Jess and Clare’s's story
Clare was previously a volunteer nurse at Hospice in the Weald. She was diagnosed with Motor Neurone Disease (MND) last April. Eighteen-year-old Jess, Clare’s daughter, is now Clare’s full-time carer. Here Jess and Clare tell us about their Hospice experience.
Clare said, “Seven or so years ago when I volunteered at Hospice in the Weald, occasionally people would bring family members in with them and it would help in giving understanding and context to the patient.
“When I was diagnosed with Motor Neurone Disease (MND) in April 2017, followed by my husband with a brain tumour diagnosis in October that year, I knew the safe place we needed to be as a family, the hospice.
“Nell visited us at home and fear dispelled that we would not fit into Hospice Day Service. They were truly going to be there for all family members equally.”
Jess said, “Ever since we found out about my mum’s diagnosis of MND, the Hospice has become a central part of our lives. My mum and I attend Hospice Day Service weekly. We have joined crafts groups, the spiritual gathering and even enjoyed some reflexology together. Having this time to spend with mum is very special and essential for the special relationship we have.
“Surrounded by trained staff and nurses, I am confident in the care that my mum is given when we go to Hospice Day Service allowing us to relax and spend time together. This is also found in the retreat days that the Hospice offers in which all family members can receive many different therapies such as massage, reflexology and nail painting which again, allows us to spend time as a family in a safe and non-judgemental environment.
“I also receive a lot of help from the Hospice to cope with both my parents’ respective illnesses and my role as their carer. I have weekly counselling as well as a lot of support in the practicalities of caring for my parents. Having the underlying support of the Hospice in our situation has made a huge difference. Practical elements of my parents’ care, such as the different benefits they are entitled to as well as the emotional support we receive as a family, has meant that a significant amount of stress has been lifted off our shoulders and we can enjoy spending time as a family.”
Clare wrote her section of this piece using her eye-gaze; the effects of MND mean that she now struggles to communicate verbally.