He's at end of life :(

[Bowbowbo]

My DF is 89 and has been declared 'end of life' by medical profession. He's at home with carers, I live two hours away but am kept fully in the loop by the care agency and I handle the finances. I go down about twice a week but can't stay as there's no room. He's fully compos mentis and not scared etc, just pissed off that it's dragging on. It's that old classic, a rollercoaster, in terms of good days/bad days, short-term panics etc. I reckon it'll go on for weeks yet.

I'm just struggling with my emotions. Half of me desperately wants it to be over. The other half is terrified of how I will feel when he is no longer in my life, he's been a great dad. Any tips?

Firstly, big hugs to you. This is hard. What you are experiencing is probably anticipatory grief, and it may help you to read up on this, there are lots of good resources. What you are feeling is normal and you are not alone.

Thank you, that's a helpful tip. It takes up so much of my headspace and makes me so so tired... I'll get googling.

Make sure you tell him he's been a great Dad. Even if it makes you sad..

Well, right now he's alive, albeit with poor long-term prospects. So make the most of that.

Don't worry about beyond that point.

When he's no longer alive, he'll be free from pain, distress, boredom; he'll be in the same state as his own parents, the same state we all end up in, given enough time.

Parents die before their children. It's the normal way of things. He and your Mum would have gone through similar when they lost their parents. I found that anyone who had already lost one or more parents was kind and helpful to me when I lost mine. So don't be afraid to reach out, particularly to your older friends and acquaintances, for a bit of support.

thank you x

Take a blow up mattress. Go see him and stay. You might find it calming to be with him at the end

I’ve talked to him about whether he wants me there all the time and he really doesn’t. I don’t think it would help me now or in the future either. We had a very happy day recently with me and my DC there, lots of chat and laughs. In a way I want that to be the last time I see him. Is that weird?

Not weird at all, but I wouldn't make strict rules about it.

I'm away on holiday at the moment and it's just possible my mum will die while I'm away (she's very frail now, not for antibiotics or any treatment but has been like that since December, but now has another infection). Her care home is a fair distance from me, we see her once a week. To me there isn't any huge value in any individual visit now. She has been an amazing mum over a long life, this is just the very end of that, and one visit more or less doesn't matter - she's asleep most of the time. I have found friends, even those who cared directly for their parents, have often been quite traumatised by the very last days and I don't think it's compulsory to force yourself through them.

that’s what I feel is right too - and what dad has always said he wanted.

i was talking to a friend last night about this, she lost her parents when she was 18 and 42. She felt she was lucky to be spared what I’m going through ie the diminution, the decline etc. But then I’ve had the benefit of his love for all my 60 years to date, so I still think I’m luckier. In the end it’s just bloody hard, however it happens ☹️. I’m going to carry on being true to myself and the relationship.

thank you

I’m going through similar right now and very much understand. When my mum died a few years ago she/ we found it comforting when she told us that this is just the circle of life. It’s so hard to see them suffering at the end. Best wishes.

Very best wishes to you too 💕

If you want to go stay with him, make room.
I stayed 9 nights in a hospital chair so my dad wasnt alone.
Id already flown home from USA one day after arriving on holiday when we got the news he’d had a massive stroke which he wouldn’t recover from.

I never left the ward. Id never have forgiven myself if Id not been there x

We've just been through this with my FiL. What you are saying about wishing it was over is quite normal, so don't feel guilty. The last few weeks were a rollercoaster of being told he wouldn't last the night to him sitting up and asking for food the following day. We live 150 miles from the in laws and my DH was backwards and forwards for the last 4 weeks. In the end FiL died in the middle of the night before the family got there - this is very common. However because everyone got to spend so much time with him in the previous 4 weeks (he was still pretty with it until the last 48 hours) the family really feel that they did the right thing. We were lucky in that the care he recieved in hospital was outstanding (he was put on the Swan pathway), which really helped the entire family come to terms with what was happening. Listen to what your dad wants and go from there.

Thank you both.

No, it's not weird. I was with my dad every day the last three months and if I could turn back time, I wouldn't do it again. Not every day, not that level of caring. And he needed an empty room to die in, as many do.

My sister was so distressed by his condition in the last week, she opted not to return till the inevitable and she didn't go to the chapel of rest either.

it's your choice, it's not "weird" and stuff anyone who thinks that.

best wishes and peace to you both

It's absolutely normal to get to a stage where you kiss them goodnight and walk away hoping they just don't wake up in the morning. Totally. Dying is dull and uncomfortable.

I went through this with my dad last autumn. Except that I lived nearby and visited every day. I didn’t stay over, although spent a few nights there when they called me in because they thought it was time. He didn’t like me telling him what a great dad he was, or telling him I loved him. We weren’t a very demonstrative father/daughter, but we both knew we adored each other even without the declarations. There’s no wrong or right, it’s just a case of what works for you. It might take several days though, so you might change your mind. Watching it and waiting was the hardest thing ever, harder than being without him has been so far.

All these posts have helped me so so much, thank you! I popped up to see him over the weekend and it was good. He told me he’s ok, not scared, pretty bored, pissed off it’s taking so long. No great declarations, like @Honeyroar, as there’s really no need. If that’s the last time, so be it.

A little update. He’s on morphine now and very peaceful. I’m with him or in the next room full time. He’s just slipping away and it’s kind of beautiful. I hope there will be no more suffering, just peace now x

I remember the same phase with my partner, asleep on Diamorphine. I knew they were at peace and pain free, it certainly helped with the feeling of guilt 'hoping' it would all be over knowing they were at rest.

Best wishes for the next few hours/days.

Best wishes to you, OP. I've watched both my parents fade away in the last 3 years and it's hard. You're perfectly entitled to feel however you feel. The relief is overwhelming and you might feel nothing else for a while.

I was advised by someone not to try to be there at the end. Because it's distressing to see, and personally, I think animals are programmed to want to die alone (though I accept that's not a widely held view). We asked the hospital each day to call us at 7am if they'd died in the night.

You need rest and to be ready to deal with all the stuff that comes afterwards. Have the numbers you need handy (funeral director, GP) and if it helps you to keep busy you could start making lists e.g. funeral guests. Some people would be appalled at this approach but I found it helpful. Do whatever works for you.

Oh, and talk to him, hold his hand, play his favourite music. He can almost certainly still hear you even if he can't talk.

I got quotes from three undertakers while Mum was dying. She was a great listmaker and organiser, I felt it was what she would have wanted (!)

I wish him a peaceful death OP, you can't ask for more. Take care of yourself, it will be hard for you afterwards.

I hope he goes peacefully op.

Thinking of you.