Guilt

[Skyflyinghigh]

Hello

i am in the perfect storm of elderly parents, full time work, husband and grown up children. My dad is 87 and housebound (unable to mobilise) and mum been diagnosed with a life limiting illness and needing more care. We have carers who come in twice a day and my older sister and I help out a lot, staying overnight alternate nights and making meals. I am absolutely burnt out. I feel guilty that I’m not doing anything well. Work is suffering, my DH is feeling neglected and kids have problems/issues that I’m not addressing. I think I just need a hand hold and to get this out. Nursing home not an option but we are looking at increased care. It’s affecting my sister and my relationship too as we both feel we are doing more than the other. She does do more than me but she doesn’t work so does have more down time. I feel I work, look after my parents and argue with DH rinse and repeat
anyone else feel the same? I don’t want to resent them as they are wonderful parents but I’m so tired.

Are they not entitled to four visits a day?
Does you mum have cancer, as if so the local hospice may offer some care.

You need help in place and now. This scenario nearly broke my family. Speak to adult social care, and have a family discussion as well.

We are trying to get that in place. They have been resistant to to now to accept it

What are the reason you are staying overnight? Is it really necessary?

Increase the care package as soon as possible to cover what you and your sister are doing.

Explain why to your parents with honesty- you will be in a much better position to support them and be a daughter and sister.

Could you and your sister alternate weeks? A week an and a week b? To be their go to support so you each know you'll get a few days away?

Your dh needs to step up, too. You may be your parents support, he should be your support.

I’m in a very similar position to you. Dh was generally neutral in the background, but getting cross that I am struggling. One day when he griped in front of a dc about something to do with my parents, I said (quite sharply, I admit) “You are teaching our children how to behave towards us when we are old, frail and needy.” He didn’t say a word. But he has never complained about my parents since, he has increased the amount of housework he does, and he helps me organise myself for when I go to my parents.

You need to speak to social services and tell them more care is needed. If you and/or your sister burn out, get the flu or have a nervous breakdown then what? Making you ill is not the answer.
You say your parents are resistant, that's not fair on you or your family.
Edit: I understand the guilt, but in the long run this is best all round.

Do both of your parents claim attendance allowance individually?
The money can pay for anything they want like extra care, meals, cleaner, transport, health

What happens when you & your sister want to go on holiday ?

Your sister can claim carers allowance if she is under state pension age & not working

I will add the link

This is not means tested
Both your parents should apply individually
Spend it on themselves

https://www.gov.uk/attendance-allowance

Carers allowance, you can only earn up to a maximum of £196 per week & still claim

National insurance contributions are also paid towards state benefits & state pension

You could both claim if you earn under the 196

www.gov.uk/carers-allowance

Can you reduce your work hours a bit?

Why are you both staying over night ?

Surely that is not sustainable, especially if you are still working & have children & your own household to run as well ?

How long do you expect to continue to do this ?

I think it sounds like you need to increase the care package and prioritise your DC and DH.

Edited to add: and don't feel guilty about it.

Staying alternate nights is too much. That is why they don’t want to accept increased external carers. You have to re-draw the boundaries, but do it with your sister, and agree what you are both able to (and happy to) do. Do not underestimate the impact it will have on teenage / young adult kids (having an absent mum).

I live 100 miles from my DM, but can only visit for 24 hours (which includes an overnight stay) each week. I have a young teen at home (who mu absence impacts, which is another story).

Once you and your DSis have worked out what is sustainable for you both, then you need to be clear that they need to get an adult social care assessment, and look at outsourcing care. It is good to get it in place before there is a crisis.

My dm absolutely loves the carers that come in four times a day, but she hugely resisted if at first.

You mention your parents are reluctant to have carers more frequently. That is so common, but totally unreasonable, and that there is the number 1 reason to NOT feel guilty, at all.

I think you need to contact social services to review the care in place, your mum’s GP to review the palliative care arrangements, and possibly OT to review both parents mobility needs.

My sisters and I faced a similar situation some years ago, and it took a lot out of us, but we learned that sometimes our parents had to rely on the ‘system’ .

If you get any chance to sit down with your sister, and talk it out , over a cup of tea or something, please do so.

And remember that just because she doesn’t work, does not mean she has to do more. Her time is no less valuable than yours. That thinking would piss me off if I was her.

But take a minute to breathe and try to think it through logically, what would help you most , right now.

I wonder, OP, why you say a nursing home is not an option?
Your parents need more care and support than you can give, so that would make residential care very much an option.
It is absolutely not your job/role to be a carer for your parents. There is help out there - you need to access it ASAP.

I’m wondering this too.

It sounds like they both need an assessment from SS to work out their care needs and if they can be met at home.

You are your sister will burn out.

Do they have any money? Any rainy day savings need to be cashed in.

Trouble is OP, they might be very frail and ill, but that doesn’t mean that they wont live on for years yet.
You need more care, either a live in carer or a home.
What would happen if you and your sister were run over by a bus? Do that.

A poster above refers to teaching her children how to treat elderly frail relatives, well I hope what my kids have learnt is not to sacrifice their life for mine, I've told them that they’re not to often enough!

Your job, along with your sister, is to manage your parents' care and ensure that they have all that they need (which might mean residential care), rather than providing the care yourselves.

There are people who are trained and qualified in providing care appropriate to the needs of the elderly. That is not your specialism.
Start by talking to your sister, agree to ask for a care needs assessment early in the new year (not now, your request could get lost), explain together to your parents that neither of you can continue to spend alternate nights with them, you have responsibilities at home and there are other better ways of keeping them safe.

Thank you so much for everyone who has taken the time to reply. I showed this to my sister and we had a good chat. We agreed to talk to the wider family after the festive period and I have a meeting with social worker to arrange more care.
it really helped to write that all down and get it straight in my head.
thank you again and merry xmas x

I am glad you are going to get in additional support OP, it’s such a hard situation and could go on for months if not years so it’s best to be sensible. I am sure if your DPs were in sound mind and body they would not want you to sacrifice your marriage or your job as some posters seem to be suggesting. Unfortunately this does mean they need to accept outside help and they won’t like it, but you and your Dsis can’t keep on like this.

Its also important that you maintain a relationship with your Dsis which is almost impossible when your DPs are expecting you both to replace 24/7 carers.

Just to say the bit I struggled with for both my parents is how to do enough to not feel guilty, but not so much I risked my own health and work stability. I was in a similar position where my sibling didn't work and it is hard to work out what is genuinely fair. I think it's very important to remember you are as important a person as the rest of your family and you deserve some rest and care as much as they do, so it's important to demarcate time to the care, but also to balance what is urgent care which can take big chunks of time vs long term care needs which needs to be shared around more. But it sounds like you're arranging that with your sister now. I always think, if i was ill, I wouldn't want my kids burning out over me, so try and be similarly kind to yourself. Best to your family and for some nice times over Christmas.