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Supporting the Sandwich Generation

06 October 2014

Suzy Webster, 
Expert by Experience, Care Quality Commission

As research published today shows just how stressful looking after older parents can be, Suzy shares her experience of 'sandwich caring' - combining care for her two children with care for her mother, who lives with dementia.

My family and I live together in Chepstow, South Wales. I am part of the sandwich generation where I have care responsibilities for my children and my parents who are in their late sixties.

My Mum is 67 years old and lives with dementia. It was a joint decision for us all to live together. In their own home things were beginning to break down, the pressure of caring for someone 24 hours a day was affecting Dad's health and the lack of post-diagnosis support was evident from the start. We knew the only way to care well for Mum was with a team approach and Mum as centre forward!

We were lucky to find a house that suited us, a house divided directly in two ensuring togetherness and privacy, social times and quiet times. We knock on the adjoining door before entering Mum's lounge because she has no memory of our part of the house so to just walk into hers would frighten her. As a family we are learning together.

I find myself encouraging my children and my Mum to eat their greens.
We have learnt that Mum's tastes have changed; she loves sweet food now, she would never have a pudding before. The other day she had a chocolate mousse as a starter, not always easy to explain to children but we all had a giggle!

I learn the most about caring for Mum through my children who are 9 and 5 years old. They live in the moment with Mum, when my head is filled with worry and stress about what our future may hold I watch them gently BE with her, full of acceptance for the person she is. They help me appreciate the now. My 9 year-old recently said "It doesn't matter that Grandma has dementia, she is still the same person."

We know how my Mum like to feel of worth, thanking her for reading with my children or sitting outside of their school in the car on a school run. We know that she is and will always remain a valued person in our family and my children are learning hands on what it means to care for someone. They would get GCSE A star in this subject already, what a shame as a society we continue to judge children's academic ability over compassion and empathy for others.

Being part of the sandwich generation means I have to think about the impact of my children seeing care workers coming in and out of our home. I have to think of the effect my child having a sleepover party will have on my Mum. I have to juggle work, medical appointments, after school clubs, time with my husband and time for me! I live with many varying emotions: sometimes I look at my children and have a glimpse of how they are suddenly looking older, more grown up. Sometimes I look at Mum and see her gently moving further away in her dementia. Living with loss has an impact on us all.

The support services that we have been offered are limited. We need to be supported by health and social care professionals who take all our needs into consideration. We have been offered respite care; this means Mum going into a local care home for older people, she is 67 years old. 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. We fund our own holidays at The Mede in Topsham where we enjoy time together supported by the owner who understands the challenges of dementia care.

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 a lonely journey. Services need to be more flexible and family centred to ensure the sandwich generation the support they need.


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