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.

My DH has just died, I set up a what's app group with all the family in which I just updated with news as I got it - stopped fielding all the calls, texts etc

Hope he turns the corner soon x

So sorry to read that, @notapizzaeater - and (((hugs))) for you and your family :(

@ThumbWitchesAbroad

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.

Sorry we cross posted. Great minds think alike.

@notapizzaeater I'm so sorry for your loss, life can be incredibly unfair can't it? Thinking of you and your family. Do you have support too?

@Applesandpears23 - great link - I've not heard of that before. And I've probably been guilty of falling foul of it before too. It will certainly make me think twice when dealing with friends and family difficulties.

A whatsapp would be great but our friendship circles are quite odd in that we have little groups of friends. I also haven't put anything on social media, again to avoid a constant stream of messages. I'm going to ask my mum to deal with people for a bit. She's still here keeping us all going and being brilliant.

• that should read we have little groups of friends who don't really know each other. I'm not sure how they'd be all lumped in together. But I'm going to give it some thought over the weekend as to whether it would work.

@Candleabra

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.

Great advice here - definitely get some one to be the gatekeeper

Thinking of you x

I second nominating a gatekeeper. Could you send out a 'send to all' type message to anyone checking that there's a lot going on and while you appreciate their messages, it would benefit you if they didn't message, and rather waited for updates from you? I'm sure they'd understand that you have so many people checking on you and your DH that it's a little overwhelming, and that you want to spend your time with the kids instead of replying to so many messages all the time? You're definitely not being unreasonable to not want to deal with the people/messages, it can be so overwhelming even though they mean well.

I'm so glad to hear Mr Wardrobes is still fighting, there's still hope. Thinking of you, OP x

So glad things haven’t deteriorated @Wardrobes123 and it’s a sensible decision to get your mum to deal with updates for friends etc.

@Wardrobes123

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?

My sister went through the same thing last week , unfortunately my brother in law died .

She also found the constant phone calls / messages very difficult. My brother acted as gatekeeper for her . She relayed information to him and he updated everyone .

Wishing you all the best and sending you positive thoughts .

There is a web site you might find helpful, I used it to help a good friend when her daughter was dreadfully ill with cancer and everyone wanted news and to know how they could help

Its called www.lotsahelpinghands.com
It is American, but its set up that someone (maybe your mother) writes a post describing what your page is for..Supporting Wardrobe and family while DH is ill
You then get a link that you can email or whatsapp or text to anyone so that they can connect to your page (you can also put in privacy controls so your Mum can ask for details and thenapprove anyone who tries to connect)
You then can post updates on the site and also request specific help on specific days and times
The jobs you want help for can be directed at a specific group of people if you want, so help with walking the dog can go just to the approved group of dog walkers...
People on the page can then sign up to help with what they want and when they want (dropping off dinner, grocery shopping, dog walking, going for a half hour walk with you or dc, collecting laundry washing drying and returning it etc)

Then anyone who contacts you directly can be told to go to the web site for all information, full stop.

If its something you would like to consider, but dont have the bandwidth to set it up, I would be happy to help with creating a template (if you want to trust a random woman on the internet) and then you can tweak it from there. Just PM me

Sending hugs

Sending positive thoughts for you: just wanted to say I think there is a way you can make a WhatsApp group where only you/admin can send messages so you can avoid all replies and it wouldn't matter who was grouped in together x

You can enable this feature by opening Group Info by tapping on the name of the group at the top of the conversation. Then tap Group Settings > Send Messages > select Only Admins. This setting is now being rolled out to all users around the world on the latest supported versions of WhatsApp.

Still thinking of you Wardrobes! You don't sound remotely uncaring or cold. You need to remain strong. You don't need people contacting you in tears right now needing updates. I had a lot of that when my husband was ill, made worse by the fact that he is from another country and that there was an 8 he time difference, so they contacted me at the worst times. I updated my FB page every day or every other day so that all my friends and relatives knew what was going on. Then I nominated a friend to liase with his friends via a what's app group and with his employer. His employer was responsible for updating all his work friends. I got my step dad to liaise with his family abroad. You definitely need to delegate. You don't need that added pressure in your life right now! If your mum is still with you, put her in charge or fielding calls during the day too. Keep strong. Keeping everything crossed for you.xx

Wishing you all more strength.

It's very hard keeping people (family and friends) updated, especially when you don't feel up to it.

There's always an ott person who 'isn't sleeping or eating' and for some reason feels the need to tell you that.

Whether you set up one group chat or assign one person to fill people in, do what makes life a little easier for you. You've enough to be dealing with. People who offer help accept it and let them do the things that you are finding difficult.

Still here praying for you and your family.

Nothing to add to the great advice from pp, but to echo, you don't have to do anything. Just look after yourself and your children.

Just to say you can have a WhatsApp group where only you can post stuff- people can reply privately but not to the rest of the group. So you could just post an update on there as and when you felt able to and also say you aren’t up to responding individually but thank everyone for their support yadda yadda.

My feeling is anything you want and need isn't selfish. Some people need to make it all about themselves. Some people don't know how to communicate. I'd be very tempted to be very blunt and frank.

Jenny, so lovely to hear you care so much but with respect he is my husband and you are being too demanding. I'll let you know when there is things to tell.

I was coming on to add my support and best wishes to you @Wardrobes123 and having read the thread I remembered hearing about the "Comfort in - Dump Out" circles in Ring Theory and have seen that @Applesandpears23 already suggested that.
I would also go with the suggested message that you could send to as many people or as few people as you wanted saying that you are overwhelmed with the amount of well wishes and thank people for that but if someone is looking for an update, you will be posting an update as and when you have one. No news is good news. If you have any updates to give you will but until then, it's radio silence.

As for the friend who can't sleep for worrying, that's not your problem or issue to resolve. You might suggest that she see a doctor for her anxiety or that she try meditation to help but you have enough on your plate for the time being.

Hopefully you'll have some good news to report to whoever wants it soon enough. Best of luck to you all in these very difficult times.

My heart goes out to you. I’ve been thinking of you lots. I’m so glad he’s stable and I hope his body is now getting the rest it needs. Not selfish at all, you’re trying to survive and manage your own emotions and support your children. You’re not alone in feeling like that I know my best friend felt very similar when her husband was critically ill. I’d second putting someone you trust in charge of updates and telling people that’ll you’ll update them if there is any change. You sound like you’re doing a wonderful job of supporting your children and ensuring they have the space and support to process what’s happening. As someone who has been through having my Dad in intensive care with a very slim chance of survival when I was a teenager, I can’t tell you how important that is, your children are very lucky to have you. I’m glad you have your Mum there to support you too. I was lucky and my Dad fought against all the odds and although it was a very long road to recovery he survived. I’m keeping everything crossed that your husband is getting the rest he needs to fight this. Sending you all lots of love

Seems I'm a bit more hard hearted than others while trying to care about Wardrobes .

So sorry for you and your family notapizzaeater..

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?

I agree with everyone else.

Set up a system so that you update ONE person and they do everyone else. Doesn’t matter how you do this as long as it’s only one person and you can do that by text if it’s too hard to phone.

And you stick to the “ comfort in dump out “ system. The only people you need to support now are your kids and you. Full stop. No one else.

I know how much energy it takes to deal with everyone else’s emotions - it’s too much

DHs parents / best friends / need to be supported by his family / friends . Ditto your non eating / sleeping friend, she needs to lean on her partner / family / friends.

You need all your energy for you and the kids. And to support your Dh when he’s off the ventilator and they reduce the sedation and he starts his journey to recovery.

You said "no progress", but he's been making it from day to the next, and that's progress in itself. Keeping you and your family in my thoughts

I have been thinking of you Mrs Wardrobes and Mr Wardrobes of course. I am so pleased that you are getting the support here that you need. You’re an amazing woman. Sending love and strength to your family

@Wardrobes123

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?

I get that . My DH had/has cancer and managing his friends during chemo in 2019 was really hard. They wanted to visit, wanted daily updates, needed to talk about how they were feeling all the time. Some weekends we had 4 lots of visitors, they all came to the hospital etc

Sending you my prayers xxx