We’re so excited to interview you! You’ve made a huge contribution to this project and during one of the most intense times of your life. Can you start by telling us a bit about yourself and what you’re up to?
Sure! I am a Web Accessibility Specialist at ilumino
, interested in studying accessibility design, development, and products. I just started this week and it’s been so fun and exciting! I’m getting to continue my learning and education in this role too. In my spare time I enjoy volunteering, hiking, traveling, and listening to music.
Caregiving has almost taken its place in my life from the time I was a pre-teen. It gradually increased as I got older and took its toll in about the last year or so.
Can you talk more about how your role as a caregiver has evolved?
The internal battle between wanting to be a 20 something while helping my mom - and the guilt brought on by it. Even after my mom’s passing now people tell me I have to “start my life over” and that’s so baffling to me.
You’re forced to grow up earlier than you should but it’s given me wisdom in life and understanding a lot of things I didn’t understand when I was younger. As bad as it sounds too, I think it made my mom and I closer in the end and it’s drawn my brother and I closer as of late.
It taught me to love my mom more. It taught me to be patient with her and in general. It gave me respect for nurses and doctors and appreciation for their jobs even though I’m terrified myself to go to doctor appointments. It taught me to cherish time with people and that life is definitely short. On the death side of things you learn a bunch too - I learned about hospice and palliative care, funerals and funeral planning, what it means to submit something to probate.
My biggest challenge at the moment is the combination of living during grief.
I can’t imagine hearing that phrase “start life over” after having someone so important pass away. Though I don’t think it’s uncommon to hear or even untrue, perhaps just lacking in context and empathy.
What are some things you wish people knew about caregiving and losing someone?
Caregiving is lonely and can make an incredible dent on a person’s mental health. I’d say if you have a friend in this position and you truly value your friendship with them - be patient with them. For example, if a friend seems like they can never hang out because of being a caregiver, don't make them feel guilty of it. Offering to help or even just letting them know you’re there does so much. Educate yourself on compassion fatigue as it can affect lots of caregivers too and give insight about what they’re going through.
Caregivers that meet that grieving stage may come out of it extremely lonely and isolated - long after their loved one has passed. I’d also strongly advise against being quick to suggest nursing homes to someone. In my situation, all of my mom’s family had passed away in nursing homes and she begged not to be in one. It only made me angry to hear people suggest this. I could have used more support as far as how to speak up for my mom.
Just understanding what was going on was so tough given that her condition was rare and even the doctors were confused. Having to realize that sometimes even my presence wasn’t helping things - as much as that hurts to think about.
The We Give Care project is dedicated in loving memory of Tamra, Natalie's mom.
Sounds like you’re constantly having to learn a lot about your options and make decisions quickly which I’m sure could consume every free moment. Especially when it’s someone you care so much about.
How do you even begin to balance the intensity of that with other aspects of your life?
I honestly didn’t, it just took over. I love my mom and dropped everything for her which she hated. She wanted me to go out and live my life which I couldn’t bear doing knowing what was going on with her. I would’ve hated myself. I’m not even at peace with some of the things I did while being her caregiver. I was very fortunate to have a job that I worked remotely in which allowed me to be there whenever she had a doctor’s appointment or anything else. I tried volunteering here and there but the last time she ended up in the hospital I kinda dropped everything.
Nothing would’ve helped more than having a clone of myself or someone who could step in when I needed to step out. My brother was able to help at times but he’s a first-year law student so juggling that and caring for my mom was even harder for him than myself. My mom and dad were divorced but when things were getting bad he was a huge help in answering questions about hospice/palliative care and medical questions.
I can’t emphasize enough how strong and resilient you’ve been just in the last few months alone. As you know, the hope for this community is to provide some type of connection, support or relief for others in your position.
Can you talk a little bit about how community has impacted you throughout this journey?
I went to church but my church is so big that it’s hard to make friends or connections. I was in 3 small groups and had to quit them to help my mom. People reached out to me and I’m forever grateful but it became so incredibly lonely. It’s even lonelier now without my mom. It’s weird because I felt that sense of ‘community’ appear after my mom had passed but I feel like that’s how life goes. It’s nobody’s fault but it’s just hard because people have their lives and I felt this tinge of guilt for even so much as reaching out to someone.
I could see WGC acting as a virtual community for those that may not have that local support. In my case, a portion of my biggest support was states away. It helps to have online community if you find yourself in a lonely position.
That's definitely the goal. Providing a sense of consistency that friends and family might not be able to, making sure that people feel heard and see, just spreading the love.
Thank you again for all the time and energy you've put into this. You've made a huge difference for us and I know can speak for everyone on the team when I say you're a huge inspiration.