Cancer patient cares for daughter 24/7
‘Emma’s very strong, and we have got weak’
A PENSIONER recovering from cancer while also being a full-time carer for his 38-year-old daughter said he feels people in his family’s situation have been ‘abandoned by the State’ due to the severe lack of respite services.
Austin Hands, 74, from Cavan, was diagnosed with prostate cancer 13 years ago. Since then, he has had five surgeries, along with follow-up treatment.
There have been times where he has had to postpone his hospital appointments because there would be nowhere to leave his daughter Emma who has Angelman syndrome, a rare genetic condition that requires 24/7 care. She has scoliosis, requires a wheelchair and has other complex needs.
Austin’s wife Cathleen, also in her 70s, is unable to care for Emma alone.
Last May, the family spent several months trying to get respite care while Austin underwent two months of treatment in hospital.
Austin, who won Cavan Carer of the Year in 2018, told the Irish Mail on Sunday: ‘Emma’s very strong and we have got weak. I’ve had a lot of illness – it’s become a major issue.
‘I had prostate cancer removed about 13 years ago, it was quite advanced at the time. Three weeks after it was removed, I was hospitalised again with a severe infection. That hit us hard.
‘Help came into us for about six months and Cathleen was better able to manage then, but last year we had to battle for any sort of help at all.’
In 2018, the family contacted their local TD, Brendan Smith. Overnight respite care was eventually shared between three facilities for two months, one in Cavan and another more than 60km away in Monaghan.
In the last six years, the Hands have found it next to impossible to get overnight respite care.
Austin is concerned for his daughter’s long-term care and for other families in a similar situation: He said: ‘They’re cutting beds for overnight stays but there are more people with needs like Emma’s coming in each year and there’s no attempt to improve on it. There are promises, but things are getting worse.
‘The HSE might be happy thinking we might only be around for a short while but younger families will fight. We’re too tired, but there’s going to be a lot of noise made.’