When Kailey Spicer became a carer for her Mum, who has Huntington’s Disease, the young former brand manager at a large company had zero experience of her new role ahead.
Despite her lack of any caregiving experience, she didn’t hesitate to quit her corporate job to help.
“As the primary caregiver, my Dad does such an amazing job, but I didn’t want him to do it alone.”
With an older sister living in Mexico, Kailey felt it was something she just had to do.
“I miss the daily interaction with the different people I used to work with. Sometimes I miss the sense of identity that goes with having a ‘real job’.”
“But I knew I wouldn’t regret spending this time with Mum, she is a very special person,” she says of the woman who dedicated her life to raising her and her sister, who were both adopted (Kailey from South Korea, her sister from the United States).
Given that her Mum has constantly changing needs, Kailey and her Dad have had to use a lot of problem solving and creativity with finding ways around different challenges as they present themselves.
“As Huntington’s is degenerative, Mum is gradually losing her ability to do different things, like dressing, eating and speaking.”
When dressing, they have to think about which styles of clothing are the easiest to put on and what are the best types of fabrics to regulate body temperature. Kailey has sourced stylish yet functional cutlery and tableware that allows her mum to eat more easily on her own without feeling self-conscious. Then there’s the constant experimenting with different recipes and foods to find ones that are both easy to swallow, and nutritious. She’s also worked out the best beauty products that don’t require rinsing with water, therefore eliminating the need to stand at a sink. Kailey now does facials and manicures at home, which her Mum loves. And Kailey and her Dad are always researching the accessibility of places to go for day trips, and suitable holiday houses for road trips.
Kailey raises the point that she was fortunate enough to be able to actively choose to be a carer for her mother. For many others there is no real choice.
“The role of a carer is taken on without even thinking about it, most in this position do not even identify as ‘carers’. This work is done by partners, wives, husbands, mothers, fathers, daughters, sons – without question, and without pay. These carers do what they do, because a loved one depends on them.”
Even though the role is an all-consuming, physically and emotionally demanding one, Kailey always puts herself in her Mum’s shoes and thinks that no matter how frustrated she might feel, imagine how much more frustrating it must be for her once-active mother.
Kailey says she is fortunate to be surrounded by supportive people. Her partner, friends and former colleagues have provided wonderful emotional support.
“Even simply being told you’re doing a good job every now and then can lift your spirits. Carers don’t often get acknowledged for what they do.”
And she’s surprised herself. “Caring requires a lot of patience and being quite an impatient person, I thought I would find this particularly hard. But surprisingly, I never lose my patience with my Mum.”
Any advice for those who know someone who is a carer and wants to offer support?
“I don’t think you can go wrong with anything that allows a carer to take some time out for themselves (carers don’t often get to think of themselves!) whether it’s offering to look after the person they are helping, cooking a meal, doing the laundry, going grocery shopping so the carer doesn’t have to think about it that day, just spoiling them in some small way or simply picking up the phone and checking in.”
Kailey is quick to say there are positives as well. She has a sense of purpose that she didn’t have before, and knows that in 10 or 20 years, she won’t regret being there for her family. Mentally, she’s learned to be more mindful every day. “To take each day as it comes, really enjoy the moments we have, and not worry about what may or may not happen in the future.”
Also, with this new perspective, her personal experience has now led to a change in direction career-wise. Kailey is putting her entrepreneurial skills to use, starting a business with the objective of creating a more inclusive world for people with limited mobility. Her start point is smarter disability and aged care products that are so well designed, people feel positively empowered and proud to use them.
“The world of a carer is one that’s not fully understood by those who aren’t carers. I would like my business to help increase the awareness of family carers and the important role they play in society.”