Craig is the spouse and caregiver of his husband Alex who was diagnosed with Motor Neurone Disease (MND) in 2021. Craig and his partner Alex met in 2012 and got married a few years ago. The wedding was an intentional celebration of their shared interests and passions before the impacts of MND became more severe.
Craig’s story Craig shared insights into the emotional and practical challenges of navigating the disease progression. After the diagnosis, he describes a shift from an initial “fight or flight” mentality to accepting the lifestyle changes required. He has had to balance caring for Alex with maintaining his own physical and mental health.
Craig has faced difficulties accessing adequate support and resources as a young, unpaid caregiver. He expressed frustration with the lack of tailored assistance and the undervaluing of the role of unpaid caregivers.
Maintaining social connections has been a challenge, but Craig has found writing and journaling to be a cathartic outlet. He emphasises the importance of respite, social connections, and self-care to sustain the caregiving role.
Overall, Craig’s story highlights the complex personal and systemic issues faced by those caring for loved ones with terminal illnesses like MND. He shares his experience in the hope of raising awareness and advocating for improved caregiver support.
Thank you to Craig and the Motor Neurone Disease Association for sharing this story.