I was a caregiver for my dad, Darrell Dugan, who was diagnosed in September 2018 and died in May 2019. He and my mom moved in with us in late January 2019 so that we could assist with caregiving. It was so helpful for me to connect with others going through these experiences in Facebook groups. My dad’s ALS moved so fast it gave us whiplash, and by the time something we needed to help with caregiving was ready (e.g. hoyer lift), he progressed past the point of needing it.

For my fellow caregivers: do not feel you have to be a medical expert. You are doing the best you can every day! This journey is really really hard. Make sure to take care of yourself during this journey too. In our case, we were moving so fast that I wish I had just stopped more, taken a breath, and just spent time with my dad vs. trying to fight ALS daily.

I know this is also a hard thing to hear, but hospice does not mean the end is coming immediately! Once we said yes to hospice, the services and resources we received were incredibly helpful. And when this journey ends, there are also Facebook groups to help those of us who are grieving the loss of our PALS. You aren’t alone!