"Appalling communication"

My stepdad had dementia & cancer. We suspected his cancer for months but we never got a proper diagnosis, communication was appalling.

He went in and out of hospital and had a stent so he could swallow. Individual staff were kind but some staff were so unhelpful, unkind & distant I was shocked. In the last few days before he died - I noticed the last 3 days on his file had the word ‘refused ‘ scrawled across the diet section. I asked why he wasn’t being offered the liquid build up drinks, he had previously been prescribed & reluctantly we were brought one. Senior staff suggested he try the finger foods menu (we had never heard about it).

My stepdad did not understand he needed to eat & when we were not there we feel he was not getting the support to eat because he was known to have a terminal diagnosis, wasn’t making a fuss and was waiting to go to a nursing home bed.

A day later we were called to his bedside late at night, to be with him while he died which was a shock. We knew he was dying, though I don’t think my mum understood their situation because no consultant or GP had taken the time to kindly and clearly explain to her (with one of us there to support ). A young doctor finally did talk to mum a few days before my step dad died & this was the first time she seemed to understand.

We buried our mum's husband today & I finally feel I can start to process what a rotten hand they were dealt. My mum was his carer for the last few years, she has COPD, a stent following heart attack, cancer leaving her with one kidney, severe mobility issues & an awful inoperable hernia. The carer support she received was pathetic & the expectations on her to get them to multiple appointments at lots of hospitals at stupid times was crazy.

All this for want of a good coordinator when he was first diagnosed with dementia & some simple conversations to understand what they needed, not offer them some inadequate support that didn’t help their situation.

We, the family, did whatever we could but even we couldn’t fathom his diagnosis, prognosis, support offer, treatment plan etc etc. No-one took any ownership & these last few years have been much less easy than they should have been.

They both worked all their lives, never asked for any thing, started life in poverty. Why do people need to shout to get the basics?