New and feeling trapped

Hi, I’m new to CUK. Very long post alert!.. I’m 52 single mum with 13 year old son and an accidental and increasingly reluctant carer to my 91 year old father, who moved in with me 10 years ago when I got divorced.

It seemed a sensible at the time as he wanted to help me financially and I wanted to help him practically. Although he was fit and healthy at 81, he wasn’t really caring for his own home that well. He was pretty independent until 5 years ago when he started having falls and was diagnosed with Parkinson’s in late 2015, just as I found out I was being made redundant. As I was able to pay off my mortgage, and had some income from investments and my father, it seemed a no brainer to stay at home, especially as my son was soon to go to secondary school and showing significant signs of attention and focus issues.

I eventually started up a small craft business operating from a garden workshop to keep me sane. My fathers health started to decline more rapidly after several infections and hospital stays, culminating with him breaking his hip last autumn, having complications that kept him in hospital for 2 months, during which his Parkinson’s deteriorated rapidly. He came home at the end of November, unable to get up or walk without a frame and 1 person, catheterised, bowel incontinent, swallowing issues and only allowed soft food and thickened drinks, prone to blood pressure dropping dangerously, on more medications, which he can no longer manage by himself, plus his cognitive health seems to have declined and he doesn’t seem to be able to think sensibly about things (I.e I find him lying in his recliner chair whilst eating snacks when he has swallowing difficulties- I must have told him a hundred times he needs to be upright otherwise he could cause pneumonia or choking ( has happened several times)

Whilst he does now have carers 4 times a day, to get him up wash & dress, do medications, meals & catheter in the middle of the day, and get him ready for bed, I’m prepping all his meals and drinks, giving him his morning meds, as the carers don’t come in early enough, night time meds as they can’t come in late enough, giving him his breakfast and putting his lunch and dinner in the fridge for the carers to microwave and serve, so that I can work, or get out during the day. I’m also managing all his meds, continence aids, disability aids, laundry, cleaning, shopping, admin, dealing with all his health professionals, appointments, closely monitoring his drinking and his health for signs of infection, getting up to him in the night regularly.

It’s got to the stage where I feel totally trapped, as our only other relative is my brother who lives 2 hours away,works full time and has a family of his own. Whilst he does come and stay with dad and work from my house, so we can go on holiday, or weekends away and is on standby if we have any all day events and my dad should start to show signs of illness, it’s such an effort to organise my holidays around my brothers, organise everything to hand over so that he and the carers can cope, on top of the usual packing and organising to go away, it doesn’t feel worth it. Even going out for he day is hampered by getting everything organised for my dad before I go, being back for his evening meds, possibly having to spend the day fatigued because I’ve been woken at all hours the night before and not getting back to sleep, possibly needing to cancel because dad is starting to show signs of confusion and may have a UTI brewing, so testing needs organising + emergency antibiotics, otherwise his confusion leads him to get up unaided and fall. I never get a lie in, I can’t stay out late,

Its affecting my mental health and my physical health and I have no help when I’m ill. Since my dad came out of hospital I’ve had a nasty bout of bronchitis and just recently flu ( despite flu jabs) and I’ve had to drag myself out of bed in the nights, when he’s needed me and out of bed at 7am to do the normal routine, whilst trying not to infect my father & son, as well as look after my son and run out home, try to run my business.

I feel my business can’t progress because I constantly have to put my dads needs first, I’m missing quality time with my son, who won’t want to do much with me for much longer. I do try get out to exercise classes and see friends when my dads needs or my health dont get in the way, but I’m getting depressed and the answer doesn’t lie in medications or counselling, it lies in not having to look after my father. This feels awful as he’s a lovely man who has always put others first and never complains, so I don’t want to give up on him and abandon him at this time in his life, but not sure if I can cope much longer.

Sorry for long rant, I’m just offloading I guess, but if anyone has and magic solutions…O K, maybe any practical tips for getting through this and not going mad I’d really appreciate them!

Hi Lisa … welcome to the canteen.

No need to apologise for " Ranting " … be surprising if new members did not rant … ranting / growling … all part
of daily life in OUR world , CarerLand … now smiling , almost a hanging offence ?

Extremely quiet on the forum as I type.

Okay , having used my laser beams to zoom in , just some initial observations and questions :

Benefit / allowancesALL currently being claimed ? … including Attendance Allowance for your father ?

Online Benefits Calculator for that financial m.o.t. :

Craft business … registered as such with the TaxMan … any effects on the benefits currently being claimed ?

Universal Credit … a factor ?

Housing … father living with you ?

As a guest / paying rent ?

I have in mind the thorny issue of " Dreprevation of Assets ( DoA ) " IF a care home was an option down the line.

Potential Council Tax disregard / discount … I’ll post links if needed.

Father’s own house … sold ? … again , potential DoA issue ?

Needs / Carer assessments … upto date through your local LA ?

( If not , just ask and I will post links to guidance on both. )

Written care plan … received ? … upto date … any problems with support delivery ?

Direct Payments … received … employer / employee ?

CHC / NHS Continuing Healthcare / NHS Nursing Funded Care ?

New words … pondered on / applied for / in course / rejected … even mentioned by anyone ?

There’s a couple more I could mention ( Power of Attorney / wills ) but … enough for now ?

Have a ponder … zero in on any one or more of the basics … and feel free to bounce anything off us here on the forum.

Hi Chris

Thank you for your reply and all your thoughts/ideas.

I think I’m there with tax and benefits. The craft business is registered for tax, I did run through Entitled To some time ago and I am currently claiming Child Tax Credits for my son and carers allowance.

My father lives with me and is paying rent which is declared to Carers allowance, tax office, tax credits, as is my fathers ‘family care payment’ to me. We don’t have direct payments, we have no employment contract, or set hours and it covers anything and everything outside of the local authority care provided. It was what he felt was affordable and reasonable is a fraction of paying commercially for what I provide.

My father doesn’t have an NHS CHC. The care that I don’t provide comes from a care agency, via the local authority and is partially funded by them, because they have now taken into account his family care payment to me in his financial assessment, after a bit of wrangling. I’ll have a look into the CHC though, thank you, as I’m not sure of the circumstances. I thought they would only apply to those with more complex health needs.

My father receives attendance allowance and has a new needs assessment after he came out of hospital. He does have a new care plan which was discussed with me by social services and occupational health, but I haven’t seen it. There are often problems with delivery, but I just keep a watching eye over things, and try to put measures in place so that nothing goes drastically wrong!

I don’t have a carer assessment. Its never been suggested, but I will look into that thanks, as I’m quite worried that I may get some illness where I can’t drag my self out of bed and carry on, so where will that leave my father (and son)?

My father appointed my brother and I as his attorneys last year and he doesn’t have a will.

We have recently thought about deprivation of assets, as my dad sold his home and gifted me and my brother the equity 10 years ago. I used my payment to buy a home after I divorced and to build on a ground floor extension to accomodate my father. However my father did this when he was fit and healthy, with no signs of Parkinson’s or any other health issue. We can only hope that the law is on his and our side, because how can you prove that someone deliberately deprived himself assets to avoid paying for a care home, when he had no need, thought or intention of living in one! I’m sort of past worrying about it at this point, because I can’t really do anything about it now. Except sell up and flee the country…now there’s a thought :joy::joy::joy:. That’s given me a laugh at any rate!

Your welcome , Lisa.

because they have now taken into account his family care payment to me in his financial assessment after a bit
of wrangling.

Thankfully , no direct payments !

I can rest a bit easier … not another one walking through that minefield !

Mmmm … CHC / NHS Continuing Healthcare … definately worth looking into … if I add the word FREE , would that spark
your curiosity … can be at home ( Pointon ) ?

Anything we can help you with beyond what you have already mentioned ?

Thank you for your very quick reply, I was just editing my reply to say I would look into CHCs to improve my understanding, but you got there first! Thanks for the link I will read up.

So glad we seem to have escaped the dreaded direct payments!

I think the main thing I’m struggling with is the impact on my life and staying sane when trying to cope with all this on my own and feeling like I want to run for the hills, which isn’t an really option. Also where to turn if I’m suddenly taken ill and not able to provide care.

Thanks again

Your welcome , again … not many beat me to the draw … even at my age !

Pleased I could be of assitance to a fellow carer.

Others WLL be along … eventually … and concentrate on that age old " Morale boosting side "
of caring … in CarerLand ?

Thoughts of … " What if I’m no longer around … ? " … part and parcel of many such thoughts in our world.

Each one of us have their own unique way of dealing with them.

( As for me , the face that leered back at me from a mirror … I call it the " Bootstraps job ." )