Hi,

I'm sorry about your husband's diagnosis. 

I cared for my father through his cancer diagnosis and end of life. My mother and I were caring for for my dad with little input from services and we weren't given any information about end of life or what to look out for. We were left to get on with it for the most part, aside from GP input and district nurses in the final weeks. I felt completely alone and out of my depth, administering strong medication and trying to keep my dad safe when he was often confused and agitated.

Have the doctors given you any indication as to what might happen and when? It may not be the same but in my father stopped eating and drinking in his final weeks and I didn't realise at the time that he was in the stages of dying. I would beg him to eat and drink and I was at a loss as to what to do as he wouldn't even take medication despite being in severe pain. 

Have you contacted your local hospice to ask what support they can offer to you? My dad didn't give approval for involvement from services but they should also offer support to the family.  I haven't heard of palliative care not being involved due to lack of pain and this seems unacceptable. The GP did house visits to see my dad a few days a week towards the end of his life. It was a blessing and a curse as she was incredibly blunt but she was also was caught off guard with how quickly dad deteriorated. The GP should be fully involved or that is my understanding. It might be worth considering putting in a complaint.

It sounds like you need outside help, carers and support for yourself. My dad talked about wanting to die at home but he was taken to hospice to try and get symptoms under control, he never came home. I am partly grateful for this as he was sedated, they were able to keep pain under control and knew exactly what to do. He had a hospital admission three weeks before his death which was appalling, they did not have the knowledge on how to treat him. I dread to think what could have happened waiting for services at home towards the end. 

Consider telling people you need support and can't cope (even if you feel that you can). It seems they are more than happy to leave families to struggle alone unless you say you can't or won't do it anymore. I am sorry if my message is blunt, I do not know your husband's circumstances but going off my own experience when caring for my dad. I felt completely alone and wish I knew what I did now. 

Take care,