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?

  • I'm sorry to hear about your dad. Sadly, everyone's experience of the days leading up to passing away are different. 

    My mum was in hospital with terminal ovarian cancer. Her last food was a tub of ice cream - she refused everything else. She fell asleep and slept for 3 days before passing away quietly in the early hours of the 4th day.

    My mum-in-law had dementia and was in a care home. She had been bed bound for 4 years but still ate & drank, even though she was skin & bones and couldn't hear, see or know who we were. She stopped eating for 2 days and they warned us she may be about to pass away but then on the third day she ate her breakfast, fell asleep and passed away peacefully 30 minutes later.

    My uncle was in a care home after hospital discharge (severe oedema & heart problems). He was eating & drinking but started to become bed bound over a few days due to mobility problems. He stopped eating & drinking the day before he died but he was totally conscious. He went to sleep & died peacefully in the early hours of the following morning.

    So you really can't predict how long your loved one may be with you before they pass away. One thing I truly believe is that sometimes they hang on to life while they know their loved ones are with them and they pass away whilst alone to spare the loved ones upset. My maternal grandparents did this - both died in hospital after days of lingering - my mum was beside their beds 99% of the time & only left to get a drink & bite to eat on both occasions. When she returned they had passed away. My mum believed it was to spare her & I think my mum tried to spare me, my dad & my brother as she clung on to life throughout the three nights the nurses thought she would pass away. When she did die, we were sitting very quietly in her room & hadn't spoken for hours - I think she believed she was alone & chose that moment.

    All you can do is treat each moment as precious time with your dad and be led by your dad's wishes. Sometimes a person will rally for a short time before they decline again and sometimes it can happen quite quickly and unexpectedly - you really can't tell. My thoughts are with you all at this sad time xx

  • 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 

  • Thank you for taking the time to share your experiences and sorry you've both had to go through these things.  I lost my mum a couple of years ago so do have some experience of how this can pan out but I can already see that 2 experiences can be very different. 
     

    Difficult day today - very confused and agitated / frustrated.  Having to have the same things explained over and over again. Difficult to see. At that selfish point of just wanting this to be over, it's so cruel at this stage. The positives are few and far between 

  • Another difficult day yesterday.  Asleep for huge periods of time but so, so confused when awake.  Thinks he is going mad, thinks people are spying on him.  Insistent that he is ok and doesn't need help.  Resistant to taking medication, believing that's what's making him feel this way, not the illness.  
    really struggling with the red tape around medical aspect.  Professionals disagreeing on medication.  Having to go through the steps of trying various things first before moving on to the next level of medication even though we know him well enough to know that it's not going to work.  
     

    Exhausting 

  • Hi [@WhoNeedsSleepAnyway]‍ 

    I am so sorry to hear about your dad.The title of this conversation made me click it, as my mother is in her final weeks and has been for the past 2 months.I am trying to look for symptoms of it being days but whenever I find some and I think that's the end, she recovers for another week. She has deteriorated so much and behaves like a baby - unable to use a spoon or a mug - and it's so hard to see her like this and as much as I like the idea of her still being around, seeing her like this for so long is so exhausting. 

    H‍ow are you doing? How is your father doing?

    Thank you

    Diana

     

     

  • Hi Angie

    I'm so sorry to hear about all of your loved ones. If the topic isn't too triggering to talk about, i wondered if you'd mind sharing some more with me regarding your mum's illness?  Please don't read on and just ignore this response if you feel it will be too hard to talk about.

    My mum has terminal ovarian cancer, she was diagnosesd April 2019.  It went away with chemo but returned very quickly.  We were told she had two years, but this changed to months about 3-4 months ago when they discovered it was in her bowel and lymph nodes.  In the past week she has really started to change, she is sleeping so much, feels wiped out, in a lot of pain so prescribed morphine, changes to taste, weird sensation in her ears, nauseous, loss of appetite, constipation, says she feels confused.  

    I wondered if you'd mind sharing if your mother went through this?  I know no one can give me an exact time scale, but i don't live near my mum and i feel the very sudden change in her symptoms is signalling that months have turned to weeks.  I would like to go and be with her permenately until she passes if we are looking at weeks.  I don't want to ask her if the doctors have suggested this to her either as she has tried to remain so positive about everything the whole time.  I wouldn't want to be reminding her of how limited her time here is.

    Katie x

  • I’m sorry about your dad my husband died peacefully in his own bed which was a relief he died peacefully after a fight with lung cancer lv annie 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