So many hospital visits
Janice’s 87 year old husband, Fred, was diagnosed with Alzheimer’s disease over five years ago. In addition to heart problems, which leave him feeling lethargic, Fred’s below average hearing makes communication challenging. Janice shares their experiences in hospital and strategies that could make a positive difference.
Fred has been to the emergency department and admitted to hospital quite often over the years. He was recently admitted to hospital overnight with intestinal pain and frequent vomiting.
Emergency waits are always a challenge. Because of Fred’s heart condition, emergency staff took blood tests at every visit. The results took an average of four hours to be processed. Then staff would administer another blood test to see whether he had had a heart attack or not. Waiting for two and a half hours before somebody with authority orders blood tests makes for a very long evening. Fred was very compliant and patient, sleeping on and off but then waking and becoming very confused about what was happening.
Collecting medical history also proved to be an issue. I know that it’s important for people with dementia to be treated as individuals and to be included, but staff also need to realise they may not get the right answers from a patient like Fred, which can lead to a distressing experience. On one trip I drove my own car so I could get home again and I’ll always remember the relief on Fred’s face as I walked in. “Here’s my wife, ask her,” he said. Fred was obviously distressed and confused, but staff were following procedure. When staff have some knowledge about dementia and how to communicate and think through the consequences of activities such as ordering tests makes a difference.
The lack of flexibility in regards to procedures could be frustrating. Fred had been vomiting and had diarrhoea every few minutes while in the emergency department. Staff would need to sponge him down and change him again every 15 minutes. After 34 hours in emergency and once Fred was admitted I asked his nurse, “Please, could he have a shower?” the nurse just looked at me and said, “Oh I don’t do showers now.” Showers only happened in the morning so I showered Fred myself. I appreciated that the nurse gave me a plastic apron and a pair of plastic boots, but felt that it could have been handled in a better way.
I felt I needed to be there at the hospital when Fred was there – to help with his meals, and to make sure he had something to drink. If the tray was put on the trolley beside his bed and nobody said anything to him or sat him up, the meal could just sit there. If you don’t put a drink in front of Fred’s nose he won’t drink. I also helped him walk to the toilet, showered him when they were really busy (I didn’t mind doing that except when I asked a nurse to help).
Strategies that could make a difference
- I would have to explain to every new nurse and doctor that came in the room about Fred’s dementia and his deafness. One strategy that was discussed at a workshop I attended was having something, like a butterfly or other symbol applied to a patient’s chart, that lets all the staff know that a patient has cognitive impairment. Specific training about treating patients with cognitive impairment would also be useful. Some nurses are brilliant. They think outside the box and work out how to get their message across to a patient with cognitive impairment.
- It would be great to be able to just lie down somewhere and have a snooze, because you get very tired at the hospital. I think a lot more could be done to improve the often stressful experience for carers and loved ones. At one hospital I was given food vouchers so that I could get one of the staff meals at a much reduced price. This was really appreciated.
- A final strategy that could improve the hospital experience for those with cognitive impairment would be ensuring a patient’s discharge report is sent to all relevant treating doctors and specialists and not just to the GP. Otherwise it falls back on the carer to keep everyone informed.
We were lucky to have a kind and understanding specialist who did not rush to do something intrusive, like a test, just because there were certain indications. This was very appreciated and made things less stressful. The specialist was also very proactive about Fred’s health directive. He thought it was important to talk about it, but it was always in a kind and professional manner.
The last time we went to hospital I found there was a much more understanding attitude among the staff. I just felt that they must have had some extra training in dealing with cognitive impairment, with deafness and with treating older people because it was quite different. They all responded to the fact that Fred couldn’t hear that well. Staff would go up close to him, touch him on the shoulder and talk to him ‘eye to eye.’ It was near the end of their shift and yet, they were still really bright, friendly, caring and interacting with Fred in a positive manner.
Tips for others
I am now much more confident in my contact with health professionals when discussing Fred’s care. I proactively interrupt staff to let them know that my husband has dementia and cannot hear very well and he is happy for me to answer their questions. I encourage others to feel that can be as confident and straightforward as I am now.