My dad, hospice mentioned today. Upset, confused

[whattodotodowhat]

My dad has been end stage heart failure for a while (he defies the doctors!). Things have been the worst they have been, he is not well and in pain (has morphine at home)

He told me he is being registered with the hospice today to enable him to have diamorphine.

It all seems too real, I am scared, confused and sad. All I can imagine is telling my two boys (6, and 3 and worship him, see him most days) he has died and that's awful as he's still alive. I have no idea how long he will go on. Its been a rollercoaster for years.

My DH is no use, he has never lost anyone, has both parents and grandparents. He can't find the words to comfort me so said very little and I am so cross (possibly unfairly)

I feel lost and just wanted to 'tell' someone, even if it is a bunch of strangers on line.

[HolgerDanske]

That's so difficult, I'm sorry.

[Staywithme]

I'm so sorry your dad and your family is going through this. I lost my husband recently after a two year battle with cancer and am so grateful for the help that the hospice provided. Hopefully your dad will benefit too and at least get some physical comfort from hospice treatment as they are the experts in pain. I would suggest that you talk to your kids and explain that grandad is very sick and will not be getting better. The hospice should have some booklets that will help you prepare them and anticipate some of the questions they might ask. Thinking of you.

[whattodotodowhat]

Thanks holgerdanske I just don't know what to think / feel. I assume he can use it as needed but not necessarily all the time until near the end. Can't really ask him the details.

[Staywithme]

I meant to add that it's perfectly normal to want to talk about it again and again. I told everyone I met, from neighbours to shopkeepers. It just seemed to be endless and you'd be surprised how good people are.

[whattodotodowhat]

Thanks staywithme I am sorry for your loss.

They know Grandad is ill (its all they have known) but they will need preparing. It seems premature, its been so up and down. Maybe that is why I can't take it in.

[Staywithme]

It is very exhausting and distressing when someone is that ill as they will have bad and good days and their health and emotions will greatly affect how you will feel, so it's normal to be all over the place. My husband would be very ill and I'd be stressed to the hilt then he'd get over that period and you would think I'd just been told he'd been cured, although of course I knew otherwise. You will find that your moods will be up and down and part of this will be because you will feel helpless and more so if the information you're receiving is limited. You may find that you will feel irritable at times and this is normal, it's also ok to feel happy too.

[whattodotodowhat]

Thank you staywithme I think people must look at me and think I am heartless as I just get on, my coping mechanism i guess. I tend to cry when i am on my own.

[OttiliaVonBCup]

He probably he won't have to stay in the hospice all the time.
They sort out the painkillers, they have people there you can discuss everything with, even social workers.

It's fine for you to feel cross and stressed and everything else.

[whattodotodowhat]

ottilavonbcup thanks you, that's what I think will happen. Was so shocked I didn't ask anything. DH and I have had a chat, he is struggling too I guess.

[Staywithme]

Don't worry about what other people think OP. They don't know what's in your mind or heart and at the end of the day, their opinion counts for squat, no matter who they are. I kept being told how strong I was during my husband's funeral because I didn't collapse into a heap and I'm sure some thought I was cold. The lose of my husband has almost destroyed me but I keep my feelings closed down until I'm by myself as I don't want the children, even though they are grown, to see me like that. They would fall apart at seeing me hurt so much. I 'get on with it' as there is no alternative. If you or I fall apart, who looks after the family. Unless people have been through what you're going through they will never understand.

One thing I must point out to you is that people will give well meaning advice before and after your father dies and you'll want to tell them to eff off. They will, in the main, mean well, but trot out the usual comments. "I know how you feel, I've lost my uncle" "at least he won't suffer/isn't suffering any more" "he doesn't look that ill" "now, don't be negative, you don't know what's round the corner" bla bla bla. People will trot these things out because they don't know what to say and just repeat what others have said in order to say 'something' 'anything' instead of leaving an uncomfortable silence. Try to stay calm and not ripe their fecking heads off.

Though as I said earlier, most people will be very supportive.

[OttiliaVonBCup]

That's true.
People feel they have to say something and sometimes it all comes wrong.
Most people mean well, but it's still tiring.

It's ok to feel whatever you feel, don't feel guilty.

[whattodotodowhat]

staywithme thank you so much for sharing your experience during such a painful time. It must be very hard for you and I appreciate it more than you know. That is excatly how it is and so far I have managed not to scream at anyone (except DH).

[bensam]

I'm with you OP. My lovely dad is in the final stages of terminal pancreatic cancer. We're just watching him wither away and it's just too much to bear at times. There really is nothing anyone can say to make it more bearable. It's just shitty - full stop. (((hug)))

[whattodotodowhat]

Will speak to 2 close friends when I can find the words. They have been there in the past and understand how much of a roller coaster it is.

Going to take the boys over tomorrow (if he is having a reasonable morning) then out for the day somewhere nice. I will pop back to see him on my own in the evening.

[whattodotodowhat]

bensam I am so sorry to hear that. It is just shitty you're right, I get angry that its unfair and then have to rein myself in. I wish you strength to face the coming time.

[NorbertDentressangle]

So sorry to hear about your Dad's situation.

I don't know where you are or which hospice your dad will be going to but hospices can offer you all an amazing amount of support.

Our local hospice has groups for children to help them deal with their loss, have family support sessions, all sorts of support groups.

Please phone them and ask what is available for you to help with your feelings of being scared and confused.

[whattodotodowhat]

Thank you, that's a good idea. I will definitely do that.

[marilynmonroe]

I lost my mum a few weeks ago. She was in a hospice for the last 2 months and it was an amazing place. She was treated with care, dignity and respect until the end.

I also have 2 young kids and I dreaded telling them. They have kept me going though as they keep mentioning her at random times and associating her with the lovely sunset or flowers. It's lovely.

There is no right or wrong way to deal with death or grieving. Sometimes I feel guilty that I have not thought of my mum but then it's the small things that can take me by surprise. I was at the garden centre yesterday and really missed her advice. When I take photos of the kids I want to send them to her. This really upsets me but it's something I have to get through. You have the love of your family and that will be the best support for you.

What you are about to go through is horrible but there will be light at the end of it.

[PunkrockerGirl]

I'm a hospice nurse, OP.
Your Dad may well be admitted for a period for symptom control and then sent home and followed up by one of the hospice community nurses if he's stable enough. Does he have a heart failure specialist nurse you could both talk to?
It's a difficult conversation to have, but do you know where he wants to be cares for at the end of his life? Whether it's home or hospice, the hospice will do everything they can to facilitate that and to control any distressing symptoms.
If he doesn't want any acute hospital admissions, make sure his GP and other health care professionals involved are aware of that.
Sending you

[whattodotodowhat]

marilynmonroe Thank you. I am sorry for your loss. I think what you said about the kids is so true. My eldest still talks about his great nanny and his memories are comforting, even if it can upset me when I am not expecting it.

punkrickergirl that's really helpful, thanks. He has an amazing heart failure nurse who knows how to handle him and his needs. He has a plan for the end, he prepared it with her a long time ago (during a bad bad period). You are spot on about the a cute hospital admissions. I have spoken to him this morning and it seems this is why his nurse as started this process, so that can be avoided.
Typically he (and thankfully) he had a good night and is on good form this morning and I feel like a fraud. Although it can all change so quick. I think that is the hardest bit, which makes me sound ungrateful for the good bits.

I did not have a good night, had horrible dreams and feel teary today. off to stomp through the woods with the kids, that will help clear my head.

Thanks you all, I really needed some support last night and today and it has helped a great deal.

[PunkrockerGirl]

Oh poor you OP. It's such a rotten time for you and not sleeping well doesn't help.
Sometimes people find the concept of hospice a bit scary. I think you'll find that their care will be excellent though. They will look after you and your family as well both during your dad's illness and afterwards as well if you need it.
Be kind to yourself.

[whatisforteamum]

my parents had hospice at home nurses to call on them when they were both on chemo for incuarable advanced cancer 3 yrs ago.The nurses could prescribe the best meds for them.They are both still alive but now Dads 2nd chemo hasnt worked and is being stopped i guess he will be assigned a nurse again .Im sorry about your Dad it is so hard isnt it.Some people have said awful things to me and sent get well cards to mum and Dad as if they have the flu !!most people do mean well but cant deal with serious illness (we have no choice)Take time out for you [FLOWERS]