Where do you go for help with caring?

[newyear2022]

Relative I’m carer for appears to suddenly need 24/7 help - with absolutely everything .

No other nearby family, friends, or neighbours . Social work are involved apparently but not provided me any contact details for Christmas .

I’m absolutely exhausted . Relative can’t do anything beyond get self dressed and use the toilet and wash and even then they need assistance . Wandering the house or staring into space 24/7 . Can’t be left alone for more than 5-10 minutes .

I’m totally out my depth and can’t walk out as I’m scared social will insist they go in a home . I can’t even go for a shower as I’m concerned relative will walk off .

111 have a 2 hour + wait and even then they’ll say it’s a chronic issue that they can’t help with .

I’ve got a GP appointment booked for the 11th . What do I mean time?

Please don't drop out of uni and become your DM's carer @newyear2022. She's only 56, so she could live for another 30 years! Is that the life you want? Of course it isn't. And please stop guilting yourself about the idea of 'putting your mum in a home', because I'm pretty sure she wouldn't want you sacrificing your entire life to look after her either. The bottom line is that she needs appropriate care in an appropriate setting and you need to be allowed to live your life.

If it does come to paring her belongings down, once she has what she needs in future, focus on keeping stuff like personal identity documents, paperwork relating to family and bank accounts, and photos and other important family keepsakes and nice household items you can see yourself being able to use in your own home, like lamps or a desk or things that remind you of your parents/grandparents, etc. You simply can't keep the entire contents of another person's home, accumulated over a lifetime by someone who sounds like a bit of a hoarder.

Please dont rush to their defence... not the point of my comment... but do not allow the 'family' to put pressure on you to do anything... if extended family are so concerned they would be physically standing beside you right now.... listen to their opinions but unless they are actually going to do something helpful.. .... and please please do not give up uni... that will mot help your Mum longterm and will affect the rest of your life.... not what your loving Mum would want....

Please let your uni student services know what is going on and please ask the SW to consider carer's needs for you so that respite can be arranged for you.

Don't worry about what is junk and what isn't at this stage. Put everything in boxes.

Does your mum have a pension? Savings?

Don't put your life on hold for your mum, she would not want that. It sounds as if she has had a succession of mini strokes or seizures which has affected her balance and has affected her mental capacity.

It's hard to work out even with an MRI scan but how she is presenting now indicates that what your mum wishes and desires for might not be compatible to safeguard her.

There are residential placements for under 60's and you need to get a life and have a fabulous future knowing you did everything you could.

I think you are a truly remarkable, compassionate and kind person and you must not let caring for someone to ruin your own physical and mental health.

Your mum needs a team of carer's to support her.

You have done your best for her and you should be very proud of yourself for this

You are such a thoughtful caring daughter. Before my mum died I had a very honest conversation with her ( she had a terminal illness) and she told me that no matter what she said in the future she didn't want me to stop my life in order to care for her. If the best solution was to 'put her in the old manor' ( our local psychiatric hospital) then that's what I should do. She never wanted me to give up my life for her because she had worked hard to give me that life. She knew that at some point she might not think straight and she wanted me to know what her wishes were. We never needed to make that decision as she died in a hospice but I think of that conversation often and know that it was her way of telling me how much she lived me.

If your mum wasn't as ill as she is, she would say the same, as would the aunts. Your mum isn't your sole responsibility which is why you are having the huge meeting to try to deter what is best for her. It would be good to take a support person with you ( a friend) and your extended family too. Make a list of what non negotiable for you eg going back to uni, mum living in a house not a unit etc etc. and stick to it.

Good luck, let us know and I am thinking of you and how tough this is

Have any of your relatives got some spare space for storage of boxes? A garage or spare room. this is something that they can do to help you.

Mum’s GP phoned me and spoke to me for a good half hour/forty minutes explaining about everything, how guardianship and capacity works and what she thinks is happening with mum/why she’s not well . She’s going to ring me again once the meetings over I think …

Which was extraordinarily kind of her, she’s off sick with covid so phoned from her own home and everything . Think she got the message as I was in floods of tears when I realised it was her on the phone .She said she will be there at the meeting albeit virtually, and said if I get upset or start to panic I can just switch my camera off/get a glass of water .

No family that can sit with me unfortunately so will be alone .

GP did say to hold off on packing, that they are arguing for mum to remain in her own home - in agreement that Mum wouldn’t last 18 months in a care home - and not to lose capacity as they’re concerned what that might mean for the future … she said once that’s gone there’s no getting it back - and said to hang onto uni with an iron grip just now .

I’ve shifted all her sentimental stuff into a trunk in my room - letters/cards etc . Will just keep it all together with my stuff now . Half my dads is already in there too so makes sense .

Thanks so so so much for the lovely lovely posts on here too I was in tears reading them last night, it helps hugely to know I’m not alone as such . xxx

Dithering over getting GP a box of chocolates or something, the surgery get a hell of a kicking on Facebook and that was incredibly kind of her to ring tonight . Sat and cried on the phone, other than helplines and my aunts twice no one else has sat and spoken and listened to my worries in the last three months (in real life I mean) .

I'm sure a lovely note and biscuits would be appreciated. That is so lovely that In All of this you are thinking of others.

I'm so pleased to read your last posts! What a lovely GP. She's right, hold onto university. And a note would do, they get tons of gifts this time of year ( the ones that complain are just more vocal) and I know a note that was genuinely meant would mean more AND I doubt you have lots of spare cash. ( my SIL is a GP and often used to give us chocolates etc she had been given as there were so many even though they all shared them out )

So meeting is tomorrow morning … lovely lovely GP rang again last night and think said she’ll phone me tomorrow afternoon too .

She said it is extremely likely mum will be going into temporary funded residential care/respite in the next fortnight and they’ll arrange for sister to visit with support . GP said time was she would have gone into psychiatric hospital but said that’s no longer an option . Thank goodness as Mum’s had enough bad experiences with that . That buys time to organise care at home which is apparently the desired eventual outcome .

They’re calling it pseudo dementia which I’d never heard of and explaining to sister in terms of ‘mum’s brain needs a break from the world for a bit’ . Think sister will understand that, they’re very similar people in lots of ways .

Mum getting guardianship (or at least, will be going to court to arrange), myself and her brothers will be guardians hopefully - they said no reason why not .

My cousin is hopefully going to sit with me which will help a bit - advocate that came round today said there will be me, uncle, cousin, GP, x 3 consultants, a solicitor, two social workers, a social work student, advocate, possibly a funding manager, admin and chair - said it will be daunting but less so than if we were all round a table .

I don’t think I’ve ever been more petrified in my life . I’d rather the dentist or to sit higher maths again. I keep thinking if I’m honest I’m letting my mum down and I’ve told them I can’t do the caring myself full time which the guilt … I thought after the seeing the advocate this morning that I was going to vomit . Thank God my cousin is coming round tomorrow .

Will definitely get the GP a wee card too yes, thanks

Glad there is a plan OP. Please don't feel guilty about not caring full time. I'm a “professional” and part of my job is to assess people who need support. Caring for someone who needs a small amount if support is difficult enough. What you are doing is unsustainable, and with all the love in the world there is no way one person can do that. Even 2 people would struggle. You are caring for your mum by making sure she is going to be supported. There are many families who either cannot or do not provide the level of support you have. You have done brilliantly

I’ve just read this thread and want to say good luck for tomorrow and what an bloody amazing strong woman you are with everything you’ve been through and have been doing. I’m sure it will go ok even if bloody daunting and do hope your mum improves with time and proper care and support so you can pick up at uni

Meeting went on for 2.5 hours … a great deal of going round in circles . All agreed Mum best cared for at home and would likely decline to point of no return in a nursing home - consultants said theh think she could get better with support - but don’t fully understand all the legal stuff that goes alongside, was very confusing - glad my uncle was there as he seemed to understand it better than me. 15-20 people there only three of whom I’d met before apart from family (GP, team lead for social and one of the consultants) .

So it’s just finding people who can provide that care at home now . Not sure how that works in reality .

GP and team lead lady were absolutely lovely as was mental health social worker, they said the only person who’s never let my mum down is me, and that they can’t believe I’ve managed for so long alone .

Absolutely shattered today and feel worse than I did after my grandma’s funeral . Crying in front of 15 strangers isn’t much fun .

Thank you for all the lovely lovely messages on here it has helped so very much, seriously

Well done. Sounds like you did brilliantly, forget the crying in front of people it won’t be the first time it’s happened by any means. I have ended up crying a few times in public and survived and in the job I do (dentist)I get people crying at least a couple of times a month to me due to being overwhelmed and it really does not matter, I just empathise as I have been there as have most people with bloody normal feelings and experiences.
I’m not surprised you’re shattered after such a long time with all the stress riding on it either, can you get an early night or celebrate getting it done with some sort of small treat? On to the next steps, I can’t be any help as I experience in this field but keep your chin up you’ll get there

@Brody77

Well done. Sounds like you did brilliantly, forget the crying in front of people it won’t be the first time it’s happened by any means. I have ended up crying a few times in public and survived and in the job I do (dentist)I get people crying at least a couple of times a month to me due to being overwhelmed and it really does not matter, I just empathise as I have been there as have most people with bloody normal feelings and experiences. I’m not surprised you’re shattered after such a long time with all the stress riding on it either, can you get an early night or celebrate getting it done with some sort of small treat? On to the next steps, I can’t be any help as I experience in this field but keep your chin up you’ll get there

Thank you absolutely re next steps, I think my cousin and uncles are handling a lot of it as I’ll be going back to uni on Sat morning . Have GP phoning tomorrow I think, then meeting on Tuesday again and then GP again on Friday … (surgery are getting an afternoon tea hamper from M&S from me - am enormously grateful to them as they’ve given up hours of consulting time largely to help me - they only have two doctors !!)

Oh I am terrible at the dentist - you must be very used to pts crying! I was the same when working for NHS and vividly remember actually crying with a patient once as their situation was so overwhelmingly awful and it felt appropriate at the time .

Thankfully everyone at the meeting was absolutely lovely - when I did end up in tears GP sent me a text (on surgery’s mobile) telling me I was doing really well, which helped a lot .

RE treat, am waiting til I get back to uni … think once I’m there will just collapse into bed and live off deliveroo or dominos for a few days !!

Definitely sounds like dementia. I had a similar thing with mum where the health professionals told me it was mental illness and definitely not dementia even though it was blatantly obvious it was. The worst part was her being carted off to a mental institution and put in a 'cell' she was there for a few weeks before the pyschiatrist confirmed she had mixed dementia. Unbelievable.

GP should help sort out referrals

Contact your gp surgery and ask to speak to their carers' lead. Every surgery should have one.

@lollipoprainbow

Definitely sounds like dementia. I had a similar thing with mum where the health professionals told me it was mental illness and definitely not dementia even though it was blatantly obvious it was. The worst part was her being carted off to a mental institution and put in a 'cell' she was there for a few weeks before the pyschiatrist confirmed she had mixed dementia. Unbelievable.

they’re saying they’re going to do an MRI and EEG and stuff to be absolutely certain . Mum won’t do any of the cognitive testing so they don’t know but said given her history they’re pretty convinced it’s mental illness, not physical - she’s got a psychologist, two psychiatrists and a neurologist now apparently . I’m still not 100% sure but I suppose it’s just knowing whether things are going to get better or worse, or stay the same.

They said something like she has had so much trauma in her life that brain just doesn’t want to deal anymore, I’ve never heard of that going a far as this but I dunno .

Been really really struggling today, Mum follows me round the house 24/7, from the minute I go to bed til the minute I wake up she’s stood next to me or behind me . Even if I go to the loo at times she’s asking where I am . It’s exhausting beyond belief . Yesterday she suddenly knew who I was and that she was my mum but that seems to have gone again today so I don’t know.

So yet another meeting today, this time GP and SW fell out with each other which was interesting to watch . SW again said best option is to move Mum into a mental health bedsit 30 miles away . Family said no . GP said SW promised 24 hour care . SW said no . So best option is apparently 34 hours a week partly funded by mum, but mum isn’t allowed to top up the hours with her benefits, they said if family want extra hours we’ve to pay for them ourselves . They won’t fund nights and said best option is a floor alarm so if Mum gets out of bed overnight a call centre is alerted and they send someone round to check on her .

There doesn’t seem to be any answer at all, it’s so bloody frustrating . GP said if mum goes in a home they’ll never get her recovered, she said she would give her a year at best .

Can’t settle mum st all tonight, she’s been in and out of bed for the last two hours and pacing the house . I’m not sure if the dark makes it worse . Dunno if you get sundowning with false dementia . You seem to get everything else so it wouldn’t shock me . Social worker is coming round tomorrow .

Have to go back to uni tomorrow. Promised GP who said she was scared I would still back out, and relative actually dropping me at the station so I cant back out . Have packed my mum's cases to stay at a relatives, packed them full of sweets and new colouring book (adult ones!) and pens, stuff, books she likes, clothes she likes, the right toiletries that she'll use .

and am heartbroken, every single instinct is telling me to stay here and keep mum safe.

I got my exam results at least and the exams I sat I passed . One with outstanding, the other excellent .

Have to go to a THIRD meeting too, this one be chaired by very senior managers they said . Probably more like bloody bouncers . Feel for GP who must be losing hours of consulting time to this, they only have three GPs as it is so one down for hours on end isn't great . Have made a formal complaint as well . Been given team lead's phone number, email address, and working hours as well as that of her manager . Told them I'm thirty and been caring since I was 5 and f'in knackered and no longer giving my mum the care she needs through burn out . We'll see .

Fingers crossed no-one involved uses Mumsnet . Though none of this would be a shock to anyone involved .

Hi OP. I work for social services. It is completely normal for social workers and GP’s to have very different views on what level of support is needed. TBH I’d probably try what SW is suggesting. I’m assuming staff must be fairly nearby or on-site if they will come around for a floor alarm?

Generally the idea is that if a person cannot make their own decision with regards to whether they need support, the “least restrictive” suitable option is chosen in their best interest. This is one of the principles of the Mental Capacity Act 2005- the SW isn’t just being awkward! I’ve found that many GP’s don’t really have knowledge of this as social care isn’t their area- medicine is. If the least restrictive suitable option doesn’t work out, then a more restrictive option can be tried. But the least restrictive (but still risk assessed) option generally needs to be given a go first. If your mum goes to this place and it is found that her care needs cannot be met within that 34 hours then they would need to be increased.

It sounds like you are exhausted. It’s scary, but sometimes it’s necessary to just hand things over for other people to deal with. If the support isn’t enough, it’s not your problem and social services will have to sort it out. If it is enough, great.