Carer for dad and feel unappreciated

Hi all,

New to Carers UK. I’m just getting to the point where I’ve had enough. I find what is happening very unfair and stressful. I’ve been caring for my dad for about 1 year, he has pancreatic cancer. Since he was diagnosed I have been chasing up medical teams to get him the right treatment (at the start there were communication problems and his treatment was delayed), sorting out his medications, etc and am his main carer. I sacrificed my life and career to do this. And I wanted to and would always do this for him rather than put my job first. Since lockdown he needed more help and I have now moved out of my flat because i can work remotely, moved to his house in a different area, and still my work has been interrupted, at times so stressful I wonder how I can manage working full time. 2 siblings came to help after I asked them, but neither will stay for long and now it’s me on my own again. One of my siblings is training for a marathon and doing an extra course at work, so basically furthering her career and pursuing other interests, whilst I would never think of doing that, as I always put my dad before work. I’ve missed out on promotion and pay rises. My dad, he may not have long to live but we just don’t know. The thing that really bothers me is that whenever I have mentioned that my work is suffering he just says ‘oh don’t let me stop you doing your work’. I feel that he doesn’t want to face the fact that I am sacrificing so much for him. My sister has said now that she won’t come back to help even if he gets worse, and she’d rather pay for a carer. I feel very angry at the whole situation because my life is on hold and I’m not appreciated. My dad is giving everything (all inheritance) to my mum, who is not caring for him as they’ve been separated for years and also she cares for her mum who has dementia. But my mum and dad are still married and friends. He then intends the inheritance to be split equally between me and my siblings. Seems very unfair when I’m the one doing all of the work, I don’t have my own house and also when he dies my mum will sell his house and I’ll have to move out. Thanks for reading and any advice would be appreciated.

Hi Katherine, This does sound very unfair. No wonder you’re fed up!
Have you spoken to your dad about your situation?? If not then that is the first thing to do. Basically you have been too good! Katherine you need to get tough here, for your own sake. Please start thinking about yourself. It seems wrong that you have had to leave your home so that you can care for your dad and will consequently be homeless when he dies.
You need to spell it out to your dad that you are worried about your future.Tell him what you’ve told us including your work situation. Also you don’t know how long you’ll be caring for your dad and if his condition worsens he will need more care.
In my opinion your dad should update his will so that you are given a substantial amount of the inheritance when he passes on, NOT all to your mum.

Unfortunately as cancer spreads it may affect intellectual capacity. I certainly saw this with dad, a top government scientist. If dad wants you to care for him, he should give you a share of his house as you gave up your flat. Is he helping you financially claiming Attendance Allowance. Do you know about NHS Continuing healthcare? Have power of attorney? Considered final arrangements?

Hi Karen, thanks for taking the time to respond to my post. I tried to sum up the situation as best as possible, and I wanted to get an outside opinion on it so thank you for that. It’s easy to get too caught up when you’re in a situation I think. I haven’t spoken to my dad; I will do that this week. It is good to have an outside opinion to confirm my thoughts of the unfairness of the situation.

Hi, thank you for taking the time to reply. I think my dad’s intellectual capacity currently is not majorly affected. For one month since I’ve given up my flat I now don’t have any rent to pay as I do live with him for free. I will look into the NHS Continuing Healthcare, thanks a lot for suggesting that. No final arrangements have been made yet, another thing which is just not being talked about- if he gets worse who will be the one to take unpaid leave to look after him…

Continuing Healthcare ((CHC) will arrange and pay for all the care dad needs, either at home or in a nursing home. My brother was diagnosed with pancreatic cancer in December, died suddenly 6 months later. You need to think which funeral director to use in advance, find out charges at very least. Does dad have any savings to cover the cost? How much do you know about nursing someone terminally ill? When my mum was very I’ll I googled signs of dying. Happily she lived for 2 more years, but the information I found was invaluable. It explained how the body very slowly shuts down.

I found a book about dying which I was going to buy as I have only googled a few things about dying and don’t know much- forgot about that until now. So I’ll do that, and ask about the continuing healthcare option. I think he has savings to cover the funeral but he could choose the funeral director if he wanted to. Lots of things which are being avoided talking about in my family. My mum actually had a go at me for suggesting that we talk to him about arrangements for dying (I did anyway, but a little bit at a time). I know that it’s possible he could live for longer than the statistics say or be a one off case who lives for longer but I think it’s better to plan for if he gets worse. Thank you for your advice.

I’ve now lost seven close much loved relatives, know far more than I ever wanted to.

Since mum isn’t living with him, to me she has forfeited any right to be involved in what you do, or don’t do.

Once mum has inherited everything she can do what she likes with it. If she wanted to spend every penny there would be nothing left for anyone. Dad can’t give it all to her and then say you and your siblings should have a share each, that amounts to giving it away twice.

I’m not sure how to reply without quoting!

I’m so sorry to hear of your losses.

My dad is a person who just trusts everyone, which has left him in a mess before, but he never learns. He hasn’t even written a Will. However I have spoken to him now and highlighted my sacrifices. After telling him he just said he doesn’t want me to have to change anything in my life to look after him, so I told him that that is impossible. And that I’m looking after him because I want to but that doesn’t come without sacrifices. I think he started to realise, or come to terms with it anyway. Agreed to write a Will now.

If you don’t stick up for yourself no one else will.
I would suggest dad leaves the house to YOU in recognition of your care, or else leaves it jointly to you and your siblings, in trust so you can stay there forever, then it’s divided up equally.
I’m in the process of putting the bottom half of my garden in trust, and my house will be in trust after I die. It’s the only way to keep the taxman at bay. Our little cottage in the New Forest cost us well under £20,000 in 1976, but we’ve done a lot of work on it, and property in this area is now horribly expensive.

Yes, sadly that is what I have come to realize. And he is now probably thinking he has many months to live, which he may do but I also know this disease can come quickly at the end.

Arrange for a solicitor to visit dad asap.
My brother died suddenly, don’t leave it or you will regret it!

I will do, thank you for all your advice!

It’s really important that a solicitor does this is possible, so that there are no allegations of you influencing the will. My mum was housebound, I let the solicitor into her house, then went into the kitchen. The solicitor asked me to go into the garden, happy to do so, then there could be no allegations. After mum died, my brother didn’t think he’d had enough inheritance, and I was sent a threatening solicitors letter. My solicitor told him where to go!!

My dad doesn’t like solicitors, he spent most of his life writing complaints letter to them over petty issues, they even offered him money to sort out the issues but he refused and kept complaining, thinking he could change the system. He’d rather do that than spend time with us as kids. So he doesn’t want to use a solicitor. He would have changed the house to 1/3 my name but my mum doesn’t want him to, and as they own it jointly he needs her agreement to change it. My mum said to me “I do feel that you are asking for all this because you don’t trust me, it won’t matter if he dies without a Will because I know you’ve been caring and I’ll make sure you get something.” She may keep her word but it seems strange that she just doesn’t want o sort anything out now. Why wait. My dad could leave his half (or whatever portion he wanted to in his Will, but he won’t). I feel it’s very unfair but I think all I can do is start to rebuild my life. My sister has refused to come back and help so what will happen if I decide to move out… I will be getting carers in to look after him if he needs more help and I will concentrate on my work and catching up on everything which I have sacrificed. Luckily right now he is pretty much well enough to look after himself, but if he gets worse I will make sure I don’t make any more sacrifices for him. He was an alcoholic, more of a functioning alcoholic and although he’s stopped drinking due to his illness, he still has the self centered thinking. I’ll keep working on myself and my recovery.

You hadn’t said it was owned jointly before.
I would suggest that YOU consulted a solicitor even if dad won’t to establish the legal position.

Sorry I didn’t make that clear. It’s a weird situation , they both own it but my mum hasn’t lived in the house for at least 6 years. She couldn’t ever bring herself to asking him to sell it, or getting a divorce, her divorce idea was dropped when he got ill. She denies that now, and she says she hadn’t thought of getting a divorce for over 5 years but either she can’t remember or she is lying because I do remember.

I suppose as he doesn’t want to leave anything to me anyway now because my mum doesn’t agree to giving me part of the house, there’s nothing I can do anyway. But if he was going to put part of the house in my name I see it’s a good idea for me to get a solicitor.

He just asked me now if I could take family medical leave (unpaid) to drive him around in his motorhome for a few weeks. I said it was something I’d thought of before, but the problem for me now is that I won’t have an income and I won’t be able to get a mortgage. He didn’t say anything in response to that. He clearly doesn’t understand that I’ll be even further behind in my work and promotions etc. I’d be willing to do whatever he wants, but not when he doesn’t treat me fairly.

Mum probably knows that if he divorced her, she’d get nothing!
Has he made a will?

If they divorced then she’d get half the assets I think, no sure… but if he dies then she’ll get his pension I suppose… well it definitely makes sense for her not to divorce him now!

She would never come back to live in this house, or live with him again in normal times… I.e if he wasn’t ill. But she would come back here to care for him (if she wasnt caring for her mum), however I know it wouldn’t be happy and they’d argue a lot if they were living together.

Mum sacrifices her life caring for one person then another. She is severely depressed and doesn’t know how to enjoy life by herself, needing to keep caring for others. Even now caring for her mother with dementia, she refuses to take a break as she’d feel guilty doing something for fun.

My dad has not made a Will, he talks of making one and may make one next time she comes to visit. He won’t make one on his own. There is no urgency about it and the Will would leave everything to her and when she dies it would go equally between me and 3 siblings. But he isn’t too interested in making one because if he doesn’t then intestacy rules state the same thing, everything goes to the spouse then to the children.