The Royal Commission held its second round of public hearings in mid-March with a focus on home care. Delivered appropriately, home care should maximise independence and enable people to remain living in their homes for longer.
However, as the demand for these services rise and wait times increase, there have been reports of delivery falling short of client needs. These factors can contribute to compromised care and premature entry into residential care.
Aspiring to change all this is carer and Dementia Advocate Lynda Henderson. Lynda has been caring for her friend Veda Meneghetti who was diagnosed with Frontal Temporal Dementia in 2012 at the age of 61.
For six years the former Senior Manager at TAFE and rock musician have faced the challenges that come with Veda’s diagnosis, while drawing on their skills and shared passion for change to educate and support others traveling the same road.
Lynda shared their journey with the Commission in March, and spoke of the difficulty of coming to terms with a life-changing diagnosis so young; making plans for home care instead of plans for retirement; adjusting to the initial delivery of home care which provided more angst than support; coping with changes in Veda’s condition, and the pain of living with anticipated grief as Veda’s condition progresses.
Lynda also shared one of the most difficult periods she experienced as a carer – the six months’ wait for the delivery of higher-needs home care. During this time Veda suffered immense fear and anxiety as well as sleeplessness. She required round-the-clock care. Lynda became the sole carer for Veda and described seeing her friend go through such a traumatic period, without assistance, as devastating. It also took a toll on Lynda.
This critical moment in the hearing was lifted when Lynda shared a video she and Veda had made in 2015, which beautifully captured the strength in community and connectedness when individuals are seen beyond their diagnoses.
Lynda’s testimony was honest, powerful, and went a long way to not only tell but also show the importance of community support, and the impact home care has on the thousands of Australians reliant on its timely and appropriate delivery.
We sincerely thank Lynda for sharing her experience as a carer and for her truly inspiring work as a Dementia Advocate.
I emphatise with Lynda and fully understand her heartaches and frustrations not re diving help from the government at a time as a full time carer of her sick friend. I am a carer myself, looking after my beloved husband inflicted with dementia. My husband is a big man, six feet tall and heavily built. I am under five foot and could hardly cope with the daily care needed to make my husband comfortable in his illness. He and I are happy with me caring for him at home. I just need help. Am still waiting for my husband's Home Care Package to be approved. When? Only God knows. My husbands illness is progressing and our old age pension simply cannot cope with equipment needed to give him some comfort in his illness please give us a hand! We need it.
I read this article with interest and could relate to a number of the comments re: home care, the disease progression, the immense fear, anxiety and sleeplessness. The best home care we got was from Bolton's/ RDNS for a precise medical issue. Not for want of seeking I could not get meaningful support for the Alzheimers issues until my wife was hospitalised after a psychotic episode. At which point she was medicated and deemed fit only for residential care. The support was now provided for a limited time via a secure mental health unit and it's 24 hour 7 day a week staffing. It seems to me that it is elements of this that are needed in a home support package but as yet the industry people I have spoken to say that request is not realistic, at least in our case. I do wonder if the $500,000.00 plus we are being asked to contribute now for residential care is having an impact on the medical professionals and their decisions. I would dearly like to care for my wife at home as an alternative.