Overwhelmed and exhausted

[JinglingGin]

Not really looking for advice - just need to offload and share some misery… DM has very complex care needs - end stage neurological disease. DF looks after her at home with carers and help from me but on Friday I had to take him to A&E with breathing difficulties- he’s now on a cardiac ward with suspected heart failure. Also because of CHC nonsense the care company is pulling out and a new one is meant to start on Monday with carers that don’t know DM at all. I’ve been desperately reassuring dad that it’ll all be ok that ‘I’m on it’ but I’m not - I’m totally overwhelmed and have no idea how we’ll manage going forward. Parents aren’t even that old - in their late 60s it just all feels very shit.

I'm really sorry to hear that
I particularly hate that thing of having to reassure when you are struggling

you say you don't need practical advice so I will just say- hugs if you want them. 💐

Can you not choose your own carers with CHC?

We were grateful, after many years, to have our DC at age 42. Our parents weren't able to look after them in the usual way most younger ones seem to, so a couple of hours as babies and when toddlers not at all.

We /I had to change work to accommodate this. So nursery/ wrap around care the days I worked, which were often full weeks, then went part time.

You just have to create what works for you and not expect others to do childminding, it's a luxury! Xx

Could be wrong thread? But since you've posted I don't think it's usual to look after GC as younger GP are working themselves - retirement age now 67.

God what a stressful situation. Are you having to step in right now? Just a hug. One hour at a time. The new carers will settle in and things won't look quite so bleak.

Thanks everyone for your posts. @Beautifulweeds i think you’ve missunderstood. My parents are dying, it’s shit. I’m not complying that they won’t help me with childcare - I’m sad that they are dying and I’m exhausted managing looking after them.

So sorry to read this, have you got anyone to support you? When my mum was needing care last year I was lucky enough to be able to live with my parents and drop my work hours down to make it manageable. Can you do something like that?

Pause several times a day to do deep breaths, it really helps to keep going, apparently it lowers stress responses.

To a certain extent but CHC have said our current carers are not meeting mums needs (which is true they keep cancelling visits) so have pulled the plug on them and appointed a new company - I told CHC that we wanted to keep the live in carer from current company as she knows DM really well but they’ve pulled the whole contract so new live in carer from Monday with no handover time. I’m going to have to take the week off work to settle in a new carer which is ok I guess but I really hope they are good and can pick it up quickly as I can’t manage looking after dad, training them, working and usual family stuff (I’ve got two young kids) indefinitely. My DH has been great and has basically been picking up all the slack at home so I can focus on DP but he has a demanding job and his own health problems…. Just feels a bit bleak.

So sorry @JinglingGin sending love and praying that the new carers will be lovely

I'm so sorry and hope you can get some help with it all. Please accept my apologies, I didn't realise or intend to sound insensitive. Sending a huge hug, you have so much to deal with. Xx

@JinglingGin So sorry to hear that you are having all this stress. I am in a similar position, FIL was discharged from hospital and NHS put in a crisis care package, replacing his wonderful, usual care company. We were trying to sort it all out when he was readmitted. He's now due to be discharged again and will need 24 hour care and we are trying to get CHC put in place but thought we could choose our own carers (even if we had to "top up" the payments). The whole system is so complicated, some of these carers provided by NHS only stay a few minutes, haven't given him his medication, got him out of bed, turned up to feed him etc and because he can no longer talk we don't know what has and hasn't been done. I totally sympathise with you, it's so stressful.

@JinglingGin Also wanted to say I'm so sorry for you facing losing your parents at such a young age (late 60s), I lost my own dad at 64 and was absolutely heartbroken, he never even saw my son. FIL is 92 and it's easier to accept he is dying. Wishing you strength and courage at this really difficult time x

Yes, I naively thought once care was sorted and CHC agreed funding I’d be able to ‘sit back’ and spend quality time with my dying mother. It’s been over a year now and I’m constantly fighting the ‘care battle’. It’s exhausting and feels really unfair to have such an emotionally difficult time made so much worse because of bureaucracy and funding limits. On the plus side I’ve learnt all kinds of things about the care system so when I eventually get sacked from my current job because all of the time off I’m needing I can get a job in the care sector!