Imagine waiting for your elderly mother to become hospitalised, so that she can get the care she needs. Daughter Catherine McKnight has lived through that wait.
For the past ten years Ms McKnight has been caring for her elderly mother who was diagnosed with dementia in her late 60’s.
Dementia impacts about 15 people per 1,000 Australians, with diagnoses occurring each day.
Dementia sufferers experience memory loss and confusion, and they can sometimes have difficulty in performing everyday tasks.
It also change personalities.
Dementia is becoming the number one cause of death in Australia, with predictions that by 2058, 849,331 Australians will be diagnosed or die from the disease.
Source: The Australian Bureau of Statistics
Dementia Australia data has indicated a significant increase in people living with the disease.
Source: Dementia Australia
Ms McKnight’s mother, Ellaine, was diagnosed with early onset dementia as a result of untreated diabetes. She recalls the fear, disruption and emotional toll the diagnosis has taken on the family.
“The day I took her to the geriatrician and he diagnosed her with dementia, I’ll always remember, I dropped her home, got in the car and cried,” Ms McKnight said.
“I don’t like to say forgetfulness, because it is more than forgetful.
“It’s having no memory at all.
“The no memory of events, like falls, not taking medication, the events leading up to major accidents, the frustration of having to explain and relive them only for her to have no memory each time.”
While dementia causes significant stress and confusion for the individual with the disease, the diagnosis carries other burdens, that are often invisible.
The repercussions of carer burden is a concept that Ms McKnight deals with on a weekly basis.
“It’s not just the emotional effects on me but also on my family,” she said.
“They don’t want to see Nan or talk to her because they have witnessed first hand the insults.
“People make comments like ‘it’s just the dementia’, or, ‘but she’s your mother’. You then… bottle it all up inside.”
Ms McKnight also stated that her mother struggles to regulate her emotions and that as a result she bears the brunt of her actions.
“I’ve found that the more scared or hurt she is, the more she lashes out, the worse the insults get,” she said.
“She’ll work herself up, then get distracted and go on about something else, while you’re there trying to process what just happened.”
Ms McKnight also said she found it difficult to take her mother into public situations.
“You start second guessing taking her out, you start worrying how she’ll react in a different location,” she said.
“Mentally it is a very fast downward spiral of, the ‘what ifs’, and trying to process all of that emotion.”
Occupational therapist, Melissa O’Grady said that caring for a loved one with dementia is taxing, with carer suffering from both mental and emotional pressures.
“Often health departments will set up support groups for the families of dementia patients,” she said.
“Caring for loved ones with dementia can affect all aspects of your life.”
This effect has rippled through Ms McKnight’s life. A mother to three kids and a full-time worker she said that worrying and caring for her mother prevented her from caring for her own family,
“For appointments, I would need to take time off work, then worry about picking her up,” she said.
“It’s not easy to find free time, between working full time, three kids, their sports schedules, just normal everyday life.
“Some days I just want to sit down and rest, but if I don’t look after her, who will?”
Ms McKnight feels that those who have not experienced career burden are quick to place judgement.
“You have the pressure from other people’s opinions, when you happen to mention why you’re stressed out or not sleeping,” she said.
Statistics from Australian Institute of Health and Welfare has shown that 75 per cent of individuals caring for loved ones with dementia suffer emotionally.
Source: Australian Institute of Health and Welfare
Dementia consultant, aged care worker and counselor, Nina Catalano said that dementia carers are usually unaware of the support networks and are easily burnt-out as a result.
“Dementia is different for different people,” she said.
“Depending on the type of dementia and how advanced it is and what the carer has to do to support the person, often carers become quite unwell because of the burden they are under.”
Ms Catalano said that the mental toll that occurs from taking care of their loved one is also a result of grief.
“They’re (carer’s) grieving all the things that they had planned together, they’re grieving the loss of the personality of the person, they’re grieving future adventures,” she said.
Ms McKnight said her mother is doing significantly better now that she has been placed in the hands of professional carers and in a safer environment where she is less likely to become a danger to herself.
“When she was at home, she would walk down the street, she would get in strangers’ cars, she wouldn’t answer her phone, she wasn’t taking her medication or looking after herself, the list goes on,” she said.
“She’s now probably the healthiest she’s been in a long time.
“And there is a level of comfort knowing that she’s not going to walk off and get lost. That she is not going to get hurt by strangers.”
With data showing dementia cases are on the rise, it is expected that more carers will face the burden of caring for their loved ones.
Ms Catalano believes there should be more education on the support networks available for those having to care for those living with dementia.
“There are people in the early stages that can still live quite well, supported in the community, and this is why Dementia Support Australia advocates for (more) support groups,” she said.