Please share your experience of your loved ones final days

We were told 2 days ago that my Dad was now expected to have just days left.  It's not unexpected.  I'm trying to refrain from the emotional side of things and be pragmatic.  
As difficult as it is, I would really appreciate people sharing their experiences of the last few days.  
3 days ago my Dad was asleep for 33 of 36 hours.  He's woken a little more since and has dug his heels in to make his way out of bed once or twice but it's a mammoth effort.  He knows his prognosis.  He's very confused now - we often have to explain the conversation with professionals several times a day. When awake he is still trying to have some humour which makes it so hard to believe that at any point he won't be here anymore. 
He is still eating, albeit not a lot .  Surely it can't be days if he is eating & drinking?

Parents
  • I am so sorry about your dad. It's the hardest thing to go through. Sounds very similar to my Mam in respect of digging his heels in. We were told my mam had a few months left and within 10 days she had passed away. But she went downhill so quickly, the nurses were amazing with her and they came out and said that she would be sleeping all the time in the end, stop eating and not walking but that was totally not the case with my mam. She was so confused in the last few days but she had moments of humour, she was eating chocolate the day before she passed and we took her out in her wheelchair into the back garden for some sun and even the morning of the day she passed she was trying to get out of bed. She was in a lot of pain so we asked the Macmillan nurses to come out and they gave her as much pain medication and anxiety meds as they could to calm her down and she eventually went to sleep and then her breathing changed and that's when she went in her sleep. My mam didn't sleep much at all before this, we think because the nurses said at the end she will sleep all the time she said that scared her so much that she always fought her sleep. She had a catheter in but would wake up every hour and demand she needed a wee and wouldn't stop until we got her out of her and put her on the comode. My dad and me slept downstairs through the night to be there if she needed anything, I think she thought she was fighting it but getting out of bed all the time. We just knew that morning that it was going to happen by the change in her breathing so we got the whole family to come and they were all there. In a way I am glad she didn't suffer for months on end but I wish I could have 1 last conversation with her as one day she woke up and was so confused and we didn't expect it. Thinking of you and your dad x 

  • came across this post and I can't actually believe it's as if I was writing it about my mum , my mum went exactly like this , it's must have been the same type of kidney cancer renal cell  . My mums treatment was up and down and in September 2021 we were told that the treatment wasn't working to reduce size of tumour on her kidney and the secondary lung cancer was growing. My mums weight was at an all time low and she didn't have any sort of appetite so that worried me , we had an appointment at our local hospice who went through what would happen about managing the pain rather than being on treatment , they said palletive care nurses would come out etc, before this was even in place (end of September) my mum felt breathless so I took her to our a&e department , there was fluid around her lungs and they would need to drain it , the doctors said this would keep happening but could be managed , mum was kept in and out on a ward , we all knew some how that there wasn't long , by October 09th mums pain was unbearable so they decided they would fit a driver . Mum was up dancing on the ward full of Energy when she had it put in her arm and the following day they decided to take mum to the hospice and do a two week pain management to set the driver perfectly to then send her home , I last seen my mum as her normal self on the Wednesday , I kissed Thursdays visit as we had family over from Spain to see her and with covid we couldn't all go in , well this is a massive regret because Friday morning we all got called up as mum had deteriorated , when we got there mum was in a bad way was hardly waking and when she was it was for a wee , weirdly she has custard and cake around 3pm and we had to feed her , she was so agitated to get out the bed into a wheelchair and go outside , we managed to push her out into the garden with the help of the staff and it was a gorgeous sunny winters day , we played Abba and it was hurrendous but also nice at the same time , knowing my mum would never pull through this was awful , the next morning me and my two younger siblings and mums partner sat by her bedside and her breathing got slower and slower and she passed Saturday night it happened faster than I ever imagined but even those two days where torture knowing what would happen but not sure when hope this helps someone who's going through similar situation x

  • Wow this is so similar it's scary! My mam had renal which had already spread to her ribs when they found it, then went into her lungs, spine and liver. Her tumour in her kidney was shrinking as well but everywhere else was growing, was your mam on a tablet form of chemo? This is literally like reading about my mam, I can't believe it! My mam was sooo agitated as well and would try and get out of bed every 5 minutes for a wee, me and my dad would sleep downstairs next to her bed and get up and see every hour because she was scared to sleep and kept getting us to get her out of bed because she needed a wee (she had a catheter in) so it was her way of not going to sleep because she was terrified of dying. That was the worst part, that she was so scared:-(. 24 hours before my mam died we got her outside in the garden and it was sooo hot in April and we were listening to the radio, and it was horrendous but also nice like you say and then the next day after Macmillan came to calm her down with drugs her breathing changed and she went xx 

  • Aw , it's just heartbreaking isn't it , how's yours dad coping ?, My mum and dad are separated but remained friends as me and my brother and sister are to the same dad , my mum has been with her partner 13 years and he's struggling without her , my mum was on the tablet form yeah , at first though she went onto immunotherapy but was really sick from it so couldn't continue on it . My mums partner asked me yesterday when we should sort mums clothes out but I just can't do that right now , I see her number on my phone and last messages and it hits harder I'll never have that again xx

  • My dad seems to be coping, but he's never been one to talk about how he feels or show emotion really! I was worried he would be going to the local pub every night without her but he isn't, he goes to see his friends at the pub a few times a week and walks for miles with the dog! Before my mam died me and my boyfriend bought a house 8 doors down from them, so I'm literally along the street and just pop in and see him a lot. My mam and dad were together 35 years and married 31 so it's been so strange for my dad but I'm proud of him. We sorted mams clothes out a few months after and it is really hard but we haven't given anything away yet, I've just taken things I liked and my sister and brother has done the same and it's nice having her warm fluffy hoody to wear when I feel down. We got memory bears made from her dressing gown and they are amazing! Do you still see her partner since your mam? I get exactly the same feeling, that her name will never pop up again or picture I had when she rang. I can't bare to delete her messages. I have screen shotted them all incase they get deleted by accident. They are mostly her in hospital which is sad but she had a good sense of humour so always made a joke of it. You don't have to do anything now if you aren't ready, her clothes and things can wait until you're ready to let them go or even if you want to keep them. That's why we haven't taken anything to the charity shop yet, it seems so final doesn't it xx 

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  • My dad seems to be coping, but he's never been one to talk about how he feels or show emotion really! I was worried he would be going to the local pub every night without her but he isn't, he goes to see his friends at the pub a few times a week and walks for miles with the dog! Before my mam died me and my boyfriend bought a house 8 doors down from them, so I'm literally along the street and just pop in and see him a lot. My mam and dad were together 35 years and married 31 so it's been so strange for my dad but I'm proud of him. We sorted mams clothes out a few months after and it is really hard but we haven't given anything away yet, I've just taken things I liked and my sister and brother has done the same and it's nice having her warm fluffy hoody to wear when I feel down. We got memory bears made from her dressing gown and they are amazing! Do you still see her partner since your mam? I get exactly the same feeling, that her name will never pop up again or picture I had when she rang. I can't bare to delete her messages. I have screen shotted them all incase they get deleted by accident. They are mostly her in hospital which is sad but she had a good sense of humour so always made a joke of it. You don't have to do anything now if you aren't ready, her clothes and things can wait until you're ready to let them go or even if you want to keep them. That's why we haven't taken anything to the charity shop yet, it seems so final doesn't it xx 

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