End of life conversation

Oh that is such a sad situation for you . If he is starting end of life care does that mean they can allow visitors now ?

I previously worked as a community occupational therapist and my own experience was some people really don’t want to face discussion on end of life care . I have also listened to them and families become very upset when they were railroaded into conversations and the families held onto that as a source of pain after the family member passed . If I felt this was the case with a particular family or person I would be much more gentle and ask how their current care was and was there anything we could assist them with going forward. We often indirectly covered their wises without upsetting them . I would ask if they were comfortable or could we make things better . How were their  sleeping arrangements ? Did they get on with the staff ? What matters to them and are those areas being addressed in your current care . How did they see their care shaping up in the near  future. Others selected much more direct approaches with patients but it was not always welcome . Some patients would be direct too and specific but not everyone has a list of requirements and prefer to take it a day at a time . That gets more tricky when it comes to funeral arrangements. I always felt refusing to talk about it was a choice , a boundary and a wish . So you are possibly meeting them already by not discussing it . My dad is exactly like that . He would have the shutters well down . He told me how he lived his life is what matters and cut all talk of wishes off . I accepted his position .

Can I just say I think this is all so incredibly hard on you and you sound so caring . It’s just awful the situation with Covid . My friend got transferred to a hospice . That way her family were allowed to visit . So that might be a way of framing it if you wanted to open up a discussion. My heart goes out to you as I know you would want to be there in person .

Is his GP still involved ? Or have an established relationship. My parents really listen to theirs as they have had him for thirty years . 

You also might like to chat this through with our helpline staff 0808 808 0000 and they may be able to give you a more objective view . Too many years of work and I firmly believe how you have loved your mum and dad over the years is what really , really matters . 

We are here to support you through this if that’s any help to you . A difficult time for sure so we send you and your dad lots of strength and love .

Court 

Thank you for your reply. He’s not end of life yet but I have a feeling that with the decline it’s a few weeks away maybe. 

he doesn’t trust the doctor as yet either as when he moved to the nursing home he had to change doctors so doesn’t know the new ones at all. 

I think the home will talk to him about a hospice and they have suggested to me he might me able to visit for a day or so to see if that’s what he wants. He has taken to his bed because of his bowel problems and has lost all motivation for anything. It’s hard when he doesn’t have anyone to visit either. 

I call him everyday but he often doesn’t pick up the phone because he doesn’t want to talk. 

he had said in the past he doesn’t care about his funeral as he’s dead so we can do what we want ! 
I more would like to know where he would like to pass. Is it in the nursing home (he’s never wanted to be there) back in our family home or in a hospice. I know he is scared but I am too. I think your approach of just general talking about care would be a good one and I will suggest that to the home. I have also suggested that they try and get him out of his room for a bit and that might pick him up. 

like you say also if he doesn’t want to talk about it that’s also his wish. I am trying really hard not to worry about things I cannot control. 

Deb 

I think you are quite right to ask for him to try and be in with some company . Is he on any antidepressants etc ? Sounds a wise more to get him in with others for part of the day . 

I can totally understand how frightening this is for both of you . It’s unprecedented and it’s so hard for families.  I know every area is different by here they are now allowed one visitor a week in the garden only . My friends mum got such a boost so I hope it won’t be long until you can see him . 

Certainly if he was going to visit a hospice I would be asking if family could attend too . I know numbers are restricted but it’s worth asking . Would you be able to get help in if he came home ? Might be another way of approaching it as you would need to plan and it might allow him to get involved in the discussion. He might really get involved at that point .

Take care ,

Court 

They were allowing garden visits again but we are under locaL restrictions so they have stopped them again. 

he would get help if he went home but I don’t think it would be the care he needs. He has a lot of bowel accidents and I would be worried it would happen in the night. 

yes I think I will ask if he goes to the hospice if I can go too. I have said to the nursing home that he needs to make the decision for him and not for me or my sister. Whatever he wants. 

I don’t think he really knows what he wants either, so hard. 

deb 

Care could potentially become very patchy at home just now as well . It might be hard to predict in current circumstances.

Going via the hospice was certainly a very good option for my friend. Her family were able to visit but the support from the staff and the level of pain management made it so much easier on everyone . 

This virus has turned health care upside down . What a terrible stress for families . I am sure you are right . Your dad might just not know himself and you can only try and do your best with the circumstances that surround this .

Thinking of you ,

Court