Claire is a nurse, she is a partner, a daughter, a sister, aunty, friend and a carer for her mum.

 

Claire put her own life on hold and moved in to care for mum, Kay, at home during Covid.  Claire’s sister, Jo, travels over from Yorkshire every Tuesday to care for her mum whilst Claire works, facing a 3-hour round trip most weeks.  Jo also stays over for a weekend several times a year to give Claire some well-earned rest.  Claire and Jo have cared for their Mum since the death of their dad 11 years ago.

 

As Kay’s dementia has progressed, her care needs have increased, currently this includes a combination of domiciliary care, personal assistants and day care.  Claire moved to home working and reducing her hours to meet her mum’s day-to-day care needs. Claire’s lost earnings through caring for her mum amount to £135,000.  A reduced pension contribution will impact directly on Claire’s own retirement plans.   Twice a month Claire works from the office, which incurs more care costs for Kay.  Kay receives 42 days of respite care per year, it doesn’t cover the full cost and they pay the difference.

 

The annual value of carers’ support in the UK is £162 billion (Carers UK).

 

Along with meeting Kay’s care needs, Claire and Jo have had to become accountants, business managers and employers, sorting all of Kay’s care payments, recruiting personal assistants and trying to stretch her money as far as possible.

Claire’s story is repeated countless times up and down the country.  Carers UK are calling on our new government to commit to significant and meaningful policies to transform the lives of carers, identifying the following 6 themes:

  • Supporting carers’ health and wellbeing

  • Preventing financial hardship

  • Better identification and recognition

  • Improving care and support

  • Support to juggle work and care

  • Equality for carers

For more information – General Election 2024 | Carers UK

 

Claire juggles caring for mum, with work and a small bit of life for herself.   Kay’s cognition and quality of life are far better when she’s in her own home.  Claire wants her mum to stay at home for as long as she can, but it costs money c. £5,000 every month.  Keeping Kay at home is now more expensive than living in full time care.

 

‘I’m a nurse for God’s sake, I don’t earn that much money’

Claire knows that there is only enough in the pot to keep mum at home until the end of this year.  The family are currently navigating through the complexity of a Continued Health Care application in the hope that they can keep mum at home for longer.

The process for securing Continued Health Care is complex and unforgiving.   Families who are at breaking point physically, mentally and emotionally, face the battle of their lives to prove that their family members living with a life limiting condition are end of life enough to secure NHS funding.

‘We’re battling to keep mum at home’

 

Claire and Jo keep mum well, as a family they are paying for support to keep mum at home with minimal impact on the wider and extremely stretched health and social care system (Show Us You Care –  24,000 people and 54 organisations are calling on the Government to make sure it prioritises reform and funding for social care, following decades of political inaction – Care And Support Alliance – Campaigning for the Care We Need).

Claire is an active member of the Empowered Connectors group, set up to offer caregivers the opportunity to share their stories at a local, regional and national level to bring about positive change.  Claire’s story is not unique within this group!

Empowered Connectors was set up by Empowered Conversations, a project of Age UK Salford.  Empowered Conversations deliver research based free communication courses to family caregivers (Empowered Conversations and Moving Beyond Words) across Greater Manchester.  They deliver evidence-based dementia focused therapeutic support to family caregivers through Empowered Carers.  They run regular groups, Empowered Connectors is one of these and they run free ‘In Conversation with …’ webinars to share best practice, new research and lived experience to a mixed audience.  The team works within a preventative space, enhancing the support available to families and empowering them to live as well as they can with dementia.

The Empowered Connectors are calling on our new government to look at the national campaigns from Carers UK and #ShowUsYouCare.  The Connectors would like to extend an invitation to you to come along to one of their monthly online meetings to build your understanding of the complexity of caring for family members living with dementia.  We hope that this will help to bring about positive change to the lives of families affected by dementia in the future.