My wonderful 93 year old Dad was diagnosed with terminal lung cancer 4 weeks ago. It came totally out of the blue. The consultant sent him home saying it was now just palliative care and 'how long is a piece of string' to his prognosis. A few days before his diagnosis he had been out shopping using just a walking stick. He was independent, running his home, cooking, gardening, going on holiday, inquisitive and active.
Today, 4 weeks on, he can barely walk, he is sleepy, his voice is just a whisper, he is weak and frail. His wish is to be cared for at home which my brother and I are doing.
We feel so let down by the lack of support. The Palliative team at the local hospice are only available for phone advice. There are no house calls. Dad can't get to the hospice to take advantage of any sessions they do. He can't hold a conversation with anyone on the phone as his voice is a whisper. The district nurse has come in 3 times in 4 weeks, twice at our instigation. On all occasions she just asked how he was and did we want carers (no thank you we can wash and dress Dad and feed him). I don't know what I'm expecting from end of life palliative care but to be honest the 'support' seems negligible.
My fear is what happens in the middle of the night? Are we attending to Dad's needs well enough? How do we know he is approaching his last days? How do we ensure we are giving him the right medical support.? It's as if he was discharged to die and we just have to cope.
I'm sorry, I don't really know what I'm asking or expecting. TV adverts for cancer charities show cosy scenes of dying people surrounded by loved ones and a friendly nurse holding the patients hand... All I feel is a sense of abandonment, fear and sadness.
