Caregiver Interview: Rashauna’s Journey from Daughter to Primary Caregiver 

Rashauna, 37, cares for her father and is a self-proclaimed “daddy’s girl”. She fondly recalls memories of her father growing up, who taught her everything she needed to know from electrical engineering to the value of a strong work ethic and putting her heart into everything she does. As her father’s dementia progressed, their roles began to shift, and Rashauna found herself having to embrace a new identity: primary caregiver. Still, clinging to the values her father instilled in her, Rashauna strives to navigate caregiving with the same love, heart, and strength her father exemplified to her throughout her life. Read her heartfelt story and learn how the healthcare industry can better support caregivers like Rashauna.

Tell us about yourself.

I’m a 37-year-old living in North Carolina and am the primary caregiver for my father (aged 78) who suffers from Dementia. I’m not married and don’t have children. I am a licensed mental health therapist, but stopped practicing last year due to caregiving and my current full time role. I have a master’s degree and I’m looking to further my education. As I’ve gotten older, I’ve become more of a minimalist. I want to be able to travel and do whatever I want to do. It’s the small things that make me happy but it’s been a struggle trying to follow my dream or fill up my cup when I’m the primary caregiver for my father. My hope is that more resources and funds become available for caregivers.

What was your family dynamic?

I was raised by my mother and father in a two parent home. They were married for over 20 years and decided to get divorced when I was 17, but they remained connected through family gatherings and cookout holidays. 

I remember growing up my dad was a hard worker. He retired over 30 years ago at a factory here locally. All I can remember and think about…and I think that’s what helps fuel me today is my dad was always there. He was the one who took me to all my orchestra recitals, for field day, anything you can imagine. He was there. I mean, I was and I’m still such a daddy’s girl. He always provided for me. He taught me everything. The work ethic that I have is because of him. I know how to do electrical work because of him. My dad always told me “I want you to learn so you won’t have to rely on someone else.” He taught me so much about life at an early age. 

What led up to your caregiving?

Since I was a teenager, I always thought, “okay, as my parents age, they’ve given and invested so much in me. I feel as if I should take care of them if they did me right.” In 2008, I started to notice that things were changing for my dad. He had trouble keeping the house clean, had difficulty paying bills, was more isolated, and kept losing things. Honestly I think the biggest one was the repetitive questions asking me the same thing over and over and over again. I think that’s really when it was real for me. I asked him to come stay with me and that’s around when the doctor visits and diagnosis came in. He was 65 with early onset Dementia.  

Tell us about your caregiving experience.

I had to learn to adjust as my dad’s disease progressed. It was a slow progression. Initially, he could complete tasks I would give him and loved being active and outside, reading the newspaper daily, and even using the computer. But over time, he stopped doing these activities. By 2017, he could no longer drive after getting lost, and I had to turn in his car. Now, he relies on me for everything, from administering medication to preparing food, and personal care. Despite his condition, he remains loving and enjoys laughing. I’m so glad he loves to laugh. I handle all his daily needs and he pretty much spends his days now watching TV, engaging with myself and the paid caregiver. I try to make sure he’s living a very comfortable life. 

My dad has lived with me for the past 15 years. The past few years have been such a struggle due to the lack of resources available. He does not qualify for Medicaid, has no long term insurance and is currently in the late stage of dementia. I have had to work from home and pay out of pocket for his caregiving support and respite care. I struggle between placing him in a facility and keeping him home.

What was the biggest surprise to you as a caregiver?

The biggest surprise, honestly, was him not recognizing me or remembering my name. This happened just last year and it broke my heart. It got real for me then. Despite being in the behavioral health field, I had to educate myself about dementia and its progression. I learned to take it day by day. It also made me really look ahead to plan for the future with things like incontinence which I never thought we’d get to, and other advanced care needs.

Who is your support system?

First and foremost, my faith and belief in a higher power sustain me. Aside from that, my mom has been my rock. She comes every day to help me through sundowning, getting him up out of bed, literally everything. I also found a caregiver to help with tasks through care.com and receive emotional support from family members like my grandmother. On top of that, I’m in my own individual therapy sessions weekly, which help me manage the stress and emotions of caregiving. Local resources like the North Carolina Trualta caregiver portal and agencies for aging have also provided valuable support.

How has Trualta helped you?

What do caregivers need?

• Continued support. Sometimes it can be a workshop or check ins. Something where others acknowledge that this is difficult and are willing to listen and help.
• Financial support.  A lot of people fall between the eligibility gaps for certain programs where you don’t qualify for certain things. I think there needs to be an exception for caregivers and loved ones. 
• Awareness. Advocacy for individuals suffering from dementia. More snapshots to let others know that is something people are dealing with and what caregivers go through with their responsibilities. 
• Respite care. I think that would be the main thing for me. If your loved one is placed at a facility, there’s a care team. But at home, think about when one person is trying to monitor their loved one’s health, help with personal care, do environmental services, prepare food…I mean, they’re doing it all. It gets tiresome. 

What advice would you give to other caregivers?

• Don’t forget to take time for yourself. Try to still do your hobbies and interests. Don’t downplay the time you need because it helps you in turn, provide better care. 
• Be patient with yourself. You’re going to have your challenging days, but take it minute by minute, hour by hour. Check in with yourself because it’s challenging, and a lot of thoughts and emotions can arise. Through it all, you kind of have to ground yourself.
• Consider professional care for yourself. If you have to seek therapy, thankfully there are virtual options. I have my virtual sessions weekly in the evening time. It’s a place for me to regroup and say, “okay, I can start afresh”. Sometimes it’s just that one call that is so helpful. 
• Lean on local resources. Educate yourself on them so that if you become overwhelmed, you’re familiar with what you need and what can help in the moment. 
• Reflect on your caregiving journey. Journaling has helped me a lot. I’ve learned a lot about myself and about life in caregiving. It’s allowed me to look at things differently, and understand providing care for my father as part of my purpose and why I’m here.
• Have go-to reminders and phrases. The big ones for me are “I got this”, ”one day at a time”, and “don’t forget to breathe”.  
• Hold tight to the good days. Everyday doesn’t look the same, but I hold tight to the good days that I have with him. 

The Search for More Good Days

Rashauna’s story highlights the immense dedication, love, and resilience that primary caregivers bring to their roles and the training, resources, and attention that caregivers need from the healthcare industry. Learn more about how Trualta can help bridge the gap for caregiver support and together, let’s help caregivers like Rashauna have more good days to hold tight to.