Carers struggling to have voices heard: Wound Champion Debe Thomas's story (NSW)
Monday, August 28
Ron Thomas cared for his wife Debe – who lives with myalgic encephalomyelitis (ME) and fibromyalgia – for many years, taking on some of the family responsibilities that Debe, who was often hospitalised, was too ill to manage. But Ron’s diagnosis with Frontotemporal Dementia (FTD) in 2014 marked the beginning of a physical and psychological decline that would see the caring roles dramatically reversed.
Debe describes this time as ‘very steep learning curve about all the things people don’t understand about dementia’. As Ron’s personality changed and became unpredictable, Debe sought an Advance Care Directive and Enduring Power of Attorney. Eventually Ron would become completely physically incapacitated and uncommunicative, requiring 24-hour care that Debe – whose own health problems were significant – gave her husband of almost 40 years lovingly and diligently.
Because of Ron’s limited mobility, wounds became a constant threat. Debe says the couple were repeatedly let down by the health system, experiencing routine under-resourcing, a lack of sensitivity to and specialised knowledge in dealing with people living with dementia, and a consistent failure to listen to the carer’s perspective. Debe fought constant battles to get her husband the care and attention he needed, as various medical issues were misdiagnosed or treated incorrectly. While Debe – with the assistance of a part-time carer personally funded by Debe and Ron, depleting their savings and superannuation – turned the now bed-bound Ron every 20-30 minutes, inadequate care during a hospital stay saw Ron develop pressure injuries that took months to heal.
Debe believes everyone, regardless of age or medical condition, should receive the best possible care – yet so much seems to depend on luck. For example, one especially diligent community nurse recognised that Debe needed additional help, training her in specialised wound care techniques and giving her an adequate supply of the correct dressing for Ron’s wounds. However, this experience was an anomaly, with other community nurses recommending incorrect treatments and supplying inferior products – leaving Debe to purchase the correct, more expensive, dressings herself.
Thanks to Debe’s dedication and advocacy for her husband’s care, his pressure wounds healed. Ron sadly passed away in December 2021.
Debe and Ron Thomas (c) Debe Thomas
Debe believes there is a huge amount work to be done to ensure that all Australians get the level of health care they deserve, including:
During Ron’s illness, Debe found incredible support and empathy in an online community of carers, many of whom shared her negative experiences. Together they have produced the CHECKLIST, a Facebook group resource that helps Australian carers and a growing number of care workers find the support they need. Debe also facilitates a Facebook advocacy and support group called Dementia Carers Australia.
Debe lives in southwest Sydney and is available for interview.