedly 9 weeks while she was having cancer treatment
We point blank refused to have her at home even though my dad was at home he had his own illnesses and mobility problems to deal with
And could not manage my mum and himself
As it was she was only there 3 weeks before we removed her ourselves as we felt we could manage her with help which we got and also we managed to get a stair lift put in

@Spaniel eyes
what type of ward is your mum on if it's a high dependency ward with a nurse to observe them 24hours that's a great thing to point out at the MDT meeting .

My mum also kept saying she wanted to go home but she was on a high dependency ward so they kind of shot themselves in the foot saying that she could go home and my dad look after her but in hospital it was deemed that she needed 24 /care / observation something that one person on there own couldn't physically do as they had 2 nurses /HCA every twelve hours

This was what I argued with them and they didn't have a leg to stand on

You really have to know your rights and stand firm and do not be bullied
My parents didn't have to pay for anything either despite owning there own house and my dad having a very decent pension and both get high rate AA because my mums pension was a state pension that's what it was assessed on

And yy to urine infections / chest infections . Even a simple earache
can often present as delirium in the elderly which is very similar to dementia symptom wise

Also my mums calcium levels were very high due to the cancer they literally gave her 2 months to live - 8 months on she is fighting fit - thanks to the wonderful NHS and her dementia isn't as bad as it was when she was in the end stages of cancer because the cancer meant her calcium levels were very high which presented as symptoms of delirium .

He had the same symptoms as your nan. Confused about where he would sleep, saying he hadn't had meals etc.

I know this isn't always going to be the case, but just to say these (and much worse) are among the symptoms my Mum displays whenever she succumbs to an infection (usually UTI, chest or cellulitis in her leg). A course of antibiotics usually signals a marked improvement (until the next time ).

OP I see others have mentioned this but are you sure she has been properly diagnosed? It is not uncommon in elderly people that an electrolyte imbalance or an infection can produce symptoms that mimic dementia.

I would push to have her reassessed from scratch.

I had the opposite experience. The difference is, we are self-funding. In such instances, they will push your relative into a care home so you can subsidise it. I take it, you are not self-funding and therefore if it costs them, so it's a different story.

Personally I would opt for having your Mum in bed all day in front of a nice flatscreen TV, books, snacks and 2 visits a day to get her up/washed and walking a bit so as not to lose it. Then back in bed. But that's based on my experience of care homes. On the other hand, to be fair, if they fall in a care home, someone will find them after an hour or so.

Don't know if you can set up a camera thing so you can keep an eye on the situ but tbh that is also very stressful.

An 87 year old neighbour was frail, frequently fell, almost completely immobile and increasingly confused. In the last 6 months of her life she was admitted and discharged from hospital following falls 9 times. Each time she was discharged with carers visiting several times a day. She became so confused that she was ringing another neighbour in the middle of the night convinced that it was daytime and the carer hadn't arrived.
After her last fall she developed pneumonia in hospital and died soon afterwards.
I was astonished at how long SS kept the obviously failing plan in place!

Oh, btw, social services absolutely not to be trusted in my experience. The moral scruples of loan sharks. Record all conversations.

I would be looking into getting her into a home where she will be cared for 24/7. Its kind of unreasonable that you seem to be expecting her to just stay in hospital (which is how the OP reads) when the staff want to discharge her and she wants to go home herself. Hospitals are not care homes and bed blocking is a massive problem at the moment.

I am sorry if this sounds harsh. We went through this with my gran and I was thinking the same way you are. But ultimately it is not the job of a hospital to care for elderly people because their families can't. Depending on savings she may get a residential place,ent for 'nothing'. My gran had to pay 3 grand per month.