My dad has bladder cancer and we knew a few weeks ago it would be palliative care, which was confirmed a few days ago. Sadly, it’s incurable but we are told symptoms are manageable with Radiotherapy (if dad can get there, as he is very frail now). It is grade 3 and T 3/4. It has also spread to the lymph nodes.
Unfortunately, my dad has been rapidly deteriorating and is finding it hard to manage symptoms such as diarrhea. He is eating less and less to avoid having to use the commode or soil himself plus he has nausea, whilst sleeping more and more.
The hospice nurse is coming out on Tuesday. I fear a lot of interactions with professionals (district nurses for example) has been really poor and adds to the stress. The hospice nurse acknowledged today that the referral was urgent but she couldn’t come today due to being alone in the office. It’s adding to my anxiety about having to manage professionals when really, I should be focusing on caring for my dad.
Another example of this is when we told the hospice nurse dad is sleeping a lot, she said it was good and her must be comfortable. But our worry is that he is slowly losing strength and it feels like a slow death.
Can anyone tell me what to expect from the hospice nurses? Are Macmillan nurses better able to manage emotional support for family and patient? Are my expectations too high? I just don’t know who to turn to.
Dad has been prescribed ensure and cortisol milkshakes but he feels they are responsible for the diarrhea. Is there anything we can do to help with this or the nausea?
Hi Abbie888
I hope the hospice nurse visit goes well tomorrow and perhaps they may be able to answer some of your questions especially the ones around the nausea and diarrhoea.
We have not really had much interaction with hospice except when my wife was first referred though I have seen many of here who have made positive comments especially around wider care for the family so fingers crossed for you.
Many Macmillan nurses work in both hospitals and hospices as well as with community teams, there is quite a lot about their roles described here.
I got a lot of help too from my local Maggies and many have had good experiences there.
<<hugs>>
Steve
