We postponed formal diagnosis, because first we had to put out the fire that was right in front of us: the cancer. This involved surgery, a catastrophic complication, more surgeries, months of chemotherapy – a process difficult enough to go through, made even more difficult by the dementia.
The challenges, both practical and emotional, during my husband’s cancer treatment were many, but a couple of things stand out in my memory. After surgery, pain relief was provided by a button that my husband was to push – an impossible task due to his dementia; he was unable to follow instructions and simply could not make the connection between that specific action and stopping the pain he was in.
Taking medication was also problematic. He developed a serious infection and was on strong antibiotics, but staff did not realise they had to stay with him to make sure he took them. When a patient has dementia, you can’t simply leave pills and expect them to know what to do. I took to setting my alarm and phoning the ward whenever it was time for his medication to make sure he had taken it.
Thinking that the person I loved most in the world might be in pain with no way to relieve it, or that he might not be getting essential medication, took a toll on me emotionally; I felt so helpless. (I wish I’d had access to the kind of support provided by an Admiral Nurse back then.)
I will forever be grateful to the medical staff who treated my husband’s cancer and saved his life. But I will always regret that there wasn’t more integrated care in place to look after him better when he was in hospital – care that took his dementia into account.
There is no doubt that we are becoming more dementia-aware, both in the community and in hospitals, but there is still much to be done to ensure that the needs of patients with a double diagnosis of dementia and cancer are met. It is not enough only to know that a patient has dementia – there needs to be a clear plan in place as to what that means and what needs to be done differently because of it in terms of a person’s care.