New to the site

If you've just joined up and aren't sure where to start, this is the group for you. Tell us a bit about what brings you here, and don't be afraid to ask questions. Someone will be on hand to welcome you and point you in the right direction

The long wait....

supermoon83
Posted by

Hello everyone

I'm new here, and hoping you kind folk can offer me some support. My lovely dad has lived with cancer for 15 years - carconoid syndrome, which was well managed and allowed him to live a reasonable life. 

Just before Christmas, he started vomiting continuously and ended up in hospital with dehydration. Many weeks and myriad tests later, they found a cancerous blockage in his stomach and ultimately revealed tumours were strangling all of his vital organs. They told us there was nothing they could do and that we had to prepare for the end.

So it's now mid-May and he's been in a hospice for two months. He considered going home in late March but in the end was too poorly and felt safer in the hospice. They felt he didn't have long left.

His decline was rapid but then he plateaud and if anything seemed a bit better before getting worse again. This has happened several times where we've thought he was declining quickly but it's turned out to take so much longer than we thought.


He's now in the very final stages and last week he vomited again  (first time in many weeks) so he refused food and liquids. They got iv fluids into him for one night but couldn't manage to the following night, so he's had no fluids for almost a week now. On Saturday we saw a big shift and on Sunday morning the hospice called me and my brother at 6am and said we should come in quickly as his breathing had changed again and they thought it wouldn't be long... 


That was Sunday and it's now Thursday and he's still here. We've seen every sign that the staff have warned us about and on about six occasions over the last few days we have believed the end was imminent. I have stayed at the hospice since Monday and last night they woke me at 2am as he was batekt breathing and they believed he was about to go.... after an hour his breathing got stronger and more regular again and I ended up back in bed albeit barely sleeping. 


I'm so sorry for the ridiculously long post but I am on the edge and I'm just looking for some reassurance. I feel like my heart is going to break, I can't quite wish for the end but equally I feel I can't take another hour let alone several more days of this. I feel terrified of what is to come but also completely drained physically and emotionally, and angry that we are being put through this most awful of times. I guess I'm looking for assurances that I am not alone but also practical guidance as to how much longer this can realistically go on. I keep thinking the end must be imminent and the staff here can't quite believe we are still here.... But I just don't know anything anymore.


Thank you for anything you can share with me to help me through this.


G

lesleyhelen
Posted by

Hello  

Bless you, my heart was breaking reading your post.  No wonder you are so completely drained!  

My Dad passed away a couple of years ago (not of cancer) but some things are very similar.  He struggled to eat or drink due to dysphagia caused by a stroke. He went into hospital because his sugar levels had gone so high he'd stopped breathing.  I spent about 5 hours a day in the hospital helping with his feeding and drinking and after a week he seemed to be getting better.  Then, for some reason he would breath, then stop breathing for about 30 seconds.  He was talking fine and when I asked him why he wasn't breathing properly he just said he didn't know.  (He also had a touch of dementia).  After another week+, he started to deteriorate and was sleeping a lot.  I saw the doctors daily and they had told me that he was dying and that the breathing was an indication that the end was near.

As I couldn't get fluids/food down him (he wouldn't stay awake long enough - dysphagia patients have to be wide awake to concentrate or it goes into their lungs) I told the doctors that he'd never get better without sustenance as I really didn't believe he was dying because he'd been talking fine when awake!   They then tried a feeding tube - he hated it and told me so (even pulled it out on the first night).  After 4 days he was no better and I made the decision to remove it as the doctors said nothing had improved.  He opened his eyes and smiled at me when I said it was coming out.  I knew then he was going to die and I arranged for him to come home.  The last time he opened his eyes and smiled at me was when I told him he was on the drive at home.   The doctors then put a morphine driver in him.  It took the full 7 days from when the morphine driver went in for him to pass. (they say 7 days is the maximum anyone ever survives).  I was told the driver meant that he wouldn't suffer.  It seemed such a long, long time.  I sat with him and read his favourite books and talked etc but by the time he passed away I was grateful.  I can remember thinking that I didn't want to leave his side for a second, but just how much longer could this go on for - so I TOTALLY understand how this is for you.

He passed away 3/4 hour after I left to go to sleep and the ambulance crew advised me that this is normal that people often pass when there is no-one around.   I found comfort in the fact that there was nothing more to be done and that he was at last at peace and I hope that you can endure the awful time of watching your beloved Dad die and find the same comfort that I did after.

Lots of love and thoughts are with you,