Am I selfish for not wanting to become a carer?

[alltheseasons]

My DF has been diagnosed with an illness - dm died so he lives alone. We don't really know what the prognosis is at this point as he's having treatment but having looked into the illness and treatment in depth, it seems that even after "successful" treatment, he still won't be a well man.

As the eldest sibling, I've been expected to take the lead and have done, speaking to doctors, taking him to appointments, cooking for him etc. The others check in, phone him, pop in and see him for half an hour etc, but the bulk of it has been down to me.

Don't get me wrong, I love my dad and am happy to play my part. However, I'm feeling increasingly overwhelmed and depressed about it all, because all the travel plans I had with my DH after being at home for two years have been put on hold and I feel like I can't plan anything in case I'm needed, or things take a turn for the worst.

It's not long since our dc left home, and we were looking forward to having the freedom to do as we pleased until the pandemic hit. Even now though, I'm in limbo and I'm resenting it. Add to that the guilt I have about my feelings and I'm in a right pickle.

Has anyone been in this situation and how did you deal with it?

A friend's elderly mum (who lives nowhere near her) has a carer come in for half an hour a day, not to do personal care (except hair washing) but to get her a hot meal and do basic household tasks - putting the bins out, hanging out the laundry etc. It sounds like your dad might benefit from someone similar?

Just don't do it. If your dad had never had any children, he would have to manage (albeit with help from social services, paid carers or whatever). It is not your job.

Oh and number one message, dump the guilt now.
Oughts and shoulds are the slippery slope. You deserve your life.

Thank you all so much. I've been feeling wracked with guilt for weeks now, and I honestly expected to get loads of posts saying "your parents brought you up, it's the least you can do to care for him in his old age!"

Look at it this way, if he has something progressive then this is the very best time to go on holiday, right at the start where the main driver is your guilt rather than his needs. It is easier to sort out responsibilities with your siblings now rather than years down the line where everyone's behaviour is entrenched. As others have said, outsource everything you can, there are still local hot meal delivery services out there, taxis exist and so do cleaners and gardeners. It doesn't have to be all you, all the time, even if you are the eldest.

@Knotaknitter

Look at it this way, if he has something progressive then this is the very best time to go on holiday, right at the start where the main driver is your guilt rather than his needs. It is easier to sort out responsibilities with your siblings now rather than years down the line where everyone's behaviour is entrenched. As others have said, outsource everything you can, there are still local hot meal delivery services out there, taxis exist and so do cleaners and gardeners. It doesn't have to be all you, all the time, even if you are the eldest.

It's tricky really, it's not progressive. It's potentially terminal, he's kind of in the middle of his treatment and it's a case of anything can happen at any time. He could be fine one day then get an infection the next and end up in hospital. This is what's making it so hard to plan anything.

Covid didn't help, it's been a hard couple of years and just when I thought things could get back on an even keel it all went tits up.

You are not selfish at all. You do your share but make sure your siblings do theirs too, otherwise a pattern of expectation will arise where it is assumed you pick up the bulk of the care.

Book you holiday, ensure sibling are around, and also discuss temporary respite care for him, either with carers looking in daily while you are away or in a home that specialises in temporary care for exactly this reason.

Brilliant brilliant advice from those who have worn the tee shirts.
You sound like a fixer, make the contacts and connections and plans but Please please protect yourself.
And align your siblings. Put effort into being on the same page. And as @Knotaknitter wisely says, now is not a bad time to go away. Get fuel in your tank.

Please get yourself a holiday. I’m in the same position only I’m in my 60s with no siblings. That’s why my mum now in her 90s has carers 3 times a day. She complains bitterly about them which really makes me feel worse, the guilt is terrible.
But my husband retired two years ago and it wouldn’t be fair on him not to go away, also, I have young grandchildren and a part time job ! Lots of juggling going on.

You must make time for you two. Start as you mean to go on, then your dad and siblings will get used to it from the start.
Good luck to you all.

Book it, they can step up and you can work out solutions in the interim even paid help. For meals can he use a microwave? If so Wiltshire foods is a good option

Book the holiday. In fact book more than one holiday, and live your life. Make it clear to your siblings that the burden needs to be shared, and get in paid help for anything you can, if you can afford it.

Even if your father doesn't need personal care (yet), it might be a good idea to find someone now who can do a bit of shopping, cooking, cleaning and provide companionship at least a couple of times a week. Ask around for local agencies or individuals. Having someone like that on board now will not only mean you don't feel bad about not being there all the time, but might make it easier as and when he needs more hands-on care as he will already be used to having people coming in and out.

Also, get Lasting Powers of Attorney (for finances and for health & welfare) sorted as soon as possible if you haven't already. Make sure you and your siblings are all down as having 'joint and several' responsibilities - don't take it all on yourself.

I have reluctantly and unintentionally ended up responsible for both my parents. DF died last year after a couple of decades of ill health and disability; DM has also had health issues for about 15 years and is now disabled and housebound. My sister died a few years ago, and lived several hours away before that, so all the organisation is down to me, but we have paid carers for hands-on stuff, a lovely housekeeper-companion for other things, and I make sure I have my own life and get away very regularly (DP lives on the other side of the country so I have a good excuse and a bolt-hole).

Lots of posts here saying that siblings need to share the burden, but realistically if they don't want to or can't, you have no way of making them. That's not to say you should do it all or that you shouldn't be talking to them, but you need to be prepared for a conversation where their ideas of what can or should be done by children are radically different from yours.

Agree with all the others. You shouldn't be the one carrying all the load.

It is acceptable to be:

-the one who does more organising financially/in terms of property - broken boiler/window cleaning etc
-the one who keeps on top of medical appointments

• the fixer
• the one who checks up and drops in more
• the one who pays for a carer to do more and visits when they can

There are many ways to support elderly parents and siblings caring for elderly parents - if it helps to specialise, do that. It is not acceptable for one to do it all and everyone else to sit back and pop in now and then.

40% of local authorities still have a meals on wheels service. See if yours is one of them. If not,consider ready meals - wiltshire Foods, Parsley Box, M&S.

Don’t do anything that can be outsourced.

Badyboo

Lots of posts here saying that siblings need to share the burden, but realistically if they don't want to or can't, you have no way of making them.

@Badyboo yes!

I’ve fallen into being the default sibling over the last 9 years during which one parent died and other became housebound. I too feel dread and guilt over holidays. My life is a three way split of work, caring and family. I’m constantly letting one of them down. I’ve asked my sibling before to cover while I’m away (and it’s only once a year). She does not. She comes and goes as and when suits her which isn’t a lot. The inevitable outcome for me is that we no longer speak. I’m not sure what I could have done differently. Perhaps a WhatsApp sparing no grizzly detail early on would have helped. They are gloriously naive about the reality of the situation and implications for me.

How is your dad for social contacts outside the family? Does he have friends and neighbours who he sees? My DM used a really good befriending service which matched her with people whom could sit and chat with her once a week, or go for coffee/walks. It meant there was somebody else around who was not a carer, who had no responsibility for her, but a regular visitor to look forward. It really helped with the isolation of lockdown.

Do not become the Carer.

It is much better to be friend and family member and help and bring joy when you can.

Find out everything about getting the support he needs.

He may well be entitled to Attendance Allowance (which is not means tested). An assessment by Adult Services to see if he is eligible for home care visits. (Means tested). Can he afford to pay privately for a Carer to come in for part of each day?

What does he need? 2 hours of a housekeeper: a meal, help with shopping, some cleaning?

Meanwhile have a meeting with your other siblings. Talk about your travel plans. Suggest you all try and co ordinate holidays and travel so that you are not all away at the same time. Make it clear that you will not be becoming the default Carer. See what they think about what support your Dad needs and how they can contribute.

You need a holiday to recharge your batteries and to have some quality, relaxing time with your DP.
Set up a rota with your siblings for while you're away - and keep it going when you get back.

Of course something could happen when you're away, but chances are it won't and you might end up resentful. Your DH too.
We're in a similar situation, although neither I nor my siblings live locally. I have tended to book destinations with regular flights, or if in the UK not the extremes of the country so if absolutely necessary, I can get back and not have to wait days for a flight/take a whole day to drive back. . But even then, if it's more practical assistance that is required, your siblings need to step up, rather than the default be that you come home.
Please go, caring is exhausting, you need a break and you need more help from the others even when you are home.

What does he need? 2 hours of a housekeeper: a meal, help with shopping, some cleaning?

At the moment, just some company, accompanying to hospital appointments, and some help with cooking decent meals (he can cook but doesn't tend to cook much variety as there's only him and he feels it isn't worth the effort)

Tbh cooking him a meal isn't a problem, I often batch cook anyway. I'm just becoming aware that it's currently only me who does anything for him when the others just visit. My concern is that if/when things get worse and he can do less, I'll be the default carer.

I'll try and arrange a meeting with the siblings to discuss.

Not selfish at all, yes talk to siblings sooner rather than later as to how you anticipate things paning out.

Did manage a bit of a casual chat with siblings last night....sis seemed a bit put out when I suggested we take turns to sort dad out with meals (she wouldn't have to cook, he'd be happy with a take away or meal out, it's more the company to eat with that's important)

It certainly seemed from her reaction she expects me to be doing it. Was a bit awkward as partners were there too as we were out socially, I'll obviously have to schedule a more formal discussion.

Do not become his carer! Book your holiday and have a serious chat with your siblings about the support he needs while you are away but also on an ongoing basis. You need to be a team regarding his shopping and cooking. Carers can come in to cook meals not just for personal care too so that could be an option.

Be really clear about what he wants and what he needs. He needs meals…. Wants company.
Neither needs to be from family.

Think about what you can do - then halve it and insist on siblings doing it.
I’m an only but ensured a full care package plus I got the attendance allowance so I can pay cleaner/companion. My adult kids will also help if I need it though they live further away and have children.
Even with this the amount of admin, house management, general requirements and medical appointments is unreal and for example last night I was called at 11 as her pressure mattress broke so went to sit with her until mediquip could arrive. All my leave was used for house/medical appointments etc this year - similar to bringing children up!
What I’m saying is don’t underestimate what might be needed or how tying it might be and do insist on sibling support. Early on in my mum’s care I had to isolate and was panicking but my kids stepped in, the full care package meant anyway she was safe and it proved stuff would work out if I wasn’t available after all. Just don’t be available at certain times and they’ll have to step up. Start that now before it becomes routine. Apart from family support if you need carers be absolutely clear what you won’t do when discussing it with social- totally downplay your availability- when my mum was coming home I had to more or less say I wasn’t available at all to get what was needed - previously as i had said I could be around a couple of days I was literally doing day/night care for both parents and it wasn’t feasible nor anything like reasonably similar to what I thought was wanted but once you say you can be there then they don’t put anything in - I’m glad I learned that lesson and could insist next time around.
All best wishes OP, it can be tough.