Just wanting to offload to people who “get it” and have a rant and shout! Experiencing the real rough end of caring for my husband at the moment and hes taking it all out on me!
I am trying my best to get his nutritional state up, his recent bloods whilst some have improved, others are lower - such hard work when half the time he struggles with food, sometimes being real awkward and taking it to the extremes 🤦♀️. My husband is taking supplements (good job!)
Some days I am at my whits end with him and I feel i could quite easily scream my head off at him (obviously I dont!) he probably wouldnt take any notice anyway!
Some nights he has me up until 2 or 3am, he wants to talk, I sit and listen. Sometimes he would rather eat at night than during the day, im making food at midnight to get calorie intake up. Life is completely upside down and hardly recognisable at times….
This disease has turned my husband into a person I do not recognise some days - totally the opposite of who he actually is! He’s my soulmate, the love of my life, the man I adore, some days he speaks to me terrible, YET, Im still here fighting every step of the way with him, right by his side. Some nights when he does manage to sleep I just cry, its a real mixture of emotions, frustration, sadness, anger, why did this have to happen? guilt for feeling this way etc. Then I have to make myself look all positive again for the sake of our 2 beautiful children, but deep down inside im heartbroken at whats happened & frightened of the future…….
Sorry for the rant!
Take care all and keep fighting
My very best wishes
K
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WildHorses101
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K....love,you shouldn't have to put on a front for anyone, im not sure how old your children are,if there younger thats a different matter....I'm not a carer anymore dad passed last year,but was different, from parkinsons disease...
I'm the one in or was in your husbands position.....
If he wouldn't take any notice, then shout and have a rant ....it may make him sit up and take notice!!!.
Is there any time that you have for yourself?. You desperately need that space to yourself.....otherwise you will make yourself ill.
It must be so difficult to see the person you loved ,still love alter so much ?.
I certainly realised as I slowly became more well,that I hadn't treated some folk very close to me ,very well. Its true,that we can hurt folk close to us the most.
I don't have many regrets ,as that doesn't help in the long run.....but that is 1 regret I have😌...ive tried my utmost to make amends.
Dealing with the nutritional needs is very difficult at times with liver disease....
Ive also struggled, and I've never regained the weight i once was.
I take it your in touch with dietician, sounds as though you are, if your husband is on supplements.
I'm sure others will be along to provide a listening ear.
My husbands been so badly let down by consultants and awful care, there was no dietitian input until very recently by which point were now chasing trying to put weight and muscle mass back on, which as youre probably more than aware is a difficult task! My husbands Liver journey has been horrendous!
I feel so alone, and, feel totally responsible for my husbands care, im desperately battling with Consultants & services to help (attitudes are awful to say the least) its like theyve all given up, however, I wont give in or give up on my husband as difficult as it gets! Our children are distraught at whats happened to their hero dad and im trying to support them both through all this too.
Some days feel hopeless, some days are brighter, some days my husbands back with us, other days hes ‘vacant’, some days are good moods and hes his old self, other days are really tough when hes sharp tongued at me and ive spent time cooking meals and he just wont eat them! I know its the disease and its not him but it still really hurts to the core! Its heart breaking what we are all going through and the stress is unreal!
I am supposed to have 45 minutes per morning to myself….I dont get that time to myself, If I am not physically doing something for my husband or someone else then im on the phone chasing up services/people/consultants/Drs, prescriptions/Pharmacy etc or I am receiving calls from services and theyre always during that time.
I dont matter, I need to get my husband the very best possible chances and whilst my husbands fighting, i’ll fight them all the way!
Well love ,don't ever say that you don't matter......Of course you do,your the 1 trying to keep things all together. Some of the pressure has to come of yourself, its to much.
And I fully understand how hard it can be.....dad would have days like that,where some days no conversation at all....but as I said dad had advanced parkinsons disease.
But I wanted to care for dad......he was a great dad.
Has your husband got HE?...
If so that can be the disease talking......thats not really your husband saying those things,but that doesn't stop you being hurt,I fully get that.
Attitudes......erm,well I've come across some stigma that you wouldn't expect from medical staff......but also some marvellous one's.
Could members of your family help out? I know it sounds simple,but would any of them be able to care for an hour a day,just for you to meet your children for a coffee.....and someone who your husband is comfortable with.
It all depends i suppose if we get on with them or not,it certainly doesn't always run smoothly does it🙄
I admire your determined attitude.....that will hold you in good stead.
It takes time to rebuild muscle mass as ive found out.....my arms were as thin as my fingers nearly.....
But it does comeback, but just slowly.....but we also need some gentle exercise as well and also in tandem with usually a high protein diet....but your dietician will have discussed that with you im sure.
When you mentioned about making food in the night,can you not just have some easy snacks to place by the bed.....? Eg ,flapjack,I know my liver dietician said jaffa cakes were good for that...
Although I was always up early usually 5.30 to have some early breakfast.....I stuck to it.
I feel like its me battling the liver disease on my husbands behalf, he also has type 2 Diabetes and on insulin since Aug last year plus the liver disease is causing an Oxygen complication called Hepatopulmonary Syndrome which lowers his oxygen levels when sitting/standing so he requires high flow oxygen concentrator, hes in a hospital bed in our lounge and I sleep on sofa next to him.
The curative path is transplant, this will cure the liver disease plus the Oxygen complication, however, we have to get him built up enough and strong enough to endure such a huge operation. Will not give up or give in fighting to get him improved. I was up until 2am again this morning with him, I have to keep reminding myself wheres there life theres always hope and were all clinging onto that hope ❤️
Its just awfully heart wrenching seeing the one you love going through all this, we have to keep moving forward and taking the tiny wins each day.
Thank you for taking the time to read and respond Chris, much appreciated
Hi k. You rant as much as you like. You are one of the angels that keep us going. My husband does the same for me as you do for your husband. He is also my soul mate etc. at times I am nasty to him and it’s pure frustration. . He does not deserve my anger. I try very hard to do as much as I can but it’s so difficult. I take it out on him. I always apologise sincerely but I shouldn’t have lost it. Without him I’m nothing and worry about the stress he is under just like you. If your husband is anything like me then he has great deep love for you, your his rock and will gladly die for you. He will hold you in high regard . I say all of this to my husband and more. If your husband telly you he loves you says sorry and means it , it’s his way of coping. This disease robs you of who you were both mentally and physically. I recognise it also does the same for your loving partner. You. So you rant all you want no guilt as you are an amazing person trying to do the best you can with what you have. Recognise he is as equally as nothing as you. You stay strong and know lots of people love, admire and thank you for the care understanding , love and energy you put into everything you do each day. I understand what you’re going through from the other side. I don’t know what else t say to you, other than thank you. Hope some of my words help you.. what we say and what we feel are different. Your rant has given me a little kick , thanks for that and I will try harder to show my gratitude to my husband. Regards Dee
Thank you for taking time to respond, its so greatly appreciated!
Thanks for your words too, it has given me a slightly different angle (from my husbands perspective) at what probably goes on inside his head! I know its not really him and its the liver disease and toxins thats doing the talking, but, it gets so hurtful, heart wrenching and difficult at times when im trying so hard to build his strength back up and cooking high protein meals for him to not eat them. It feels like theres a ticking time bomb running, im terrified each and every day i’ll end up losing him to this awful disease before he gets chance to ask for transplant assessment 😢
Take care, thank you for your support, look after yourself Dee
I hope you got something positive from my words. I could feel you hurt anger and frustration. You keep ranting any time you want to talk is ok with me, your story will and is helpful. Yes our bodies are full of nasty toxins and when I lose it I know it’s not me. When you have a strong marriage with a wonderful person who cares for you and has had to take on the disease just like yourself. It hurts both people equally but you the carer are not able to get away from it. I personally get so exhausted I keep going to sleep and feel good after sleep. But you on the other hand sit and worry pick up all the jobs on top of full time caring . You must be amazingly strong. I take my hat off to you. Keep well try to get some quality time to yourself. I know easier said than done. Remember You are not alone
Everything has stopped Dee and our lives are on hold, weve lost so much as a family. Our plans for the future, holidays, hopes & dreams gone and I feel so flaming angry and hurt. I lost my identity as wife overnight and became carer & nurse for my husband. Ive given up everything. Tonight has been tough again, he’s had a go at me for asking him to have a supplement drink, he just turns into this angry man who is polar opposite to who he actually is! I calmly said I do not deserve to be spoken to and treated this way and I needed him to drink the supplement to help his muscle build back up, the look in his eyes of sadness 😥 i said come on wheres your gorgeous smile gone, he smiled and drank the supplement.
I used to enjoy going fishing, that was my hobby with my dad, son, 2 of my dads brothers (eldest and youngest brother) and on occasion my husband too, we had wonderful times and I really miss not getting out fishing. My one Uncle passed away in March 2019 (the eldest brother) then exactly 16 weeks later my dad passed away. I just feel since losing my dad, my worlds just shattered to pieces around me and im scrambling around trying to put some pieces back together again without much success. I so wish my husband could just eat properly and regain weight/muscle mass he lost
I know we are in the same boat. We have the means to go do anything but illness stops that happening. I’ve lost all muscle and lots of weight, along with my teeth snapping off and lots of hair loss. Not a pretty sight. Not so long ago I was waiting to die and accepted that. My eyes were dead and it hurt to look at my hubby as I know he was badly hurting. Then I got tremendous pain in my joints was unable to walk and needed 24 7 care. Pain was unbearable. Drs said I had rheumatoid arthritis in all my joints and was having a flare up. Morphine etc did nothing so he gave me steroids and within 24 hours I had been transported back 3 years. Two months on still have pain but I’m getting back to being me. I have more energy etc and don’t look like death. Still not pretty but mentally I’m good. I have at least 3 autoimmune diseases along with PBC. And your hubby may have them too. Sounds like he is in a dark place, he can see and feel your pain honestly. I wouldn’t eat either as it tasted horrid I felt sick and got pain after eating. I have a fantastic team of consultants looking after me. I say I feel sick they give me sick pills that work etc. has hubby opened up to consultants and liver nurses. He needs to tell them what’s going on. I’m sure there is a medication to help his moods . You need help as you at the end of your tether. You need support speak with liver nurses, and your Dr needs to listen to you and offer real support not jus talking either. You don’t want to make yourself bad. Depends where you live and what is on offer. I’m lucky I’m very vocal take no crap and have quite a bit of knowledge about my diseases . If people don’t listen I start to quote nice guidelines. And research papers . I’ve done advocacy so I know the ropes. Wish I could help you other than listening and empathy. Cry shout scream and kick. I personally swear and if it slips out in public I say “ oh sorry I have torrents “ naughty but that’s me. The feisty old bird.. stay safe keep well
This is alot of the issues, caused by lack of care and disgusting attitudes from Consultants! One said to hubby “if we were to send you now for assessment looking like that, you’d blow your chance”……..I was absolutely fuming! Alot of this has been caused due to lack of input from relevant teams! 😡
I had a right barney and like you, took no crap! The consultant was shrinking in his chair listening to a few home truths…..he offered to buy me a coffee! As if that was going to put right whats happened with sheer lack of help or care! My husband and I have lost faith in them, theres been very little help or guidance unfortunately, no Liver Nurses either!
Disgusting. And terrifying. No wonder you’re both in a state. Feeling of worthless come to mind. Put in a complaint. Where a-bouts are you in the count, surely there are other hospitals . I’m lucky we have the top liver hospital and staff in the country. Mind you they did say I was too old for transplant so I will just keep taking the tablets. I feel your frustration. Had a negligent Dr who because of his ego and not accepting he knew nothing and therefore I suffered, so I sacked him and was lucky enough to get a top guy in his place. I have been getting blood transfusions weekly for nearly two years and now with the right people I have not had one for 6 weeks. As I always say. This is my life and if I’ve got no quality what is the point. With liver disease you either turn a corner or don’t. The liver has 500 different functions and I think at times I’m working my way through them. I use humour quit a lot to cope and laugh as much as I can. We should maybe talk privately if that’s possible. Open forum isn’t my bag.
Morning Darling lady, I most definitely can relate to some of what you are going through my husband was so very similar. The first person who put it into proportion for me was when I went to the Doctor, I asked for help for me, she said I was a cater. I never until that moment realised…I explained my world had been turned upside down, my husband had alway been my “knight in shining armour”. I had lost him and was confused and lost myself with our complete role reversal, he had always taken care of me and there was I doing that for him. But I loved and still do very much, I stepped forward taking it all as it came. We never planned for this my world was a moving nightmare but I loved him so I took it and tired to carry on. We were up against some strong opinions against him as was ARLD. We had 2 years of getting no where, waiting to be seen, just phone appointments and blood tests month on month. I could see his results getting worse, he had a fibro scan which confirmed his fibrosis was stage 4 but still no diagnosis or face to face appointment. Symptoms progressed getting worse, muscle wasting, I was watching my husband disappear before me. The HE changed him, although I didn’t know that was what was happening, I was deeply upset I was losing my man and seemed helpless to change it. I had to find ways to get him to phone as his symptoms grew worse and I never knew if he had in fact called as I was at work. Like you food was a battleground. I could never be certain what he told me was so, as time went on his memory was not good. I was lucky to have a 19 year old son who could confirm that I wasn’t going mad, as my husband was in denial. In the end I convinced him to let me have access to his medical records so I could do the phoning and be in on the conversations. Things started to come to a head last summer as while on holiday I noticed red blotch marks all over his back. We phoned again on our return and he was given yet another blood test and although referred over 18 months before he had still not seen anyone except the gent who did his scan heading for a year prior. Finally after this blood test he was called in to see our family Doctor F2F, over 18months on from his blood test and the urgent call on that day to say “do not drink and if you turn yellow call 999”! Our Dr was amazed he hadn’t been physically examined yet and arranged a urgent MRI. Two weeks later he had the scan and was called y our GP be told he had cirrhosis and she was going to call his consultant and get him seen. Which she did and then we where hit by what felt like a train as a consultant was blunt and did not spare feelings as she told us know, uncertain terms that he needed a transplant. So every year since his fibrosis scan, we had, it confirmed that he had decompensated cirrhosis. That was 2 1/2 years since the very first blood test. Only then did we finally see a dietician And I do have to say that now though he’s had his transplant, but he got to the point where he was only given 50% chance of living is six months to a year. Once we run to the QE Birmingham, we have the best care my husband is the man I knew by six years ago I have him back. Try not to lose out my lovely as you never know what is around the corner. Message me any time you need to rant as I know each journey is different but it’s helpful to know that someone else can relate to where you’ve been and are. Sorry to have gone on so much. Wishing you much love and strength. Xxxxxx
Sending you huge hugs, you very strong, brave lady 🤗 you are amazing! Dont forget that. It's the HE speaking, he will forget what he has said but you cant. It hurts , I know. Can the gp advise or hospice help with some home help for an hour or so a week? Even someone just to sit with him. You need it for your sanity. You are, after all, saving the NHS money by being an excellent carer of your hubbie.
Our stories are so similar. I’m sending good thoughts your way on this emotional, shattering journey. I too feel quite lost at times. People help inc my friends but all the disappointments and the frustrations is something you know only when you live through it. The sitting up until the early hours happened to us too. You kind of think oh well at least he’s talking, but it’s all rubbish and drink fuelled so now I don’t bother (bad wife I know 😀).
For the nutrition there are some good drinks on Amazon such as ensure / fortisip that can keep nutrients and protein up. Sending good wishes and do pm if it would help.
hello lovely people- I have read this post and replies. I am so humbled by all your experiences and that you keep on going with care and love. I am also a carer for hubby and relate to all the experiences here. Especially the total change in personality with HE and being “another person”. I am so frustrated at times, and sad, I miss the man I married so much. My kids really miss their dad. I keep going, keep working, looking after kids and him …
I recently joined a liver trust carers support group- meets monthly- its been a brilliant group you can talk (great for me as not much time to type on here but I do read it all). If you want to join send email on support groups to British liver trust. We need all the support we can get- to keep the people we care for going…. And that is really hard physically and emotionally. Keep going you are all amazing
Thank you for taking time out to reply, even grabbing 5 minutes here and there seems a miracle in itself some days! This is such a heart breaking and difficult journey to be on
Im doing the job of probably 10 members of staff, I sometimes wonder how on earth im managing, yet, somehow, I just am.
The support group sounds good, its nice to know theres others to talk to who are in the same position and fully understand everything
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Coming home for the final time
His mood swings are too much for me 😞
What do I do? 
