ROYAL COMMISSION: Carers have no support

First witness, Elaine Maree Gregory explained her struggle with caring for her mother full time which left her emotionally drained and wishing her mother would pass away.

Second witness to the stand was Dorothy (Dot) Holt, a former registered nurse, who had to stop working to take care of her mother full time. 

She felt helpless with no support until she moved to a tightknit community in the Barossa Valley in South Australia.

The third witness, Rosemary Jean Cameron, explained her struggles with her husband who developed an aggressive type of dementia, Lewy Body, and recalled how they became known as the “crazy people” in their hometown.

Mrs Cameron also explained how her local nursing homes were unable to take care of her husband who was routinely thrown out of aged care facilities because of his difficult behaviour, which resulted in Mrs Cameron considering suicide.

No guidance

Mildura women, Ms Gregory, provided close to 24 hour care for her mother for a whole year and was left feeling helpless with a lack of support to cope as a full-time carer.

“I got to the stage with mum, you’re beginning to think, “Oh my goodness, if she would just pass away it would all be over.” And I knew that wasn’t the right attitude to have… [I was] angry and frustrated. Now looking back you realise, “My goodness. How did I get through all that?” says Ms Gregory.

“You feel like you’re a bit of a failure because you’re not coping with what you’re doing. You should be able to cope with it all… If I wasn’t going to care for my mum, then no one else was. “

In her dealings with doctors and during her mother’s assessment through the Aged Care Assessment Team (ACAT), Ms Gregory was never asked her opinion on her mother’s condition or how she was doing personally with her caring role.

Ms Gregory was stressed from being constantly alert to whether her mother needed her.

Currently, her mother is in aged care, but getting her into the facility was a struggle since Ms Gregory’s mother thought she was the “worst person in the world” for putting her in aged care. Luckily, she grew to love the facility she moved into, but Ms Gregory found the whole ordeal very stressful.

She also experienced issues with funding for her mother, moving between Centrelink payments to the Department of Veteran’ Affairs payments.

Ms Gregory had to prove that her father, who passed away in 2006, had actually died due to the effects of war to access funding for her mother through the Department.

“There’s sort of no support out there at that stage then, no, so it would have helped me a lot to know which way to go,” Ms Gregory says.

Barely any breaks

Ms Holt, a former registered nurse in Mildura who moved to Mount Pleasant, South Australia, explained the difficulty in getting respite for her mother in rural aged care facilities as well as the health problems she developed through stress from her carer obligations.

Ms Holt’s mother experienced fainting attacks but was in good health. Although, she later developed dementia and began forgetting to eat or drink unless prompted.

In the end, Ms Holt’s mother was completely dependent on her and was unable to do any households chores or general personal maintenance.

Ms Holt described the care of her mother like “looking after a child” because she couldn’t do anything for herself anymore.

Similar to Ms Gregory’s statement, Ms Holt was also never asked how she was coping by ACAT assessors or doctors.

Additionally, Ms Holt was struggling financially since she could no longer work and wishes that the Carer Allowance would be similar to the amount you would be paid in a normal job.

Ms Holt attempted to place her mother into respite so she could receive a break to do other things like have a personal holiday, however, she constantly worried about her mother when she was away.

“I hated [putting mum in respite] and didn’t want to do it. Nobody was going to look after her as well as I could, and I think all carers probably feel the same way. And you’re entrusting people you love to people you don’t know,” says Ms Holt.

In 2015, Ms Holt’s mother’s care needs increased with her dementia becoming slightly more aggressive. She is currently in a facility in Mount Pleasant and receiving good care.

Ms Holt just wished there was better support available over the whole journey of her carer responsibilities.

While Mildura had fewer support systems in place, Ms Holt has found stronger assistance in Barossa Valley.

She found that Barossa people were more supportive and always asking her how she was doing.

Ms Holt added that the carer hubs in the Barossa are really focussed on the carer, which has been really beneficial to her own health.

Treated like a criminal

Mrs Cameron from Macedon Ranges in New South Wales lived a wonderful life with her husband Don, before he developed one of the most aggressive types of dementia, Lewy Body.

He became anxious, dependent, paranoid with hallucinations, and started becoming very aggressive.

It took a long time for an official diagnosis from medical practitioners who all said it was stress. Only after Mrs Cameron took her husband to a memory clinic did they determine it was Lewy Body dementia with Parkinsonian symptoms.

“They were very nurturing and understanding there, and they took time with Don and they took time with me to just talk about what, you know, dementia was, but there was no pathway there,” says Mrs Cameron. 

You walked out of there thinking, “Well, I now know what we have to deal with”, as in that it’s a diagnosis, but there was no referrals, there was no pamphlets, there wasn’t anything to help me to know… I had no idea what to do from there.”

Following his diagnosis, taking full time care of him become more difficult due to his behaviours and rise in anxiety. Some of his hyper-vigilant tendencies resulted in very violent responses directed at Mrs Cameron.

Generally, Mr Cameron couldn’t be left alone at all and his wife would be forced to undertake her daily chores all while holding his hand.

When he did start to become anxious, Mrs Cameron would start to hum tunes and dance with him no matter the location, which calmed him down, but due to the small area the couple lived in, they became known as the “crazy people” in town.

“[No one] was there to help. I just learnt that I was on my own and I couldn’t rely on anyone else to get me through that. It was pulling in whatever techniques I learned over the time that would work, and sometimes they did, sometimes they didn’t,” says Mrs Cameron.

Around this time, Mrs Cameron started to put her husband in respite for her to get a break as she was exhausted, but it never lasted long as the aggressive nature of Mr Cameron’s dementia often resulted in facilities kicking him out.

“I decided that I would try to have a bit of a break at home and my children would go in to see Don. But every day they would ring me… So it was a constant ringing me and I kept saying, “You do understand he has dementia; I mean, you’re a dementia specific area, you know, can you not deal with it so I can just have my respite break?” explained Mrs Cameron.

“As much as I didn’t want to walk away from Don, I expected that they would be capable of doing that.”

While in a respite stay at one facility, they realised they could not care for him and decided to jump the queue and place him into a mental health facility to provide his care.

Mrs Cameron says, “It’s pretty upsetting because Don wasn’t a criminal. He wasn’t choosing to do this. This was his illness. It was like a cancer patient, they have certain symptoms and it’s beyond their control, and so is dementia.

“Don had no choice in this whatsoever, so to be told he was behaving badly… there were times I felt that I had the naughtiest boy at school.”

This was a common theme at many of the nursing homes Mrs Cameron approached for respite care.

“I just remember feeling so extremely sad for Don, to be almost rejected when he needed help the most… Walking out of [one] facility with Don in one hand and his goods in the other, I hopped in the car and thought I can’t rely on anybody,” Mrs Cameron says.

“I don’t think there’s anything out there and I was so exhausted. I thought I’m failing him as well. I thought if I can’t look after him, nobody else certainly is showing me they can… Maybe I just end it for both of us.”

Mrs Cameron says the lack of support provided to her as a carer for her husband as well as poor understanding of dementia medical professionals resulted in such an awful experience for herself and her family.

The next hearing will take place today in Mildura, Victoria.