by Erica Largent

Grief is a powerful force, and when it is part of your daily life, it can completely overwhelm you. I know this firsthand: For the past two years, I have been the primary caregiver and advocate for my beloved spouse, Larry, who was diagnosed with FTD at 34. Processing and accepting his diagnosis has certainly taken time and coming to terms with the dramatic changes in him has not been easy. I have had to let go of the life we had planned together and allow myself to grieve that loss.

Not surprisingly, this journey has taken its toll on me, emotionally and physically. I’ve willingly let go of key parts of my former identity, in order to fully inhabit my role as a care partner. But over time, I became keenly aware of how much of myself I was losing. The reality was heartbreaking, but I didn’t feel strong enough to take action and reclaim my well-being.

Not only was FTD stealing my partner, but it was also destroying my health and robbing me of my joy. Then one day I had an awakening. I decided that this was simply too high a price to pay.

I still face loss on a daily basis. The difference is I have begun to engage with my grief, to take time to process it. I allow myself moments to sink into that grief and acknowledge its power and presence. Afterwards, I am better able to tackle the many challenges I face each day as an FTD care partner.

Shifting my mindset in this way has allowed me to find and reclaim important pieces of myself. And I know that this would make Larry incredibly proud. As my family and I walk this incredibly difficult road together, I will not allow FTD to have the final word.

For additional care partner perspectives and practical tips on navigating grief, be sure to download AFTD’s newly released resource, Walking with Grief: Loss and the FTD Journey.