I read an article today in the Guardian online with the above headline. It really hit home and I wondered how many other families are being put through hell because of this new government policy.
My husband was diagnosed with advanced prostate cancer at the end of November. It had spread to the bones in his shoulder, neck, hips, ribs and abdomen. He was given hormone injections and was due his second chemo treatment (just over two weeks ago) when he had a stroke and was taken to hospital. In hospital he had a serious fall which caused further bleeding on the brain. The stroke was untreatable because of his cancer and his cancer treatment was stopped because of the stroke.
He now: cannot walk (he needs two people to lift him), he is incontinent, he is often confused and has poor concentration, he has lost left hand vision in both eyes, he suffers from involuntary repetitive movements and when lucid is in denial that there is anything much wrong with him. His cancer is advancing and he requires 24/7 palliative care.
I have been told repeatedly that he says he wants to come home. I have been told that support would be available. One of the first people to broach this subject to me was his physical therapist who at one point apologised to me, saying he had never before dealt with a case where someone with such severe problems was considered for sending home. I said (and have kept saying) that I do not feel able to cope with having him at home.
To date, three nurses and one social worker have attempted to persuade me to change my mind. The social worker wanted me to list ‘my concerns.’ She sounded for all the world like a double glazing salesmen...you know the type, they ‘solve’ every objection until, in the end, they make their sale.
I phoned the palliative care nurse assigned to us when the only problem was the cancer. I was in tears and she assured me that in her opinion it was not feasible for my husband to come home because of lack of space and the severity of his condition.
I am at the stage where I am forced to unplug my telephone and am afraid to contact the hospital to ask how my husband is. Until I saw that headline today I really could not understand why so much pressure was being put on me. Now I know.
So, if anyone else is suffering this kind of absolute torment at the worst time in their lives, I want you to know you are not alone. You are not ‘bad’ or ‘uncaring.’ You, like me, just want the very best end of life care for your loved one and sometimes the best place for that is in hospital, not at home.
