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New carer tiptoes in - Carers UK Forum

New carer tiptoes in

Tell us a bit about yourself here.
Hi, thought I'd just introduce myself, just found the site today, and joined.
I care for my mum, 6 days a week in general. She is 89, with heart failure, and various other medical issues. As a sideline, one I never really thought of as "caring" before, and kind of is & isnt, my partner is unable to work, or manage too much alone, if it involves social contacts, even phone answering, so I have responsibility in full for our income and wellbeing.
We live on a narrowboat half an hours drive from mums, so he is home alone while I'm there, and very isolated...I might expand on his health issues another time.....so I'm always torn where to be when. I've lost any outside life over the last few months as this has crept up on me.
We live on my carers allowance only.
I used to have a good business so was happily able to support us, and loved the work...that's gone now though, but that's another long story.
I recently hurt my back and was told I have degenerative discs...not helpful!
Anyway, that's me in a very brief nutshell so far!
Hello! :)
Hello Alison and welcome our Forum. Here you can share, vent and / or pick brains and experiences for things to support or help. It does sound like you have two people to care for in different ways.... tough! Hope the Forum is a help to you. :)
Hi and a warm welcome to the forum. :)
Welcome, Alison. Sounds as if you have a lot on your hands.

It may also be worth clicking on help and advice red tab before and asking Carers UK Helpline benefits advice. Difficult to get through on the phone but they do reply by email. They can provide confidential advice and check that you are getting all the benefits you are entitled to.

Anyway, welcome, I think many of us know that feeling about being pulled between different people. If only we could clone ourselves ....

Anne x
Hi Alison, welcome to the forum. Has mum had a Needs Assessment from Social Services, and you a Carers Assessment? If they could arrange some help for mum then it would make life a lot easier for you. It wouldn't necessarily mean you lost your Carers Assessment. Are you receiving ESA or similar?
bowlingbun wrote:Hi Alison, welcome to the forum. Has mum had a Needs Assessment from Social Services, and you a Carers Assessment? If they could arrange some help for mum then it would make life a lot easier for you. It wouldn't necessarily mean you lost your Carers Assessment. Are you receiving ESA or similar?
She gets attendance allowance, and had input twice a day for 5 weeks after discharge, but was told she'd have to pay after that, so has relied on me since. I think she would be over the savings threshold probably. (Not sure of her total finances) I've had no assessment and we literally just have my carers allowance coming in. I have a small amount of savings which helps though. Luckily boat dwelling is a bit cheaper than a house, and I own my boat outright so that helps. It has meant we've had to take a permanent mooring though, so that's a new cost.

Thanks for the welcome.
Alison, if mum has been assessed as needing help, and she has over the savings threshold, then mum should be paying you to the going rate for the care you provide! What's she saving for?
If she goes into residential care at £1,000 per week all her money will be gone, and when she dies there might be nothing left for you as a thanks for all your work, that is why it's crucial that she pays you. I'm dismayed that she hasn't offered, as she must be aware of your financial position.
The going rate for care in my area is between £10 and £15 per hour. Has mum signed a power of attorney in your favour? My mum was housebound for many years and I dealt with all her financial business on her behalf, with a POA. She broke her leg, nearly had it amputated, and spent 6 months in hospital. She had bills which needed paying and in the end signed her POA whilst in hospital. Had she had a stroke or similar it would have created endless problems without the POA>
Perhaps this is time for you (or someone else she trusts) to have a conversation about her future and the money matters? Are you an only child?
Hi Alison
There'll be plenty of support and advice on here re Mum but I am concerned about hubbys situation.
Here 2 websites to start looking at
http://www.mind.org.uk/information-supp ... eone-else/

Alison, I don't think your position is sustainable. Even if money were not a problem, you'd still be torn in two by two 'helpless' people.

I suspect the time has come for 'serious decisions' about the future.

Why did you have to give up your business? Was it to care for your mum? In which case, that is the first problem to solve. As BB says, your mum either has to pay you, or pay a professional, or go into a care home if she is eligible for council-funded care (or self-pay until she is!)(as my MIL with dementia is doing!).

If you compared, say, taking her attendance allowance money, and your carers allowance money, would they combined make as much, more, or less than what you were making when you ran your own business? I think that's the first sum to be done!

Second, you say you are boosting your 'income' by raiding your savings. Well, how long can that continue? ie, what is the rate of depletion?

What are your living costs - including, say, the mooring, etc. Plus, what are the costs involved in caring for your mum - eg, petrol for the car/train/bus fares, whatever.

I'm concerned about your partner. His life seems to be, sadly, 'a mess', and he's making it worse with his burgeoning alcohol addiction....

Is he claiming any 'out-of-work' benefits did you say, and if not, why not? Is he having any treatment - whethter pills or counselling - for both his anxiety/alcohol problems? Or is he just 'hiding' (and, I could add, 'hiding behind your skirts'.)

If you look at the Mental Health section of the forum you'll see quite a lot of posts about how best to cope with 'helpless' partners/parents who have MH issues. One of the key problems facing carers is how to ensure they are 'supporting' the MH person, but NOT 'enabling' them'. If what YOU do simply 'enables' your partner to go on 'hiding' from his problems, instead of taking steps to tackle - and eventually cure - them (and so become a fully functioning human being again!), then you are not, sadly, helping him at all.

The key point about 'supporting' someone is that you MOVE THEM FORWARD. You don't 'keep them where they are' (and where they 'want' to be as they are paralysed by fear to move forward, out of their tiny little 'safe' zone)

But, overall, I suspect that even if you have been able to 'carry' your partner so far, now that your mum has 'landed' on you as well, that you will, quite frankly, break at some point. And that will be no help to either of them - least of all yourself!

So that's why I say that some 'tough' decisions are ahead of you now, to 'manage down' the care load on you, and make it more sustainable. Your mum, sadly, can only 'cure' her situation (which is infirm old age) in the way that Nature always does, but for your partner, surely, he can't 'give up' on life the way he seems to be doing. (He's clearly got strengths and talents - you say elsewhere I think that he can sail the narrow boat and do all sorts of things - except deal with other human beings!) (is there any element of ASD by the way in his make up? That makes 'other people' very 'formidable' to him?? Just a thought!)

Wishing you a lot better, but sadly, I think the time has come for you to be stronger than you want to be, and take the decisions about both the people you love, that is for their long-term betterment.

Kind wishes, Jenny
Phew! That's given me a lot to think about Jenny! Yes, I suppose I have been enabling him. He doesn't claim anything, nor has done for about 6-7 years, as facing doing it puts him into panic, as does the thought of the gp etc. I only got him there once, he was given beta blockers once, and won't go back. His father has had mental health issues since he can remember, and he is horrified to have similar. So he's just gone inward. He was ok till he was in a particular work situation (computer programmer ) and then being let go confounded it. We got a dog, both for company for him, and to force him to get outside, which was a good move, and worked to get him out. He's a very capable man in what he knows and can deal with, and very intelligent, but lost his confidence completely. In many ways he cares for me, keeps the boat going, did cruise and I'd just find wherever he was after work each time, makes our bread, chops the wood etc etc, and very good at techy things....all so long as he is boat based. I don't really see myself as hid "carer", but I think now I'm caring for mum, it's become more of an issue.
My (our) income is way less than from the business...We built new narrowboats, my brother in law and i, I took a reasonable lump sum on each sale twice a year. Mum gives me diesel money as it's about 35 miles a day for me, plus transporting her wherever, appointments etc. The mooring added £1000 to our annual expenses. The licence is almost as much. But we manage to food shop for about £25 a week except for dog kibble. We make our own power with solar, plus genny use sometimes in winter. Water is just the cost of a bit of diesel to cruise to the water point. But of course there are insurances, car expenses , vets, dentist, etc. No, it's not sustainable. I know.
Talking to my partner about his issues is nigh on impossible, he just disappears into a silent man cave, and I get nowhere. I spend wakeful hours fretting about him, and our situation, and the future. I know if we came to blows about it, he'd end up sleeping rough. He makes home brew so we don't actually have to buy alcohol, and in fairness, no one else would ever recognise he was under the influence, he's very together with it. Having suffered at the hands of an abusive drinker previously, we wouldn't be together if he didn't handle alcohol. He was alcoholic (and knows it) before I even knew him. But he's not a talker. He hasn't maintained friendships, and has given up on most interests except our dog, the boat, and computer based stuff.
But mum is the one who most needs support now. We nearly lost her last year. She's 89, as active as she can be, still very interested and alert, but just not as able as we all would wish to be, and going downhill again currently, as is inevitable with her age and conditions. My sister won't hear of her not being cared for at home, and she herself doesn't want "strangers" in her house.

Rock....hard place.....