"Dire need for someone experienced in dementia"

I am writing this in the hope that it may be of assistance to both staff and patients of the future in the hospital.  My husband was recently in Wishaw Hospital for 3 weeks before he passed away.

My husband was brought to hospital with a chest infection and UTI.  His illness happened very quickly – he took unwell on the Wednesday night and was initially attended by ambulance staff, prescribed antibiotics and because of dementia it was suggested that he remain at home because of the extra confusion caused to him by being taken to hospital. By Friday morning it was obvious that his condition was deteriorating very quickly and I requested he be taken to hospital.

During the first week he began to respond to the antibiotics and improve to the point of being given food – although pureed. Unfortunately his normal medications including those for gout had been stopped and his gout flared in his knee. This resulted in intense pain and he never left the bed from then on. From then on it was a downhill slide.

My concern for my husband during his time in hospital was not the actual medical care but the lack of knowledge of how to treat someone suffering from dementia. I did enquire but was told there was not an actual dementia nurse in the hospital. I and our family stayed at the hospital 24/7 from the time of the deterioration of his condition. What we had to continuously explain to staff was that you had to calmly explain to my husband what was happening before beginning to wrap a blood pressure cuff around his arm, before repositioning him on the bed or trying to refresh him with a bedbath etc. Staff would ask us to leave the room while they were doing so and he would panic and be shouting for help as he had no idea what these strange people were doing. By the time they refreshed him and repositioned him he was exhausted from the panic it caused him. This could not have helped his physical condition.

We, the family, still feel so sad that we could not save him the distress he suffered. We did not feel confident enough to leave him alone in his single room on the ward. It was fortunate that he had the actual room but with dementia he could not speak for himself so we had to speak for him.

We also found it was not easy to get updates of his condition although we were there all day every day in ward 7. We had to keep requesting information from the head nurse of the shift and from the doctors (there were 3 during his time in the ward). Although the staff were very nice and things were explained when we could speak to them.

Obviously it was a very traumatic time for the family and being there day and night taking time to catch a few hours sleep and living on sandwiches did not help our mental state and then at the end to have to sit by his bed until he breathed his last.

We did feel there was very little interest or empathy and mostly were left to ourselves in his room – only interrupted for medical reasons when necessary.

I hope this explains the dire need for someone trained and experienced in dementia. It is a condition that is so much more than just losing your memory and unless you have lived or worked with it, you cannot really understand. There are skills though that can be taught that would make it so much more gentle for both the staff and the patient.

I have been told that there are associations that do deal with this - eg Johns Scheme, The Butterfly Scheme and Triangle of Care. The Butterfly Scheme could be a good start? I so hope that this may be of some assistance and save someone else having to see their loved one leave this world in such a distressing way.

Thank you.