Struggling

All about caring Former carers
1

I was caring for my dad who had terminal cancer for over a year. I don’t feel there’s anyone I can talk to who understands my situation. I just want to write my story in a nutshell.
A cared for my dad alone during lockdown, he had high medical needs and I was working full time from home at the time. I was stubborn and didn’t stop working, rather just doing the minimum, taking leave and working flexibily. It meant that as I saved up my leave for caring, it was difficult to ever have a holiday for myself. I asked for help from my family and 2 siblings came to help one at a time but neither stayed for long.
I moved into my dad’s house, and slowly all my life slipped away from me. I realised I was struggling, and I considered many times stopping working to make things easier for myself. When I talked to my dad about my struggles he just shrugged it off, saying don’t change anything for him and he said he should be able to administer meds himself ( I explained he couldn’t do that and the doctor only let him stay at home rather than hospice because I agreed I would do it). He was basically diminishing the fact that I needed to be there at all and trying to show that he didn’t need care. After my sister left saying that she wouldn’t come back to help, and would absolutely never consider moving in or even moving to the local area, I felt really abandoned and felt so angry, everything was left to me to sort out. He got worse and she did come back. Three days before he died she said to me “me and my bf have been looking to buy a house, and dad said he would give me 20k towards the deposit, but now I don’t know what to do (because he had lost capacity)”. This was the first time I’d ever heard of it, and later thought it was disgusting that this was on her mind when he was dying. The week after he died, my sister said her and bf were saying they might move in to save on rent. I got so angry with them, especially my sister who had refused to ever move back before to help me care for dad. We didn’t talk for a few days and we did talk again but they eventually left. I stayed in the house, doing emergency repairs to it for 6 months after he died (there were various leaks and roof problems that needed urgent attention). I did this to help my mum, she lived apart from my dad for over 6years and cares for her mum, but owned the house with my dad so he left everything to her. She also didn’t know what or how to mend the house problems and lives far away.

Three months after dad died my sister asks my mum for 20k for a house deposit, which my mum gives to her. I found out about it and felt angry again, the unfairness of it. I said to my mum why should she get that and mum just said well It’s going to come out of her inheritance so when I write a Will I’ll note it down in that.

I feel so much resentment towards my family, because they just carried on with their lives while I was looking after dad. And I was completely unappreciated. After my sister walked out saying she wouldn’t help with caring anymore I had a discussion with my dad about if I could have payment for caring and what would happen if he needed more care. Again he shrugged it off and said he’d go to a hospice, failing to acknowledge how much I was already doing for him and sacrificing. He also commented “well I wouldn’t expect your sister to move here because she’s living with her boyfriend”. He was making excuses for why noone else was helping. I wouldn’t change looking after dad, and I’m glad I managed to care for him, but my family have made things so much worse after he died. I go through phases of anger at them, and The relationship between me and my sister is permanently scarred, which is a shame because I got on ok with her before, but she had been so so selfish. I know that anger is a part of grieving too. I’m angry at my mum for being so unfair.
I have a new boyfriend and I feel bad for talking to him about these issues when he hasn’t even met my mum or sister. I moved out to travel in my van which I work from so at least I’m away from the house, but I need to find a new home, a more permanent solution after a trip away. Living in my mum’s house (although she doesn’t live there) still means I’m connected to the family. After a phone call with my mum, whether I’m living there or not, I always get worked up and angry because she has so many problems that she offloads on to me, but refuses to do anything to help her situation so any suggestions I give fall on deaf ears. I know my life could be worse but I’m really struggling and I just feel I need a completely fresh start, it makes it difficult having my new bf because I don’t know whether to actually see if things are going to work between us or just move to a new country , find a just abroad. and totally start afresh. And I feel it’s too early to move in with him, plus there’s not much room there and he has housemates, so I’m just in limbo, prior to caring i’d oinly just started my career and hadn’t settled anywhere or built up a friends network. I’m at a loss as what to do now.

2

I had a useless family too.
When I had been caring for mum without expecting any payment, for 30+ years, she gave £20,000 to my brother who earned huge amounts of money, but spent it even faster. I got £20 each Christmas and birthday.!
Now it’s time to stick up for yourself.
As you cared for dad, ask mum for £20,000 like your sister plus an extra amount for everything you gave up while your sister did nothing.
I also found out that brother had other “loans”.
When I said I’d never had anything, his reply was “well you can’t have asked right”. I never asked for anything.

If mum refuses, ask why?
Then make a fresh start, forget about them. Go on holiday, have a great life. You deserve it!!!

3

Hi bowlingbun, I’m sorry to hear that you had a useless family too. Thank you so much for reading my story and for your advice, which I sure will take on board and go and ask my mum for that. It’s good to get that perspective. I just felt I couldn’t ask for anything- but I can. And if she doesn’t, then I will let them go. It shouldn’t be that way, that the one the asks gets. But unfortunately sometimes it is.

4

Dear Katherine,
I am so sorry about your Dad and everything you have been through.
Reading your post is almost like I am reading my own story. I also cared for my mother who was diagnosed with terminal lung and brain cancer last year and passed away in December roughly 6 months after the diagnosis. I had to give up work because my mother lost her mobility and became bedridden and needed 24 hour care. I also have 2 kids, a 14 year old and a 16 year old and although they were amazing in the way they tried to help me and also trying to look after themselves as much as possible I had to care and be there for them as well (it was very difficult to deal with the situation for them, specially emotionally). Although I am originally from Portugal my brother is married to a English woman and they live in London as well but just like your Sister they never helped with mum’s care and their lives didn’t change… I, just like you feel that I am in limbo, I am in temporary accommodation (for that I am very grateful) with my kids after finding myself with nowhere to live due to having separated from their father after 25 years together.
My mother was always making excuses for my brother’s absence and I don’t know how many times I told him I needed help and the answer was always the same: “- I can’t because I have to take care of my family and I have to work” as if I don’t have a family to look after as well and apparently it is okay for me to give up my job (I am a activities Coordinator for a supported living housing scheme in the adult health and social care sector, and really love it) but not for him. It is like I had the obligation to care for our mum. I felt so alone at times that there were moments of total despair.
I do understand what you are going through and just want to say that you are not alone, please feel free to get in touch if you need to talk.
I am here.

5

Hi Agnes

Thanks for sharing your story and offering your support. I’m here too if you want to talk. It must be so difficult for you having kids to support aswell. Seems a common theme with unpaid carers is that one sibling does everything and others do minimal or nothing. I’m lucky to have been able to keep working, although I don’t like my job it’s the only stability i have at the moment.

6

If you don’t stick up for yourself, no one else will. On a plane, the emergency advice is always to put on your own oxygen mask first, then help others. Too often I put others first. My brothers were both incredibly selfish. I’m sure this was my upbringing. However, amongst all my caring I studied for an Honours degree, ran a business with my husband and a national club for 20 years, and had lots of fun, as all as hard work.

7

Hi Katherine,

So sorry to hear about your struggles.

The resident Queen of “saying it how it is” BB (hope you don’t mind me saying that) has already given you excellent advice. Stick up for yourself and be firm.

I think there is a recurring them when it comes to caring where one person has to do everything but gets nothing in return and the “useless” siblings get showered with money and gifts and what not. Same happened with us. I have 2 sisters and the oldest one did sweet FA in the 3 years that Dad had cancer - never offered to go on a chemo appointment, never offered to give Mum and me a break, nothing! She didn’t even step in over the last few months before he died where Mum and I were run ragged with constant abuse and criticism: “do this”, “do that”, “you are useless”, “can’t you do anything right”, blah blah blah. On his death bed, he was asking for the useless sister and Mum was like WTF! He also wrote a will in which he left some money to said useless sister. 95% of everything went to Mum. My other brother took great offence but he was more or less equally useless as sister.

Good luck though and hope it works out for you.

8

That’s a good way of putting it. I’ve definitely been more attuned to the needs of others first and it’s not healthy.

9

Hi, sorry to hear of your issues too and thanks for sharing your story. Yes sadly a recurring theme. And yes siblings that are not willing to help are often keen to criticise, my sister did plenty of that. I am learning to stick up for myself now!

10

Siblings who refuse to help have no right to criticise and lose any right to a say in the future care of that parent.