A carer says it took a major incident, when her husband with Parkinson’s-related dementia fell from the top of the stairs, to finally get the support she needed.
Barbara Deering, from Buckinghamshire, cared for her husband Barney despite having chemotherapy for her Lymphoma.
Her husband was diagnosed with Parkinson's in his late 50s.
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She says she finally got a referral for help when her husband fell from the top of the stairs and she had to call an ambulance.
Parskinson's-related dementia typically slows down a person’s speed of thinking and creates problems with hallucinations, understanding, planning, judgement, language and memory.
They live with both movement and cognitive symptoms, unlike most other types of dementia.
Barbara, 76, said: “After about ten years, his mental health deteriorated and he became physically weaker and began losing his eyesight. Not through lack of trying we fell through loopholes in the system and failed to get a proper diagnosis of dementia, long term help, advice or support.
“I became his carer 24/7 and he needed my constant attention. Medication, feeding, bathing, dressing and toileting take a lot of the day. In addition, hallucinations, non cooperative behaviours and night terrors are a massive challenge when there is no advice available."
Barbara explained how she felt "totally exhausted" after getting up at least 10 times in the night to help her husband.
“This situation became further complicated when I became seriously ill and had an extensive course of chemotherapy. Because I couldn’t afford a carer he had to come with me. He was refused hospital transport with me so I had to pay for taxis to get there," she added.
In the end, Barbara was spending up to £200 a week in petrol and parking when visiting Barney in hospital. She would visit every single day to help feed him.
She said: “When Barney went into care via Social Services, following his fall, he was placed in a home over an hour’s drive away and deteriorated so much. Fortunately I found him a wonderful nursing home, after visiting 22, where he spent his last years.”
Barney, who had a career in management and volunteered for Parkinson’s UK, died aged 78 of Lewy Body Dementia. The couple had been married 54 years.
She adds: “Unfortunately the Parkinson’s UK’s study shows that there are many more unpaid carers experiencing a similar lack of support. We do it out of love so please give us the support to do the best we can for those we care for.”
Parkinson's UK has launched a major campaign demanding better training for social care staff, as exhausted families say the needs of their loved ones with Parkinson's-related dementia are being neglected. Some are given no support at all.
Health Policy and Improvement Lead at Parkinson’s UK Sam Freeman Carney said: “There is a major problem with the lack of understanding of Parkinson’s-related dementia among paid carers in the home or in care homes. We also see this in health care professionals who do not specialise or have a special interest in the condition.
“This is putting incredible pressure on families, who as well as trying to navigate a complex care system, are also faced with care staff who lack training for this specific condition. Families are crying out for urgent support. We’re demanding action now.”
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