For 28-year-old Jess Crawford, her mother’s recent FTD diagnosis has led to challenges and fears, leaving her to question if she too could develop the disease one day.

In an article sharing her journey, Crawford describes how she found answers and support after her mom, Joan, began displaying symptoms of FTD in her late 50’s. Joan’s condition has progressed rapidly since her diagnosis last February, leaving her unable to speak or seemingly recognize her daughter.

“Mum is really advanced now and the journey my family has been on so far hasn’t been easy,” Crawford told Home Care UK. “I’m in a situation currently where I am grieving my mum, even though she’s still alive.”

This feeling of “anticipatory grief,” or feelings of loss and dread that family members experience when they imagine life upon the death of a loved one, is described in the AFTD resource, Walking with Grief: Loss and the FTD Journey. Released earlier this year, the resource was created to help individuals and families navigate the grief that is so frequently a part of the lives of all who are touched by this disease.

Crawford also speaks to the uncertainty of her future: her mom has been identified as a carrier of a mutation in her C9orf72 gene, which means there is a 50/50 chance her kids also harbor the mutation and could develop FTD.

Crawford has since started a blog to detail her family’s journey called FTD & Me. But despite the challenges in managing her mother’s care, Crawford still tries to find meaning in the little things.

“FTD can be so overwhelming, it can make you feel totally incompetent,” she says. “It can make you feel totally out of your depth and you don’t know what you are doing. Her level of care required now is huge but despite all of this, I do still manage to enjoy my time with her and find small victories.”

To read more about Crawford’s journey, click here.