Support for carers

A lot of my time spent with my sister, Lucy, doesn’t usually feel like I’m being a carer. Lucy is 27 and has Down’s Syndrome. During normal times, she and I go out everywhere together; whether it’s to the shops or off to watch a local football match, even out for dinner with our friends or a trip to the casino for cocktails and a flutter.

However, since the Government lockdown, coupled with Lucy having to stay home for 12 weeks (and likely longer) to shield and protect herself from catching Coronavirus, the responsibility of care has been more apparent.

Since Coronavirus became more of the new normal, Lucy has lost everything that gave her independence, routine and stability. She has been unable to attend her daily resource centre at East Kent Mencap since mid-March. This is where she spends time with her friends, doing activities, learning new skills and generally living her best, independent life.

Losing this daily routine has impacted Lucy, especially as the only alternative she now has is staying at home all day. It is even more difficult as she doesn’t understand much about what is going on, except that there is something happening that is making lots of people really ill and that she can’t get it. Her behaviour is a struggle sometimes, when all she wants to do is go out, along with her mental health, like anyone else she has good days and bad days.

As a family, we have worked hard to create a new routine for Lucy. We have spent time, while staying at home, to find new activities to do together. Lucy has learnt how to bake bread from scratch, she has started growing vegetables in her gardening patch at the end of the garden and we have completed more puzzles than I care to count… she has even learnt how to pick up a hoover and give the front room a blitz. She also still gets her time with the TV watching her favourite old re-runs of The Bill and Super Nanny (no, I don’t know why either – but she loves it!). We are also regularly video calling with her friends and link workers from East Kent Mencap; this always puts a huge smile on her face for the day.

Being a carer has become much more difficult during Coronavirus. Creating a new routine for Lucy, balanced with understanding and appreciating everything she is missing at the moment and trying, where possible, to make up for that to help keep her happy and busy has helped. But, the future is still unknown as to when things will return to normal and what that may look like, which continues to challenge our family unit.

When you speak to Julia Cordrey about her experience of being an unpaid carer you can sense she is a strong and capable person but, by her own admission, that hasn’t always been the case.

Unpaid carers are often resilient people and can be reluctant to accept or ask for help but health and social care co-ordinators at Kent Community Health NHS Foundation Trust (KCHFT) know exactly how to support them to access the services they are entitled to.

Julia, 74, from Maidstone, became a carer for her husband Brian in 2016, when he was diagnosed with vascular dementia. At first life went on normally for them until Brian was admitted to hospital in 2017 for four weeks with pneumonia.

When he returned home his dementia symptoms had worsened and he was restless, not sleeping, trying to leave the house at all times and becoming frustrated which could cause him to lash out. Brian and Julia’s daughters supported them as much as they could but Julia was coping on very little sleep; keeping Brian safe and calm by driving him around through the night. It was at that time Julia received a phone call from Donna Clarke, a KCHFT health and social care co-ordinator, who offered to refer Julia and Brian to services they were entitled to.

Julia said: “Donna called me two or three times offering to help us but I kept cancelling her and making excuses. I told her if we needed help I would ask for it.

“But Donna persevered and one day she said something in such a way that really made me think I might need some help. I am strong and I thought I could cope with anything. I know now I can’t and once I accepted I needed support I went for it in a big way.

“I called Donna back and said I would agree to any help she could get me. She referred me to Crossroads Care Kent for crisis care and respite, Heart Of Kent Hospice dementia support groups and social services for a care package for Brian. She also encouraged me to contact INVOLVE for a free carers’ assessment.

“The crisis care allowed me to sleep at night and having someone sit with Brian in the day meant I could attend courses and groups to help me learn about dementia. Brian joined me at some groups and while he enjoyed activities run by the patient and experienced volunteers, I got to laugh and cry with people in similar situations to me. I made some great friendships and we were encouraged to support each other outside of the groups.

Katy Abson, the Senior Team Lead for Community Navigation and Carers at INVOLVE carried out a carers’ assessment and together we put a plan in place to help me care and cope. She also arranged for me to carry a Kent carers’ emergency card.

All this help came at just the right time for us. It is so important carers know what help is out there and health and social care co-ordinators and social prescribers are excellent at navigating us through.”

Donna said “Unpaid carers are often strong, independent people, just like Julia. Sometimes it can take time to gain their trust and gently encourage them accept the help they are entitled to. I work closely with organisations like INVOLVE and Crossroads Care Kent to improve the quality of life of carers and the person they care for.

It’s an amazing feeling to work as a team with GPs, nurses and voluntary and community organisations to make a difference to people like Julia and Brian.”