Overwhelmed Newbie Alert

Hi there

I’m at the stapling jelly to a tree stage…

My father (86) was living independently and coping okay… (not to the standard I would have liked but he’s very much his own person!) He has multiple health issues - Parkinsons (not too advanced), vascular disease leading to complicated heart surgeries & multiple bypass grafts on legs, chronic kidney disease, diabetes, & is very deaf (with ongoing hearing aid issues & ear infections). In the last 6 weeks he has totally lost his sight, been in hospital for 25 days, but is now home and has a temp live in carer while they assess how much he can manage. After this care finishes (24 days left) he will have to start paying as he has more than the threshold for help from social care. I’ve spent the last 6 weeks on the phone and / or the internet looking at every possible scenario (as he has gone from not looking like he’d make it through the week to getting about his home fairly well). I’m now thinking that the best thing for him (which he agrees with), is for me to be the main carer for him in his home (but I live 45 mins away), supported by my brother (notoriously chaotic and unreliable) with potentially some cover for weekends. How we manage this financially is making my head explode! I haven’t slept more than 2 hours a night since this started. I just keep going around in circles with employment issues, carers allowance, income tax, dispersal of assets, negotiating with my brother, agency fees, and eleventy billion websites offering help & advice on the minutiae of every aspect that could potentially be involved!

PLEASE someone, tell me it gets better!!

LJ x

I’ll start by saying “Don’t do it!”
I have supported all four elderly parents. My lovely husband died of a massive heart attack in his sleep at the age of 58, soon after his dad. I will always believe that supporting his parents was a major factor.
First, let the assessment phase reach the end, and Social Services must arrange and continue to provide care, and then sort out who pays separately. Dad is going to need increasingly more care until he dies, making you an increasing prisoner, ruining your life in the process. A friend of mine cared for his mum until she was 105, by which time he was too old to realise his retirement dreams.
Let your role be that of care monitor, make sure dad is well cared for at home, but by others.
Then you can spend time with him as father and son. My mum spent her last year in residential care, after 30 years of increasing caring I cherish the time when we were just mother and daughter again, talking about old times.
Does dad own his home?
Claim Attendance Allowance?
Is he mentally OK?

Second to say Don’t do it!!
As has been said, coordinate/organise and do not do it all yourself.
I’m now thinking that the best thing for him (which he agrees with), is for me to be the main carer for him in his home This is not the best thing for either of you.
It’s far easier to have help at home by other agencies.
Your life will change dramatically and you might live to regret this decision.
There should be a carers group where you live.
There organisations have years of experience and many co-ordinates have be or are still carers. They know as we do on the forum. Who have experience and knowledge of what it’s like to be a carer.

PLEASE someone, tell me it gets better!!

It wont get better if you take it on without support.
There are caveats to benefits - example below.

I’m so sorry, I didn’t make myself clear yesterday. I blame the lack of sleep! I wouldn’t be living with him - I have 2 children (12 and 15) who are both neuro-divergent (as am I, my brother, and my Dad! My poor husband is allegedly the only neurotypical in the family!) I live about 45 minutes away (thanks to 2 years of road works with another 2 to go probably). I’m hoping to go in from say 9-3 although this will need to be flexible as he has so many appointments. I’m hoping my brother can do an evening shift to give him his meal, shower, and get ready for bed. We’ll probably have to arrange care for weekends or perhaps a week day so I can do one of the weekend days.

When he came out of hospital he was SO weak that I thought the only option was a care home. We’d considered him living with us (with some adaptations) while he was still manageable for us as a family. He came to us for a few hours out of the hospital on Christmas Day but told the nurses he believed he was already too much for us to cope with (I disagreed). However, now that he is being properly looked after (so is eating, drinking and moving around a lot more), he has already improved so much in his strength and mobility. It’s looking like he will be able to manage getting to the loo in the night but we’ll have to revisit the medic alert system as his pendants kept breaking so he stopped wearing them. Not having to have care overnight will make things so much easier (and cheaper). Mentally he’s okay but he needs an assessment from the memory clinic because I’m noticing a deterioration & his assessment 3 years ago picked up “cognitive issues”. He has suffered vascular issues in his heart, legs and now his eyes (which has caused the blindness) so I’m guessing we may well have vascular dementia in the mix but they can’t do an MRI because of his pacemaker.

He lives in his own house which he owns half of due to a ‘tenant in common’ situation. His partner died 10 years ago so her half is now owned by her family and they are circling like vultures. If he dies, goes into a care home, or moves in a partner or lodger, we have 28 days before they are allowed access. On the plus side, if he does need to go into care at a later point, they are unlikely to be able to use the value of 1/2 of the house as an asset, depending on whether they take the value from the point where he is still in it or not.

As far as paying for care now goes, he recently sold a good car so is well over the limit for social care. He gets the lower rate of Attendance Allowance and other than an extra £2500 on his personal tax allowance, I can’t see any other benefits that relate to him being blind. He already gets a 50% council tax discount for living alone and a free TV licence for being over 75.

My head is spinning with how to organise paying myself and my brother for his care. Neither of us can do full time care for the rate of carer’s allowance as we wouldn’t be able to work elsewhere. If he tops us up with cash then we can’t show that his spending is necessary and therefore not a dispersal of assets, also we’d get in trouble for not declaring our earnings. I’m managing all his finances (as best as I can while we wait for POA to go through) so I would be the one acting as the employer on his behalf - but can I employ myself? Can I employ my brother? Can we effectively become self employed? Can we still claim for our stamps in any of these situations? I think my head will explode!

Sorry this is so long!

I think a call to the Carers UK help line and/or a call/visit Citizens Advice.

Yes, dad CAN pay you to care for him.
The Office of the Public Guardian has written a leaflet on the subject, be sure to download it, read it carefully, and share with your sibling.
If dad has been diagnosed with dementia or “cognitive impairment” it’s possible for him to be exempt from Council Tax due to “Severe Mental Impairment”. Easy to claim, ask the council for a form.

Thanks, that’s really helpful. I didn’t think his mild cognitive impairment would count as he still has full capacity, he’s just a bit confused sometimes and his short term memory is poor. I’m really hoping the memory clinic can see him soon so we can get an accurate picture going forwards.

I’ll get onto the Office of the Public Guardian now - thanks so much!

I’m not sure about the vultures circling scenario.
Have you spoken to a solicitor about this?

The vultures are his partners family - she died very suddenly and unexpectedly 10 years ago and they’ve been waiting for my Dad to give up the house since then. At the time they cleared him out of a lot of their furniture and belongings saying it had belonged to her and he was too grief stricken to fight it, even though his solicitor and I tried to convince him. As it stands, if he moved a new partner in, goes into care, moves house or dies, they have 28 days for us to clear his stuff out before they are legally allowed entry.

I contacted his solicitor before Christmas (after several attempts) and he said he’d have a think over the festive period and get in touch in the New Year to make an appointment. I’ve left messages since Tuesday but not heard anything back. Like everything at the moment, nothing happens quickly. Both of my dad’s banks can’t see us until end of Jan for one and end of Feb for the other to give me third party access. We had intended to get a POA going but life just got in the way and now we can’t do it without a solicitor because of the extra considerations needed now that Dad can’t see what he’s signing, or indeed, physically sign it (we tried getting him to sign something at the bank and he ended up scrawling on my hand and across the desk!).

The solicitor mentioned Simple POA which can work in the interim because proper POAs are taking 6 months to register. The Office of the Public Guardian sent me back to the POA pages as he has capacity.