Amy Stephens

My dad always said to me as a child, "lead, follow, or get out of the way." It's simple but it keeps me going and is a great reminder of what role I want to take in a situation.

What are your biggest challenges as a caregiver?

I have found that I need to constantly push providers who are not my dad’s primary providers to correctly categorize his symptoms so he gets the specialized care he needs. It’s critical to be a strong advocate for your care recipient. I learned how to position my advocacy in ways that would get effective responses, in essence, getting people to work with me instead of against me. I would love to coach other caregivers in effective advocacy, and it’s one of the reasons I was interested in being a Fellow.

What resources or support networks do you utilize?

Currently, we are using the VA Community Outreach program which has helped immensely so Dad doesn’t have to make the long drive to Los Angeles. It was too much for him between the long car drive and the long doctor appointments. But I had to be relentless in advocating for that solution. I worry that not all caregivers are equipped with the tools to be a determined advocate and investigate other ways for their veteran to receive support when there are roadblocks. We also use the VA home aide service; however, it’s been hard to find enough support as my dad needs 24-hour care.

What have you learned about yourself through your role as a caregiver?

Caregiving has definitely tested me to my limits. I have learned how far I can push myself, and now I am aware of when I need to step back and that it’s ok to do so. You can’t be perfect every minute, or always on your game. It’s important to allow yourself that understanding. My biggest lesson working with someone who has memory loss is just to live in the moment. It doesn’t matter if that moment to your loved one is reality or not. It’s their moment.


My Story