Hello Serendipity, 

Hopefully one of the other community members will be along soon and able to share their experience of meeting hospice nurse. 

I just wanted to reassure you that it's okay to be yourself. You are meeting this nurse because you love and care about your brother and you want to be there to support your Dad as well. It's natural that you might become upset during the meeting. The nurse will be used to talking with patients and family who are worried and upset. It's important that you are honest about your feelings to her so that she can help you and your Dad and importantly your brother. If she doesn't know and understand your questions and concerns she might not be able to give you answers, information and support. 

Thinking of you, 

Jenn
Cancer Chat moderator

sorry to hear about your brother. when i met my husbands pallitive dr at the hospice for the 1st time i was dreading it as i didnt know what to except, but it was fine they dont mention death they just disscuss pain relief what it does and how he feels. my husband has stage 4 rectal cancer. if you think of anything to ask write it down no matter if you think it sounds daft, they are there to help and make him comfortable and help with pain. 

i hope this was of use. let me know how you get on please x

Hi thank you so much for that. I am so sorry about your husband.

We did meet with the hospice nurse along with the main carers from my brothers carehome. She seemed nice and I think was trying to understand about my brothers disabiity which is a good thing but he is not easy to understand about bless him so I do get that she does not really understand how best to support him, but hes my baby in my heart so I feel extra protective and always have. They have not yet come up with an alternative to the just in case medicine box for him (she gave us a leaflet about it then said he cannot have it anyway as its all injections and he will just let anyone do it, bit upsetting to be shown something that he yet again cannot have)

she said they normally spend time getting to know the patient but this won't be the case with my brother which I have to admit upset me too as he still needs to be familiar with people involved in his care, just because he may not respond to them does not mean they should not spend time with him, but maybe I am just being over protective/defensive I don't know.

Hi Serendipity,

Allthough I have not responded before, I have been following your threads regarding your brother. You sound a very caring sister. I have found that hospice's are very good at sorting out pain relief and when my mother was in one several years ago, they suceeded where the hospital failed at sorting my mothers pain.

Did the nurse say why they wont spend time getting to know your brother? Just because he has problems should not mean he is treated any differntly.

Take care and am sending best wishes and kind thoughts to you and your family, Brian.

Hi serendipityb,

I'm very sorry to hear what you are going through, you certainly do sound a caring sister and of course you want and deserve the best for your brother.  My experience of hospice nurses was good; having lost my Mum and Dad back in 2013 they helped both them and me enormously.  However, like all professions there are always certain people who will "go the extra mile" and are that bit more special; (I luckily found one such hospice nurse who was with me during both my parents illnesses).  I think your hospice nurse is wrong in not intending to get to know your brother, and as difficult as it is for you just now I really think you should try and question why.  People should be treated the same despite their disabilities and if this particular nurse is unable to do that then I think the hospice should be able to offer you an alternative nurse who can.

I know this is a terrible time for you and sometimes it takes all our strength just to face up to our loved one's diagnosis let alone cope with any other problems, however if you can find the strength to challenge the nurse's attitude perhaps you would feel more reassured yourself.  This is of course, just my opinion; wishing you lots of strength,  Hope 

thank you Hope

I live a long way away from my brothers carehome and the hospice but have spoken tot he carehome and they have said they will have another word when she comes again and will be making sure she sees him every time she visits and emphasise that we want her to get to know him, so will see how that goes,

Hi again serendiptyb,

I was glad to read you have spoken to the carehome and hope you are reasurred that they weill be keeping an eye on the hospice visits.  It must be difficult to be living a long way away at this time.  Do let me know how things are going.  Thinking of you.  Hope 

Hi Hope, apparently the nurse visited again recently and went in to see him too which is good.