Imelda Gilmore is married to Graham (68), who has younger onset dementia and lives in residential care. Graham is in the late stages of dementia, and has had three presentations to the emergency department (ED) due to falls. Imelda writes that Graham’s last ED visit was much less stressful than previous trips, as unnecessary investigations were avoided, and the focus was on Graham’s comfort.
“When staff actually “get it”, the experience for the patient and the carer is much less stressful…”
Although thin, Graham appears physically similar to any other male of 68. However, he is frail, totally unable to interact with, or understand, his environment, and is unable to respond to questions or follow instructions.
I had heard some frightening stories from other carers of people with dementia about the consequences of a hospital admission, so I was worried when Graham had his first trip to the ED following a fall. I rang the hospital to explain that Graham would not be able to understand instructions or what was said to him. Once I arrived, I had to repeatedly explain that Graham could not understand, but that didn’t stop some staff shouting in his ear in an attempt to make him comprehend.
Hospital staff were unaware of Graham’s advance care plan and would have resuscitated him if he had had a cardiac arrest. Once cleared of infection, Graham returned by ambulance to the nursing home. He had seven terminals stuck to him and hit one of the nurses who tried to remove a couple.
Six months later, after a loss of consciousness following a fall, Graham was taken by ambulance to hospital. I rang to alert the staff to his degree of dementia. Again I sat by his bed all day, repeating the need to understand his inability to respond. This particular time, Graham spent most of the day lying back with his eyes closed; the lights and noise appeared to be bewildering to him, so it was easier to close his eyes. Each time I left his bed for a break, I had to make sure someone was keeping an eye on him.
By the time I had been at the hospital for 13 hours, I was exhausted and had to leave before the ambulance transport could take Graham back to the nursing home. I explained to the registered nurse that I had to leave and that someone would have to keep an eye on Graham. I was patronised and treated like an over-anxious mother, with one staff member commenting “There, there, we’ll look after him, it’ll be okay.” Graham was distressed and bewildered by the pain of removing his terminals and the catheter, giving one registered nurse a hard slap on the wrist.
In January 2016, Graham had blood in his urine and was again taken to the ED. This visit was very different compared to the first two. The ward was very quiet, with one registered nurse and two doctors who had already been involved with Graham’s arrival. The bladder needed draining but this time there was no barrage of sticky terminals all over him, no cannula in his arm. The doctor’s view was “What would be the reason for doing scans or blood tests? If there was anything sinister, would there be an intention to undergo invasive treatments?” The answer, of course, was no, so even though it was obvious that Graham was stressed by the hospital visit, he was spared much unnecessary trauma.
One doctor made the point that having me there was an important part of their providing the right care for Graham. The doctor also gave some good advice about checking with the nursing home whether, in future, someone could be called in to undertake a procedure at the nursing home to eliminate traumatic hospital trips. The second doctor also included me and was focused on Graham’s comfort, not on medical issues.
When staff actually “get it”, the experience for the patient and the carer is much less stressful. Graham was able to eat lunch when he got back and rested comfortably in his own bed. A call to the hospital is never a nice way to start the day, but I was not exhausted by the experience – that’s got to be good!