I'm having a rough day today. I got really overwhelmed last night with everything and usually wake up feeling better but I haven't!I'm so tired of caring for everyone, even mentally, when it's not physically. I keep feeling tearful because I wish, for just 1 week, someone would care for me this much!
I'm lucky my husband is stable, and not as poorly as so many on this forum. I'm truly thankful for this. The consultant was very straight with him last time, that although he's lucky to be so relatively well, his numbers and scans really are saying otherwise. Because of this she is still keen to keep him on the transplant list, although suspended. I feel like it's a ticking time bomb, and it's just SUCH hard work. He's not "well" by co-incidence. It's constant - watching diet, making sure his meds don't run out, juggling his energy with work/social/family, and doing as much as i can by myself. Everything he does has a payback - something else has to give. He hates me fussing over him but that's what's kept him well. Last night I fleetingly thought ill just leave him alone for a bit and wait for him to realise but then I felt mean, as if I actually want him to get sicker?
My youngest has ended up with emotional problems and has taken up hours and hours of my time trying to work with school/SEN over it all. It's mentally exhausting and I've had to do it all alone without my husbands support.
I guess I'm just tired. Ive been trying to get some of my old life back, taking on things I had to drop when he became ill, and I dont know if I can keep up. How do you measure that when you sit in with the transplant team and they discuss how my partner is, and everything appears so well managed and stable?
Have a nice day everyone, I might just have a day where I wallow in self pity a bit, maybe that's what I need 😅
Ewife
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Ewife
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Hi Ewife. Your husband is a very very lucky man. You are doing a pity party at all. You are probably exhausted with all of it. And you are doing a FANTASTIC JOB with all of this too. Time for you to do some much needed ME time. Methinks you should be doing more ME time too. Chill, relax and try to set aside some time for yourself every single day with what YOU like doing. A hobby or whatever. You need a break and you DESERVE a break.
And I applaud you for being such a kind, caring, thoughtful and selfless person. Your family are extremely lucky to have you and I hope that they realise this too.
Hope you have a much needed rest today. And I wish you well with everything.
Thank you for your kind reply. I do try to make time for myself a bit, but I think that's what I was trying to do by getting back to my old things - but I'm just not getting enough time for it all - and I think that's what I'm partly feeling overwhelmed about. I can't just drop back into my old ways because life has changed and I'm too busy for it all.Take care
Sorry you are having a “bad day”, it’s ok to have them and those two small words don’t sum up the actual feelings.
The focus does seem to be on the patient, and it is easy and well meant for “us” patients to say don’t fuss. It is a long grind and it is bound to take it’s toll on the carers. In our case, we found the liver team were very aware of the carers role but don’t push it. They were/are very approachable and they know for the patient to get the best result that a strong “care package”, both practical and emotional, is essential to the best outcome for the liver sufferer. They are happy for you to have a quiet word with them and they are best placed to give advice on the support you can receive and how to help you manage your patient. As the patient he can help you, for example I started taking over my pill regime (under my better halves supervision of course) in an effort to feel I was taking some control of my illness, being more productive and ease the minute by minute chores my partner kindly performed. Taking an interest in my diet, meal “planning”, prep and cooking was another chore shared/lifted. Joining the forum and signing up to the pre/post transplant zoom meetings with other patients and carers really helped me as the patient and my partner. It kept things in perspective and allowed an insight into how other people were/are dealing with the daily grind. Some good tips, laughs and sad stories make the hour zoom call very helpful.
Hope you feel better soon and good luck to you both.
Thank you, I enjoy getting responses from the "other halves" - it puts a good perspective on it all. I think one of my battles is that he would rather forget and pretend it's not there. I respect that he doesn't give up and fret and get depressed over it all. But it makes my job so hard. He doesn't need a carer in the sense of helping put shoes on, or getting dressed etc but the constant little things - putting the bins out, running to the shops, fetching something from upstairs or getting up to the kids in the night - for nearly 3 years now. And then the mental side, keeping everyone going, pretending I don't mind doing all these extras, planning our weekends so that he doesn't feel bad/notice we're not doing things the kids or I would like to do.I keep telling myself it will either get better or worse. I don't think his body can carry on forever as it it - I can see its much more worn out than it was when he was first diagnosed.
Hello Ewife, Im sorry you’re having a bad day. It sounds to me like you’re getting burned out. You’re doing so much for everyone else as well as trying to have some time for yourself. It just gets too much sometimes. You just can’t do it all.
When I was caring for Mum I had my husband in the background keeping the show on the road and my grown up son delivering meals to us. You haven’t got any of that.
Are there any ways that you can drop some of the chores or hand them on to anyone else? People often want to help but don’t know what to do. And we’re not always good at delegating because things won’t get done the way we like them. I know it can be hard to let go because you’re juggling and you worry that if you let go of one thing the whole lot will crash. Could your husband go somewhere for respite and you go on holiday on your own or with the kids?
Sorry, I’m in Mrs fix it mode and you probably just needed to vent.
Around my way there is a support group for carers, they have often got tips and know how to access help.
Thank you. I'm feeling better today. You kind of need to give yourself those days don't you - own them ! Husband has concluded that he's been pushing himself a bit too hard (his feet and legs are quite puffy) and it makes me feel a bit more restful that he's looking after himself better. It's a hard time of year too, as it's 2 years in July since we had 3 bereavements in 6 weeks. I hadn't realised I was upset about this until I was watching a video and it made me burst into tears, and it suddenly made sense. I just didn't expect it 2 yrs on, but I guess it will always be hard. Lots of triggers this time of year. Kind of realised that I can't fully go back to my old life too, even if I physically had the time, mentally I can't take pressure in the same way yet!
Having been where you are I completely understand how exhausting it actually is, managing the house, bills, full time work, husband, appointments, and everything in between it is not only physically draining but mentally exhausting to.
Take some time for you, and you are not been selfish you need it. We can’t continue to care for others if we don’t care for us too.
Sorry to hear you are having a tough time. I have decompensated cirrhosis and I am a full time carer to my son who has serious medical needs. Yes, it can be hard at times especially when you’re sick. I find meditation helps greatly.
A carers support group I think would work well for you. There will be like minded people there who can relate to your personal situation and help you.
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Coping with what could have been
Sorry but may I have a moan
Can he have liver failure already
Cirrhosis and disability. 
