I know what we all went thro with my wife Snowy in the summer was huge and maybe in some ways I have not processed that all yet, but I wonder if it ever gets easier to cope with watching a loved one be so ill?
Just sat at hosp now, Snowy had a real bad attack on sat, think it was stress of getting her dad home from abroad who has cancer and having op tomorrow, and all that goes with that, but again ended up in ITU and came within a whiskers breath of being ventilated again, and had it not of been for me telling them what happened last time and all the complications that came with that she would of been without question.
I feel so guilty moaning about how I feel, and how do I cope when I am not the one suffering? but at the same time I do wonder how many times I can pick myself up and pretend that its alright, how many times can I turn and look our son in the eyes and say ""Mums going to be ok"" and really believe it?, how many times can I pray for her recovery and still have faith that this time will be the last?
Oh I dont know, im just confused I guess and feel utterly helpless when all you can do it sit and watch as your wife struggles for every breath and watch her deterioarte before your eyes time after time.
Alex
14 Replies
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Hi alex, can I private message you somehow? Have something that may help you but would rather it not be on open space?
Hope your ok?
Lindsay
Hi Lindsay
If you pm snowy I will pick it up and then delete it, my mail account will reject all ""unknown"" msgs so will screw it up so thats why i did not select pm's on here, if thats ok?
Alex
Hey Alex,
That was no bother have done that
Lindsay
Hi Alex
My Mum always asks the same question what can she do to help me and she feels so useless at times when im really poorly but just her being there is all the support I could ask from her and I think Snowy feels the same as for your son think having his dad there to support him through the hell you have all been through this year is a big help I dont want to sound blunt but what you are doing is the best you can do to your wife and your son know you are there for them both through thick and thin please dont ever feel useless because you are snowy and your sons rock and they both know how much you love them both and do what you can when and as soon as you can for the both of them your a real gentleman and one of the nicest men I have had the pleasure to talk to just keep being who you are because you couldnt do more than you do if you tried because you put a 100% into your family take care Alex and dont forget about yourself were all here for you to to give you support for if and when you need it take care and sending hugs to you snowy and lewis xxxxx
My mum says to me its hard on her too seeing me struggle and I wont try to understand it... yes its not you going through it but sometimes it is easier on the one whos sick by the support of the ones we love and we know when we feel better where might not be obvious to others. When we get ill all that goes through my head anyway its breathing where you have the worry of seeing them struggle and when vented in ITU its an expereicne we dont underswtand as we dont see each other.. yes scattered memories but odd moments its not the same and sitting there hours on end. I try and live each admission in the moment, never try and predict when I will be home and will only upset me when I cant and through bad axperiences might not mean will happen again, every attack is different.
When Im ill in hospital my parents see it as there respite from being a carer (yes you are one!) they do jobs they cant do whilst Im around! Maybe adopting this attitude might work for you.
I think the best thing is to be honest with yourself and family, your son is strong he's old enough to understand. When Shes ill maybe yes shes unwell and is struggling but shes fighting.
Life is hard being asthmatic and being wish someone asthmatic due to the unpredicatability sometimes cant always face everything its on about just getting on with it.
Strap in, and hold on tight life is a rollar coaster...find the beauty in everyday, wake up every morning with the awe of being alive
well said Bizkid that make so much sense xxxxx
Oh Alex, I think Bizkid has said it well, life is a rollercoaster. I hope it will get easier but I can't say it will be soon It is awfully hard to keep going sometimes when you are the one trying to hold it all together and watching them go through so much.
Personally, I think the best support is being there and taking care of family/home life is appreciated even if they are not aware at the time. Some people find a diary/newspapers... or some way of catching up on events can help.
The waiting and watching is tough esp. when waiting for any news/progress. Your son may well be old enough to pick up what's going on, could be best to be honest to some degree at least.
Hi Alex, I suffer terribly when my son is ill so I know what you mean. It doesnt help that I am also an asthmatic so really do understand what he goes through. But as the others have said, the fact that you are there for her and your son will be of comfort to Snowy. I was often ill on my own (before I married) and that was pretty awful. Thinking of you.
My experience is not with asthma, but might help. For the last 10 years I have spent untold hours at A&E with my mother, who has dementia and keeps having seizures and needs to be watched afterwards to stop her hurting herself because she doesn't understand what's happening. i won't go into detail, but it is horrible and messy and heartbreaking. Every time I go home after one of these sessions I wonder if I'll be able to do it next time.
You are not alone feeling the way you do so stop feeling guilty about it. I'm going to give you some advice that was given to me. I didn't want to take it, but eventually I did and it helped. You really need to talk frankly to someone, preferably a counsellor or, if you have faith, maybe your vicar. None of it will be new to either of them!
I know. I didn't want to hear it myself, but in the end I realised that if I didn't have someone that I could talk to honestly I was going to be a basket case.
You have to realise that you are repeatedly being hit by extreme emotional stress and are not having proper recovery time. Your love for Snowy is never in doubt but that doesn't mean that you find it easy to deal with ITU, ventilation and all that comes with it. You are trying to be strong for Snowy and Lewis, but who is being strong for you? Who can you talk to about all the feelings that overwhelm you when Snowy's ill - love, fear that you'll lose her and other, more negative emotions that try to creep in when things are at their worst and you start feeling that you can't cope any more.
It isn't wrong to need a little help to learn to cope with the situation you and Snowy find yourselves in. You know, I hope, that you'll always find support here but maybe you need to learn what I learnt - it's ok to admit that you have feelings too, and that you'd like somebody to do your coping for you now and then. When you can do that, the pressure will drop and you'll be able to deal with it better.
You are SUCH a star, Alex, and nobody could have done more for their family than you did over the summer and I have no doubt that you'll continue to be there for Snowy and Lewis whatever happens.
Sending you many hugs, positive thoughts, and apologies for making you read this long rambling post.
xx
hey Alex!
I know from my personal experience, it is harder on my mum/friends etc than me, i have a nack of hiding the suffereing and being persistant with staying at home, but then my loved ones are watching me suffer and feel usless as there is nothing they can do, and cant help...but all i know is that the love that they share, the comfort they bring, the suprise little jokes that put a smile on my face (even when struggling) always make my day and remind me that there is light at the end of the tunnel! to be told daily that i am loved and that there is something unique and special about me and that they wouldnt have me any other way is what keeps me going!
and for my loved ones, i know it is imensly hard on them, but remember that you need to stay strong to, not only for yourself but for your family!
i believe that it will get easier, life wouldnt be how it is if we didnt have our ups and downs, every bad egg that a chicken poops out, a good egg will follow...and the longer it takes to follow, the better the result in the long run as it has had time to grow and strengthen!
I think you need to get support too because you can't help if you get ill too. My mum watched me get sicker and sicker over the last couple of years and she shared her concerns with close family and friends. I didn't notice how worried she was( She hid it from me), asthma took up all my energy. But I have good and bad days and I live in the moment.
My Faith helps me tremendously too and my Pastor sometimes gets all my frustrations, surprisingly he handles it too. My consultant listens to me too and he fights to keep me well too.I play my part too. So one big change I had to make is I don't take on unnecessary stress because I can't without getting ill. So Alex you need to get a support network too that helps you. I notice my family handle their own affairs without troubling me.
My prayers are with you all. Just be honest with Lewis because children know more than you think. My 10 year old Cousin told her mum( she had cancer) that the hospice is not a place where people get better unless there there for a short respite. Children are a lot more honest than most adults. I pray God continues to empower you and i hope this helps.
Gill
Hi Alex,
I would echo what everyone else has said about finding someone else to talk to - you can't do it all yourself although I think you are doing a pretty fantastic job, but despite this taking everything on yourself as you feel you have to is not good for you.
When my dad was ill (and I know that was different, because it was a much shorter time, didn't happen repeatedly and we knew the outcome - which was bad in one way of course because the outcome was a horrible one but on the other hand there was no uncertainty to deal with which can be just as stressful) - my family all had each other for a start; my mum said she didn't know how she'd have got through without me and my brother, watching my dad get more ill and not even realise that he was ill. But we're in our 20s (and there are two of us), obviously you can't put the same thing on a 13-year-old though I agree with others he probably knows more about what's going on when she's in ITU etc than you realise.
I also think though that for us just having each other wasn't enough. I know I really appreciated having friends to talk to who were outside the whole thing. My mum also found talking to the chaplain at the hospice very helpful - he was a really great guy, they didn't even talk about religion especially but just anything, and he understood what she was going through because he sees it a lot. It might be helpful if you could find someone like that, outside the family, someone who knows what it's like but doesn't know Snowy so doesn't have their own things to deal with watching her be ill. I think you might find it helpful just to be able to talk.
Anyway sorry to ramble on like that, I know my experience is different with different kinds of stress but I can sort of appreciate it from watching someone be very ill and not being able to talk to them. And I did just want to say what a fantastic job you're doing as a husband and father and what a nice guy you are. Snowy and Lewis are so lucky to have you.
xx
Thankyou everyone,
I will read the replies in more detail later when I have some quiet time but thankyou anyway...
Alex
Now read them all in detail and thankyou.
you are all right about someone else to talk to, when things were really bad in the summer I did see the ITU counsellor and it helped a lot, infact I would not of got thro it without her help and she said I could go back anytime as its not just the ""now moment"" that she helps with.
When we get back home after this battle I will go and see her again, also as a lot of my feelings have changed from then, with time going past etc... so might be usefull to revisit it all and talk about how I feel.
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It is awfully hard to keep going sometimes when you are the one trying to hold it all together and watching them go through so much. 
Coping with Pred....how do you all do it?
Put Up With It
please help me get my head round this....
