Consumers and carers

  • My Mum and many others

    Elvira’s mother has Alzheimer’s disease and lives in a nursing home.  After experiencing her mother’s two hospital admissions, Elvira feels things could be improved.

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  • Involve the carer

    Cheryl cares for her father Garnet, who has moderate dementia. Cheryl believes education about dementia, communication and involvement of carers would improve the hospital experience.

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  • Training, more training and empathy – carer’s story

    Linda’s mother, Gloria who has moderate dementia, experienced an extended stay of several weeks in hospital for rehabilitation and assessment. Linda found one episode particularly disturbing.

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  • So many hospital visits

    Janice’s 87 year old husband, Fred, was diagnosed with Alzheimer's disease over five years ago. In addition to heart problems, which leave him feeling lethargic, Fred’s below average hearing makes communication challenging. Janice shares their experiences in hospital and strategies that could make a positive difference.

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  • Every staff member makes a difference, Barbara’s story

    Knowing that a loved one has to have surgery – even if it isn’t major – is always a worrying time. Knowing that your loved one has life-threatening, rare medical conditions, and also has dementia, which may cause complications for the anaesthetist and cause further deterioration, is even more worrying. Barbara Halloran shares her story.

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  • My parent’s daughter

    Mabel’s mum had vascular dementia for 15 years before she passed away in 2014. She had been hospitalised more frequent in later years, eight times in 2010. Her father also suffered Alzheimer’s dementia for three years before he passed away in 2014. Mabel cared for her parents and travelled regularly from Newcastle to their nursing home in Sydney to look after them and stay with them in hospital. Mabel’s story highlights the challenges faced in managing her parent’s illness, including the fact that English was not their first language and that Mabel had to travel long distances to help care for them.

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  • “A Bed for the Night” – Bob Leicester

    Bob is married to Allison, who was diagnosed with Alzheimer’s disease in 2006. Bob writes about his wife’s hospitalisation in 2009 for her second knee replacement. Bob was cautious the second time as Allison had climbed out of her hospital bed after her first knee replacement operation in 2004 (prior to her formal diagnosis of Alzheimer’s disease). On that first occasion, Allison had post-operative delirium and tried to leave the hospital as she was convinced that she was being held captive by a secret sect.  As Allison’s second knee replacement operation would involve surgery under heavy anaesthetic, followed by five days in a private hospital and 10 days in a rehabilitation centre, Bob and Allison decided it was necessary for Bob to stay with Allison in the hospital and rehabilitation centre. Bob says “someone with dementia should be kept under constant surveillance immediately following a major operation.”

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  • The person is still there – Joan Jackman

    Joan Jackman is a former carer of her husband who had younger onset dementia. Joan challenges us to have a deeper understanding of the experience of a person with dementia. In particular, how changes in language and perception can affect how a person communicates. Joan stresses that we should never lose our respect and understanding that the person is still there.

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  • The importance of an advance care plan

    Carol Bennett, former National CEO of Alzheimer’s Australia, shares her story about her late mother’s experience living with dementia. Carol stresses the importance of implementing advance care plans. (more…)

  • Taking the stress out of ED visits

    Imelda Gilmore is married to Graham (68), who has younger onset dementia and lives in residential care. Graham is in the late stages of dementia, and has had three presentations to the emergency department (ED) due to falls. Imelda writes that Graham’s last ED visit was much less stressful than previous trips, as unnecessary investigations were avoided, and the focus was on Graham’s comfort.

    Imelda says:

    “When staff actually "get it", the experience for the patient and the carer is much less stressful…” (more…)

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