British Liver Trust

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Need help with decision

Hi, I've been struggling with whether to take a leave from work to be with my father during his last weeks/months. I need help with this decision because I know putting all your time into a very sick person is not always good for you. I thought work would be a nice distraction but now that I know the end is near I just want to be with him. I am just so sad and think about him during my work day. I don't know what to do.... the leave would be unpaid and depending how long I take I could manage financially. It's just a matter of if I would emotionally be okay being with him because I don't want to get depressed. And when I go see him or talk to him I get so sad.

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i think the best way to think about this is how you would feel if you did not go and spend time with him. you say that you thought that work would be a nice distraction but now that you know the end is near you just want to be with him. i think you have answered your own question in saying you just want to be with him. it doesnt sound to me as if work would be a nice distraction as your saying that your so sad and think about him during your work day. so its not a distraction. do you think that you would get depressed when he has passed away if you dont go and spend time with him now? at least you will know that you were a comfort and did not leave him in his last hours..its going to be painful either way. i cant make up your mind but i would say go and spend time with him. you can affort it financially. your sad now and your not seeing him. its only natural to get sad when our loved ones are dying. i went through it with my mother and im so glad i was there for her. i used to put my hands through her hair and say "its grace: and she was so comforted knowing i was there. but thats me and i would never have forgiven myself if i had not been by her side. she put me first all my life. so i wanted to be with her. im so glad i was with my mum. it will be 6 years on the 8th of this month. there is no escaping the pain if you go or dont go. either way its going to be painful. GO. love grace and god bless you dear. xoxo 🙏

What wise , lovely words from Grace , you won't get this time back and perhaps spending it with your dad will be a great comfort and support to you both , my thoughts are with you x

This is such a difficult decision. You are already thinking about him while at work and you are sad. You want to be with him. However, it sounds like you are concerned that if you are with him all the time you may become too depressed and not be emotionally able to handle the situation. Do you live in the same town as he does? Is there anyone else (family, friend, etc.) who could also help? Could you just cut back on your hours; thereby, still having the work distraction to some extent? Or maybe you could take a leave, be an uplifting force in his life, and help him finish doing some things he always wanted to complete? You will have to weigh all the possibilities and decide what seems the best option for you. I wish you well. Whatever decision you make remember that it was the best decision you could have made! No regrets, ever...

With love,

Sharon

I agree with grace111, your sad when you don t see him and sad when you do.They are both going to be painful.Maybe ask yourself:do you want to be there when he passes away?, will you wish you were there? Or do you want to work(less hours if you can,to be with him more? The passing of a parent(in my experience) is something that is with you for the rest of YOUR life. Think of every aspect and i m sure you will do what's best for you both.Thinking of you at this extremely difficult time TC Jenny xx

I can only tell you from my experience I am in very bad health myself and I had time off work to be with my father I was with him for 6 hrs a day every day in the last ten days naturally it was very upsetting but I wouldn't have had it any other way I was the only one there when he passed I was able to tell him how much I loved him an he gave me signs that I will never forget he passed with alzeimers I don't know where my strength came from but I did it . You have to do what you feel is right for you,

Hi - I've not posted on here before (joined because I was having symptoms and tests on liver,and still am) so I don't feel that I've got any right to "butt in" or offer opinions....but reading your post really touched my heart. I can only say that I do think you should try to spend as much time as you can with your dad, because NOTHING is as important as family. If you only had a short time to live, wouldn't you want your child/children around you? You'll never have that time with your dad again. Yes, it will be emotionally hard on you, and you do need to make sure that YOU have lots of support too - maybe from a bereavement counsellor? I am in my 60s and my health isn't good, and my only family is one daughter....and our relationship broke down (partly my fault, but also hers too). I would give anything to hear from her, and for us to reconcile before it's too late, but she doesn't want to. I still have hope, and I pray every day, but also have to accept that it's her choice not to talk. So trust me - nothing is as important as family. It's wonderful that you do want to be with your dad, even though it'll be hard. Just make sure you get a break when you need to, it's not selfish to look after your own needs. I wish you all the best, and hope you don't mind me sending you this. S. x

i do hope and pray that your daughter will contact you somehow because this is your wish. Godbless you scotlass, love grace xoxo 🙏

Oh thankyou Grace, that's really good of you. xx

iv said a little prayer for you dear. i hope its answered soon. love grace 🙏❤️just to come back and thank me shows me how much you want reconciliation. i will keep you in my thought tonight. god bless you.

Always a tough decision. You know in your heart what's right for you. Make sure you have that support from other people. Maybe reduce your hours temporary and I hope work are fully aware of the situation and will be supportive.

It's amazing how much strength you have inside even if you don't feel it. Im always amazed by how much strength can be found in the darkest moments.

This week a close friend of mine lost her healthy 40year old cousin suddenly to a brain aneurysm leaving a 4 year old child without a mum. I know she would want to have that chance to say a proper goodbye.

Do you have a history of depression?

Hi im so sorry to hear what you are going through! I can only advise on my experience, I lost my dad 3 months ago after him spending two months in hospital, after 7 weeks of him being there we were told he wouldn't pull through and they stopped his treatment, I dropped everything and spent every hour I could with him they even let me and my brother stay overnight with him, it was difficult to be there but even harder to be at home because all I could think about was being back there, my dad hung on for 8 days after they stopped treatment and I can say ill cherish those precious hours we had at the end because even though it was the worst feeling ever it was a comfort knowing we were with him. Everyone is different and I know some people couldn't go through that but I know I'd have regretted it if I wasn't there, I hope things go as well as they can for you hun x

Take the time off my dad has lived in heaven for the past 20 years, and I would give anything to speak to him you will regret it if you dont. You obviously think the world of him to have written on the forum take care and give him lots of kisses and hugs and give him one from me. Xx

How do think it would make you feel if you dont spend the time with him? Sounds to me that you ve already given yourself your answer.....you need to look after yourself but for piece of mind it sounds as if you need to be with him

Can u reduce hours rather than be off completely....this would give some sort of normality?

Otherwise u need to do other things during the day as well so that you do not get too down if that is a possibility.arrange to see friends and have a walk do not spend every last minute with him.

However you can give him suppprt and get some peace for yourself .

Dont forget to draw on social servuces who can via his doc put some help in some personal care/meal help...you would need to get this in place before you do go off work or they will expect you to do all of it!!!

If he has larger amounts of money he would have to pay towards this.thats assumong youre in england ?

If you take on the whole caring role it may be very intense without some other support.

Good luck with uour decisions.best wishes cazer.x

Hi Lperica10 with me it was different as I got the chance of being with my father before he died taken from me as he collapsed at his home in the early hours and was dead when my mother found him a short time later. I had ,had an argument with him the last time we spoke. I can honestly say that this still haunts me to this day for not getting the opportunity to make everything right between us, and what I would give to get that chance. So to me your decision should be a no brainier and it's to spend the rest of the time he's got with him as you can't change your mind later.All my thoughts and empathy are with you at this difficult time. Ian

So many great responses I thank everyone. I should add that I was off work for 8 weeks in June July and August and was with him everyday for every doctors appt, general help, and day to day living. It exhausted me and family had their comments about I can't believe I would give up my life for someone who wasn't there for me and did want he wanted his entire life (drank). Etc etc. even was told my husband will get sick of it. So then I returned to work and am finding I am still with him 4 days a week plus work (40 hours) and phone calls from medical staff while I'm at work. So now it is just more exhausting. So I thought if I took a leave I would be able to spend time with him. No family talks to him because they say "he did this to himself, has been selfish his entire life" etc etc.

Grace says it very well with heart. Be with him. I lost my father to liver cancer in 2005. I still hear all the good wisdom he passed onto me. my mom and siblings treated him disrespectfully his last months. They really wanted to rub it in the ways he disappointed us. I grew disgusted listening to them and their opinions. Dying is a time when we need to respect what the dying person is leaving behind, forced into going when we all want to live. Its very sad. Its supposed to be heart breaking watching it. So dear, its ok to be sad, to cry, to feel your heart break. He is likely to die easier having a child near him that loves him and because of how strong her love is, her love causes her heart to break and forgivness to enter just when he so needs it. I hope his dying experience makes you stronger. Sharing this is the last experience you will ever have together. You will respect yourself if you follow your heart. Can you ask for Hospice? They will help lead both of you thru this. My father had them. They are amazing people. Do you have hospice in your country. Remember, we are all right here for you. When he goes, he is gone forever. This is one of the richest experiences of the rest of your life. Allow it to teach you while your heart breaks. Its stronger and bigger than you presently realize. Sending love and best wishes.

Its what you can cope with make the most of the days you can with him your never get them days back if you can afford to take time of with out losing your job xx hope that helps. I lost my mum Christmas day after a operation was not expected I wish I done more with her xx.

Bless you, you sound such a loving, caring and forgiving daughter...you should be proud of yourself, it takes someone with a beautiful heart to carry on caring and to be able to show forgiveness when you have undoubtedly suffered great emotional pain as a result of your dads drinking.

It is extremely sad that in this time of need your sisters are not around to help you and, worse still, it sounds like you are being made to feel that you should adopt the same attitude. You are, in fact, the bigger person and if it's any consolation, in the years ahead you will know peace, knowing that you did your best and you showed love, compassion and forgiveness towards your dad.

Alcholism is a horrible disease, it destroys relationships, it causes anger, pain and frustration to loved ones and, sadly, no one but the sufferer can make the decision to change.

All I can say is you must follow your heart, make the decision that is right for you. With regard to the comments made about your husband, talk to him, explain why you're doing what you're doing and I'm sure he will not only understand but will also be proud of the person you are.

Praying for you 🙏🏻

Jacqui

Agree with every word you said Jacqui

Thank you scotslass333, like Grace, I too hope and pray that your daughter gets in touch with you.

I'm sure it must break your heart, I have 3 children myself and I couldn't imagine my life without them in it. None of us are perfect, we all make mistakes, but it takes far more energy to stay angry and life's too short.

Praying for you that your wish comes true.

Jacqui xx

Thanks again - it's a long and tortuous story and I wouldn't dream of airing it in public, esp as I'm sure you all have far more troubles than me - but yes, it is absolutely heartbreaking. And only another mother can truly understand, so bless youfor caring.I didn't mean to turn my post into a pity party,because its not about me at all. So will shut up now! 😶 xx

Sending you healing hugs xxx

We,re not "public" here. we,re family. xxxxxx All the best scotslass and indeed to everyone !.

Hello, having read your beautiful post and the very caring replies. I feel You need to focus on your needs and what will, looking back give you a sense of peace, joy and fulfilment . you and your relationship with your father , to me, takes precedent here .x x x I wish you big hugs.

I have read this post and the caring replies with interest having found myself in a similar position. My mum has very quickly taken a downhill turn healthwise - she has cirrhosis and only 4 wks ago was in a specialist liver unit having an assessment for transplant for which she was deemed to be too frail. She came home for 3 days and and since then has been in our local hospital with severe hepatic encephalopathy, fading each day a little more and heartbreakingly no longer knows who I am. The doctors are now talking end of life care.

My own GP has just this evening signed me off work as I am having anxiety (something I've never suffered with before) his words were to spend more time with my mum as you never get this time back, and to look after myself. I am feel so guilty about the extra pressures that will be put on my colleagues and worried about the extra work that will build up for my return. I also don't want to be too hasty taking absence from work as I don't know how much longer she'll be with us and will she need me more nearer the end - how soon will that be? I have got my name on a waiting list for some pre bereavement councilling, perhaps that may benefit you too? Especially as like me you have no family members to support you. My heart and thoughts go out to you xxx

My mum has just gone to bed and I've found myself feeling anxiety which I haven't suffered for many years now and so I thought I would come back on here as the topic has been about caring for a sick parent as well as parent/children/relationships and, to be honest, not sure what else to do with myself right now.

I replied to this post earlier today, not knowing the news I was about to face this evening...my mum has today been diagnosed with lung cancer and I am in total shock. I have come round to sleep over so that she isn't alone, my father died of PSC very suddenly last January and I haven't yet got my head around that one, but here we are again.

So, I understand what you are going through, I still remember the end of life nurse taking us into a room to break the news to us about what to expect with my dad. He passed away 10 days later in a beautiful hospice. I found an inner strength I didn't know I had, as I held his hand it was the most painful moment of my life yet at the same time it was strangely serene. I'm just grateful I was there for him.

I haven't yet told my 3 beautiful children about their nanny, My son has just returned to imperial college in London where he is studying, my daughter was the first grandchild and my youngest is only 13...I don't want them to feel the pain I'm feeling right now but I know I am going to have to break the news to them.

We do have to make the most of the time we have left with loved ones...I just didn't think I would be thinking the same today about my own mum. Still in shock

Try not to get stressed about work, that'll still be there long after your mum.

Look after yourself.

All of you on here are in my thoughts & prayers xxx

Oh Jacqui I'm so very sorry to hear your devastating news. You have replied to me numerous times on my previous posts (since deleted and name changed on here as I've had to tell relatives about my mums condition - I was concerned they'd find this site through their own research into liver disease and didn't want identifying). Your eloquent and emphatic responses to others have without exception shown what a kind and caring lady you are and your words have brought me so much comfort and offered some really valuable advice. I am so very sorry for the pain you are feeling and hope you can find comfort with your forum friends here - we really do care xxx

Thank you so much for your lovely message and kind words of support, very much appreciated xx I've read and re-read your words a hundred times wanting to reply but failed miserably...just more tears. I spent yesterday just trying to gather my thoughts as today I need to tell my children and so need to be strong for them as well as my mum. At least I know I can share this ordeal here amongst friends and am grateful for you lovely people xxxx

Sadly we are in the same miserable boat, i write from my mums hospital bed where her difficult struggle is almost over.

Sending you strength to get through today and the coming days Jacqui.

Much love xxx

Oh sweetheart - my love, thoughts and prayers are with you, I'm so sorry.

Life can be so cruel, 2 days ago I never imagined being in the same boat as you, yet here we both are. Sadly her cancer is rare and very aggressive so shock diagnosis (no symptoms) and it appears not much time.

Sending you healing hugs to give you strength.

Much love xxx

Oh Jacqui I've just read your post and am so sorry - I don't know any of you good people, yet with just a couple of replies you have given me more than you know. I can't believe you're having to go through all this, with your mum now. Sitting here in tears for you. Just wishing I could give you a real hug. Will pray for you , that you will be given the strength to cope with everything. You are clearly a very special person . Take heart you're not alone. xxx😇

My sincere thanks to you for your kindness, your message brought me great comfort at a time when I couldn't find the words to express the despair I am feeling. This has been a tremendous shock, no warning so really has knocked me sideways. Today I have to tell my children so need to be strong for them. I thank you for your caring, heartfelt words, they truly did help. xxxxx

Yes I've thought about the SAME thing too with when to take the leave. (Not too soon, not too late, so I'm not missing so much work) Like I wish I knew HOW long but unfortunately you will never know. It could be days weeks or months. Let me know what you decide and thank you for sharing your experience. It really helps me to talk with others going through something like this.

I am taking a week off for now, it will allow me to spend longer at the hospital with my mum and hopefully alleviate some of the anxiety I've been feeling at work. As guilty as I feel about it I am listening to what my body is telling me.

I hope you feel better now that you have reached a decision about work.

Thinking of you xxx

Thank you everyone for the responses. Your advice, kind words, and sharing your own stories made me feel a lot better. Especially the part about not getting the time with him back. Work is work and I am 31, it will be there a lot longer than my dad. So I think I will talk to my work and see what I can take off.

Ok I slept on it and woke up with a completely different thought. I don't think I should do it because if I take off a month what happens when he needs me more than a month? I can't loose my job... it is so important to me and I've been in my current position 1 year and I finally found a job I love. I guess my family is right I can't take off for someone who didn't give a ---- about me all those years.

Can you reduce your hours temporarily? It's tough but go with what feels right. No Regret. Good luck. Xx

Sorry, I misread the situation. I did not know he did not care for you. Please forgive me.

On my way to hospital. This afternoon he was rushed from nursing/rehabilition facility to a hospital and from that hospital he was life flighted to another hospital. They think this is it. (Internal bleeding)

He will know how much you cared for him, in the end love is all that matters and you have loved him....x

Do you love your father? If you do, do you really need to ask?? I know I say do not worry over me when I am sick, but I know my kids love me and will do it anyway. I would want my loved ones near me. If my loved ones made a big deal out of being there I would feel bad, even if it were I that were dying. If you care be there. If you are more important to you, then do not. Many people will ignore my words. Self has become the focuses in modern times. Is it the right way?

That was rude I don't make a big deal and I do love my dad and people tell me I'm the most unselfish person ever no need for your comments you have no idea what I've done how dare you say that

I know it was harsh. You may hate me, but I do hope someone will say that if my kids say the same as you. In all fairness, I did not know he did not care for you. I just read that. That changes everything. I love my children. The culture in America is trash. It teaches to throw off those who cause you inconvenience, no matter how they have stood by you. It was really hard to tell by what you wrote at first that he did not care for you. I am sorry, if that is the situation, I spoke too soon. Forgive me.

This is obviously a very traumatic and trying time for you, I'm sure your emotions must be all over the show.

Growing up with an alcoholic parent who never addressed their problem is extremely painful and difficult. I have witnessed the impact this dreadful disease has on helpless children just recently with a lady I have been trying to help for a few years now.

They hurt so much, they don't understand why she can't stop for them, why she is slowly killing herself when they tell her they need her, that if she loved them enough she would stop, their minds are permanently tortured with these thoughts and yet nothing they do or say, no amount of pleading with her makes any difference. Their pain then turns to anger, frustration, fear, it's just a constant roller coaster of emotions.

It is heart breaking....it is alcoholism at its best...cunning, baffling and SO very powerful.

I'm sure your dad has always loved you, sadly this dreadful disease is just soul destroying for both the sufferer and those around them.

Praying for you both xx

Thank you. I appreciate it.

And I've done it anyway for 32 years

Is there a time limit on love? Again, if he did not love you, forget all I have said. I am sorry.

I was saying that in reply to you saying your kids would do it anyway. And that is what I am trying to tell you that I did do it anyway. That is why it was so hurtful.

Again, I apologise, I should have read further. I did not know your father was an alcoholic. My father was an alcoholic as well. I know how that can leave scars. You must have a good heart to put that aside and stand with him.

Be with your Dad, you'll regret it if u don't. Stay strong. Can you not go on the sick?? That's what I did. Take care love & light X

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