I have slept loads and I needed it! I haven’t walked the dogs up the mountains for ages so I have brought them up. I can see the hospital from the mountain feeling guilty I am up here and he is in there knowing I appreciate nature because of him. I called the hospital he is settled and sleeping I am torn I want the night off as I am not so upset and more relaxed yet I am also scared to go but know I need to make the most of the time he has awake as well 
was anybody else torn like this? As I feel so guilty
1 Like
My father has been sedated further as he is still trying to leave the hospital he is now slurring heavily and it’s hard to understand what he is saying at times but I am speaking to my mother again now and she come down with me she suggested to my father to give me a hug which I felt so uncomfortable with as we don’t do it but she meant well and as he is sedated he was like a child and just said yes and turned to try lift himself to hug me and I feel so sad about and not entirely sure why 
I nearly choked him giving him a drink nurses said he shouldn’t have had it yet they left drink there me and my mother tried moving him up the bed ourselves as he can no longer move himself to get comfy as he he has athritis in his coccyx bone and there just isn’t enough nurses! They took a while to come around as they were on the handover shift. He was struggling to swallow and asked me for food and drink yet nurses said if I did would have choked him:cry: they also didn’t give him his omeprazol as he couldn’t swallow the tablet and didn’t give it another form as had to wait for tomo for doctors to change the prescription type in the meanwhile the Citric orange juice was affecting his stomach he turned to my mother and said Steph I think I’m dying then he goes on to forget that he is it’s tragic :,( I feel guilty I haven’t been staying down there as long as I could and the night when he made the comment that he would be there on his own and was talking so much better I could have utilised that night as that was probably the last night he was going to be able to speak ok as much more sedation now :,( they gave him gel in his mouth as well for his dry mouth it definately is getting harder for me :,(
He made a comment about being left alone which hurt and I also notice this urge to call him and talk I think tho this beCause I know it’s now being slowly taken away from me
So I noticed a few thoughts and feelings I am questioning which I can’t wait to speak to my psychologist about tomorrow. I am very critical of my mother and she irritates me (this is my problem not hers) I accused her of talking to my father like a child but she didn’t think she was. She wasn’t giving him enough time to talk I didn’t know if she thought was helping fill the void of silence or being inpatient which reality was just her trying to help. I was in a position where he may have asked me to read my personal letter to him out loud and I thought thank god it was interrupted by him asking something as I felt awkward reading it out in general and with my mother there. Then my mother said do you want to give her a hug and it was unnatural as we don’t do it anyway and he was childlike I felt due to the sedation and was so frail yet rolled over to give me one and I felt so awkward and uneasy and made a face to express the awkwardness as I knew my mother was watching. This should be able to happen naturally I don’t know what is wrong with me I also noticed when my mother got upset I felt angry?! I think it’s because I’m uncomfortable showing my emotions as I also tried to make out I was ok when I wasn’t. I can’t wait to explore this with my therapist as I feel like a horrible person right now
Anyway that was last night. Just visited him with my auntie and had a good chat with palliative care who said he is more relaxed now due to increase in meds and they don’t intend to knock him out just enough to calm him down with his extreme anxiety and attempts to escape. Well he is getting more and more frustrated with not being able to get his words out and being understood and he has been snapping at me more which I let go over my head but also find hard, however on a positive note he was still able to have a laugh. He again thought I was my mother though. And he made an interesting comment about an auntie of his who passed away years ago saying she told me I would be here next week and I can’t belive the time has come! He is confused as well and doesn’t belive he was in the hospital last night again. He obviously has lost a lot more weight but shockingly there isn’t much left to lose. The only sad part I realised today from speaking to palliative care is the fluid is slowly building up again in his abdomen and legs and I was under the impression this would be monitored and drained until I realised today that when he had capacity as it was painful he decided he never wanted it done again and I already knew he had signed a do not resuscitate form. So now progressively with the fluid he will slowly get worse regardless of his liver and heart failure as I think this is what will ultimately kill him as they told me before the fluid will rise to around his heart and strangle it causing a heart attack al I pray is he goes in his sleep the nurse told me to take it day by day
Forgot to add I noticed I didn’t feel comfortable to say I love you to my father in front of my mother only a few times I have said it recently in all our lives anyway but I was a bit upset earlier way he talked to me and I allowed that to prevent me saying love you when I left which I feel guilty about
I literally want to send you the biggest virtual hug. In your last post you talked about your dads heart failure and fluid…my mum had that hunny, my heart hurts for you and even though I don’t feel I’m in a place to help at the moment I really had to comment to say that your so brave and all these moments with your dad are making such a difference, your present and there beside him. Please keep communicating xxx
1 Like
Just leaving hospital was very hard tonight, he somehow is more alert than earlier towards the end he was drowsy at first and we all had some brilliant laughs however constantly on about leaving again trying to take blankets off and he said the saddest thing he said to me and my mother please don’t abandon me and done praying hands so we stayed longer and he just kept waking up more and more the nurse come to get me and he looked at me leaving I said nurse coming in a minute ok he said nothing and kept looking I said it again he nodded and turned his head and now I feel I have abandoned him I told nurse to make sure she blames her and says she told us we had to leave cause it’s shutting but I am not confident she will do that for me as I didn’t even say goodbye tonight
See the thing is I am the only one who is allowed to stay over the hospital over night and I never have! I could have stayed! It’s just hard but I also feel like I’m making excuses I feel riddled with guilt and fearful I will regret so much of not making the most of sleeping over and staying longer etc
Sorry things just keep popping in mind that I don’t want to miss but he told me the nurses just tell him to go back to sleep a lot and I realised I did the exact same thing to him earlier as I was trying to leave :,( also I know the nurses are busy but he is very slow talking with the meds and hard to understand and I notice they just walk out aw I feel so guilty right now reminding myself of asking me not to abandon him I feel like such a horrible person lately with all this! I felt ok at first as I was staying long hours and now I’m not I feel like this all the time and especially after that comment he made tonight :,(
My father had a burst of energy today/tonight and I’m fearful it’s the surge I have read about just before the end I could have stayed in the hospital but he always talks about leaving it’s so hard and especially when he said tonight I would never abandon you why are you doing this to me I feel so guilty but exhausted at the same time or am I just making excuses I am just so confused I am already fearful I will be full of regret on a positive note though I cwtched my father he said I love you I said it back and kissed him on his forehead first time that’s happened and it felt natural all our lives so why did I ruin it by not staying
Why don’t you stay the night with him. It will help him and it will comfort you. I’m only saying this so that you have no regrets which you are already having. If of course you can’t for any reason then sorry if I have suggested something that is not feasible.
I am so sorry I never got back to you have been having a terrible week myself and have been unable to be on here. However please know that I am thinking of you and reading your posts. I can definately relate to when my dad was in hospital and my mum too. I also love dogs and nature because of my dad. You are stronger than you know and you have more coping mechanisms than you know because of your own medical condition you have had to cope with more than most on normal days and this situation is even more trying for you. But you have had this condition for many years and you have learned how to deal with it and have learnt many coping tools and you now have these to fall back on. You are also learning that you have people who support and love you and you to are showing to them how much you support and love them. It is natural to feel guilty for being away from the hospital but you needed to recharge and to breathe and walking and animals can so help with all the negative energy we build up inside during such circumstances. You are making memories with your dad that you can hold onto for the rest of your life and cherish right now. You told your dad you loved him and he said that to you too and you will remember that and hold onto it in the days to come. if there is anything you want to chat to your dad about his life if he is able then now is the time to do it or just talk to him and let him listen about your good memories together hearing is the last thing to go… My dad was sedated a lot near the end too as he was in a lot of pain. Sometimes when it comes to patient care you have to be proactive and go to the nurses and say sorry to bother you but… I know this will be particularly hard for you but you either just have to bite the bullet and get on with it for your dad or ask your aunt to talk to the nurses. I too wish I had a chance to talk more with my dad before he died. I was with him throughout in hospital but he was barely there. Still he was very strong. But my mum kept me at arms length as she said she wanted to give my brother a chance to bond with his dad. However my hardworking kind dad knew my brother was a lazy waster (his words) and my brother didn’t care about my dad. So cherish this time, even though it is also so very difficult to bear. It is good that you are getting to clear some of the air with your mum just now. It makes this situation a little easier. Do what you feel comfortable and do the things that you wont regret missing out on in the future. Thinking of you.
1 Like
My heart goes out to your last reply. You didn’t abandon your dad the nurse made you leave. Wont they let you stay overnight, As my dad was closer to death they put him in room on his own for the last week and they put a matress on the floor on the last days and let us stay overnight I did twice and I think my mum did once. Although I ended up snoozing not really sleeping. The nurse may only have made you leave because your dad is in a shared room and it would disturb the other patients. Take care.
Thanks for your reply means a lot as o posted on another social media page to be told I am selfish :,( o could have stayed I have been able to stay over night for a week and a half and haven’t I was trying to stay till he fell asleep but he never does as he afraid too thinking he won’t wake up I have dogs at home too but I’m questioning myself is this an excuse because I was staying till early hours for days at a time the first week but once he had morphine and was hallucinating and constantly trying to get up and escape I made a choice I felt uncomfortable to be there alone with him so now I go with my auntie and my mother at seperate times so twice a day sometimes. So I do feel I did abandon him knowing I could have stayed and my mother even offered to stay over with me one night I am confused with myself why I am feeling and acting this way and having mental health myself including emotional disregulation doesn’t help at all I am going back down at 6 in a bit till 8 with my auntie and I know he won’t want us to leave again there’s other family members who visited this morning and yesterday there was something there Nearly the whole day with him we just visited at seperate times
1 Like
If you are having emotional moments and need some space to reglate your thoughts while in the hospital. Go into the hospital chapel most have them and you dont need to be religious in any particular way to go and use the facilities. The one I went to had a beautiful stainglass window. Most hospital chapels are nondenominational but even if they have a particular faith then they will welcome anyone. They usually also have a quiet room for the relatives to use. It is just a good quiet place to gather your thoughts let yourself have a moment, then collect yourself and a breath and go back and sit with your dad. I did this a lot when looking after my mum because I was at one point in the hospital from 7 in the morning till 8 at night. With breaks. (Sometimes I had a wee greet in the quiet room, but thats ok cause they usually have tissues. I also had to spend one hour in the quiet room giving my brother a good telling off for something that he did that would have upset mum which I had to fix, felt like his mother too much.) . It is ok to have a wee break for yourself it helps you be stronger when you are with your dad and to be more present when you are with him. Glad you are now getting more support from family members . Take care.
1 Like
just left hospital was hard again as this time even tho he had a good day was being aggressive towards me with his words telling me i am thick as fuck as I couldn’t understand what he was saying or see what he wanted me to grab etc didn’t want me to go even tho he was in a foul mood with me towards the end yet I stayed 3 hours first 2 hours were actually good and we had a laugh He was even dancing a little bit in the bed and sing a little it was the last hour 
anyway my mother has really pissed me off! We haven’t spoke since just before Christmas and to be quite frank I am only speaking to her because of my father but today she called to say she been up early and make sure we don’t go hospital late as she knows I don’t want to go on my own as finding it difficult, when I called her she proceeded to tell me she had had two cans (lager) that she hadn’t in such a long time and could I pick her up and drop her home (she sounded ok on the phone even though I know usually only one affects her) this still pissed me off thinking why though did she choose to do that knowing she was going to the hospital! I drove to her after half hour and called she answered the phone by the window I could hear by now the drink had taken affect and she asked me to give her 5 mins and I seen the can in her hand through the window! So I told and asked her what she was doing she said finishing the can!!! I said forget it il go on my own! She didn’t call straight away she called when I was at the hospital and I ignored it but as my father was having a good day he said il answer (I thought why not maybe she wanted to see him herself and she could atleast speak to him) I was mortified to hear her telling my father I have treated her like absolute shit! (I don’t think I did!) and when my father asked was she coming down she told him I wouldn’t let her in!!! Wtf?! She was on about the hospital may not let her in through the door without me however she made it sound like that to my father!!! She asked him to ask me was I going to pick her up?! I said no I’m here with you now no need!!! She was acting upset on the phone said she couldn’t get to hospital because she had a drink my father said get a taxi then she said she been up since 3 and then admitted she had a drink and even my father under heavy meds said just go to bed Steph, I couldn’t belive she was saying all that to him! Pissed off is an understatement! Also I always feel guilty for things that are unjustified and this makes me realise this is probably why! All my life I have had to deal with shit like this and it’s always turned around on me! I honestly can’t stand her (yet if she was in my fathers position I know I would still care) I also viewed a message from the auntie who was named next of kin and she sent my father a screen shot of the diagnosis the doctor gave him yet she was telling my other auntie she didn’t know what the condition was called! I can’t remember if I have mentioned this either but next of kin auntie did not fulfill his wishes of sorting the bank out and funeral (he is no longer of sound mind to proceed with that) and told my other auntie as soon as he passes she will hand me the keys and everything to sort out! I can’t belive she did this to me! Thankfully the other auntie will help me sort this out now though
I have just lost my father and have times where i just cry randomly… be there for
I came yesterday only quickly with my auntie and he was more switched on than ever I told my auntie yesterday I felt this false sense of security that I am used to the routine of being here and that even tho I know why he is here he kept having good days, when I woke today I nearly didn’t grab my phone I felt secure so to speak I called my insurance company and asked them could I pay today because of the situation with my father and I went to finish off gardening and wasn’t going to take my phone with me yet good job I did I have had the dreaded call today his breathing has progressively worsened I came straight down sat with him now with my auntie we been here 4 hours which feels like 5minutes!!! The nurses rolled him for pressure relief he is sedated but woke a bit in time for me to see I love you. He is frightened of his breathing we just tell him it’s anxiety but I guess this is the beginning of the end and yet I’m still in shock here not knowing what to expect :,( the ends of his fingers are white and bruises on arms and purple lines on his stomach the shallow breathing and feels cold obviously the nurses can’t say how long this process will take but is progressive from here on in :,( I have ub40 his favourite band albums on repeat playing next to him quietly I have given some water for his lips. His belly is swollen bad cause of the fluid due to his liver failure the sad part is this could be temporarily intervened by being drained right now but it would only delay the inevitable :,(
He let us go easy last night and the night before that was the best laugh we had here! The nurse he was flirting with and was so with it I haven’t been updating as much as he has been having good days and I kind of felt ok! He did say last night looking back that he felt uncomfortable and not well yet he has extra meds before we left we thought would relax him and the nurse said he had a bad night calling out in pain such a quick deterioration from when we seen him last night I just can’t belive it but why would I even say that when I know logically why he is here even! This doesn’t feel real even though I’m sat right next to him right now watching his breathing difficulties :,( it feels like another visit and il be back and he will have a good day again
I was called by hospital yesterday to say my fathers breathing deteriorated I spent the whole night he woke a few times I went back down earlier for two hours he has been given over double now what previously had and he hasn’t eaten or drunk in two days I feel it can’t be that long at all now