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The continence nurse, the ward nurse and the district nurse: a carer’s view

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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.

  • 10 Comments

Readers' comments (10)

  • I can only echo this as being the same level of care my mother with dementia received in hospital and from the nursing staff in the community. If it wasn't for the Eastern European care assistants who have no training thanks to the privatisation of care but have hugh capacity for commonsense, my family and I who care for my mother at home would not be able to. This is a terrible indictment of the NHS.

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  • Thank you for telling this terrible story, as you say there is a wide variety of nursing and nurses. I am a nurse and have been a carer too for many years. I know the system and its difficult to access the care that you need even for me.
    I can only apologise to you on behalf of our profession for the lack of TLC given to your husband and I am so pleased that you did at least meet some good nurses in your travels. Your story touched my heart and I wish you well for the future

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  • Thank you. Your story will provide many of us nurses with an insight. I started my career as a nursing auxillary in a Hospice which I feel taught me how to care properly and to make an effort to make a person comfortable with dignity and respect. I really feel our nurse training has to encompass a wider area, to gain more experience. I hope you can rest knowing that you did everything within your power to help, love and care for your partner.

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  • Like a previous poster I would too like to apologise for the treatment you, your partner and family received at the hands of some of the nurses you encountered. Unfortunately I have witnessed this kind of treatment as both a nurse and a patient. If nurses cannot care for the most vulnerable in our society with compassion and respect then we are all at risk for this should be the reason they trained and practice as nurses to start with. Goodness knows its not easy and certainly not the most financially rewarding of jobs, which is why we must leave work at the end of the day knowing we've made of positive impact on those whose lives we have had the fortune to touch.
    When did such nurses stop being able to put themselves in someone else's shoes? Or maybe they were never able to... I have to say that I'm not sure true compassion can be taught.
    Thank you for the honesty of your article and I hope it reaches those who need its message most.

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  • It seems to me that what made the difference wasn't rocket science. Come on nurses, and I am one, this is a terrible terrible true life experience for just one person. Let's hope it's not repeated ever again - please accept my apology on behalf of all good compassionate nurses.

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  • As a Continence Nurse Specialist I am appalled at how you and your husband were treated in the first instance; unfortunately too many PCTs are employing cheaper nurses at band 5s as "continence nurses". Incontinence is not seen as high priority yet the consequences are far reaching especially for patients and their carers. From talking to patients referred to me by the wards who have already been assessed by such nurses, it is evident that the nursex do not possess adequate skills and knowledge to give the correct advice or treatment. Things unfortrunately will only get worse.
    As a human being I am saddened at your husband's treatment.

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  • You are right; any nurse worth their salt should know which pad is most suitable and how to apply, but there is more to a continence assessment than "assessing for pads". Unfortunately that is what alot of nurses and managers think a continence assessment is. Many people despite their condition or illness can have improvements in their incontinence made with a thorough assessment. pads aren't always the answer.

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  • I have been nursing for 30 years and now teach extended clinical skills to paramedics, nurse and pharmacists. It is horrible to hear of your expereince but the levels of compassion, skills and caring vary so widely-as I say to my students everyday there are so many variables in the care you can provide but you must never lose sight of the compassion and need to care for others that first made you go into your chosen career. The care your husband had was unacceptable for the most part and I feel sad for you-make sure that you do all in your power to stop it happening to others-that is the best way forward in my view.

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  • Carolyn - I've been reading the Nursing Times since 1980 when I entered Nursing - this is the only article I've read in all that time that made me cry.
    David deserved better - we all do.

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  • I am so sorry you had this experience, it was dreadful...

    I can confirm from personal experience it isn't only people with dementia that are not treated with respect or dignity.
    My father had a stroke and landed in hospital after living in a care home, he required all care and been there for four years.
    My father was admitted into hospital with a fractured arm and extensive bruising to his chest and abdomen, which only a staff member could do as the hoist sling match the marking of the injuries.
    Whilst my father was in hospital he was moved to four different wards, he asked me if he had done something bad as no ward wanted him. The final ward, they put him in a side ward, no interaction with others and no tv, he felt he was being punish. I found him with his arm stuck in the bed rail one afternoon it was quite apparent it had been like that for sometime. My father could not reposition himself but had his faculties. He was moved into the main ward where they left his pain relief on the locker, they tried to feed him them but my father could take the tablets but they tried to shove them in his mouth all at once, my father would not allow them to given them to him, he could feed himself but they did not bother to find out what he could or could not do. Several times I went to see him he was in a hospital gown with all his private parts showing, no blanket for dignity and lopsided in his wheelchair, one slipper off the other to the side of him. He look like a vagrant, unkept and in pain, I could not find any staff to talk to. I had a meeting with his lead nurse whom stated she would write on the board above his bed to encourage independence in medication, food and fluid. I asked what was the point of that as its wrote on the board already, you already ignore it. Everything is left on the side where my father cannot reach it. The hospital was neglecting him, I had a choice of keeping him where he was and waiting for a care home to become available or send him back to the home he was in. My father would not tell me how he came to get such appalling injuries, I asked him what he wanted, all he wanted was to live with me which was not possible at the time. I reported to safe guarding but all they did was allow the home to make their own investigations which concluded, they did not know how it happened. My father returned to the home malnourished. tired but happy to be back, at that point I felt I made the right decision.
    The next morning I had a phone call to say my father had pneumonia and would not last the day. I rushed to the home and sat with him along with my family. I kept asking questions as my father was not displaying the normal signs of pneumonia, his heavy breathing subsided after 36 hours, he was subdued and quite. I was told he was nil by mouth, so I only gave him mouth care. My father could not talk as his voice was horse, four days later my father was still with us, one of the nurse said I was to ask for some rectal pain relief, which I did but was informed I was too close and that I would not accept my father was dying. This made me question myself was I being too pushy? My father died 9 days later, within this time I had found out the nurse on duty the night my father returned to the home had given him an influenza vaccine. He was malnourished and never had a vaccine before, he was scared of needles. When the 2nd GP wanted to verify the death I stated my concerns, she informed me that she could not sign the death certificate. I telephoned the coroners office to be told they were too busy to investigate my father's death, no-one would listen. I blame myself for my fathers untimely death four years ago, however, I am now able to turn that experience into a positive to ensure my patients are treated with carer and dignity. If they don't have a voice, I am their voice to enable them to have a better outcome than my father did.
    I am frightened for future nurses will we get treated that way, my cousin, as nurse herself was In hospital was slapped by a nurse who was looking after her, she died within a few days after the incident, which was earlier this year from neglect at the age of 54, heart attack that could have been prevented but instead they could not say when she died.

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