Feel completely helpless

[itchychin]

Hello all, I’ve recently been reading and lurking but you all seem so wise I thought you might have some advice.

My Mum (78) had been getting frailer over the last year, and due to limited contact ie we saw them in the garden for short periods, I didn’t notice how bad it had got.

My mum and dad (76) live together but my mum recently had a fall, and it all came to a head when I found out she couldn’t walk and was crawling to the bathroom. She’s been increasing vague over the last few years too.

Last week I called 111 and she’s ended up in hospital. She was very distressed and it was awful. They’ve found lots wrong, hip fracture, signs of a small stroke, vitamin deficiency, possible dementia. Over the last week they’ve been checking everything but I’ve only spoken to a dr after the initial tests and now it just seems to be nurses who can’t tell me much.

My mum has a mobile and today called me asking me to collect her. As far as I know she can’t walk.

She’s only allowed 1 nominated visitor so my Dad goes daily.

He seems to be coping but he can’t look after someone else (he is getting by on microwave meals - I bought him some today and some fruit and veg). He also has a dodgy knee and skin cancer (he’s on a waiting list to see a specialist that I want to chase). Today I threw out 2 bin bags of off food from their fridge.

Anyway my worry is a) I don’t know what’s going on at hospital- is that normal? b) I’m really worried they’ll discharge my Mum and it won’t be safe c) what might happen next, a care plan?

Sorry this is really rambling. I’ve no siblings or partner (but lots of good friends) and I feel a bit lost.

Thanks for reading!

It's sounds as though your father isn't capable of providing any care, so I would be inquiring about care homes.

That all sounds overwhelming for you.

I know it must be extra difficult to liaise with anyone at the moment- though surely they'll have to relax some of the rules soon - but in normal times I think you'd be advised to make it clear to the hospital that she can't come home until a suitable care package / plan is in place that meets her needs. Don't offer to take on her care yourself as they will be only too keen for you to do so. You have no obligation.

If your father's barely coping now it wouldn't be safe for her to be discharged without extra support.
You and your dad (ideally) need a proper discussion with her consultant so that you know what her medical and other problems are.
Unfortunately wading through the social care system and health service is very time consuming and often frustrating so you'll need to be well informed. And you'll need those friends too!

There are lots of MNers who are much more experienced and wise than me, but my advice would be to call today and ask to speak to the Discharge Clerk/Co-ordinator for the Ward.

They should be able to tell you what the plans are, if your DM has a SW and if a Multi-disaplinary meeting has been called to review your DMs care.

Agree with the PP, you'll get asked what care you can provide and remember they mean 365 days a year, every year.

If she doesn't get it already, you'll also need to apply for Attendance Allowance.

You might want to apply for Attendance Allowance for your DF and look to see if there are any lunch clubs for the elderly near to him.

We were in a similar place to you almost exactly 12 months ago but with no visitors allowed. I found the Nursing staff and the discharge clerk to be really helpful. I also called the SW every day as it was mainly him holding things up.

Ask the Nursing Staff if they want a copy of This Is Me. It's usually integrated into their notes and the staff are usually really grateful for a copy as it helps them to care for her.

Good luck and let us know how you get on today

The Dr is unlikely to pro actively ring you unless they have something important to say (we have a lot of patients and not all relatives want to be called so unless you ask we don't know) but if you leave a message with nursing staff to ask to speak to a Dr then it's likely they will call you back. Have an idea of what specifically you want to ask rather than a general update.

Re: discharge planning it's very likely they would arrange what's known as reablement care for her which is up to 6 weeks free non means tested care on the NHS. This is arranged for people where they are able to go home with help and have some potential to get better. If they are unlikely to get better a permanent care package will be required and this is means tested ie she might have to pay if she has savings over 23,500.

There will be a discharge planning co-ordinator who arranges all aspects of the discharge and that would include talking to family about the home circumstances but they may talk to your dad unless you ask to be involved. Ask to be put in touch with the discharge planning team.

Does anyone have LPA is an important question that you are likely to be asked

If not it might be too late for mum to make one as it sounds as if she may lack mental capacity but consider getting dad to do one at least for finances and for health and welfare if he agrees. That gives you a legal right to be consulted over decisions if the person lacks capacity.

If they are unlikely to get better a permanent care package will be required and this is means tested ie she might have to pay if she has savings over 23,500.

It might not be something that you want to think about but if she does have savings over £23k and you do have LPA, you should look into prepaying for her funeral out of her savings.

Unfortunately poor communication from hospital to family is very common at the moment. It’s understandable but it’s very unhelpful.

Everything @CovoidOfAllHumanity said above BUT do you have POA for your mum? Or is your dad considered the main point of contact by the hospital? If it’s your dad is he capable of/likely to be reliable when talking about what he can and can’t manage?

Definitely ask to be put in charge with the discharge planning team - they will include local social services. Get your dad’s permission and ask to be made the primary point of contact - but be prepared for this all to become very demanding. Your parents are going to need a lot of support from now on, and you need to be clear on what you can and can’t do.

@campion

That all sounds overwhelming for you.

I know it must be extra difficult to liaise with anyone at the moment- though surely they'll have to relax some of the rules soon - but in normal times I think you'd be advised to make it clear to the hospital that she can't come home until a suitable care package / plan is in place that meets her needs. Don't offer to take on her care yourself as they will be only too keen for you to do so. You have no obligation.

If your father's barely coping now it wouldn't be safe for her to be discharged without extra support.
You and your dad (ideally) need a proper discussion with her consultant so that you know what her medical and other problems are.
Unfortunately wading through the social care system and health service is very time consuming and often frustrating so you'll need to be well informed. And you'll need those friends too!

This would absolutely be my advice too.

We were put in this position earlier this year with my Dad when a sudden and very unsafe discharge from hospital foisted care of a suddenly totally immobile 87 year old man onto my already frail and mobility compromised 86 year old mother (and my sister and I).

Her needs need to be assessed and the right care package put in place before she can come home. Make this abundantly clear to hospital staff and say that she cannot be accepted home in her current condition without. Emphasise that you cannot take on her care, and that your Dad is also in no state to do so.

This may involve the hospital making a referral to adult social services and/or discharging her to a bed in an assessment facility if one is available (there aren't enough of those). Don't worry if that happens though. It can be what is needed in order for the proper assessments to be done. It doesn't mean you or your Dad are failing her in any way. It is just to try to get the care and support you all need.

Good luck to you. I've been there, and not out of the woods yet. I know just how hard it is.

@CovoidOfAllHumanity

Does anyone have LPA is an important question that you are likely to be asked

If not it might be too late for mum to make one as it sounds as if she may lack mental capacity but consider getting dad to do one at least for finances and for health and welfare if he agrees. That gives you a legal right to be consulted over decisions if the person lacks capacity.

This too. It can make things easier.

If she is verging into dementia territory, the first thing you meed to do is get a power of attorney for both medical and financial matters and register them. There is a government web site you can google. I strongly suggest you are the designated person and not your DF as it should always skip a generation (to a child if its an elderly parent, and to a parent if it is a young adult)

Once you have the legal ability to advocate for them, everything will flow much more easily

the first thing you meed to do is get a power of attorney for both medical and financial matters and register them
I second this, very stressful for you!

Oh dear, we went through the mill this time last year with a very similar situation. MIL had deteriorated badly at home and ended up in hospital. FIL was there, with no real medical conditions but while he meant well, he was a terrible carer! Didn't make sure she took her meds, didn't make sure she drank or ate enough, expected for too much from her in terms of rational decision making etc. (she had Parkinson's and dementia plus osteoporosis).

PPs have addressed many important points, not least the need to get POA sorted if you haven't already.

The biggest problem we faced was FIL finding it difficult to acknowledge and say out loud that he couldn't care for MIL at home. And because of this, the social workers initially tried to put a home care package together that we knew would be total unworkable in practice. But because of Covid it was very hard for SIL or DH to get into the line communication. FIL was visiting the hospital, so he'd speak to the physio / nurses / OT and give them a completely unrealistic idea of what he was capable of or willing to do - he didn't want to be the bad guy I don't think he even really understood what was being expected of him tbh). It came down to DH and SIL having to coach him to say the words out loud - that it would not be safe for MIL to come home as he couldn't care for her the way she needed it. They also had to push hard to be included in the decision-making process and not just FIL because he happened to be visiting. DH spent hours on the phone trying to identify the key decision makers at the hospital, and having hard, direct conversations with them to try and mitigate what FIL was saying. It was really really tough.

You won't get PoA for your mum if she isn't now of sound mind and fully understands what she's signing.That's why it should ideally be done years in advance, though that's no help now. Worth getting a bit of legal advice though, certainly for your dad.

It also may be worth asking for a preliminary assessment for NHS Continuing Healthcare which focuses on medical and health needs. You're very unlikely to be told about it but you can look up the details yourself.

Thank you all, very practical. Yes i don’t think she has mental capacity for POA but I should do one for my Dad. She’s been moved to a different hospital today - a specialist stroke ward, and I managed to have an update from a dr. It’s bad enough with only 1 visitor but it must have been so much worse for those of you not allowed any x

You can speak to the PALS service at the hospital to get a proper update and when it comes to discharge planning ensure a social card assessment is undertaken. They may very likely put a home from hospital Package in place but you will need to ensure that a full care assessment is done for her and your father's long term needs. You are entitled to this whether or not you can afford to pay fir this care.

When it comes to entitlement and laying for care - whether in the home or in residential care both Age Uk and independent Age have excellent helplines. Both domiciliary care (at home) and care Hines are inspected and rated by CQC so you can find the best rated agencies and providers.

Best of luck. My sympathies - it us always difficult but even more challenging right now.