Anthea talks about her experience of being a carer and the support she has received from Sutton Council’s Admiral Nurse Team.

Sutton Council is one of three London Boroughs with an Admiral Nurse Service. The service works alongside people with dementia and their families, giving them one-to-one support, guidance and practical solutions.

Anthea and her husband have been receiving support from Sutton Council’s Admiral Nurse team. Sutton Council interviewed Anthea about her experience of being a carer to her husband who has dementia and asked her about the help and support they have both received over the years.

Have you heard of the Admiral Nursing before?

A few years ago, I watched a TV programme about dementia - an Admiral Nurse was talking about how Admiral Nurses have supported families of people living with dementia and there were only about 150 Admiral Nurses in the country. As an ex-practice nurse of many years, I could see the need for this kind of service. I was not aware that there were Admiral Nurses in Sutton.

How did you come into contact with the Admiral Nurse Service? Was there a particular event or challenge that led to Admiral Nurse involvement?

My husband started developing memory problems and was diagnosed with dementia by Sutton Memory Assessment Services. He started misidentifying me, became very restless and was struggling to self-manage his diabetes.

During one of the appointments the consultant psychiatrist could see that I was struggling in the caring role and made a referral to the Admiral Nurse service straight away. I got a call from the Admiral Nurse two days later and was seen on the same day.

How did your Admiral Nurse support you in your caring role?

The Admiral Nurse gained my trust straight away and developed a good rapport with my husband too. I felt that was important.The Admiral Nurse told me that the service will be there for me on the journey - at difficult times I could telephone or text my Admiral Nurse and knew there was someone there for me.

The Admiral Nurse was clearly very knowledgeable not just about dementia but about local and national services - Age UK/Sutton Carers Centre/Alzheimer's Society.

In particular the message in a bottle and the phone tracker helped reduce my worries especially with regards to his diabetes and his whereabouts. I found the 1:1 session very helpful as it enabled me to talk about issues I could not talk about with my family or friends. I also found discussing a plan and regularly reviewing the plan with the Admiral Nurse very helpful.

What was the most helpful thing your Admiral Nurse did?

As a nurse I have always believed and felt I could and should manage. However, during a 'meltdown' at the shopping centre, the Admiral Nurse made me realise that help and support was needed in order to maintain the relationship with my husband. The Admiral Nurse put me in contact with local care providers and local clubs like the singing sensations and the day centre.

I also felt some embarrassment about my husband's behaviour. The Admiral Nurse accompanied us to the clubs to make it easier for both of us. He really enjoyed attending - he was a 'star' there. This not only made me feel better, but it also helped me catch up on my sleep and some ‘me time.’

The Admiral Nurse also provided me with education around dementia and coping strategies including how to de-escalate difficult situations.

Admiral Nurses aim to support family carers to navigate health and social care systems and access other services. Was this something your Admiral Nurse did for you? If so, what was the benefit of this?

My Admiral Nurse made me aware of how the NHS/social services and the private sector work and helped me to also understand a range of assessments - financial, social care, health, legal and the help that was available like benefits, blue badge.

The Admiral Nurse looked at ways of improving communication with professionals - attending clinic appointments with us when needed and writing letters to consultants and our GP.

When I finally could not carry on in the caring role because the risks were too high, the Admiral Nurses knowledge of suitable care homes was invaluable.I was also informed about the procedures for applying for continuing health care from the NHS - his care is now being funded by the NHS although I am aware this is subject to reviews. This has greatly benefitted us financially.

How did the Admiral Nurse encourage your health and wellbeing, as well as that of those of your loved one?

The Admiral Nurse made a thorough assessment of our physical and mental health needs, including medications being taken and professionals involved. I was encouraged to see my GP as I had been neglecting my own health and to also have ‘me time’ when my husband was at the day centre. I became aware of the various help offered by voluntary organisations and the NHS like Talking Therapies. 

Do you have any top tips for other carers?

• Don't be afraid to ask - there is lots of support in the borough and most organisations are more than ready to help.
• Plan ahead - think about Lasting Power of Attorney while your loved one still has the mental capacity to decide, message in a bottle / have contact details ready 
• Prioritise - getting the kitchen refitted created an enormous amount of stress for my husband and myself. It was not a top priority. Try to keep a routine and look after yourself.

Do you have any tips for professionals who support people with dementia and their loved ones?

I was very fortunate to have had very good support from professionals involved in my husband's care. They listened to me, gave me time, showed empathy and they communicated the plan to me both verbally and in writing. They all showed my husband a lot of respect and tried to engage him in discussions and planning ahead.

 

If you are a carer to someone with dementia and need support, take the first step and speak with an Admiral Nurse by visiting dementiauk.org/get-support/ to find your nearest Admiral Nurse Service.