My father is on palliative care right now. I am still in shock and denial and so is he. I don’t think he has much longer left. He is so frightened and scared and I am trying my hardest to be strong I am petrified of when the time comes I am trying to spend as much time with him that I can and googling what I could possibly expect as this is the first time for me to go through this. I live alone I am 32 he is 56 so when I spend hours down the hospital and come home it’s just me left to sit with my thoughts and emotions late at night with my dogs that sometimes help to distract me so I am seeking some sort of support from people who may understand what I am going through right now and any advice would be greatly appreciated, Thankyou in advance
Oh dear, I am so sorry for you. What a terrible time. Your dad is so young too. I’m afraid I don’t have any advice to give you as my husband died very suddenly. My brother died from pancreatic cancer and he had palliative care in hospital, but he was in a coma for his final days so at least he wasn’t scared. You don’t mention your mum or any other family. All you can do really is just be there for your dad. It’s a hard time. I’ve replied to your post because I wanted you to know that there is someone out there. You’re not alone. I’m having trouble sleeping tonight which happens since losing my husband. Hopefully you’ll get some better replies tomorrow. Stay strong. Love and hugs xx
Thanks for your reply I will reply properly tomorrow I have started crying and almost don’t have the energy to write all I wanted to say but please know how much appreciated it and I am very grateful I am sorry for your losses also x
Hello, reading your message makes me so sad, as I have been on the same journey as you. My dad was given 6 months to live in 2018, he did so well to make it till this year, we never thought he would, but then he got Covid, probably whilst going to hospital for this three times a week appointment, and died in April. It was awful, the worst two years of my life, you never know when the moment will come when they die, it just wears you down and destroys you, my advice would be to keep talking about it, and get as much help as you can. You sadly don’t seem to have many people to talk to as you write that you visit him at hospital and then go home and are all alone, that is incredibly sad, so you have come to the right place, here you will always have someone to listen to, please feel free to post daily about how your day has been and how you are feeling, no one will ever get tired, ever, that isn’t what we are like here, we understand grief and how terrible it is, and do everything we can to help people.
Hope your day is a little better today, all the best to you.
I was in a very similar situation to you, except my dad was treated at home. We was also 56, died in May. He was terrified but he started keeping a journal, just getting his thoughts onto paper he found so helpful and it meant he stopped worrying about upsetting us all, as he was still saying what he wanted to but it was written down. In his last few days he was on drugs to help him drift off as he didn’t want to be aware of what was going to happen. He was so peaceful at the end which was what we all wanted, especially him. I tried to hold all my emotions in but you’ve got to just get them out, he’d be worried if you weren’t upset! Hang in there. X
Thanks again for replies I will reply in more detail when I have the energy just exhausted a minute but I wanted to acknowledge my appreciation and express how I grateful I am and I hope your all doing ok also x
I am currently waiting for my dog in vets as if I need this extra stress although my fault I left chocolate went toilet and puppy grabbed hold of some so brought her straight down for injection for her to be sick
Anyway so I live alone my family is disfunctional on both sides I cut my fathers side off years ago and I feel guilty as my father tried to reach back out yet I am u Der psychological therapy and our relationship is toxic and he was triggering me and I hadn’t quite had the tools mastered to deal with this situations so I ended up having to cut him off as well and low and behold he fell ill
The sadistic part of this is my one auntie who has been named next of kin didn’t even inform me! My other auntie and cousin did thank god but 5 days AFTER his admission! Then he took a turn for the worst on Wednesday and those relatives contacted me again yet next of kin sister and the third sister didn’t. I have also recently learnt the third sister who is not a nice person at all had asked my dying father if she could by his sofa off him which I found highly inappropriate!!! She also told my father if he needed anything to ask her and the sister she is close with and her daughter (there is a divide on the fathers side of the family) we all would help without saying yet she felt the need to specify this and I also told (which I didn’t need to know) that when this vulture sister was informed of his initial hospitalisation that she declared she was glad and hope the fat bastard dies! And now she asks for his sofa especially after being cruel to him all of his life!
I don’t need this family drama alongside all of this I am trying to deal with too much at once! The reconnection of some members and the betrayal of others at such a sad and important time and the toxicity of their drama all combined it’s unbelievable! I was informed upon initial calls of money that would be given to me etc and I was like I don’t care for none of that right now! If not at all! My father is my priority! Even when he was first admitted I couldn’t get an update from staff as I wasn’t named next of kin! Yet next of kin was never telling me anything was such a nightmare! My father was also being awkward at one point before his bad turn and he promised he would call the next day to update me and a week went by!!! Inbetween that was Father’s Day and I couldn’t bring myself to say happy Father’s Day as I felt so excluded and messed about and I now kind of regret that as was the last Father’s Day I had the chance to say that to him
I have discussed with my father emotionally I don’t think I could attend funeral or ash scattering and he understand as I have BPD and all emotions are intensified and longer lasting than your average person yet by some miracle I am able to be strong down the hospital and put my anxieties aside to be there for him and I have no idea how I am doing it not even cried in front of him. I struggle to say I love you and have physical contact to hug but I did write him a letter telling him despite the difficulties reminding him of memories of childhood and how good a father he was
I have my nan on my mothers side to speak to and recently the auntie and cousin that reaches out but living alone your left with your thoughts to fester. I tried calling the mental health charity line c.a.l.l the other night as it was early hours I had just returned from hospital and just wanted to vent my thoughts she told me they wasn’t a bereavement service she did end up talking to me a bit but that didn’t start of great. I have my psychologist but I wanted to approach a specialist in this area so I have arranged a call tomo with sue Ryder site to discuss online coubselling and was grateful how quick the call back could be arranged
My perception of end of life care is sadly different to reality also! Lots I feel a massive failures! His emergency buzzer was not working for 5 days!!! It was reported and nothing put in place as an alternative! I kept on! I asked the handover staff on night 4 and I could not belive she wasn’t even made aware of it and it wasn’t on his notes! She said she would come with an alternative and forgot and on a quick check up told my father to call them if he needed anything and I had to remind her he couldn’t! She then said she would come with a bell and she didn’t but the following day a different buzzer was given as I was persistent! They also went to give him an injection in his stomach for blood clot preventative and he declared he had had one already the burst said are you sure he said yes I insisted she check the paperwork she didn’t come back I approached her and asked again she said it isn’t written down he had one but as he declared he had one I can’t give one (surely with all the medication he is on also this shouldn’t be the right protocol) he was waiting a while for a nurse when she finally arrived her phone went off she took the call outside the room it was important about cover I suppose however I still felt that could have waited and what made that worse was she continued to have a personal conversation about a baby being born hung up and proceeded to tell her colleague about that while my father was still waiting in pain! I told nurses to stay with him for his tablets as he was snapping them and chucking them yet I came in and they were left on table this also wasn’t on his notes. One night I realised after hours after being there so felt guilty myself I didn’t notice sooner his oxygen was not on! They had taken him to the toilet and not put it back on and apparently the oxygen wasn’t on his notes either as the handover nurse told me he wasn’t on it even though he had been the last 3 nights I was there! He took a heart spray on the side of his bed and needed and emergency ecg because they was not aware it was there and he was receiving it despite multiple nurses and doctors visiting room and it being next to him the whole time
My battery is drying there is more to this story I do apologise I have explained most I will try to finish before battery dies and sorry for the long post
A nurse apparently told him he could use the spray but only if he asked so they could check alongside his meds yet they still left the spray next to him despite his anxiety and confusion with everything! An old lady was crying out for help nobody was attending I told them and they told me not to worry!!! I cried felt so sorry for her! An elderly guy was calling out on other end of corridor when I told them the nurse had attitude stating there was a handover yet there was more than one and someone could have attended and updated the missing staff member I also felt some don’t have patience with my father or the time to listen to his anxiety and concerns
I told them the communication is extremely poor I was asking for constant updates and messages to be passed on and that never happened either and my psychologist said in her experience the basics are hardly met and I seen other posts complaining about end of life care and I’m appalled
The hospital called next of kin auntie didn’t call me so my other auntie did he is delirious and thinking he is in a prison so asked for someone to sit with him to calm him down my one auntie was on her way anyway and I am going down in a bit. It’s a shame as yesterday next of kin auntie told my other auntie that he was a lot calmer and managed to eat. Yesterday was first time he didn’t answer his phone and I couldn’t get hold of ward for an update this was the bit I was worried about where he wouldn’t be himself and also the unresponsive bit worries me if heavily sedated the vulture auntie visited for first time yesterday the one who asked for his sofa while he is dying I was happy because my father had questioned her absence but my other auntie was slagging her off etc and saying I am calmer than her I don’t need all that see it’s adding stress and my cousin was trying to ask me to go out of what I feel comfortable to do by collecting the urn when she knows I don’t want to as she believes the other half of the family won’t tell the other half and they won’t be able to scatter the ashes I don’t want to even be thinking of that
I am sat with him now this is the hardest part he is delirious and extremely anxious and talking about escaping and going home and lots of stuff that doesn’t make sense I feel so sad and sorry for him it’s heartbreaking
This happened to my dad too, it’s all part of the medication. We found he did this more towards the end, had a sudden burst of energy the day before he passed. Not saying it’s the same for everyone, but just wanted to share my experience with you! Hang in there. B x
Hello, so sorry you are going through this and having trouble with family, which is the last thing you need when your parent is dying. @Meebee is someone who had a similar experience, she isn’t online each day, but when she is, she will hopefully be able to give you some advice.
Tonight is heartbreaking and I am struggling he’s same as earlier I asked if the meds would ever be dropped again so I could have normal conversation again apparently they never will now and from here on in will slowly be increased because of his anxiety until he is basically sleeping as she said he was also trying to get out of bed earlier to leave as well she just give him his last meds and I’m really hoping he will drop off to sleep soon and nurse is looking at his catheter now as he keeps trying to show me where it’s hurting I have left room for her to sort him out but tomorrow he will gradually have higher doses of meds again now I am scared as I’m guessing it’s downhill from here and no idea how I will cope I have read up on loads yet nothing can prepare me he was a bit angry with me earlier but I know it’s the meds I also feel guilty when I go home and leave him I wanna be here all the time despite how hard it is I am just waiting for him to drop off here now before I go soon because he told me the other day he thinks he will go Friday (tomo) I am worried it will happen as I read they can predict it too
I was able to tell him I love you feel like a cop out though as it’s under the influence of him being on morphine he said oh don’t I can’t say that as much as you I said you don’t have to I don’t say it enough and I want you to know I love you so he said I love you back and then stopped me and said I mean that now mind you know that don’t you I said yes and good night broke my heart leaving hospital the nurse said it will get worse from here on in
I just read all your posts I only just found them because ti posted at meebee and it came up on notifications. Unfortunately I am in the process of leaving just now so dont feel I can adequately answer all your situation just now but I definately have been through similar situations with my family even though I was next of kin I wasnt informed of my mothers worsening condition and after looking after her everyday for hours and hours I was placed on a back burner. It was heartbreaking. I too live alone and during the COVID situation I know how difficult it can be. I will get back to you and if you want in the meantime you can private message me. Know am thinking of you. Take care.
So sorry to hear of your story Thankyou means a lot
I have found yesterday and this morning extremely tuff! The tears are becoming regular and the thoughts consuming seeing him so frail and confused and vulnerable he was asking me to help him escape and didn’t realise where he was or why he was there and he forgot he couldn’t walk al he cared about was making sure he looked presentable with pants on and to brush his hair and was talking about going for breakfast with me his meds kicked in and I can’t get the image out of my head of him sat up wanting and trying to leave and thinking he was and how skinny and gaunt he looked his one eye looked pretruding no idea why couldn’t keep them open and his mouth open exposing his bad teeth as he has neglected himself and nodding off and when he woke he said oh your looking at me honestly this part is unbearable the hospital has had to confiscate his phone now as well as he thinks he has been kidnapped and kept against his will he has also been moved further down the ward so nurses can keep an extra eye on him it’s funny how he said I thibk il be gone Friday theoretically he has due to his meds now at this point I have asked my auntie to come down with me I no longer feel j can be there on my own seeing two family members say goodbye last night broke my heart and he no longer understands he even looked at me and thought I was my mother and didn’t recognise me. I can’t switch off and using this as an outlet to get my thoughts and feelings out just worried I’m annoying people I am just fearful he really doesn’t have long left now and if I am struggling like this now with my BPD god knows what I will be like afterwards
Keep posting, especially if it helps to get it off your chest. What you are going through is extraordinarily painful. There will always be people here to talk to.
During, the most difficult times ,we only need perhaps a pinch of courage and the love we hold deep in our heart. Take care
Thankyou I am glad I went back down to visit with my auntie they have stopped morphine and started something else can’t remember the name and he seems a lot better still not as he was but better and that’s all I can hope for at this point really I did notice though I was more nervous and anxious and I asked my auntie to come with me as I really don’t wanna be there on my own anymore and I feel guilty even saying that as I left he was alert enough to say aw I’m on my own now then it was hard to leave as I wanted to stay at the same time I naturally this time said bye love you and he naturally said it back that’s only the second time in our lives we have done that