When my mum, Linda, began caring for my grandma, Helen, due to advancing dementia, she was unaware of the enormity of the task at hand. “I didn’t know it would be like this,” she used to say to me.
Participants in this study on adult children who care for parents with dementia, “initially described a feeling of incompetence and helplessness when they did not know the reason for the decline in the parent’s cognitive function and behaviour.”
When Linda’s care responsibilities ended after my grandma passed away, all she wanted was to hear stories like hers, so she felt less alone.
It creeps up on you
Linda says caring for her mum “was a gradual thing” that started “about four or five years ago.”
At first, Linda helped with ‘big’ domestic tasks like vacuuming and cleaning the bathrooms, or taking over Christmas lunch. “At that stage I didn’t realise she had dementia… that that was the road she was heading down.”
Her mum’s world was slowly taken over by feelings of “panic, stress and confusion.”
“But you don’t think anything of it… It was just that mum was getting older and couldn’t do as much, so you did whatever you had to do.” As her mum’s condition deteriorated, Linda helped her with hygiene and got her ready for the day each morning.
At this stage, Linda needed to take time off work. It wasn’t feasible to provide support for her mum primarily outside of work hours, or to take an occasional morning off for a doctor’s appointment. “I took Wednesdays as a Carers day.”
Linda, her brother, and her parents hadn’t discussed the possibility of her parents needing care as they got older. “It wasn’t anything that I thought would come to our family.”
It was “hard” for Linda to make sense of the “signs” of dementia, because she felt like her mum was invincible. “I knew she’d get old, but I certainly didn’t think she would get sick.”
“She’s my mum, so she’s always gonna be there… Your mum doesn’t get sick! Never in a million years had I thought that I’d end up looking after my mum.”
This is echoed by work on the changing dynamics of family caregivers and care recipients. Kimball writes that her mum was “always the caregiver” and that “we had plans [for the future], she and I.” When her mum received a terminal diagnosis, Michele suddenly found herself “becoming my mother’s mother.”
Advocacy and intuition
Research on the experiences and needs of caregivers in Australia has shown that: “Almost all participants made reference to what they saw as the necessity of filling the role of advocate and/or protector for their care recipient.”
For Linda, too, caring involved “a lot of advocating” for her mum, even while her mum still lived at home.
Linda didn’t trust other people to look after her mum as well as she could. “But I guess that’s just because I’ve spent more time with mum.”
Linda was the one to realise that her mum “wasn’t keen to have a shower. She’d knock the handles and it would get cold… And she wouldn’t know how to fix the water.”
Once they’d found a place for her mum in a nursing home, other people “couldn’t seem to see that she was in pain. [They] couldn’t see the pain on her face.”
“I got more worried because […] I wasn’t there. You just felt that they weren’t listening to her… They weren’t looking at the signs and seeing what was going on.”
I spoke with Mark Farrelly, an Aged Care practitioner who also cared for his mum after she was diagnosed with dementia. He emphasised that “family members still have a duty of care” to someone after they enter an Aged Care facility, especially for “outside activities.”
Mark also says a key part of understanding dementia is in recognising that “things are never the same. No two days are ever the same.”
Linda learnt to take things day by day. From monitoring her mum’s “heartburn” to being the only person to ask why her mum went through a phase of “only wearing one shoe”–she had a sore toe and a podiatrist had to be called in to fix it–Linda always listened to her intuition.
Carer, daughter, friend?
Linda: “It definitely affected everything. It was another full time job. And you’re always torn; when you’re at home you’re thinking of her, when you’re with her you’re thinking about other stuff.”
But even as her responsibilities increased, she never thought of herself as a carer.
The small degree of distance that came with not sharing a house with her mum distanced Linda from the ‘carer’ label. “I didn’t think about it as taking over any sort of care. […] My dad really was the primary carer, he did a lot at home.”
It can be difficult for people to identify as a carer. According to this study, “Many carers saw the caring role as intrinsic to their relationship as wife, husband, son, daughter, sibling etc” rather than a separate identity.
By supporting her mum, Linda was also honouring the relationship they’d shared: “She was a friend as well, not just my mum.”
“We spent a lot of time together. […] I never felt like I didn’t spend enough time with her… I never had that horrible regret that a lot of people have.”
This also meant that, as her mum’s dementia progressed, it was difficult for Linda to see the woman who was once “her person” disappear: “You’re so used to being able to go to her and talk to her about things, and I couldn’t go to my mum. I could say things but… she didn’t understand.”
Linda says her mum “was always there”, and jokes that: “Oh, you know, she’d done a little bit for me over the years I happened to have known her.”
It was only right that this time, “the focus was on her… It was just on mum.”
Jesse Blakers is a Global Studies graduate who studied at the University of Canberra. She's also a budding academic, with a current focus on queer representation in media. Jesse recently interned at BroadAgenda.