Cancer Research UK main site

Advice as I’m confused and lost

Frainie71
Offline

My dad is end stage cancer, he had a huge GI bleed Thursday and I was at work he was vomiting huge amounts of blood. He has had a syringe driver fitted and we were told the end is near. 

I have stayed the last two nights expecting the worst however he is more lucid and clear in though and speech than he has been for weeks.

i rightly or wrongly assumed he would sleep the majority of time and would leave us soon.

has anyone else experienced this with a loved one, he’s not in pain and not sleeping all the time and I’m confused at what is happening.

can anyone share thoughts or similar situations please.

thanks

sarah 

  • Offline

    Hi Frainie71,

    Very sorry to hear about your dad.

    My mum passed away on 26 September from the Myleofibrosis but she also had Alzheimers and although she still recognised us all, she hadn't really spoken as you and I would normally, for around 3 years, it was one of the expected symptoms for the Alzheimers. However, 5 days before she died, she had what is termed a period of  ' terminal lucidity' and basically it was as though her brain had woken up and she was talking, almost non-stop! It was a gift for us and something the medical staff couldn't explain; there are some articles about the phenomenon on the internet. Mum also had the syringe driver prepared although in the end, wasn't used apart from a couple injections to help the 'rattled breathing', we were told she wasnt in any pain and after she slipped into unconsciousness, was about an hour then she passed away.

    All the time I was asking the district nurses and Dr how long mum had, I didnt understand how they knew that the end of life was near but of course, they know. 

    I know this post is sad and there are always exceptions to any situation/rules and I very much hope that is the case for your dad. All I can advise and you are probably doing this, keep asking the nurses/Dr and be guided by them.

    Sending you all the best Sarah at this difficult time.

     

  • Offline

    We got a call sept 1st that my 59 year old brother gave up on being sick all the time and tired of being hooked up to his dialysis machine every couple days for hours, he pulled the plug , I live a 10 hour drive from him, I decided to go see what was going on, we got there , he was in the hospital because his wife called the ambulance , he was out of it she said, when he awoke he got angry with her, asking her to please not to revive him, he was serious, oh oh, he signed a DNR, our family and friends started showing up every other day, the next few days he was in and out, more out though, the Doctor said without dialysis he will last only a week, they had him on morphine, was very sad to see him in this state, not really talking when he awoke, he was in terrible pain but did not want to get help, we as family had to try respect his wishes, I even thought of going to get a dialysis machine and hook him up without him knowing, he won’t know anyhow, and I was hoping if he came too feeling better he may have a change of heart, but deep down I new this was impossible , anyhow, we had the family room all week, on the sixth day my wife and I decided we gotta go back home, we left in such a hurry we better go straighten our home lives out and come back in a couple days, when we got back to the hospital the mood had really changed, people were smiling laughing, I poked my head in his room and he was sitting up talking and laughing, wow, after a couple hours I told we gotta go home and will be back, a big hug and hand shake we left there in a happy mood, after staying a night in a hotel in a different town we were halfway home, when we got back home I new something was wrong, my daughter was walking towards me with her arms out and I could tell she been crying, she gave me a big hug and said the family called, uncle passed about 30 mins ago, just like the doctor said, one week, he passed away peacefully on the 7th day,                                                                                                 Another time was 1980, my grandfather fell while using the washroom, the ambulance came to take him to the hospital, they admitted him right away, back then the hospitals would do this, I was 17 years old and my grandmother gave me a bag to take to the hospital for him, my grandfather always wore a suit on Sunday’s, go to church all dressed up in the only suit he owned, and a top hat to match, he been in the hospital for about a week now, turns out the bag my grandmother gave me to Filiberto’s him was his suit and hat , hmm, ok I thought they must be sending him home this coming Sunday? A couple days later he passed away , according to my uncle who was there when gramps passed, he didn’t say anything to his son, he got up took his bag to the washroom and changed into his suit, hat also, he then payed on his bed and passed away peacefully, my uncle thought it was strange when he came out dressed in his Sundays best, because that day was a Wednesday, we buried him on Sunday, in his suit, 

  • Offline

    Hi there,

    I hope you are well x

    did you find an answer to this? I know it has been a long time since you made this post. But I am currently in the same crazy situation with my dad! 
    feel like he is getting better after having a terminal diognosis. 
    liz x

  • Offline in reply to Liz1256

    Hello

     

    Ive noticed you're post from April and also wondered if you found any answers as my sister and I are also in the same situation with our Mum. 
     

    Thanks

    Beccy x

  • Offline in reply to beccy

    Hello Beccy

    Im so sorry to hear you and your sister are going through this with you mum.

     

    Dad went downhill slowly and was talking and lucid until the day before he passed away, all I can say is treasure this time, it's scary and a lonely place to be I know but try to stay upbeat for your mum.

     

    reminise on things and don't leave anything unsaid, I have really honest conversations and laid a lot of ghosts to rest before Dads time came.

     

    I hope that has helped

     

    take care of each other

    Sarah 

     

     

  • Offline in reply to Frainie71

    Thanks for getting back to me so quickly. We were told this time last week we were looking at days. Her palliative care nurse was amazed when she came today. Over the last week her syringe driver meds have been slowly increased. Today she has been wide awake all day, telling us what song is for us to remember us by, how to deal with grief, making phone calls to people almost to say goodbye. My sister is meant to be going back to London in the morning as she has a newborn and he needs some injections and she is struggling to not feel new mum guilt so thinks she should go. Mum has told her she isn't going anywhere but my Dad has a dream 2 weeks ago it would happen tomorrow and today a white feather was on her bed and she said it is my Grandad coming to get her. So confusing...

  • Offline in reply to beccy

    Hi Beccy,

     

    Unfortunately we found that he was just having a few good days before the end. My dad passed on the 1st May 2020 at 6.45 with me, my mum and sister with him holding him. It was calm and peaceful, he was at home and it was the best we could have ever hoped for. 
     

    We found it so hard when he seemed to be getting better, your heart is longing for it but your head knows. We tried to convince ourselves he was getting better. People told us to enjoy those days where he seemed better, but it was hard too, when we knew what was coming soon. 
     

    My dad passed maybe about a week after he rallied round a bit. That was the Friday when he ate for the first time in weeks, Sunday he was soo confused. He thought people were throwing balls all over, my sister was on the TV and was just seeing funny things. He wasn't upset by this and it did give us a giggle at the hardest of times. Monday he couldn't come down stairs, Tuesday he could barely get out of bed and Wednesday didn't move from the bed at all and needed constant care. 
     

    I know everybody is different and nobody can say how things will be for your mum, but I wanted to explain that actually it was calm and peaceful. Take laughed in the moments you can and just do whatever feels right for you. If that's being with her, telling her you love her or just being normal. We did normal, he didn't like the soppy things. 

     

    All my love and prayers with you and your family at such a difficult time, please take care. 
     

    They are with us forever xx

     

    liz x 

     

     

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.