End of life signs

Hi Darling34,

There is some guidance on the website about end of life which you may find helpful to read. It can be a difficult read, but unfortunately this is something which is unavoidable for so many. I think it is better to be forewarned and prepared, however just read what you are comfortable reading.

www.macmillan.org.uk/.../end-of-life

www.macmillan.org.uk/.../the-last-few-days-of-life

Booklet: www.macmillan.org.uk/.../the-end-of-life-easy-read

Hi thank you I have read those I think iv read everything I can find. I was just looking for a more personal experience but I know it's not something anyone wants to go through again and I completely understand. But that you for your response x 

Hi, 

I am sorry you're going through this, it is so hard and distressing for everyone. 

I am currently in a similar position, my mum is in a hospice and has now not eaten for 10 days and not had fluids for 8 days. She is basically unresponsive, has a syringe driver and they have to top up when she becomes agitated, this has now been the case for the past week when EOL care started. I have slept next to her at the hospice every night as I don't want her to be on her own. My dad and brothers spend all day here. We're still so unsure when the time will be, mum has classic signs of nearing the end, unresponsive, gurgling, short bursts of agitation/pain, sometimes feels cold and yet she's still here a week later. It is so horrendous to watch. I hope that hasn't upset you, everyone is different, just currently living a similar situation to you I felt I could comment. 

I hope you're managing to look after yourself to some degree, I like you am broken but trying to keep on in this nightmare. 

Take care 

Xriax, Thank you so much for sharing your experience.

Hi thank you so much for getting back to me I appreciate it more than you know. I am so so sorry your going through this pain there are no words for it. My mum hasn't eaten in days and days but that is also part of pancreatic cancer she is getting a bit confused now so called my son a different name. She isn't out of bed at all spend most the day sleeping however she is responsive. So I don't think we are there yet it's just cruel why we allow people to even get there is no life for them I'm really scared my mother is going exactly where your mum is and I really don't want that I want her to be in peace now so does she I am doing my best for her I'm doing everything care medication I'm hoping I can take some comfort from it knowing I didn't let her suffer and i done my best for her. I know a week of really thinking this is the end and it isn't is going to be extremely tiering on you mentally and physically I glad you have people to help and support you thank you for sharing with me I know how difficult that is but it has helped me process things that I wasn't so able to before because I just didn't know and I really wanted someone personal experience because everyone was is different. Lots of love and hugs I'm sending your way hang on in there you are doing amazing xx

Hi I’m sorry to jump on your post.

i have no answers but I’m sending great love to you all. It’s been 5 months of pure pain. I’m also in this process, the same as you. My dad was told this week there is nothing else. His mental health is horrendous, he wants to go now and end the waiting, I can totally understand. I feel so sad and angry for him. Why can’t he have the choice.. it’s his life. He’s spending his days crying.. just existing and waiting to go and it’s so hard to watch this and to see him deteriorate rapidly. I’m helpless. He calls me crying daily and I have to to try and stifle my crying. He hugged me and kissed me yesterday and told me he couldn’t have done any of this without me and I’ve done the best I can. He’s weak and had enough. I feel like I’m dying of a broken heart..I’m just exhausted and broken. Everyday is a massive struggle. I wonder how long I can keep going with this.. I want to run off and I can’t. This sounds like it’s about me.. it’s not… I cannot imagine what he’s going through if it’s this bad for me. Dads calling the nurses and asking them to help him end it sooner, of course they can’t. I’m so scared of what’s to come.. terrified. I can’t bear to think of him in any pain or anymore suffering. This is like torture for us all. I’m so sorry you’re all going through this too. I wish there was an answer out of this hell hole. I really do. 

Im thinking of you all and sending a massive hug your way! Xxxxxx

Thank you for your message, love and hugs to you too. It sounds like we're both on a very similar journey and there are too many people out there in this horrible situation. You are definitely doing right by your mum even though I'm sure you feel so helpless at times. Today I feel angry at everything, of course I don't want mum to go but it is inevitable and watching her like this is just agonising. All I want is for her to be peaceful. I feel guilt for wanting it to end but equally this isn't how she should be! 

Stay strong and take care of yourself, you're amazing, always here for a vent if needed. 

X

Hi no don't be sorry thank you for reaching out. I feel exactly the same I dread every single day I wish I could run away my self I never will but wish I could I to feel like I'm dying inside bit by bit everyday it's torcher for everyone it really is and the fact that they have no choice to end their life with dignity is beyond wrong we wouldn't let animals suffer but we allow people my mum to has said shes ready to go she has no independence just in a bed it's not a life my mum takes diazipan I'm wondering if that would help your dad it helps my mother massively with not crying everyday it affects their mental health just as much as their physical health and your dad sounds like he needs some help. It feels like the longest journey of our lives when in fact it's only a short one but it's filled with so much pain and sadness. I'm hoping to take some peace from the fact that I to am doing all I can fory mum like u and your dad. I hate that anyone is going through this but thanking you for reaching out because it feels so lonely sometimes and when I speak to others who absolutely get it and get how I feel and think I feel a little less alone. Lots of love and cuddles to you all xxx 

I say exactly that and I feel bad for thinking it because in reality I wish I could keep my mum forever and a life time left with out her init is to painful to process but I know my mum doesn't want to exist like this this is no life it's cruel painful awful to be stripped of everything u are so no I wouldn't want my mother to stay like this. I feel angry to so angry and I ask my self daily what could I possibly have done to deserve this life I lost my dad to cancer as well so iv watched this road before and to watch it again I don't know how much one heart can take. It's a cruel world and Iv come to realise that yet there are people out there who do so much bad things in their life and nothing happeneds to them I don't understand it. We are definitely both on the same journey yours is just slightly further ahead than mine it's good to speak to people.on different stages of this journey so maybe we know a bit what to expect and then the people I speak to that are no where near here yet I really hope for them they don't end up here. I hope it isn't to much longer suffering for u and your mum and she can be in peace out of this pain and you can learn to heal again I know it doesn't feel like it now and it will always hurt and those memories definitely don't fade but some how you do heal and learn to live as an entirely different person xxx

Thank you so much Darling34 for answering me. It's absolutely horrendous. Thank you for your advice. I've rang the palliative nurses and described how he is feeling and they are trying to get a nurse to see him sooner to prescribe something for his mental health, so thank you for that. You are so right we would not let animals suffer this, it's so unfair for us all to have to go through this pain and torture everyday. His wish is to go now, I'm angry for him he can't and isn't allowed to help himself if thats his wish. its such a hard long journey and I feel I'm about to break any moment soon. Watching my father who I love dearly be so low and sad is so painful. 

It sounds like you like me are doing all we can, and sadly that has to be enough, although I wish I could wave a magic wand and end this pain for all of us. I really wish you and your mum well. It's a very lonely ride and like you say unless people are going through this nobody really understands. I'm with you on this, all the way. Please try and take care of yourself in this awful process. I'll be thinking of you xxxx