It's all a bit of a nightmare... Options?

[Pebble21uk]

Just a bit of an offload and to see if anyone has any suggestions.

Basically both parents living independently together. Dad 88 and with autism and Mum 85 with Alzheimer's and housebound due to mobility issues. Have been VERY reluctant to have outside help and have relied more and more on me and my partner.

2 weeks ago I was admitted to hospital with lung infection and Pericarditis - been really poorly and now at home recovering slowly. I'm not well enough to go over to them (10 miles away) and my partner is looking after me - it's been quite a traumatic time for us.

Yesterday Dad fell ill. He has a history of gastric issues and bowel cancer and something has triggered a flare of something. My partner spent the day on the phone to various people - managed to get a Nurse Practitioner to visit and also a lovely neighbour of theirs.

Today he says things are no better, maybe worse. My partner has again phoned docs and waiting for call back and neighbour is again going round.

I am just here - very stressed, unwell, unsure how bad or not things are! My worst fear is what happens if he needs to be taken into hospital as he has in the past - what about Mum? Normally, we would go over and stay with her or bring her to ours, but I'm not well enough for either. What would our options be?

I'm just so tired of my partner and me being the only ones 'on call' and the first point of call for every issue, especially now I'm ill. i have a sister but she lives hundreds of miles away and to be honest is useless. She also works and I can't see her in a million years taking time off work to help out.

Yesterday we finally managed to get Dad to agree to having some more outside support for them twice a week - but it's all such a battle and it's always once the horse has bolted!

Sorry - just need to offload! None of ths is helping my own recovery!!

Does your dad actually realise you cannot help out currently? If you can't then you can't and I think you need to be quite clear with your dad that you are no longer on-call due to your own health issues - then you need to contact adult social services but be equally clear that you are NOT in a position to help and your parents are vulnerable. Ideally it sounds like your parents need carers in daily but if your dad has capacity to refuse then there's not a lot you can do except wait for a crisis - brutal as it sounds.

I'm so sorry you're ill ..and this on top!

I would contact Adult Social Services in their area now. Also, if you are getting private carers in, call agencies now. Don't wait for agreement before gathering info.

Wish you a speedy recovery

This could be the crisis that actually pushes your parents into accepting help.
I think that the GP can refer to adult social services to access a social worker. This could be the gateway to some support. Unless they're well off in which case they may need to self fund.
Are they claiming any benefits or aware of any they could be getting?

PP are right, it's really shit.

You do need to look after yourself.

Thank you... there is so much guilt as well!

My partner is now on hold to Adult Social Services to see what they say. If we can get a needs assessment in advance I suspect that will help us in the long run. I think we do just have to go ahead and put things in place even if Dad is very stubborn about things, so we don't end up in such a mess again! He can be very controlling as he has huge need for routine and rigidity.

Mum has Attendance Allowance - but so far they have only had a cleaner in once a week.

Dad does understand I'm ill - but that kind of goes out of the window when he has urgent needs!

Pebble21uk

I hope your feeling better

As another poster has said - this is just the sort of situation that leads to a complete revision of care set up. Things bumble along - you working your socks off to care for 2 homes, elderly frail parents refusing help, authorities at arm's length happy for you to continue to bear the full brunt.

So - this is what you need to do today
call social services - tell them your parents are at serious risk. That you are unable to help them in the short to medium term at minimum, there is no one else who can help and that they need emergency support, especially if your father is admitted to hospital.

And then you and your partner step back. Right back. This is difficult. Very difficult, but you're unwell - pericarditis is not a joke diagnosis - it's serious and your recovery will be adversely effected if you get physically involved.

It's not that social services will refuse to engage (they may, but it's unlikely). The biggest risk is that your parents will continue to refuse help. This has happened in my family and until that slow motion car crash happens - there is nothing you can do, except alert social services.

It's time for you to be focusing upon your health 100%

Thank you so much. Partner just off the phone to social services. They said they will alert the professional team and get back to her!

I'm just so exhausted, but can't relax!

We're really taking notice of all the advice thank you. We have fought for so long to get them to have extra help to no avail and now it feels like it's coming home to roost.

My sympathy, it is always a crisis that starts the process of actually getting the care they need accepted.
For my parents, social services were actually very good when all the wheels fell off - the paramedics actually contacted them when they came out to dad to say mum couldn't be left on her own and they arranged an immediate carer to come on one occasion, and a respite care place on others

It's incredibly stressful dealing with all the admin and rules, especially so if your parents are a bit in denial or resistant to help!

From a professional social work viewpoint, you've had great advice already, you're doing the right things and there's nothing I can add. I realise nothing will relieve your stress right now, but be kind to yourselves!

Please don't feel this situation is in any way your fault.

I have so many friends and it's happened in my family too - your parents become more and more frail and simply refuse assistance, or only will accept if it's you doing the assisting. Their expectations of the level of support you can provide are totally unrealistic and your relationship suffers as a result. The situation in their home slows and inexorably deteriorates until that inevitable phone call, usually from a neighbour, you're ill (you have no idea how often this element of the story happens) and can't help at all. Bang - slow car crash has finally hit the wall.

In my direct experience SS have stepped up and helped a lot - so let them. They have the know-how and the contacts to provide a solution. Probably not the one you and your parents want, but that's what happens in an emergency - you don't get choices, you get what you're given.

I've told my DD she's to take no stick from her father and I've told him that I'm moving to a more suitable place for frail old age, that he can come too, but I'll happily go alone if he wants to be daft.

I can't give any more advice than that you've already been given, but you have my utmost sympathy. It's bloody difficult!!

Unfortunately it's on a crisis that seems to get them to agree to anything additional. What I have learnt very quickly, is that you really do need to step back. When was the last time you went round for a cuppa and a chat? If you're anything like me, then you won't actually be able to remember that.

I hope your Dad is ok, and that things are calmer very soon.

Thank you... it's really helping... both the advice and the support.

You are right - every visit is always full of jobs / sorting medication etc, I can't just visit them socially as parents anymore.

My parents both looked after their parents in old age and always said when I was younger that they didn't want me to have to do that - but they seem to forget with age and circumstance and it gradually creeps up on you!

My partner and I don't have any children - we know we will have to put things in place for ourselves and in good time!

I am sorry you are in this nightmare .
I have had similar situations in my family although not complicated by my own illness , you must be so worried .
This is probably your crisis point ,sadly it does seem that the situation has to get to this before you and your family get the help they need.
I think there is good advice being given here but i would like to add mine which is - do not give in to social services , if you give an inch they take a mile.
I was asked to do some really unreasonable things with my family members , your own responsibilities and family dynamics take second place as long as ss can tick a box and move on to the next needy case.
When it comes to this unless you have a bottomless pit of money you will have to compromise with the care your loved ones receive when they a placed in care or carer's come in to the home , but also you are a priority here , you are ill and your needs are paramount too.
I hope things are soon greatly improved for you all .