End of life wishes

Just starting a new conversation on behalf of ruthie67. This is what she has posted:

Sorry to hear that your dad is declining and that you had to have the tough conversation about end of life wishes. As you say, it was good that you have done this and will hopefully make a big difference for him later on.

Has anyone else had to deal with a similar conversation?

Hi Ruthie
Sorry to hear about your dad. Im struggling at the moment too. Dad is in the hospice but we are hoping to get him stable enough for him to come home. 4 weeks ago he was driving and gardening etc and suddenly he went downhill and can’t get out of bed without help. He’s very sad and all I want is for him to enjoy what time he has. I suppose that’s easy for us to say but not so easy when in that situation.
Having to watch someone lose the identity they once had is heartbreaking.
Stay in touch and we can support each other through this awful time.
Xxx

Hi Lottie
I’m sorry to hear about your Dad too :frowning: I fear my Dad will suddenly decline too as your Dad has…at the moment he can potter about and do a little drive (sometimes), but he’s struggling to breathe now without pain and has lost so much weight very quickly, it’s so hard to watch. I’m trying to keep his spirits up and support both him and Mum, and help him talk through what he needs to at times, but I just want to cry when I get home, it’s all so painful. But we must keep strong for them, so I just keep putting my armour on and getting on with life as you have to. I know everyone has to die one day and Dad was originally diagnosed with a different cancer 22 years ago, so he’s been lucky in a way to have got this far, it’s still painful though. Hope you’re ok and that you have a good weekend, hugs R xx

Hi Ruthie,

I’m so sorry to hear about your dad :frowning: I have just had to deal with a similar feeling before my nan passed away on Wednesday.

We too were told my nans cancer was terminal and then out of the blue was told she did not have very much time left which was a great shock. My nan had only gone into the hospice for respite to get her medication under control before returning home where she was going to have carers.

As soon as she arrived at the hospice she deteriorated rapidly and was dosed up to relieve her of the immense pain (on a scale of 1-10 she was 10) she was in. We were told she could have hours or days and it was an awful feeling. What I would recommend is just making the most of everyday with your dad and supporting him the best way you can. It is strange when you are anticipating their death because you know what’s coming.

I think the better prepared you are the better :-(. Read about end of life and anything you feel you should know. Most importantly talk to family, friends, nurses etc because this can alleviate any build up of emotions. Also release your emotions.

Thinking of you

x

Hi Ruthie67,
I am so sorry to hear about your Dad and really feel for you.
I was in a similar situation last year with my Dad who was told he was terminally ill, so can appreciate how awful this situation is for you.
My Dad reacted REALLY badly to his diagnosis - and became a different person, very angry and shouting at my poor Mum, me and my sister. It was truly awful. But I guess none of us know how we will behave unless we are in that position do we??
I had to have the same conversation re funeral wishes that you have had but it is SO important as it’s your last goodbye and as you say, you want to get it right for him.
My Dad to the bull by the horns and planned the whole thing himself in the end but excluded everyone else, meeting the funeral director on his own, 4 months before his death - which upset my Mum terribly. It did make life easier for us after his death though as we knew everything was arranged exactly as he wanted and there was still room for us to change a few things - the wake etc. But the music, prayers, cars, etc were exactly as per his instructions.
My poor Mum was in denial I think and is now left on her own after 64 years of a difficult marriage. Still bereft. I miss my Dad -he was a charismatic, charming man. I don’t think he quite believed he would die - but he did on 13.1.16.
I wish you love. Cherish what time you have with your Dad and although those conversations are not easy - remember whose daughter you are and polish that crown!!!
J xxx

Hi Leah,
Thank you for replying to me, it was very kind and thoughtful x So sorry to hear about your Nan, what a shock when she only went to get her meds! I’m making sure I see my Dad every day as I live close and I tell him I love him lots…I’m sorting what I can now and am thinking about his eulogy and the music he wants. He’s asked for one of my songs (as I sing), thankfully I have the song he wants already recorded on a disc as I know I wouldn’t be able to do it justice live! I hope you’re getting through things with your Nan, remember her happy and out of pain if you can, she was a special lady to you all. Love R xx

Hi Charasi,

Thank you for replying - it was lovely to hear from you and that I’m not the only one who’s in this awful situation with my Mum being so angry with me and poor Dad. I know a lot of it is stress/fear related (probably as well as the onset of some dementia!), but it’s so horrid watching her treat him so aggressively when he’s the one dying and having to cope with that and all that comes with it.

It is as you say truly awful. I’m glad I’ve done the funeral and end of life wishes conversation. It was hard, but ok I guess as Dad’s quite resigned to the fact he probably hasn’t got long and was clear and calm about what he wants. I do want to get it right for him, it means such a lot him knowing we’ll get it right and us fulfilling his wishes…I’m taking some time now to think about things like his eulogy and music etc…he’s asked for one of my songs (as I sing) and thankfully I have the one he wants already recorded!

Gosh that must’ve been hard watching your Dad plan it all himself and leaving everyone out too…difficult for your Mum too. You must all still miss him terribly, it’s still quite recent for you. Are you coping ok? I hope so…remember the good times and all those lovely characteristics you spoke about…

It made me smile when you said “polish that crown” :slight_smile: I have a show coming up in October, which Dad is desperately hoping to be at - but I’m playing a Princess and wear a crown…so I will indeed polish it! Thanks for your support and remember to look after you…

R xx

My dad is also in palliative care now and I’m struggling too. He thinks he is going to recover and I’ve not had the strength to tell him that he is not. If he asks, then I’ll try to be honest but I can’t initiate the conversation. He is very deaf so all conversation is difficult.
Watching him decline is torture but my real problem is that I know he wants to be at home with us. I know that we can not cope with his needs. My brain tells me that I’m doing the right things but my heart disagrees.
Anticipatory grief is very difficult to cope with and so is just not knowing how long it will all take. There is also a lot of guilt because there is no way to make things better.
I wish you strength and positivity in your challenge
Thank you for listening
Toodie

Hi Toodie,

Welcome to the Sue Ryder Online Community. I’m so sorry to hear that your dad is in palliative care and that you are dealing with anticipatory grief.

You say that he wants to be at home, which sounds really hard. Is he currently at home and wants to stay there, or is he in a hospice or other care setting? Although it’s understandable that you feel some guilt about not keeping him at home, but it sounds as though you also know that it’s important to get him the right care. Being in a hospice can also free you up to spend quality time with him as family members rather than carers, which will benefit both you and him.

There are many other people on this site who are or have been in similar situations and will understand much of what you are going through. I hope it’s helped a little to read the other posts in this conversation. To get more replies, you may also wish to start a new conversation yourself to tell others about your situation ask any questions you may have about other people’s experiences.

If you have any questions about what care is available and how to access it, Marie Curie have a free helpline on 0800 090 2309.

Thank you. Yes I know that we have done the right thing but my heart breaks every time I leave him in the nursing home - which is really good with lovely caring nurses and care staff. I’m just struggling to get my head around it all. Indeed my entire family is struggling. The hospital told us on 5 February that he was going. A couple of days later he bounced back and we have been on a roller coaster ride since.

It’s all very difficult. He talked with my son yesterday (he’s 36) and was categoric about killing himself. I’m trying to keep things right for dad with lots of visits etc but the rest of the family need consideration too. My head just goes in circles. I’m going back today and will talk with the nurses. I don’t think dad can make good on his threats - he’s much too weak. However I’m concerned about how badly he feels.

It’s just a dreadful situation and difficult to see a clear way forward.
Thank you for listening x

Sorry to hear that your dad is feeling so low that he has talked about killing himself. It’s definitely worth talking to his medical team at the nursing home about this to see if they can offer him any support with his mental wellbeing. As you say, it’s not just about keeping him safe, but about trying to help with his emotional state.

It sounds like you and other members of the family are doing a lot to be there for him and giving him a chance to talk, which is really important. The Samaritans have some information on supporting someone who’s expressed suicidal thoughts. It is not specifically aimed at a situation where someone is at the end of life, but there may still be useful information there:
What should I do if I’m worried about someone else - The Samaritans

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