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New to group and have terrible dilemma - Carers UK Forum

New to group and have terrible dilemma

Tell us a bit about yourself here.

My elderly uncle was recently given a terminal prognosis, he has never married or had children and he didn't keep in touch with the family for more than 20 years, my mother died and i tracked him down via the Electrol role, there was no fall out they were both just getting on with their lives. That was 3 years ago and It was obvious he was lonely all his friends had passed on so I started to visit him every week ( he lives 50 miles away and I dont drive) he is very independent and fit and trim for a man in his 80s and very much sharp of mind.
He has asked me to look after him and be there for him at this difficult time and I can be, I work freelance and can take periods out but I have already had a break of 5 months since my last position and while I have some savings I can't really manage for more than a few more months.
I don't want to let my uncle down in his time of need but I also can't take time out of work indefinitely. I hate that it comes down to money and I really don't know what to do. I wonder if anyone else has been in a position where they are caring for someone but need to work too?
The rest of the family are not interested in helping and the other problem I have is my work takes me abroad for anything from 2 months to 5 months at a time. Sorry to go on a bit just trying to give a picture of my situation.
Dear Deborah

Welcome to the forum. 'Terrible dilemmas' are pretty commonplace, alas, when it comes to caring, so you are not alone, believe me (not sure if that's comforting or not!)

Yes, it can sound 'venal' to worry about money, but in the end, an AWFUL lot of the stress of caring does come down to pound signs....lack of! All too often caring is actually a 'full time job'.....but unpaid!

OK, lets see what the situation is. First off, am I right in thinking the terminal diagnosis is cancer? Sorry to make assumptions, but that's usually the case. Even so, whatever is the cause of his diagnosis, maybe the first thing to get a feel for is the dread question 'how long?'

Cancer (if it is cancer) has a timeline of its own, and is very often highly individual, and all the docs can really do is say 'at this stage, with these co-morbidities etc, the stats show a life expectancy of around xxx'. Some patients 'beat the stats' and last a lot longer, some don't and die sooner.

Putting it bluntly, ALL cancer that is 'stage IV' (metastatic - ie, the original tumour has shed cancer cells into the blood stream, which then 'nest' in places like the lungs, liver, brain and bones, and start growing into secondary tumours) is considered 'terminal' (because it's incurable)(treatable, reducable, but at the moment still doggedly incurable....)(though new drugs are starting to change that, and significantly extend lifespans)

Some primaries (original tumour) may also be considered terminal maybe - eg, a primary brain tumour, primary lung tumour - because they are in organs that are vital to life. Secondaries usually 'nest' in such places, and therefore threaten life support.

BUT, people with metastatic cancers CAN survive really quite a long time - in the order of years, not just months. It all depends on the type of primary, the position of the secondaries (called 'mets' for short) (eg, brain mets are particularly dangerous for obvious reasons!), and the aggressiveness of the individual tumours, and, too, on the general state of heath of the patient anyway (co-morbidities).

So, being given a terminal diagnosis is not necessarily straightforward, which means your uncle's oncologist has to give a 'likely statistical range'. Do you know what that is? Is it less than a year, less than six months, etc?

It may sound harsh, but knowing what that is really will determine your decisions now. For so many of us, especially those, like me, whose caree is a very elderly person (my 91 y/o MIL with dementia), it's almost impossible to put any kind of timeline on longevity, and that uncertainy makes our decisions extremely hard - hence the terrible dilemmas. For instance, if I knew FOR CERTAIN that my MIL would not see the year out, then she would be with me, cossetted and cared for, in my home, as I know she would like to be....but because she is otherwise healthy apart from her dementia, she could last till she's a hundred or more! And so that's why she's in a home.... :(

The second consideration is what is your uncle's own financial situation? As you probably know, until someone's funds (property, savings) are down to £23k, all care has to be self funding - UNLESS he can be classed as being eligible for NHS Continuing Health Care, in which case his care may be paid for (but not necessarily in his own home? I don't know any more than this - but lots of folk here do!!!)

Putting it bluntly again, could he pay you for the care he needs to 'see him out'? If he can't, then if he isn't eligible for CHC, he should be eligible for local authority care - others here will tell you all about Needs Assessements and Carers Allowance and any other possible benefits. (He mustn't be too proud to take them - they're his right, he's paid taxes all his life)(unlike a lot of folk who get benefits!!!!!).

If he were able to pay you, and did so, is it possible for you to take a career break until the end (which is why I asked about prognosis), or do you have mortgage committments, or you would lose your contacts and future employment etc etc?

If he were able to pay you, how much would that need to be to not jeopardise your own financial position for the time when he is gone? I take it you would move in with him, and what would happen to where you live (rent, mortgage etc etc).

I agree it's a 'sensitive' issue, but in the end, you cannot be 'out of pocket' (let alone financially ruined or your career in tatters) in order to stick with him till the end.

One other possibility, of course, is that you become a legatee of his will - but bear in mind if he's compos mentes he could potentially change it at any time, or other rival relatives might contest possibly about 'undue influence' (you say other relatives don't care - but they may suddenly appear in droves when the will is read!!!!!!)

I hope others will be here soon and have some suggestions about how best to handle this very sensitive subject. Do you think your uncle has realised on his own that he can't expect you to jeopardise your own financial situation, however much you may want to look after him?

Bottom line, it's great that you have 'found each other' and I do hope that you can get as many 'family memories' from him, while he is alive, which both of you, I'm sure, would find comforting.

Kind regards for now, Jenny
Hello Deborah and welcome to the forum :)

I think you would find it helpful to contact the Carers UK Adviceline for a benefits check for both yourself and your Uncle. They can check that you are both claiming for any benefits you are entitled to -
Need expert advice? You can talk to the Carers UK Adviceline five days a week, no matter where you are in the UK or how complex your query is. We do benefits checks and advise on financial and practical matters related to caring.

0808 808 7777
Open Monday to Friday, 10am to 4pm
It's usually better to email them as the telephone lines are frequently oversubscribed !

You should also contact your local Social Services Department and ask for a 'needs' assessment for your Uncle and a Carer's assessment for yourself. They will be able to provide information about what support and services are available to both of you in your area. Some services may carry a charge but how much will depend on how much your Uncle has in savings (his money, NOT yours !).
If your uncle is terminally ill, he should be eligible for palliative care, at least for a few months. I know it can be difficult - I agree with Jenny that you shouldn't be out of pocket with looking after someone. Have you contacted his GP to find out what you can both get in benefits?
Thank you so much for your replies.
My uncle hasn't been given a prognosis yet, that will be on Tuesday when we get the results of the broncoscopy and bloods. We were shown his CT scan he has a tumour of just over 5cm on his left lung behind the heart. Was no initial signs that it had spread.
He also is Asmatic but it's Been well controlled for may years but he was retired from the merchant macy due to this .
He is 80 on Friday.

He owns his own one bed flat it's clean and tidy but lacks heating ( it's an old terrace house split in 2) it's deprived area so I can't imagine its value will be very high. He does have savings and money in bonds etc, so while not a wealthy man he has assests in excess of the amount mentioned.

I rent my house from a private landlord, I am pretty sure the other family members won't be interested but you can never be completely sure, but he has said once he knows his prognosis he will make his will and does not want anyone else to know until he has his affairs in order.
The most practical solution would be he comes to stay with me and he would consider this, if I had to go back to work my grown up children could come and see him on assist basis
I have a modern 3 bed house with heating washing machine ( he doesn't have one and I do his laundry and take it back on my next visit.
The problem with this would be that it's a different council and Heath authority and not idea what impact that would have.
I guess once we have the prognosis then we can start to build up a plan. Sorry if this is a bit all over the place.
I really appreciate the info given as there are things I had not even thought about. But both the GP And the consultants manner when talking about the condition was one of concern rather than well things can be done, I feel it's their way of get us to accept the condition and be ready to prepare for the difficult time ahead.
I suggest that you try and work out the pros and cons of the situation, before making any commitments.

Firstly, what do you know about caring for people who are dying? It's not an easy job, and incontinence may well be an issue, caring 24/7, maybe nursing someone who is bedbound?
If you don't want to do this, then you will either need someone to help you, or uncle will need a nursing home bed at some stage.

This is the most important question of all. It's really, really tough, even when there are family members taking turns.

Only once you've decided the answer to this, can you move onto the financial matters affecting you both.

Uncle needs to have a will and a Power of Attorney in place. Don't agree to anything until this has been done. There can be endless arguments about money, even when the situation is clear.
Thank you for your reply.

I worked in care homes for a few years about 15 years ago and I also helped nurse my father in law who also had lung cancer he was adamant at the end that he did not want to die in hospital, so I arranged for everything to be in place so his wishes could be met. From being diagnosed to passing away it was one year, and apart from when he had chemo he was home until the last couple of week when he had a down turn, when took in hospital they told him he had a week at most, so he was very clear he wanted to go home to die, it was difficult but with he help of the nurses from local hospice we coped. Also was with my mum at the end who also had a lung disease so I am aware of what it's going to be like but also aware not all cases are the same.
It will be me and my children the rest of the family didn't maintain a connection with him after mum passed and I know them well enough that they are not in the slightest bit interested in anything he may have. I guess we go tuesday see what consultant says and take it from there. I just want to make his time comfortable and for him to know he is loved and cared for.
That's good, you are clearly in a position to do what is required.

So next question to be considered, is the money side of things. Does he have savings over £23,000? If the answer to this is "Yes" then Social Services won't help until they fall below this level. So make sure he pays you for the care you give. He is also allowed to spend money over the £23,000 on essential things without the SSD financial assessors raising the subject of "Deprivation of Capital". Are you aware of NHS Continuing Healthcare?
It was very easy when the father in law passed, he lived in local authority housing and his savings were under the threshold so that saved us a lot of stress. My dad is still living so again nothing for me to deal with there.
My uncles property I would guess is worth around 25 thousand then he has money in savings a pensioner bond that I helped him sort out a couple of years ago and another saving plan he mentioned the other day but I have no idea what that amount is, but can confirm he's over the threshold.
He was talking about getting it spent and enjoying what he can while he can, but would be be able to do this with a terminal prognosis? Or would they freeze his money to pay for care? I really don't have any idea or him for that matter how any of this works.
If he needs care in his own home, the value of the home won't be taken into consideration when Social Services are doing an assessment. It's only considered should he need residential care. Moving at this stage could be a nightmare, and if he released his capital then he'd just have to spend it on his care anyhow.
He really needs to gather all his financial information together in one place now, and work out exactly what he has - SSD will need it at some stage anyhow, if they are asked to provide help and support.
Consider sharing the care with SSD, as you have family of your own, and can't work 24/7.