We've become carers, and I don't know how we're going to cope

[Gazelda]

MIL has been very ill. Has been in hospital for about 2 months but recently discharged.
In our opinion, she's not safe to live alone. But she is insisting she wants to be at home. She has capacity so SW are complying with her wishes.
She's immobile and doubly incontinent.
She has the highest level of carers from social services, but still falling out of bed, not eating/drinking etc
Me and DH both work FT. Have a school aged child. Live 40 mins from MIL and don't have downstairs loo so she can't move in with us.
We're 1 week in and she's had falls, 2 ambulances, we've each had to rush out of work to go to her. DH is in tears every night feeling he's letting her down but also trying to keep his job.
How the hell do we cope?

Loads of great advice on here. I think you need to frame it to your DH that by caving to SS he's enabling MIL and doing her a disservice because he can't actually manage her care himself, so she will continue to have falls and injuries while she remains in her own home.

I really feel for you OP, I hope your DH will agree this is unsustainable and MIL will realise she needs 24hr care.

After my mother recently spent 12 hours lying in a pool of her own urine waiting for an ambulance after yet another fall in her unsuitable home, I explained to her that the choice was not between staying at home and moving somewhere more appropriate, but between having some choice and control over the process of moving now, or understanding that the next fall might put her in hospital, and leave her unfit to return home and needing to accept whichever care home happened to have a space at 4pm on a Friday afternoon when the hospital deemed her fit for discharge (which is basically what happened to my father). She has now agreed to move to a sheltered flat with on-call support.

It is extremely hard. If a carers agency have already said they cannot cope how can you?

There is a huge difference between looking out for someone and looking after someone /nursing care.

There are lots of us dealing with similar issues in the Cockroach Cafe on the Elderly Parents board - feel free to come and join us if you want ongoing support and advice from people who have been through all this: www.mumsnet.com/Talk/elderly_parents/4285096-Cockroach-Cafe-newly-refurbished-for-the-summer

I speak as the daughter of now deceased (bless her) mother who had massive stroke. She was hospitalised and in physical rehab for six months and she was doing great when sent home with low level care. Then Dad got cancer and died within a few months (bless him, he was a saint).

We all did our bit and it was heartbreaking, took unpaid leave, went to house early in the morning with meals ready for reheating etc. and visited often. Then Mother got another stroke and Dad was being nursed by palliative care at home. Such a sad situation.

When Dad passed Mother became unbearable due to the effect of the second stroke. We were grieving and worn out. Her personality changed and she became very belligerent but was obv missing Dad but didn't fully understand that he was gone. Anyway she needed residential care but refused and wanted to stay at home. We acceded to this for six months and gave up because we just couldn't do it. She was self funding so luckily we were able to get two weeks respite locally in a lovely NH. She adapted within three days and survived 18 years there in the end, never having returned home after respite. It became her home, and the relief of not having to worry about her all day and all night for us her children was immense. We could visit in relays every day, knowing that we could come home to our own families sure in the knowledge that Mother was in the best place.

Some older folk can be terribly stubborn and very selfish IMV. They need a dose of reality. No point in the family falling to pieces because of what they want regardless of the practicalities.

I am not in UK (ROI), and the system here is called Nursing Home Support Scheme. It is not perfect, but you pay a percentage of assets/earnings to fund care each year, together with a small (7.5%) percentage of the value of any property owned for just three years, which can be deferred until you die. No one loses ALL their assets or their home, but obviously the more you have the more you pay.

So sorry for rambling on, but I wish OP the very best, and stand your ground, your situation is totally untenable. MIL needs a wake up call, she cannot have it all her own way if she wants to stay safe. Back off and see what happens.

@Dogatetheleftovers

Please ask for an urgent NHS Continuing Healthcare Assessment. Have a look on the Care To Be Different website for further advice. But your MIL can stay in her own home if that’s her choice and receive the care she needs to meet her health requirements if she satisfies certain criteria. If she is falling a lot, doubly incontinent then those issues should certainly go a long way to her meeting the criteria. It’s horrible, I’m so sorry you’re all in this situation.

Exactly the right advice. Age UK and Beacon are both good too, but all services are snowed under. She should have been given a 4 week free care package whilst they assess her needs. We had a telephone appointment with a nurse based at the hospital and my dad was eligible for a live in carer and then as he got closer to the end of his life, he had the live in plus a carer 4 times a day to help clean him, change him and make him comfortable. We were able to use all these services to grant his wish of dying at home.

Unfortunately, DH keeps caving into pressure from SW.
She has capacity and has said she wants to go home.
So here we are. Trapped

I feel for you OP, and your DH. You're just on the cusp of not quite far enough away for SS to have to step in, no matter what, and yet just close enough to 'come running'.

My DPs lived too far awary from me and my siblings when we got to this stage. That had been their choice, they knew they wouldn't have any family support around them in their later years.

When the inevitable happened, Adult Social Care had no choice but to step in. Both DPs were incredibly stubborn about staying at home (my DM was in hospital for over 70 days following a cardiac arrest, my dad was very infirm, and yet they insisted my DM came home when the hospital discharged her, and despite my objections, was told 'they have capacity'.

Trouble is, my DPs hadn't told anyone at the hospital that none of us lived anywhere near them (think in terms of a different country) and it was only when I managed to tell Adult Social Care in their area what the reality was that anything happened.

But, OP, once I did that they really did swing into action and I can't fault them on that. Once they know there really is no family support they can, and do, provide services, and/or will point the way to private providers if your DP's funds will support that.

Every case is different, but you and your DH really have to stop running every time the phone rings, otherwise they will think you can cope. And you know you can't. It's shit, I know it it, but you have to say 'no, we can't do this' before they will listen to you. And your MIL has to accept you can't do it either

Hey OP, your position sounds exhausting and unfair. By chance I found out about Attendance Allowance which could potentially be claimed here, and I mention it because I don't quite understand about funding being one of the main focuses of SS with specific regards to care as you mentioned above.. Also when parent came out of hospital and SS were involved, we had both a hospital SS contact and an in-the-field contact - social workers I mean. Have you been able to see her discharge care form? Were there individual SW mentioned? Or agencies? You could do a lot worse than flag up the situation with anyone in this capacity mentioned on the discharge form.

I got my mother to sign a declaration form with her own GP surgery such that I was able to discuss her care needs. That opened the door a bit and I was able to ring up one person from the surgery and discuss my fears, and get suggestions from one of their contacts at the surgery who pointed me towards... etc. A good notebook is recommended.

When I called AgeUK due to crisis care needs for my mother, I was simply directed to the website. I was informed, when I finally reached someone, of what "they" (sorry I thought I called AgeUK?) can direct you to. What "they" can help you with. Thats fine, I can fill in any forms myself and download them too. It's not pdfs I need, it is assistance. I was so unimpressed by AgeUK. It must surely differ from county to county as there was no-one for me to speak to other than the "go to the website" lady.

I am sorry for all you are going through. Much worse than my situation. Best wishes to you. And I tell you what, you will get to a better place. You will. And your relative will be safer - just some crap to get through first (it doesn't go away of course, and you would not wish it so as this is someone whose care has landed on your watch - but you will get to a saner place. I PROMISE you).

@Twelvetimes

You just have to wait for this level of care at home to be seen to 'fail' (which it soon will) so that Social Services deem it in her best interests to move to a care home.

As others have said, contact SS every time there is an issue and emphasise that she is a risk and no longer safe with this level of care at home.

Problem is that if she has full mental capacity she can’t be forced into a care home against her will by you, SS or anyone else. Even if she can’t look after herself physically, unless the appropriate medical professional is prepared to section her under the mental health act, there’s not a lot you can do, except try to talk her round and then advocate for her once she agrees that the situation is not tenable.

You tell Ss you are unwilling to care for her as her needs are too great. You don’t back down. Sorry you are in this position, its crap

So are SS stopping her going into a care home and she wants to go?

I've had elderly DPs pass away one in a care home, and now have a DS in a care home with dementia but not that old.

You have to be a bit philosophical and accept that she is elderly, unfit, though able to demand what she wants. There is no magic wand that will give her the life she wants (the one she had 10 or more years ago) and she is trying to force you to provide that sort of life, when no one can.

It's obvious with the number of falls etc she needs 24/7 support and should be in a care home. She will have all the staff to chat to and her meals put in front of her 3 times a day. She'll be kept clean and helped to the toilet. Be entertained occasionally and have company.

Visit care homes to see what is available. If you find one suitable take her to view it, she might even changer her mind.

@Atalune

You can’t.

You MUST make a stink and advocate for your MIL and find assisted living in a suitable home. Near to you.

It’s heartbreaking. You’re doing your best. Don’t feel guilty.

But if MIL refuses to go in a home, no one can force her.

Funding is possibly/probably primary SS concern

No.

SS cannot force someone in to a home of they refuse to go in to one. It'd be imprisoning someone! SS are probably as exasperated as you are. Trust me. Finding a home and getting someone settled is the easy part of the job. Having to find multiple care agencies, complete capacity and risk assessments, manage the huge risk is much harder and time consuming.

Visit care homes to see what is available. If you find one suitable take her to view it, she might even changer her mind.

Yes. Good suggestion.

That is horrendous pressure on your DH. No way should he risk his job because of this. You could try contacting Age UK for their advice. They have a lot of experience of this kind of situation. She can stay in her own home possibly but she should not get out of bed without help. She could have one of those alarm systems round her neck and if she has a fall they will respond.

In my experience @viviennemary AgeUK cannot support in this way. My mother was provided an alarm bracelet and phone unit via Argenti Home Support, which we are grateful for and it really does work. Social Work Team from our local council organised this. It was free, to my astonishment. The woman who came and explained it and installed it was excellent and follow-up support has matched that. It had precisely nothing to do with AgeUk though.

What Age UK offer varies hugely from area to area.

@JoborPlay

What Age UK offer varies hugely from area to area.

The helpline, which is what we're suggesting, is national. It's good advice on her rights (and her MIL's) and how to go about getting them, that OP needs right now.

Very hard situation… does anyone have power of attorney.. my feeling is she will rapidly end up in hospital & will possibly shorten her life if she has a bad time on her own. My grandma was at home managing just about until she had a fall…in 3 months she’s lost the ability to stand up or walk. Now in a nursing home, and I don’t think she’ll be here this time next year as the distress this has caused her has really taken her down hill. Stability is underrated in old age I think- she will be safer, healthier and possibly avoid catastrophy if she moves to a safer environment. Perhaps see if you could visit some places with her or some assisted living set ups.. might help her see what it could be like. If she has Alzheimer’s (my grandma does) I’d definitely recommend organising power of attorney as with physical distress things can degenerate very quickly so I’d recommend having that in place in anticipation of smoother sailing ahead. Big hug to you all Xox

Sorry to be unclear. I didn't mean Age UK provided alarm systems but would give advice on what is available and make suggestions. Not that Age UK would respond to calls. Its a question of finding out the level of support that's needed and if its feasible for her to stay in her own home with carers going in.

You MUST make a stink and advocate for your MIL and find assisted living in a suitable home. Near to you.

Make a stink to who? Advocating for the DM is making her wishes known, which would be then supporting her to go home?

Gazelda "It absolutely isn't about funds, from our side.
She has a small amount of savings and owns her flat outright. We all want her to be safe, comfortable and happy, however much it costs in £.
Funding is possibly/probably primary SS concern"

I don't see why SS should be concerned about funds if she is paying?

The real issue is persuading her, not SS, if the funds are there, surely?

@godmum56
I already explained that my opinion isnt the legal definition. Just my opinion. I know that people are allowed to make dangerous/ unsuitable decisions.

If I phone AgeUK tomorrow, which I am minded to do given some previous posts, I don't expect to find any better advice regarding my own personal AgedP and DependentSibling challenges beyond "go to our website where you will find many helpful leaflets". I will post back if I find I have been unfair in my descriptions of what they could offer me and my tribe.

I wish we could offer something concrete to OP. Get as many professionals as possible involved as you can and get them to talk together. And keep that notebook. Ok love over and out.