A Sutton St James family tell how they were helped to keep 50-year-old Josephine Adams, who has MS, cared for at home
When a loved one's circumstances change and you suddenly find yourself needing to arrange extra care and support for that person, it is sometimes difficult to know where to turn.
This is what happened in the case of a wonderful lady called Josephine Adams, who lives in Sutton St James.
Now, her family wants to tell their story to give hope to others who may find themselves in a similar situation.
Up until 18 years ago, Jo led an active, normal life - until she was diagnosed with progressive multiple sclerosis (MS), a disease of the central nervous system.
Today, aged 50, she cannot move her body from the neck down, and although her speech is slurred and she can only manage a few words, she loves to smile and laugh.
And her sense of humour is infectious. Despite her disability, her eyes sparkle, she can engage with those around her and, as her daughter-in-law, Lucy, says: "She loves life".
“She loves being at home, we watch Only Fools and Horses every day and she loves listening to music in the mornings,” Lucy explains.
“She tells me that she loves to be alive. At Christmas, even though she can’t eat the traditional dinner, she will still join in and I will lift her hand to pull a cracker, and although she can’t get up and dance she is just a happy person.”
Jo’s father, Derek, looked after her care until he passed away earlier this year, aged 82.
Since then, Lucy and her husband Rhys (Jo’s son) have been working to keep Jo in her own home and negotiate the complex care system.
Hairdresser Lucy (25), who runs The Little Village Salon in Moulton, said: “I came into this completely blind.”
Herself and Rhys (also 25), who works as a plumber, moved into Jo’s home to provide extra support and also to assist Jo’s mum Maureen (82). During the coronavirus pandemic they have all been in lockdown together.
With Derek classed as Jo’s main carer (he had additional carers as well), he also managed the finances with help coming in from the NHS’ Continuing Healthcare Fund to keep Jo at home. This is funding for adults with a range of complex needs. However, not everybody is eligible and may instead be offered the option of going into a care home with contributions from NHS-funded care. There are also limits on the types of financial support for people if they have savings worth over a certain amount, for example.
Lucy said: “Derek was all about his daughter. He did not want her going into care and he always said 'look after my girl.'”
In the family’s case, they turned to an organisation called Age Care Advice, and Lucy has been assisted by Toni Barwell, South Holland lead care coordinator.
“She has helped us because we were really struggling with the grief of Derek and everything else. She has sorted everything out for us. We have had a lot of money owed to us and have had to spend a lot of our family’s money to pay the carers. Toni has been fighting for us to get the money together,” she said.
Age Care Advice achieved a Lincolnshire Carers Quality Award this year for its work. It was founded in 2011 by Simon Jessop, a senior social worker with experience within local authority social care and NHS teams in both the UK and the USA.
They provide both a care coordinator service to help families and individuals both deal with and understand different aspects of the care system and also offer a caring companion service. They are available seven days a week from 8am until 8pm.
Jo’s family wish that by sharing their story they will give hope to other people, show that life can still be good and that there is support out there.
You can find out more about Age Care Advice by visiting its website at: www.agecareadvice.co.uk and Toni can be contacted on 07917 445915.
The organisation also has a Facebook page and a new private Facebook group for carers called Age Care Advice - The Care Hub
- The Age Care Advice team had to adapt quickly when the coronavirus pandemic began.
The organisation's founder, Simon Jessop, said: "We reduced numbers of Companions going into peoples homes. So all Companions took drops in pay due to making sure they might help and see two to three people, instead of say visiting ten.
"To date all customers and Companions are well. Our model is a seven day a week, 12 hours a day arrangement, so this helps massively with consistent communication with the wellbeing of a person. So a problem on a Monday morning or Saturday night is dealt with immediately.
"The quick response helps avoid hospital admissions, for instance, and in the current climate possibly save lives. Families feel reassured we are overseeing a parent, say, and have peace of mind. We also look after the clients of solicitors and attorneys.
"The NHS, local authorities or the person themselves pay for our services. Our growth of 925% over three years is because people like what we do. That kind of growth does not happen with an average service. Our overall goal is very simple and it is that we work tirelessly to promote a person's safety and happiness.
"With PPE we struggled initially. A building merchant's donated masks and apart from this we all raided our own cupboards looking for gloves and aprons in the beginning. We did find suppliers eventually and have been purchasing equipment since."
