Nobody helped me care for my dying Bill
LAST March, my husband Bill was diagnosed with a rare form of brain cancer. His personality, eating and mobility were all affected. At only 58, with no previous medical history, the diagnosis was both terminal and profound. He was told he had between six and nine months to live. After palliative radiotherapy, a lot of the ‘old’ Bill reappeared, but his struggle with mobility became a huge problem and, of course, it wasn’t just his problem. I was Bill’s sole carer. Despite numerous referrals to Macmillan Cancer, our local nurses and Marie Curie, we were only ever offered emotional support. Bill’s symptoms were like a mixture of dementia and Parkinson’s; he couldn’t be left alone. I requested a sitter from Marie Curie to come and watch Bill for me so I could leave the house, but I was told he wasn’t critically ill enough. Is there some distinction between ‘critical’ and ‘terminal’? Bill and I thought he just had ‘the wrong kind of cancer’. Our district nurses visited occasionally, but simply listened to our problems without resolving any. When my husband developed DVT, I was given instructions on how to inject him every night with blood thinners. Later, I was shown how to do a ‘sugar’ test; none of these tasks was onerous, but I thought that was what nurses were for. I was constantly urged to look after myself and to talk to someone, but in our position we don’t have time to talk, we’re too busy ‘doing’. To the professionals, it’s just another job, how could they understand? It’s practical help that’s needed. Sadly, Bill died on New Year’s Day. After a fall, he had to go into the hospice in Durham: the only occasion on which I called for professional help. Two Marie Curie nurses, three district nurses and two paramedics arrived and argued among themselves for nearly two hours over whether to lift a patient while Bill lay on the bathroom floor in distress, unable to understand why nobody would lift him back to his bed. I pleaded with them to do something, but was told to leave the room. Am I bitter? You bet I am. The experience undoubtedly prompted Bill’s sudden demise. If any of those professionals had a shred of humanity and had done a bit more, perhaps Bill might have died in peace at home.
ANGELA WILLIAMSON, Chester-le-Street, Co Durham.