Advanced care

Hello , I read your other post where you say you have difficulty talking face to face and you find things easier on line, I’m a bit like that myself. I was wondering if your palliative care nurse picked up on that and felt that you were answering at an emotional time rather than a considered response, so she was perhaps in a way giving you more time to decide. When I had my first palliative care visit two nurses came and they went through a folder of information, it included info about the local hospice, I’m wondering if they have done the same for you. That way you could talk through the choices that are available home, hospital, hospice and ask her to talk about the info on each one what are the pros and cons of each choice. The care they could give you at home from carers coming round, familiar surroundings, possibly easier for family to be with you, but drs further away. A hospice with medical staff and facilities for relatives, and perhaps they wanted to arrange for you to have a visit to see it. 

Its not an easy thing to think about or to read any info on if you are not in the right mind set, I’m reading between the lines and thinking her “it’s fine if you don’t want to talk about it” meant she felt it wasn’t the right time for her to talk about it with you, or for you to listen, a bit of rabbit in headlights moment. But at her next visit it might be, just ask her what her thoughts are as she will probably have experience of all your choices, on best medical care, patient and family experiences.

I don’t often pop in to post in this group but you reminded me of my palliative care talk visit 4 years ago this July.

Hi it

My appointment was at my local hospice I knew it was about my advance care plan . I did ask what my option were she said in hospital which is not fair on nurses the hospice or home . I had decided a long time ago if anything happened 2 me I would definitely go into a hospice. Reasons for my decision when I lost my husband 13years ago his choice was to b at home I found it very hard especially the last 5days I know every death is different but I'm only going on what i have seen n experience i dont want that 4 my children.  I told her I wanted the hospice n she ask when that's y I said when the time come I cant do anything 4 myself then felt I had to explain about more that's when I continue 2 say when I cant do eat wash ect . She is comin to c me at home after I've seen my consultant on Thursday 2 c if chemo will continue or not .in the room was me my 2 older children the palliative care nurse n a dr from the hospice.  My understanding 4 the meeting was 2 look around the hospice n make decisions regarding my care but she stopped the meeting until after I've seen my consultant 

Kym so confused 

X 

Hi @Kym66, I can see now why your confused, I was rethinking my visit when they came to my home after I’d come out of hospital. I hope you got a lot out of your visit to the hospice and that it was a nice place. I am not sure if you are saying that you didn’t feel listened to, or if you are worried that they are moving on to when is it best to be admitted to a hospice rather than is a hospice the right choice. 

In my area the hospice has limited beds so people go there for respite care, or for visits under two weeks when changing medications to get pain under control as well as for end of life. The staff seem wonderful and it has a lovely garden with lots of bird feeders. Some hospices have day treatment areas for art or holistic therapies, and can be visited on an out patient basis, the one near me doesn’t.

I don’t feel I can lessen that confusion for you but I hope your hospice is nice and that your visit with your consultant and your next meeting with the nurse goes better for you. 

Hi it

Thank u 

I didn't end up looking round the hospice it wasnt just me who was confused by the appointment my son was as well he said as far as he was concerned I answered the question in the right way he is going to take the night of work when she come to my home n he said he is going to ask what respond she was looking 4 

I told him please dont b to much to the point he said we need 2 know what she meant by end of life care because clearly we got it wrong . It's just so hard dealing with all this .I dont even feel unwell apart from chemo after affects n the pain (but been in pain since xmas think I getting use 2 it now  n I definitely don't feel like I'm on the verge of diein right at this minute  

Thank u for your reply it has helped I now know it's not me confusing things 

Kym

Sorry kt 

Spell check I meant 

Hi kt not it 

Hi , I did smile when I saw ‘it’ and thought that’s what spell check had done. I prefer the What Katy did books than the child called it book

I am sorry but thank u 4 givin me my 1st smile of the day 

Kym

I hope you get many more as the day goes on

Hi Kt 

Haven't seen you around these parts for a long time, how are you? 

I'm still stable Mabel, the treatment is keeping me just above danger level regarding my blood.

Tvman

Hi Kt 

Haven't seen you around these parts for a long time, how are you? 

I'm still stable Mabel, the treatment is keeping me just above danger level regarding my blood.

Tvman