Wardrobes DH ICU

[Wardrobes123]

Just thought I’d create a new thread. To help us to keep track of what’s happened.

My DH was ventilated last week. We’ve had two calls to see him due to him being very close to death. He isn’t stable but he is still alive at the moment. All we can do is wait.

I’m not going to lie, I’m not coping at all. My mum has moved in to help me cope with daily life. We’ve spoken with the children and they know how serious it is. They are also struggling now with the youngest stepping back from schooling when she needs to.

I can’t think ahead. Just usually about the hour or two that we’re living in. It’s very surreal. And incredibly difficult. Doctors are very realistic about prognosis and survival, which is really hard to hear.

I am incredibly grateful for all the support we’ve had as a family. MN is a remarkable place at times.

@groovinpeanut - my heart goes out to you and your family and I’m so sorry for the loss of your DH, message me anytime X

@intheshadowofthemushroomcloud - for all your support and messages.

I have had several messages from other mnetters who don’t have their own threads but who are also experiencing this living hell it’s a horrible journey and we don’t know how it will end but all we can do is hope/pray for a better outcome.

I haven’t always had the energy to post, too fearful of jinxing things and generally the last few days have been very raw and intense. But I’ve read every message and I’m so grateful of the support.

Sending love to all who needs it ❣️

Thanks for all of the kind messages.

There’s been no real change here. No progress made but also no further deterioration (fingers crossed). He’s still here, still ventilated and still battling on.

Kids and I are finding our new pattern. Home school has been very hit and miss this week.

The only thing I’m struggling with is being the gatekeeper of DH. We’ve got friends/family who are lovely, but some of their requests for updates I’m finding really difficult to manage - I think it’s because they’re overly emotive about it. I know that sounds really cold. But one of our closest friends keeps asking for updates and tells me how she can’t sleep/eat and is panicking for all of us. I actually don’t know how to respond to that. It’s like I’m expected to give positive updates to manage everyone else’s mood - because otherwise it’s too sad?

It sounds callous but the support here is so much easier. There’s no expectations to manage. I want him to get better but if he deteriorates someone from MN can often send a message of support and talk me through it. I’ve also had amazing support from some individual posters and it’s so much easier without all the history.

I don’t mean to sound cruel, or uncaring, and I know that these people love and care for him too, but I’m just a bit overwhelmed with it all. Is that me being selfish?

@MeowPurrGrr - thank you for that list of things. I do tend to call in the afternoon and evening. Afternoon for general progress - evening just for my own peace of mind. I love the idea of playing his music. I’m going to ask the staff about it today. Thank you.

There were several posters who mentioned winstons wish. I’ve had a look at their website, and it helped me focus on dealing with talking to the children about it. Keeping it factual. They have a good level of understanding but also just allowing them time to digest what’s happening and learning how they may process it has been helpful. I’m really grateful for the recommendation

No not at all. What are you supposed to say to that? Right now you need to do what is best for you and your children. Maybe just say 'we will let you know if there are any significant changes'.

I'm so sorry OP. I can't imagine how hard this is

It’s not selfish at all to struggle with other people and their emotions. Different situation but when my dd got a cancer diagnosis it was so hard telling others and having to deal with their distress - it took emotional energy I needed for me and my little family. Can you nominate one friend / family member to do the updating for you?

One of the most valuable things I've learnt recently is that just because someone messages me, it doesn't mean I have to answer. Or, more bluntly, you don't have to reply to a message you didn't ask to receive.

I hope that helps you.

So sorry for you and your family. Maybe just tell the friend, "I'm too overwhelmed to answer all messages at the moment but I'll let you know if anything changes"

Also sending much love and good wishes. Have been lurking and keeping you all in my thoughts x

Bloody hell wardrobes, you are not selfish in thinking this. You're in survival mode, being all things to all people and doing a damned good job. Please take the small moments you can to carve out some head space for yourself. Feel the rain or wind on your face, sit in silence, listen to music, whatever eases you even momentarily

Sending all my good wishes to you all.
On a practical note, do you have someone or a couple of people who could act as your gatekeeper? Practical, solid people who are there for you and can be trusted to keep everyone else updated.
You're in the centre of what should be a one direction circle, and people can send support and help inwards, but are not allowed to expect support from you outwards.
You cannot manage other people's emotions.

@Wardrobes123

I think it’s totally understandable the way you feel. You can express this to us because by and large you don’t have to manage the majority of our feelings and expectations. You are the only source of information and contact and often in these situations, it all gets filtered and distilled on to you.
You need to be able to be selfish and identify your priorities for the days ahead. This is an essential survival tactic. Right now that’s keeping your shit together with everything going on with the hospital, yourself your immediate family. You need to sleep and eat and rest even if this is just snatched.

If anyone is making you feel responsible for their feelings or that you need to explain and share to a level that’s overwhelming or inappropriate now then don’t. If they love you they will be there on the other side and not take it personally.

Thinking of you and your family.

I can identify with being inundated with well meaning but exhausting requests for updates. I specifically avoided telling more people than necessary about the situation in an attempt to minimise calls and eventually had to ask people not to call as often as there was little change day to day and It was overwhelming to go over the same ground repeatedly. We could make limited visits (non cv) but each was followed up by at least 3 calls and messages which were energy sapping. Fortunately dc were old enough to share the load. Is there anyone who could filter the updates on your behalf?

Wishing you, your dh and family positive thoughts, and to all other mnetters going through similar crises.

Wardrobes, you are an awesome woman and there are so many of us thinking of you and praying for you. I will particularly be praying for your children. I can’t bear that they have to go through this awful time at such a young age.

Oh I'm so grateful for MN and all you lovely people. You just get it without me having to try!

Great idea for getting another person to reply and just confirm for significant changes. It will just take the pressure off. I have just been ignoring messages for the last couple of days, but I'm still getting requests.

@cakebaby - I like that sentiment. To just be in the moment. I have managed that at some points during the day. It's usually so fleeting and then you get that crushing, aching stomach feeling back. But I need to have those moments to help us all.

I need to step up more for the children too. It's all just been very overwhelming.

I also if you have a gate keeper who can do the updating for you. But even better just to say

"As you can imagine it's hard right now. I will update if anything changes, but I cant update more than that because of home schooling on top of everything else"

Then if they dont get that hint just dont reply. If they wonder why they can refer to your massive hint, or that's when you call in your gate keeper.

Hi Wardrobes. What you said we gatekeeper & dealing with other's emotions resonated. My DF died 18 months ago after a long torturous illness. He died at home & the last week was all hands on deck as you can imagine. We were really sick of all the phone calls & texts so we set up a WhatsApp group for all his close family & some select friends & muted it. We would post updates when necessary & it really helped removing all the duplication of calls & texts. We only looked at it when we felt up to it, in between carers and nurses visits.

You could put everyone asking questions in a single WhatsApp group. Explain you are finding it difficult to keep responding to so many people, tell them you will update once a day or every other day and then mute the group.

I did this when my mum was in ITU a few years ago. I ignored any comments on the group and just updated when before bed or when I had a significant update. When she recovered I deleted the group and never read any of their comments.

I hope you have some positive news soon

Hi.
Just sending you some un MN love and support

And some "virtual permission " to do whatever you need to do.
Sometimes, you just need a small reminder that it's ok not to cope. It's ok to be angry. Upset. Frustrated. A total mix of all those things.
Hugs. For anyone who needs some

Wishing all the best Wardrobes.

Totally get what you mean about the gatekeeper stress, it just feels like unnecessary admin that you don't have the capacity for. When DP was in hospital for surgery a while back two things that helped were 1) a couple of close friends who gave out news and updates to the wider circle, 2) a Whatsapp group which I added anyone who asked to, with the understanding that I'd only update if there was actual news. It contained quite disparate people who didn't all know each other and I found that helped ease the flow of messages from the more... persistent friends and family.

I agree with a what's app or private FaceBook group for updates.

I think that people who are expecting constant updates are, while possibly well-meaning, rather selfish too.
It's not your job to manage their needs - you have enough to do holding your own family together.

The circle of grief applies here - you and your kids are in the centre, and everyone outside of that centre circle should be giving you comfort and support. If they need comfort and support themselves, they should be seeking it from people in the next ring out, NOT from you.
So yes - find someone in the next ring out to take over giving out news. Or, if there isn't anyone, say that you will do one update a day/couple of days/ whatever suits you, or that you will ONLY update when there is a change, so if they don't hear anything, there IS no change.

I'm glad Winston's Wish proved useful - truly a great charity resource.

Whenever I hear about someone who is struggling to be a gate keeper I like to share the “comfort in, dump out” article. It basically says that whoever is most affected by a situation can vent to those less affected and that repeats out and out. So the person who is “worried sick” can’t help feeling like that but is responsible for choosing someone further from the situation to express that feeling too. You may like to share this with family and friends. I then find a simple reminder to “comfort in, dump out” will help most people get it. And those that don’t can find someone else to explain it to them. Hugs to you.

www.latimes.com/opinion/op-ed/la-xpm-2013-apr-07-la-oe-0407-silk-ring-theory-20130407-story.html

I agree with the one WhatsApp/Message group for updates. That's what I did with my mum, and to be honest, I kept the messages simple and undetailed.

'Hello all. Daily update shows very little change, we are probably in for quite a long journey',

This deflected questions and manage expectations, it worked well and even when small changes were happening, I kept it similar because I didn't have a blooming crystal ball!

I took up all offers of food and suggested that people checked in with the kids, or sent them something or distracted them and that helped. It also made people feel useful, as the helplessness is what gets everyone I think.

[quote Applesandpears23]Whenever I hear about someone who is struggling to be a gate keeper I like to share the “comfort in, dump out” article. It basically says that whoever is most affected by a situation can vent to those less affected and that repeats out and out. So the person who is “worried sick” can’t help feeling like that but is responsible for choosing someone further from the situation to express that feeling too. You may like to share this with family and friends. I then find a simple reminder to “comfort in, dump out” will help most people get it. And those that don’t can find someone else to explain it to them. Hugs to you.

www.latimes.com/opinion/op-ed/la-xpm-2013-apr-07-la-oe-0407-silk-ring-theory-20130407-story.html[/quote]
Yes, this is exactly what I was talking about too - useful link!

Really sorry to read this OP, can't imagine what a grim time it is.