Reflections of a long time carer

I have been a carer for nearly 20 years, with firstly my mother, and then my husband developing Alzheimer’s and becoming dependent on me for their support.

My husband is now in the advanced stages of this cruel disease and I am drawing on all my experience as a former nurse in the NHS to fill in the gaps in his care.

Many people are in the same situation as me, but do not recognise themselves as carers, but when an individual becomes increasingly dependent in relation to their physical or mental health needs, there is a gradual realisation that the caring responsibilities are taking over more and more of their lives and the relationship changes.

This is perhaps when they first see themselves as carers and it can be daunting.

You are worrying about them, how best to support them and how you are going to cope.

It is a new world for most of us and vital that the carer and the cared for are supported at that stage and that there are easy pathways to relevant information.

One of my roles in life is to volunteer for the local Alzheimer’s Society and I chair an Experts by Experience peer support group at our local Caring Café.

The carers that attend our support group share their experiences of what information, help and support that they have received have been most beneficial. Also, what has been lacking or has not worked for them.

As a member of the C4CC Co-production Team, it has become clear to me that applying the principles of ‘Three Cs’ of the coalition; Better conversations – Stronger communities – Partners in co-production; provides people with long term conditions and their carers with that vital support in testing times.

Here are my thoughts, based on experiences over these many years.

Conversations

One of the recurring stories that arises is that when a carer and cared for person initially attend their GP surgery with short term memory problems, there may be a real need for signposting to appropriate support even before a firm diagnosis is made.

The experiences of carers are variable and some carers feel really let down at this initial stage, not knowing where to turn next.

Where a GP is able to signpost sensitively and is much more proactive and helpful the support is really beneficial.

But, information alone is not necessarily enough. I well remember a new member of our carers support group coming into a meeting with a large bag of leaflets and booklets. She sat down and said ‘Can anyone help me sort all this out?

The local authority had provided her with copious information appropriate for a carer looking after someone with dementia, but no other support in sorting and selecting the information to support her particular requirements.

This is where our group and others like it can add value through our conversations.

Growing strong communities

It has been said by a member of our carers’ group more than once that the experience has been ‘life changing’.

Quite often, carers come with trepidation into our group. They feel so vulnerable and at sea and don’t know what to expect.

The sharing of experiences; the informal advice and the emotional support which is sustainable over the long term, is invaluable and we all benefit.

Within the café there are also professionals to enlarge the conversations.

The Caring Café is supported by our local authority because of the excellent level of services it provides in a community setting.

Under the Care Act 2014, local authorities must offer or commission services that aim to prevent or delay the need for support and to promote wellbeing both for people needing support and their carers, and I know we are able to do this in the Caring Café as do similar groups all over the country.

Co-production

One of my best experiences of the right conversations and co-production at the right time was when I requested a home assessment for my husband, who was becoming increasingly frail at the time and in danger of repeat falls.

The GP referred us to the local CCG Response and Rehabilitation Team.

The professional team that assessed my husband over several weeks treated us as equal partners during the process, were willing to experiment with equipment and handling issues and set in course a mutually agreed programme of self-funded support.

This was co-production at the right time.

Now, my husband is receiving continuing care, co-production has been limited to the relationship developed between the individual carer support worker and myself, the package of care being put in place through a provider agency.

The standard of care delivered is very much dependent on my personal monitoring of the carer support workers.

With my health service background I can fill the gaps in care, but others are not so lucky, which is why C4CC has a vital role to play in its promotion of the co-designing and co-delivery of services and rigorous monitoring of commissioned services for people with long-term conditions, particularly where they lack capacity.

 

Margaret Dangoor, C4CC Co-production Team member

Twitter: @mpdrichmond

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