Do we need to lower our expectations?

Dad was diagnosed in Feb this year.  We were told the tumour was small and that he would have rounds of chemo and possible surgery, so all was hopeful. Unfortunately he had a reaction to the chemo and there were delays in between each round while the oncologist made decisions or was ‘away’ (you would think there was only one oncologist in the whole trust but I know there isn’t). After about half the disjointed rounds of chemo he should have had he had another scan which the hospital lost, which delayed the MDT by another week, then he was told the oncologist wanted him to come in and see her, but couldn’t see him for a week… the most anxious week of our lives. And at that appointment she dropped the bombshell that there had been spread, no more active treatment would be given and they were handing him over to Macmillan for palliative care. Thanks very much! 

Through all of this dad has been really well, went on his summer holidays etc and you wouldn’t know he was ill. About a month ago he became very unwell, had some surgery and ended up in the local hospice for respite because he hadn’t been eating and was very weak. The hospice wasn’t anything like I was expecting - it was so clinical and with the single rooms and reduced visiting he was really lonely and isolated. Because he ate a bit of food they let him come home. He’s been home about two weeks now and is so weak and tired - my dad previously walked three miles a day and now walks with a frame just to the living room from the bedroom we’ve created downstairs for him. The decline in a month to now is staggering. He is not really eating - everything is too dry, too sweet, too strong, he doesn’t fancy anything. He is hooked up to a syringe driver and the hospice nurses were coming every day to do this but they have seemingly handed this over to the district nurses now. We asked the nurse today why that was and she said because there had been no change and the hospice would only get involved again if his symptoms worsened. Wouldn’t it have been nice for the hospice to tell mum and dad this? Mum filled in the forms the hospice gave her to get carers to come and help her with dad over a week ago and hasn’t heard anything. Dad feels like he’s been abandoned. Nobody has had a conversation with him about the fact he is or isn’t going to improve from here and what he can expect, or how long he may have left. It’s an awful question to ask but we would all like to know what we are actually facing. Shouldn’t someone have done that? Mum phoned the hospice because dad has just retreated in to himself and won’t talk to anyone, and they said she had to phone later in the week to talk to the chaplain. Surely someone medical would be better to answer dad’s questions? I feel awful saying this but he’s not the easiest patient which must be so demoralising for my mum and she’s very tired. My sister and I would handle things very differently but we don’t live with mum and dad and my parents are of the generation that don’t like to jump up and down and cause a fuss. But I think they should! My dad is a very private person and hates us getting involved, hence I’ve left lots of detail out here.
Do I just need to accept that care and attention for terminally ill patients just isn’t that good, or are my parents getting a rough deal here?