Sibling responsibility / guilt

All about caring
1

Apologies for the typically long post - I don’t have enough brain to make it succinct at the moment

I know I’m not alone in this situation so I’m hoping someone has some pearls of wisdom to share about it. I’m assuming (but I shouldn’t really) that if you are on this forum and you have siblings, then you are likely to be the ones bearing the brunt of the workload. I think it’s a rare thing that the workload is shared equally and within everyone’s capacity but how do you manage when you are the one(s) doing absolutely everything and other siblings do absolutely nothing (but they could)? It would be bad enough if it were just a moral issue, but for us it’s also a financial one and this is the bit that I feel so guilty over because it’s the bit that hurts the most.
Since I took my dad to casualty first week of December my life has been turned upside down as we realised very quickly that he had gone totally blind almost overnight and it was a permanent issue. He went from living independently other than being taken to appointments to not being able to do anything for himself except go to the loo. I’ve had to take on the admin, liaising with eleventy billion health care professionals, researched each care option, cooked, cleaned, cared, etc for well more than 35 hours a week but without getting even carer’s allowance because some of that time Dad was in hospital. My brother wanted to be dad’s full time carer and get paid for it but we ended up sharing care and paid ourselves £10 an hour so that we had a legitimate way of him giving us some money that couldn’t be considered a dispersal of assets. Dad was angry that everything he’d saved would end up going on care and we wouldn’t be left with anything. In the lead up to us taking over care from the hospital and so called live in carer, I wasn’t paid a penny. Now that he is in a nursing home again I’m not being paid a penny. I’m still doing in excess of 20 hours a week because Dad is really struggling to settle and I’m constantly having to speak to the care home / various other professionals about different aspects of his difficult and complex issues. I am also still fighting to be able to easily do his admin / banking etc. My 2 children have additional needs, as do I, my house is a mess, my joints are screaming, I’m not sleeping, eating rubbish, friends tell me I look awful, there’s absolutely ZERO chance of me getting a job even if I was trying. Meanwhile, my brother can barely be bothered to visit my dad now that he’s not getting paid and he’s back to spending his days working for cash to pay for a holiday. I’m spending £75 every 2 weeks on petrol as I live 45 mins from the care home, my brother lives 15 mins away. Other than one visit a week if he’s lucky, my brother does NOTHING.

When Dad arrived at the care home he didn’t like the bed so I bought him a mattress topper without thinking about the fact it wasn’t wipe clean so planned to take a protector in on my next visit. However my daughter got covid so I asked my brother to do it. Scroll forward to this week and Dad gets a UTI and needs a catheter which leaks in the night soiling his new 4 inch topper. My brother hadn’t bothered to get the one thing I asked him to help with. We had an argument about it yesterday and he agreed to take one in this morning. However today he messaged questioning why he needed a protector when the mattresses are all wipe clean there. Idiot. But he still wants the £14 put back in his account straight away.

Dad doesn’t see any of this. He doesn’t appreciate anything I’ve done or am doing, never says thank you or asks how I am, just tells me that he’s changed his mind about the care home and gets aggressive when I won’t take him home. He doesn’t understand why I haven’t had time to sort out talking books or cancel Sky or any of the other things I haven’t got around to. He sometimes sees that my brother is only interested in him for the money, either now as wages, or gifts (which never happen), or when he’s gone. My family life is struggling, my health is struggling, I can’t work, can’t afford a holiday, while my brother does nothing and doesn’t even worry. Yes, I have the moral high ground and I’m seeing Dad for the right reasons etc but it’s not enough. I want recognition and that makes me feel very guilty, until I look at the list of jobs in my house piling up and see my daughter struggling because I’m not there for her like before, and I want more than knowing I’m doing the right thing. It’s so unfair.

Anyone got any tips for moving forward please? I’m sick of having melt downs over the unfairness and frustration!

2

Stop, you are exhausted. I’ve been in a very similar situation, and had counselling, on the verge of a breakdown.
You are NOT responsible for dad’s illness, disability, or daily wellbeing.
You have NOTHING to feel guilty of. You CANNOT keep going like this.
You are doing your best, only it feels that nothing you say or do is never enough.
However, other people are manipulating you and making you feel guilty for their own reasons.
Dad is taking his frustration out on you.
Give up trying to do everything he wants immediately, because I know from bitter experience the list of jobs will be never ending. The faster you do them the faster they will come at you.
Counselling taught me this.
I was told to do jobs on a strictly “one at a time” basis, and to do them at a speed I was comfortable with. To never accept another job until the previous one had been done.
I was also told to set my priorities.
Disabled son came first, he couldn’t speak up for himself, mum could. She didn’t like this but had to agree it was right.
Dad is now in a care home and they should be meeting all his needs.
If there is a problem with his bed, food, laundry, anything at all, he needs to tell staff, NOT YOU!
My counsellor told me to be proud of what I was doing, not guilty about what I wasn’t.
The counsellor also told me to stop being an obedient little girl for mum.
As a grown woman of 60 I had the right to a life of my own, and didn’t always have to do what I was told!
Dad has two children. I would therefore suggest that you visit alternate weeks.
Tell dad you won’t be in next weekend. Tell brother. I’m sure he won’t go, but that’s between him and dad, not your responsibility.
Finally, take this weekend off. Plan something enjoyable for the family. Take a long hot bath. If funds allow, have a shampoo and haircut at the hairdresser, rather than spending it on fuel to visit dad.
My husband died of a heart attack, I’ll always believe it was the stress of caring that caused it.
I developed a life threatening illness, needing surgery.
My consultant told me “20 years without a holiday didn’t do you any favours”.
You MUST look after yourself from now on.

3

Hi Henry’s Cat

When I worked in a Carers Centre, this came up pretty much every week. It’s something that happens to lots of families, and it’s one of the worst things to try to advise on because there might be lots of things going on that we don’t know about. So first a few unpleasant facts:

You have no control over your brother, and he’s within his rights to withdraw from any kind of caring role. Nobody can be forced to care.

Equally, that means you can’t be forced to do anything, either. I understand that you want to do at least some of the things you do, but give yourself a break. Just step back a bit. If you visit three times a week, make it twice a week. Maybe take a complete break from visiting for a week.

Why? Because you need to stop and give yourself breathing space.

Your Dad has gone through Hell this last 4 months. Going blind suddenly and permanently has got to be really scary, and trying to adjust to that could take years.He’s gone from being independent to being totally dependent and surrounded by strangers in strange surroundings. It will take a long time to accept the change and become reasonably comfortable with it - if he ever does. All you can do is be patient and be there for him when he needs you - but on your own terms, and not to be at his beck and call.

But you and your brother also have to get used to this: and some people find it much harder to come to terms with disability, especially if they remember Dad as Superman who could always do everything, and who seemed unstoppable - until life showed them that wasn’t the case.

So, when faced with such a huge change, some people hide from it, or try to gain some control over the situation to make it easier to cope with. It seems to me that might be what is happening here.

It might be worth exploring this with your brother - ask him how he feels about what has happened to your Dad? And open up with each other about your feelings:

“When going through Hell, keep going.”