Not coping! Any advice to help increase care package?

New to Carers Connect
1

Good Evening all, I’m really sorry to post such a long message, but I’m wondering if any one has any advice on getting social care to increase a care package?

My elderly mother lives with me and I’m just not coping. Like really, really not coping! And her condition is just going to get worse!

She has carers 4 times a day, but I’m picking up the slack. They come at the wrong time and so I have to do lots for her. Averaging 14 hours a week, often up to 20. I know that doesn’t sound much but it’s on top off a very demanding full time job where I’m out the house from roughly 8 - 6. And that amount is also an underestimation - I’ve been logging only direct care hours and taking time ‘off’ when I do things like make a cuppa for me whilst she’s in the loo! (Not that I ever get to drink it!), and it doesn’t account for the little things - I’m sure everyone here knows the dreaded feeling that comes with them saying 'can you just do x, y or z? ’ - normally when you’re juggling 7 other little jobs for them / running out the door cause you’re late for work AGAIN!. And it certainly doesn’t account for the fact you’re always ‘on’ and never really get an actual break.

Anyway, it’s got so I actually hate and resent my mum. I have no life now. I hate and resent my sister as she lives in a different (but closeby) town and so - whilst she really does do what she can - she gets to go away when suits her and have a life. I’m trapped.I feel like there’s no end and it terrifies me that my life is slipping away. Therefore I find myself like a teenager - I’m shouting at my mum, being snappy with her and deliberately not hearing her when she’s making her latest demand . Clearly, the caring role is not for me! I’ve been tried, and judged and found very wanting! But I’m happy to accept that and I now know that can’t go on so I’ve been looking at live in care. It’s that or I’m selling my home and moving on my own into a tiny flat on a small island far away.

I know I’m going to have to fund some of that myself but mum’s package is clearly inadequate if I’m having to do so much direct care. How can I make social care see this so that I don’t end up bankrupt or loosing my house in my attempt to cling to my last thread of sanity? I don’t expect them to fund it all, but we’ve worked out she needs 41 hours care and she’s getting less than half that!

Sorry for the rant! Hope someone can help!

L

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Hi Lucy,

Welcome to the forum.

Juggling work and caring is difficult as is caring for a parent with increasing needs. No wonder you are stressed. You are only human.

This isn’t my area of expertise, but it’s very unlikely your mum will get more than four funded care visits a day. If someone needs more than four care visits, then they are usually in need of residential care. If some of the help she needs is more chore based, then she could use her Attendence Allowance to pay for a cleaner/ gardener etc

If the care visits aren’t at a useful time, then look at her Care plan. Does if need updating or is the care agency not sticking to the times she actually needs care? Does she make good use of the care visits or is telling the care workers not to bother doing things, because her daughter will do them?
It’s unlikely she’d get a funded live in care worker, but you could swap care visits for a direct payment and then put that towards a live in carer, however, it’s not a cheap option.

What are you mother’s care needs? Would she be eligible for continuing health care? ( you can google the checklist and points system, to get an idea if it’s worth asking for her to be assessed for it.

Melly1

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CHC / NHS Continuing Healthcare ?

Main thread :

https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-nhs-continuing-healthcare-chapter-and-verse-under-one-thread-guidelines-and-links-32532

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If 4 carer visits isn’t enough, it’s time for mum to have 24/7 care in a nursing home. This level of need usually indicates that someone is nearing the end of life and needs will just increase from now on until the end.
Mum has NO RIGHT to expect you to sacrifice your life for hers, but she has probably become so self focussed (not the same as selfish) that she just can’t see how much you are doing for her.
Only YOU can sort this out, mum won’t agree willingly, but the only power she has over you is the power you let her have. It’s your home, your life.

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Thank you all for replying - it is nice to see I am not alone. Bowlingbun - your reply was so helpful - I was worried that i would be attacked for feeling this way (I have seen it on other forums), so to hear someone so adamant is really really helpful. Clearly you have been there!

Things have moved on a bit - I have come back from a 2 day enforced respite (work) and my sister is now on the same page as me, having had to look after my mum. There may be a dissenting voice in the form of our brother who is aghast that we are talking about ‘putting mum in a home’, but as he lives abroad and only visits once or twice a year, well I’n not going to finish that sentence …

Unfortunately, she is not entitled to CHC funding (I had that done fairly recently). We are going to leave it in the hands of Social Care - we are going to contact her social worker to see if her care package can be upped and then we will see about direct payments. We have talked to some of her carers today, and they all feel she needs longer time that they are given (In fact, one had already messaged their boss about this). If we use Direct Payments, we have worked out that we can just about afford a live in package with some help from my aunt, and a re-mortgage. There will be no holidays in the foreseeable future, and we will have no savings left, but them’s the breaks!

Thank you all so much for your time. I had no idea how hard, lonely and difficult this world of unpaid caring was until earlier this year - I have been on a massive learning curve and honestly, I have it easy compare to some out there. THANKS, L

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Mum needs residential care. If she has under £23,000 it will be partly or fully funded by Social Services. The financial assessment only considers mum’s financial circumstances.

You are clearly at breaking point. There is no shame in that, yes, I have been there. My husband died soon after his father from a massive heart attack, I will always believe that he’d still be here if he wasn’t trying to juggle work and caring (we have a son with LD).

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Hi Lucy
Just checking that your mum lives in your house rather than you living in your mum’s house, important when it comes to financing care. I think reading your thread you are are the owner in which case it is good but please do not remortgage! It is not your responsibility to fund your mum’s care. If it is your mum’s house are you under the magic age of 60? If so please come back for more advice!!!

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It is very easy to be pressured (especially by Social Services) into agreeing to something that is not in your best interests.

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Yes, can you clarify the financial status of your mum? Did she ever own her own home, and if so, what has become of it? Does she have any savings?

The principle in law you have to have centre stage is this: Neither you, nor your siblings, nor any other human being has ANY legal ‘duty of care’ towards your mother. ALL of you are legally entitled to put her out on the street if you so wished!

Obviously that’s extreme (!) but NEVER forget that! I’ve had to remind my local council of that when they started to go on at me - once myt MIL was running out of her money to pay for her residential fees - about ‘family helping out’ (!) with a firm ‘She is NOT my legal responsibility, nor ANYONE’S but the State’s’!.

As others are saying, councils, SS etc are only too keen for you to THINK you ‘have’ to care or ‘have’ to contribute financially.

The bottom line is that if she NEEDS full time care and has NO assets (no property, and savings less than £23,500), then the COUNCIL must pay for her residential care. That is where you stand, and KEEP reminding them of that!

If your mum is living in YOUR property, then you are ENTIRELY legally entitled to evict her! (eg, you could drive her to A&E and ‘leave her there’ for SS to have to place her in emergency residential care - you are under NO obligation to house her or have her back!)

Keep reminding SS that - because, as I say, they will try and ‘con’ you into thinking you do have to have her back, and you do have to pay for her care in some way.

Since residential care will be more expensive for the council to provide than at-home care, they are more likely to concede that you need more at-home care, as the alternative for them will be having to pay for her to live in a residential care home.

Does she have dementia by the way? You haven’t mentioned it, so I’m assuming not! But whether she does or doesn’t, if she doesn’t own where she lives, she has no legal right to be there!

I do hope your relationship with her is good, even if stressed, and that when more care is provided, your stress levels will drop significantly!

As for your brother - yes, least said…!!!

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I reclaimed £8,000 from the council for mum, when I challenged them. However, the senior member of staff was clearly irritated that I’d challenged them. I said at the meeting that I’d like to explain things from my side, but every few words she interrupted with challenges.

I said that there was no point in me driving 40 miles to see them if they were not going to listen to me. Clearly she was not used to being spoken to like this, relatives were supposed to be mouse like, but I knew the rules, had more training in accounts etc. than she did, and I too was used to being respected. (I used to run a nationwide club for lorry enthusiasts).

Don’t allow yourself to be intimidated! (If possible, deal with this all by email rather than at a meeting, so you have evidence of what they said to you!

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Again, thanks all- Mum does live with me in my home, and has no savings to speak off. I’m not quite ready to drop her off in A&E yet, but it may come to that- it sounds awful but knowing that’s an actual option feels really , well not positive but like I have a get out of jail free card I can pull out when things get too sticky! !

Thanks again, L :slight_smile:

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When did you last have a couple of weeks to yourself. It’s OK to ask the council to arrange respite care for her (some people have then refused to allow them back home!)

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I think just knowing you ‘could’ take your mum to A&E takes pressure off you! If we ‘know’ we have an ‘escape route’ it can really help. We can also ‘know’ we would never actually do that (!), but knowing we could, is what is so, so helpful.

I definitely think your first step is to start alerting the council/SS to the fact you are at the end of your tether and SERIOUSLY considering throwing in the towel - ie, that you mum will HAVE to go into permanent residential care. Point out to them what I have told you - ie, you have NO legal duty of care for her, and she has NO right to live in your house and you are TOTALY free to head off to Australia for ever and ever if you so wish!!!

That will show them (a) you know the law and (b) you are deadly serious about giving up on coping with your mum.

That way you can start ‘pressurising’ them to (a) provide more daily care for her and (b) offer some respite.

I would start telling them that IF you had more help with her and IF you got a decent break if she went into respite (say you are booking a holiday abroad!), then you MIGHT be able to cope with her longer…that will give them the incentive to fork out a bit more money on her behalf (more care, respite), in order to avoid them having to fork out for her permanent residential care.

It’s ‘game theory’ from now on!

What does your mum feel about it all? As with SS, if you think you COULD cope with her with more help, and if you got a break by her having some respite stay in a care home, she might cooperate - as in, her alternative would be a permenant ‘rest of life’ in a care home.

Finally, don’t think of care homes as ‘horrid’. My MIL was in two lovely ones (third was also good, but she had deep dementia by then). The second one in particular was like a ‘hotel for OAPs’ …the mum of a friend of mine absolutely LOVED her week in respite care! Waitied on hand and foot and like a luxury hotel!

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Sorry to hear about what you are going through Lucy.

Although you come across as well able to handle yourself in meetings etc, it does no harm in having support. If you have any local carer groups/Age UK offices, some of them provide advocacy services. This would hopefully be helpful for yourself, talking to someone face to face that is on your side. In many cases they can accompany you to meetings too.

Carers UK have an Advice Line too and they can ask you further in depth questions that we are unable to do so on an open forum to maintain your privacy. Get in touch with us | Carers UK

You can also ask for a review of your mams care plan and a new assessment for yourself.

You may get a satisfactory outcome, but in meantime it will do no harm in gathering further information in case needed in the (near) future.

https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments

https://www.carersuk.org/help-and-advice/practical-support/when-caring-ends/residential-care

Rosemary

x x

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Hi Lucy,

Sorry to jump in on this post - and anyone please feel free to delete if feels like I am piggy backing - but I came across this whilst researching the exact same topic. I didn’t want to start a new thread when this one so could have been written by me - it is like having someone say exactly what I am feeling! I’d better point out (so we don’t fall out if she ever reads this!) that the only difference is that I am lucky enough to have a sister who tries to help, which does definitely makes a difference (and I am incredibly grateful but, no matter how much she does, she still gets to go home and have a life; she just cannot possibly understand how hard it is to be stuck in this situation you can’t escape from – I’m not judging her - I had no idea until it happened to me!)

Anyway, thank you to everyone who has given advice / views - it is super helpful! So I am going to be really cheeky and ask if there is anything else I need to do to increase my chance of success?

I have contacted Social Care today, I have told them I am not coping and that I am thinking of quitting being a carer and have asked nicely (but firmly) for a meeting with a social worker this week. They have already rung me back to reassure me that - whilst there is no one there today to help - someone will definitely get back to me tomorrow. I assume this means that they are taking me seriously!

I am hoping to get them to top up mum’s care package so I have put a list of everything that is not being done on each visit, and I have started a list of what I have to do to get the basics done on top of this. I am also luck in that one carer spontaneously told us that they think mum needs more care (and had actually passed this on to their manager), and then when we have asked the others, they have all agreed. Then mum had a little trip yesterday - she has bruised herself (we had it checked in the hospital) and - whilst I am obviously not happy this has happened - I think it is evidence that she needs more support.

If I can get them to agree to increase her hours, I will then ask for the hours they have assessed her as needing in direct payments (I am afraid if I talk about wanting them first, that they won’t up the hours!).

I know (from this forum - thank you!) that I cannot be forced to contribute but I am fortunate enough that - if social care step up to the mark and give us more hours that we can convert to direct payments - I can just about afford a live in carer. I don’t expect them to fund it all as I know it is way more than a care home. I know not everyone can do this, but I am honestly happy to contribute - I am very fortunate that I have a good job and so am happy to pay something that means that I regain my sanity and a piece of my life back, and my mum would hate a home (I have nothing against them - my aunt was in two fantastic ones, it is just not the right environment for my mum).

Is there anything else that it would be helpful for me to do (other than not get my hopes up)?

Thanks in Advance,
Fran

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Keep a diary note of who you spoke to, when and what they said ( they are veru good at denying knowledge of calls etc)
Ask for e-mail addresses and send follow-up emails “just confirming our telephone conversation of…”

Be aware that any hours/help agreed now, can later on (soon) be reduced by SS in a review, especially if they think relatives can pick up the slack in either time or money

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Definitely ask Social Services to arrange an advocate for you and another for mum. I have found it incredibly useful to have someone on my side at SSD meetings. I always ask them to record who says what so that I can concentrate on doing the talking.
On one occasion, I met with SSD and my advocate. I took charge of the meeting, and insisted that we went through a list of items I’d printed out beforehand, along the lines of "Do you agree or disagree that M needs help with… Then SSD had to tick either in the agree or disagree column. Subsequently, I made a subject access request and saw her notes of the meeting. They were an entire work of fiction, not even mention of the list!! but because I had an advocate, we could both say that it wasn’t a true record.