Dr Carolyn French expresses her positive and negative experiences with different nurses while caring for her ill partner
Previously a fit and active man, my partner, David, became ill with cerebral vascular dementia. For six months he covered his memory loss.
I needed to know how to manage this agitation and keep my partner clean
That year was agonising and misinterpretations abounded – was he depressed because he no longer loved me?
It took a year for him to be diagnosed as every test came back clear. In the end we went to a private neurologist and paid for an MRI scan and he was finally diagnosed with dementia.
This was a strange kind of relief. Now I knew, although he didn’t, what was in front of me. I gave up full time work and gradually took over tasks he couldn’t do. Within the year he could hardly speak, could not be left alone, was dizzy, and spent most of his time lying flat. Somehow I managed to take him to Canada for his son’s wedding. That was my goal that year. Somehow he managed to cover his symptoms.
I continued to manage on my own. I took him to Africa because he had lived there for so long and his son came with me. He loved the holiday despite the strange and even hostile stares from other tourists. I took him to Greece that summer - to rest and to say goodbye. I took him to restaurants, to the pub and tried to make his life as normal as possible. I played music to him, read him poetry and stayed by his side that year.
But then there was a major crisis. My partner became incontinent and very agitated. I had no knowledge about incontinence. The house was in a terrible mess and the washing machine was going all the time. In desperation I phoned the Alzheimer’s society.
After several days the incontinence nurse arrived. She told me my partner needed pads and gave me a catalogue saying I could order them. I had no idea how to put them on my partner when he was so agitated - I nearly broke down. I needed immediate help. The nurse left me in a state of desperation so I then drove David the 40 miles to the carer. She gave me enough pads to last for a day or two.
The situation deteriorated. My partner had begun to hallucinate and would struggle violently if I tried to change his pad. I turned to Age Concern, but the carer soon left and the agency said that they didn’t have another carer to come out to our village.
At night, in desperation, I called our hospital and spoke to the nurses. I kept repeating that I needed help, but their main focus was to keep us away from the hospital. By now I was being punched every evening. I needed to know how to manage this agitation and keep my partner clean.
Help was not offered. Finally, I called the mental health social worker. I was told I could not speak to her. So I called the police. Two young officers were confronted by my 6ft tall partner, covered in faeces. They helped me wash him and were about to leave. So I left the house myself.
The police called the social worker and several hours later my partner was sectioned into a dementia unit. We spent four days there. I watched the other patients crying, swearing and desperately trying to get out. My partner soon began to behave in the same way. On weekends there were fewer staff members around and they spent most of their time reading magazines.
During the next ward round I met the team. I observed how the male nurse held my partner’s hands, while another quickly changed him. I thanked them for showing me how to manage the aggression and fear and I discharged him home. He spoke for the first time in months and raised his hands to the sky and said ‘life is beautiful’ as we fled through the doors to freedom.
Now, my partner was under the CPA system. His team consisted of a CPN, a Macmillan’s nurse, a psychiatrist and a care manager. These nurses were completely person centred, always available to advise me. They basically saved my sanity and my partner going into a home. They treated him with the utmost dignity. He recognised them and would shake their hands when they came over.
One morning my partner was choking. I called the ambulance and followed behind. When I arrived in A&E I saw him stuck on a trolley with his legs dangling, uncovered. The young doctor remarked to two nurses, ‘you wouldn’t let a dog suffer like this….’ I watched in horror as the young nurses tipped David off the trolley onto his ward bed, talking over him. His frail body shuddered. I made myself known in that ward. I tried to tell the nurses that there would be problems washing David, but they ignored me. The next morning they expressed surprise when he tried to hit them.
The doctors didn’t visit David for three days. He became agitated and upset. I called my male carer and we went into the ward and told the nurses David was going home. My carer lifted him out of bed. This caused a commotion. Apologetic doctors and nurses appeared out of nowhere. But we took him home - to his utter relief.
The final nurses were at A&E when David was dying. A friend had tried physiotherapy on him at home for six hours. The out of hours GPs never arrived. It was the last thing I wanted but he had to be bumped into an ambulance to go to A&E. There I found him lying alone, his eyes protruding, choking. The nurses ignored me and ignored him. He was terrified. I was heartbroken to see him so fearful in an atmosphere of indifference. I wept.
The ward was chaotic and noisy. A doctor put his head around the curtain and simply said “he is dying” and left. I asked for him to be treated in the hospice.
The nurse was a palliative care nurse. He was gentle and empathetic. He supported David’s sons and me in those terrible final days. He sat with David through the night as he died, holding his hand and playing soft music as the birds sang at dawn. This nurse knew how to comfort people and how to treat his patients with dignity.
The standards of care among nurses differ widely and are inconsistent. Those who have been trained in basic counselling are outstanding. But some nurses in general hospitals and within the community appear to have no understanding or empathy for people with dementia and their carers. The shortage of resources or office management problems are no excuse. A person with dementia is still a person and deserves to be treated as such. This does not cost time. All nurses should be taught these skills. It is a training issue.