AIBU to need a break from hospital visits to my brother?

[PoisedFish]

I need advice please.
In short, my brother has been in hospital for 7 weeks. He went in with septic shock and since then has had a number of complications including other infections with the latest being aspiration pneumonia. He is on the strongest antibiotics except although he is getting better in some ways (vitals ok, bloods ok) his brain function doesn’t match this. He has been in like a low responsive state for nearly a week. Doctors have indirectly pointed towards a low survival and asked to spend time etc..

The hospital are still actively treating what they can and will run ct scan and other tests.
Now my problem I feel selfish to say is that I’m tired physically and mentally.

Ofcourse this doesn’t top what my brother and sister in law are going through.

But, I live 50 miles one way which I know isn’t too bad I try to visit 3 times a week on average and recently being trying to come when I can given the prognosis. We don’t have our parents and no other sibling. So it’s just my sister-in-law, her 2 15 year old daughters, their 20 something year old cousin brother and me.

I am married and live away.
My sisinlaw in survival mode is relying on me. More recently asking me to come more frequently. But I have a 5 yr old and 1 yr old who been looked after by my in-laws when needed so I can visit my brother. But they have a life whichI know they’ve put aside as they understand. I feel exhausted and need a day break in between but I’m made to feel guilty and when I’m not there nearly always given a sad update or asked to call for updates when I’m not nok.

I want to be with my kids a bit too as It’s what gives me a mental break.
I feel selfish to say I need a break.

I am so sorry about your brother🌺

It's not selfish to need a break or that you want to spend some time with your children. I don't know how you should word it though. Saying I need a break might land wrong given the circumstances. maybe saying that you need a few days to spend at home with your children to regain some strength is better, but I'm not that great with things like these.

I mean, if your brother's prognosis isn't good, it's not likely to be a long term commitment, is it?
I get you're exhausted and missing your kids etc but I think I'd probably put that to the side and spend as much time as possible before I couldn't anymore.

Not unreasonable at all. You have to look after yourself and your children are very young. Thats a lot of travelling. You must be completely exhausted mentally and physically. Its okay to know when we need a break. I'm so sorry about your brother.

Whatever happens you'll be in this for a long haul so you need to look after your own health and your family so you can continue to support your brother and his family. My husband was in hospital 70 miles from home for nearly 3 months . His dad visited every couple of days while he was critically ill but after the first 10 days I told him it was too much to keep going back and forth because I could see the toll it was taking on him. We agreed he would come once a week after that and I called him every evening so he was in the loop.
Otherwise I was grateful that people came on a rota so we had one visitor once or twice a week.
When something goes on for so long there has to be some kind of pattern or routine or you will all suffer burnout.
I'm sorry you're experiencing this, the rollercoaster is awful.
My best advice is to think about what you can do on a practical level that is maintainable for you and see if there is a way to support your SIL without needing to be back and forth quite so much.

I wouldn't be leaving my kids that much (mine are the same age) for anyone. I know that probably makes me selfish but my nuclear family always comes first. But I don't expect anyone to put me or mine ahead of their nuclear family, either.

I'm so sorry for your SIL, it must be devastating, but if I were in her position I wouldn't be relying on my dh's sister who has younger dc than ours.

I'm sorry about your brother. I've had septicemia (along with meningitis) myself, so I understand how devastating this must be for you.

You have children yourself, who need their Mum too. You are going to be no use to your SIL in the coming months or your own children, if you are exhausted and burnt out.

You need to gently explain to your SIL, that you have to spend time with your children. They don't understand the situation, and are becoming unsettled and upset.Tell your SIL that you will visit twice per week, but any more is becoming impossible. In between time, you will keep in contact with her and the hospital.

You have to start putting your children and your own well-being first. Yes, it's hard, but like I said, if you run yourself into the ground that's going to be no help to anyone.

What a terribly hard situation .

My mum was in hospital 50 miles from me too for about two months, at first we thought she’d die but she recovered. I never expected her to be there so long - I couldn’t keep up the momentum of visiting every day. It is draining.

My journey took an hour each way, plus time to park and sort out the huge parking fees (which could only be paid in £1 coins!) and then hike across the hospital to her ward.

At the time I wasn’t working and I was the only person able to visit her but I couldn’t physically go every day as I also had a toddler.

I think it’s okay to say to SIL “I’m here for you at the end of a phone and I’ll visit when I can, but I can’t commit to visiting more at the moment - I wish I could, but my kids are too little and the distance is so far.”

Are the two 15 yo girls your brother’s kids? How are they coping?

As @NobodysChildNow said it is a terribly hard situation. I’ve had to deal with similar but not had to travel so far.

You need a break so take one now (say you are ill if need be) as it seems they are soon going to need you more. A break now will hopefully “refill your tank “ and prepare you for what lies ahead.

I have been on both sides of this scenario. There is nothing wrong with how you are feeling. I find in situations like this it is best FOR ALL to be very firm in establishing your boundaries. "SIL, I will not be coming on Thursday this week. The kids need me and I need to be present for their needs and mine. I will still be there Tuesday and Friday and via phone at any time you need me. We will get through this."

Your family comes first that's your kids. Travelling 100 miles in a day will take a toll.

The advice is exactly the same as what you received last time. This is not sustainable and, unfortunately, your sister in law will have to cope somehow. One visit a week should be plenty unless he deteriorates and you want to be there to say your good byes.

What is she relying on you for? Swapping out? If he's not really responsive he doesn't need someone there every moment if she needs to go and see to their 15 year olds. I don't think your brother would want you to be leaving your kids with your in laws several times a week for months on end.

From the other side I can see SIL side

my DH was in hospital a 30min train journey away. I went every day and I nursed him for the eight hours I was there as nursing staff so run off their feet every day for two months (with only four days off due to trains not running). He wasn’t expected to live. I was on my knees. I honestly don’t know how I did it. It took me three months to physically recover.

it’s a hard situation for everyone but I wouldn’t be asking you to come more than you are. Is she using your visits to get some respite for herself?

Honestly, given the prognosis, I’d try to push through if I were you, and support your SIL as much as possible. If it was going to be ongoing for a long, long time, I’d agree you should take some time off the visits, but given a possible end-of-life situation…

So sorry you are going through this. Stay strong and give/receive lots of hugs. 🩵🩵

@PoisedFish sorry it's all so hard. Could you ask if the hospital team if they have considered hypoactive delirium? It is often missed because the patient is passive and docile. Hyperactive delirium is noticed because the patient is, quite frankly, a bit batty and hard to care for.

If it is hypoactive delirium there are things that can help such as making it really clear when it is day time and night time, making sure there is a clock with the date and time in view, having memory boards with photos of loved ones and things the person values, etc.

None of that is for you to do directly, but it's something that you could ask about and some hospitals are far better at it than others. ICUs are particularly aware of it, but general wards less so.

maybe offer to help by making life more normal for the 15 year olds?

Have them come and hang out, go and do something nice with cousins. Stay overnight and have some fun. Frame it as this is now looking like long haul, your kids are too wee to be left so much, everyone needs to get used to the new normal and factor in things to keep sane.

im sorry this is happening to your family. You sound lovely and caring.

You need to take care of yourself so you don’t burn out. Be honest with your sister in law that you will be there for her and your brother as much as possible but you need a little break as your children need you and you are burning out.

Your children are very young and potentially need you just as much if not more than your brother. I’d drop it down to once a week. You’ll do no-one any good if you burn yourself out. It is devastating for your sister in law but her children are at an age when they are more independent and don’t need the care your children do.

I think there is a cultural element adding to what’s expected of the OP.

Op, where does your sister in laws family come into visits and supporting their daughter and grandchildren.

There is no need for you to be there three times a week. If your DB is low responsiveness does that mean he knows you are there or not? If not then people don't need to be all the time is he has some level of consciousness then you can tell him you can't be there as much. Im
sure he won't want your children to be deprived of their mother for so long. It's difficult but sometimes you have to be pragmatic.

I've been in the same situation as your SIL and no matter how horrible this is for you its far worse for your SIL so although you should definitely protect your own health and time with children just be really careful how you frame it. Can you suggest that you want to be as much support as possible but because of kids you need to plan it. Perhaps suggest 2 longer visits a week when you can help her as well. She can take sometime off visiting because she knows someone will be with him and you get to spend some peaceful quality time with him without stress of family being there. It shouldn't be about everyone crowding round his bedside. Then maybe their house for a cup of tea and a hug. Sometimes having it planned in helps you manage the stress better.

Thank you all for your replies. Unfortunately my brother passed away a few weeks ago. I have been trying to be there for my sister-in-law and my nieces. I genuinely did feel exhausted but my sister-in-law was likely in survival mode and upon reflection I shouldn’t have complained as it was only for 9 weeks.
I think I wanted people to understand that I had young kids and work to worry about too.

@PoisedFish I’m so sorry your brother passed away and I wish you some peace of heart soon.

There’s no need to try and explain why you posted. You have two very young children to look after as well as having a job and you must have been exhausted even before anything else on top of day to day life.

Look after yourself and be kind to yourself.

I’m sorry to hear that. I hope you all feel he was well cared for and comfortable.

I understood your point, and you are allowed to complain about a shitty situation on MN, even if it is about a very unwell family member.

take care, I hope things become peaceful for you all. I’m sorry for your loss.