For twenty-five years I have been caring, and I will be caring for another twenty-five.

When listening to friends who talk about their investment properties, their shares, or their savings, I imagine what my life may have been if I too had the opportunities to build wealth through working and earning a good wage and having a disposable income to invest in the future.

I think about when I had to resign from my part-time job after a year of maternity leave, as my caring role was all-consuming with a child who was failing to thrive, with weekly physio, OT, special needs playgroup and pediatric appointments. I’ve been unable to work for many years due to the complex needs of a child that are greater than any parental responsibility. I now look at my superannuation balance and imagine what it might have been like if I had been able to continue to work, even if only very minimally. I’m acutely aware that at fifty years of age I only have another seventeen years before retirement. While friends work full time and their children leave home, planning their comfortable self-managed retirements, I worry about our future and what it holds.

Over the twenty-five years of caring, I think about the many hats I wore. I imagine being recognised and valued for the many roles as a carer, such as: dietician, physiotherapist, speech therapist, OT, nurse, GP, cook, cleaner, personal care assistant and accountant. Roles that I have had to adopt without choice. Services often say they cannot provide support because their workers aren’t trained or it is too risky, but as a parent, you have no choice and have to learn quickly. You are expected to just do it.

In twenty-five years, I will be seventy-five years old. I ask myself, will I still be caring?

I have not done any estate planning. I don’t believe I have the wealth or assets for a future plan. To think of a future where I am not there to care for my son is difficult, and I shut down. I don’t want to pass this responsibility on to my daughter, as I feel the guilt of passing on the weight of such responsibility. A responsibility that she shouldn’t have to bear. Discussing this possibility makes it all too real and too hard.

I question whether I will be able to continue to provide a caring role to my son? At seventy-five will I be physically and cognitively able?

Who will care for me?