These stories have been shared by those who have joined the campaign.
Here consumers, family members and carers share their experience of cognitive care.
To share your story, click here.
Merv cared for his mum who had Alzheimer’s dementia at home. There was an incident in which Merv’s mum became incoherent and fell sideways. She was admitted to hospital where her condition worsened. Merv never found what caused his mum’s deterioration. He shares his story.
Kathleen’s mum, at the age of 79, was admitted to hospital for vomiting and diarrhoea. She had been unwell for a long time and had been admitted the previous year. Over her seven week hospitalisation where she had multiple hospital and ward transfers her mum’s condition slowly deteriorated. She developed delirium, became withdrawn, was in pain and experienced significant weight loss. She was eventually diagnosed with endocarditis, (infection of the heart) but was too unwell for surgery and died. Kathleen felt that the family’s concerns about her deterioration were not heard and the delay in diagnosis and all the complications that her mum developed meant that she was not treated in a timely manner.
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.
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.
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..."
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.
Brett shares his story about his father, Bob, who is currently in the late stages of Alzheimer's disease, and has previously displayed uncharacteristic aggressive and disturbing behaviour during hospital admissions.
Mabel’s mum had vascular dementia for 15 years before she passed away in 2014. She had been hospitalised more frequently 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.
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. Issues/problems faced In the last two years my father, Garnet, has been in hospital for pneumonia and was admitted again following a fall. I went with him to the Emergency […]
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.
I am a person living well with dementia, supported by my husband. About a year ago, I became very ill with severe gastro-type pain and passing out. (Later this was identified as diverticulitis, so nothing to do with my dementia.) I was taken by ambulance to the ‘resus bay’ of the emergency department, as I had very low blood pressure and a troubling heart rate. My husband was following, so got there later, and couldn’t come in to see me until I had been stabilised. He must have been very worried to find I was in the resuscitation area.
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.”