How do you know you are doing enough

[IfOnlyThereWereTenOfMe]

Caring for both parents who suddenly need significant care - everything from personal care to cooking, cleaning and laundry for them both. Each has very different needs and I have my own family and work full time, and live a 3 hour round trip away. I'm doing all I can and am torn between keeping going as I am to assuage the upcoming guilt that I didn't do enough/spend more time with them as they will be gone in a few months, and trying to protect a bit of myself in the here and now because it is exhausting and so very sad. They have carers but they do not even begin to scratch the surface of what is actually needed. How do you decide what is enough to give people you love vs catching your own breath? They were wonderful parents and I don't want to let them down.

I know you're meant to put your own oxygen mask on first and all that but in reality it's not that easy if it means watching people you love suffocate.

I think you need to pay people to clean and do laundry. And if they’ll accept them people to provide care for them. You cannot do a 3 hour round trip to change their beds.

Could they move into a care home near you, together?

I felt like this when my Mum had advanced pancreatic cancer. She was told she had about 4 months to live. In the end I just couldn't leave her with just carers and I couldn't spread myself so thinly. I gave up my job as a teacher knowing I could always get another job. I moved 175 miles back to Mum's house to spend the last few months she had with her. My sister's decided to do the same. My DH looked after my DC and I came home for 2 days each week. My sister's and I made a rota so each sister did 4 days on 2 days off. In the end she only lasted for 6 weeks and 2 days. It was very hard seeing her decline in front of my eyes. I've never regretted doing what I did as I had some lovely chats and cuddles with my Mum in those 6 weeks. I remember one night I was sitting up with her and we watched the sunrise together. My sister's said they were glad to have done it too. It was easier for 2 of my sisters as they lived locally so could still slerp at home. I bonded more closely with my sisters too. I knew it I didn't go Mum would have to go into a hospice and I didn't want that for her. I would advise you to do what will make you feel less regret later.

A care home is inevitable but I would like to delay it as long as possible to minimise the upheaval (one of them does not have long left to live) so my question relates to the short term really, 3-6 months. They are paying someone to clean but it's the in between bits like the dishes from their meals or even making a sandwich or picking up milk and bread from the shops. Helping if someone has a toilet accident or needs a lift to frequent medical appointments, that kind of thing.

This is why they need a care home

Thank you @caringcarer and I'm sorry about your mum. I'm glad you don't have regrets. Giving up work is not something I would or could do but I can see why people would want to.

I'm not looking for practical solutions because the care home decision is not mine to make anyway at this stage. What I'm struggling with is to understand at what point I draw a boundary and let things be less well cared for at home, given it is a medium term problem (has been ongoing for several months already). I just don't know what is reasonable to give and not give. How much time to myself is reasonable, should I cancel a holiday, still see my boyfriend, is it ok to take an afternoon off work to get my hair done rather than visit parents? I'm stuck and have no idea.

I don’t think anyone can answer that but you really. We can only say what we would do. Decide what you’re comfortable with and do that. No matter what you do or don’t do you may still feel guilty, perhaps resentment, maybe neither. I personally would never cancel a holiday and let my kids down at this stage with my parent but I guess that might change if our situation changes but you need to decide for yourself if your situation means you would cancel a holiday but whatever you decide try and make peace with it.

It’s so hard isn’t it.
Do they have any funds to pay for a cleaner who could also do laundry? If they don’t have attendance allowance it sounds like they would be eligible for that which would pay for it. Definitely try and outsource anything that could be done by anyone else. You could explain to them that as your time is limited you would rather spend it being with them as their DD rather than doing all these chores somebody else could do.

Please don’t give up your job/cancel your holiday/ not go on dates or not have your hair done. If you know for sure this is a short term thing then maybe it’s worth continuing to throw yourself into it, but if it’s likely to go on for more than even a couple of months you need to put you first. It’s not selfish it’s self preservation. Also the more you do, the less likely they are to agree to a care home.

How much time to myself is reasonable, should I cancel a holiday, still see my boyfriend, is it ok to take an afternoon off work to get my hair done rather than visit parents?

You’re allowed to live. Holiday depends on location and duration insofar as the potential for dramatic repercussions and how those would impact you. Of course you’re allowed time to get your hair done and see people other than your parents. I do understand the guilt and how it boxes you in, how they don’t understand your world didn’t shrink when theirs did, but you are not a carer. You are a family member helping out here and there. They need a closer team- paid professionals, so that you can be ‘just’ their daughter.

What do they think of their situation? Are the concerned about dishes piling up? Are they asking you to do more?

Maybe helping them find a solution is more re sustainable than trying to be the solution? Help them to identify the priorities (safety and hygiene over tidiness maybe)?

Oh op, you are heading for a breakdown if you do not rein it back, you must be exhausted. There’s a reason why they say fit your own oxygen mask first.Only you can set your own boundaries I’m afraid, and you really need to do so as something is going to give sooner or later, and it’s probably your mental or physical health or both. Buy in every service you can, and dont do as much yourself, for your sake, and your family’s.

Op just be careful as the more you do.. I found I got resentful as my mother demands demands. Im in school job so summer off. Glad am back working as cant do as much. She has some home help. But she moans either way. Its tiring

When a parent has a terminal diagnosis, which it sounds is the situation here, it’s very easy to end up throwing everything you’ve got at it because you feel you should. And that’s sustainable for a few weeks, but it isn’t for longer. Outsource the things like shopping, cleaning etc so your visits can be less often but higher quality. Otherwise you’ll make yourself ill, end up driving when dangerously tired or barely see your children.

I had no idea until it was my relative but end of life is very variable and there are no certainties about timeframes. I’ve seen someone given a month then live another three months, someone else last over a year longer than anyone anticipated. In the first of those I committed to a lot of visits and was really struggling by the end.

I echo PPs saying don’t cancel holidays or self-care appointments for yourself. No one can ever predict how long the end will last. It can get quite brutal at the end especially if they have lots of ambulance call outs or it starts to affect their general behaviours. But everyone is different and handles the different stages differently.

My DF died a few months ago but the last 12 months of his life was very hard and I got quite resentful. My DSis handled it better but still had her difficult moments. We made sure each of us had at least 2 days off each week, kept each other updated, vented to each other when necessary and tried to go with the flow. We made sure we kept our own medical and well-being appointments, like hair appointments, respected each other’s days off as much as we could and most importantly, told each other when we were struggling.

A surprising things was the number of DFs contacts that asked to visit him when he was in hospital, trips which increased in frequency towards the end. His neighbours, cleaner and gardener thought a lot of him and wanted to pop in. We accepted these requests gratefully and took the opportunity to skip a visiting time knowing he’d seen someone.

The guilt comes whatever you do, so it’s vital you pace yourself. When the end does come the pressure doesn’t vanish. If anything it ramps up with arranging funerals and sorting out the estate mixed in with all the emotional turmoil.