Carers Week: Suzy’s story (part 2)

This week is Carers Week – a time to celebrate the contribution of the 6.5 million unpaid carers in the UK. It is also the moment when several charities, including Age UK, come together to call for better support for carers.

Suzy shares her story of being a carer. In part 1, Suzy explained what it’s like to care for her mother with dementia. Today, she explains about the challenges of getting the support she needs.

The difficulties we face in caring for Mum come when we seek help from outside our home when the services that are offered seem to be one size fits all.

We have been offered respite care. This means Mum going into a local care home. This would mean Mum being away from us in a building she doesn’t know with people she doesn’t know.

Mum would not settle in this environment, I know that. We would also run the risk that Mum would not remember her own home on return from respite care.

If the aim of this is to ‘give us a break from the caring role’, I would like to suggest that this would not be the best way.

If there was a facility for our family to enjoy a break together that would be fantastic – a place where we could enjoy time together and time apart fully supported by staff who take all our needs into consideration.

Providing a ‘sitting’ service alone will not provide meaningful support for a person with dementia. When Mum’s ‘sitter’ (support worker) came for the first time she sat on the sofa and looked at Mum, for four hours.

Importance of training

Support staff need to be trained to enable them to thrive. If the support worker had skills in dementia communication, life story work and reminiscence, they would have the opportunity to enjoy being with Mum and to enjoy their job.

We had no option but to put Mum and the ‘sitter’ out of their misery and ask to end this support. Because of this, we now run the risk of being labelled as ‘service refusers’ because we don’t fit the services offered.

It is a frustration for us that if Mum had another illness we would probably receive support from a specialist nurse, receive age appropriate information to help my children understand their Grandma’s condition and have access to palliative care services.

Caring for a loved one with dementia is lonely. We need someone to walk alongside us for the duration of the journey; that would be my ideal. Perhaps if services were more flexible and family centred this could be achievable.

Find out more about carers and Carers Week at www.carersweek.org.

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