Hi there and welcome back to Aging Together! This week, we are continuing on with Black History Month and the topic of caregiving in Black America. This week, I sat down with our very first guest speaker, Nadine Prince-Rosemond. Nadine shared her lived caregiver experience with the ins and outs of healthcare in America as a Black woman while taking care of her mother.

The following conversation has been summarized for clarity. You can listen to the full conversation on the podcast!

Pooja (Host): Nadine, thank you so much for joining me in this discussion today.

Nadine (Caregiver): Thank you for having me today, Pooja. I am excited to share with you my journey.

Pooja: So, I understand that you took care of your mother. Can you tell me more about that?

Nadine: Sure. Around 2016-16, I noticed that her medical needs looked like their needed to be taken more seriously. So I changed her doctors based on the things she was telling me that I felt weren’t being addressed. I actually went with her to one of her appointments, and I just didn’t like the way the doctor responded to her. I felt she wasn’t being listened to, or taken seriously, so at that time, I made the decision to change her healthcare. Based on a referral, I took her to a facility that was an hour away from her home. It was a distance, but I made a day of it! We went to lunch after, we did some shopping, just so it wouldn’t seem too overwhelming for her.

Pooja: Did you find that her needs were better addressed once you switched over?

Nadine: Yes, because at this facility, everything was in one location. All of their communications were intertwined with each other, so one department would just call the other department to let them know we were coming over, so it was just easier to communicate and deal with different physicians. going into medical spaces you’re not familiar with, you’re on the lookout to see what’s not going to go right based on the color of your skin. But this was a recommendation from a friend of mine, and that’s often what I try to do with pretty much anything I need, especially in healthcare. Even though it was a recommendation, my antennas were still up. I have to say, overall, it was a very good experience.

Pooja: Now looking back on the process, how would you describe the caregiving experience for you?

Nadine: Overall, I would say it was good. I never say excellent because I always feel like I don’t know what I don’t know. If it’s pertaining to race, I think that oftentimes it’s neatly packaged and covered up. Everything with my mom, from my standpoint, I had no complaints. Even when I had to put her in a facility, that same doctors’ facility was checking up on her, and my last communication with them, one of the receptionists had called to remind us of an upcoming appointment, and I had to let her know that she had passed. Not even two minutes later, the doctor called me back to give me their condolences. Caregiving for my mom at that time was easy in the sense that I had faith in the healthcare system and the doctors who were treating her.

Pooja: Are there inherent behaviors you find that impacted your approach to caregiving?

Nadine: Yes. Inherently, we care for our elders, that’s how I grew up. My maternal grandmother lived with us, and my paternal grandmother lived with my aunt. It was always a thought that your elders lived with you. The expectation for me was that either myself or one of my siblings would take care of our mom. She didn’t want to live with any of us…she wanted to live in an assisted living facility. She had her own independence and didn’t want to burden us. In her head, she thought she would be physically okay, just aging gracefully, but she developed dementia. When the time came where I knew she could no longer live on her own, my husband said let’s bring her into our home. We did, but what I found out was that dementia brings a whole new experience to caregiving, and that in itself was difficult. I embraced caregiving based on culture, caregiving in the home, but living in the US, I see that caregiving is outsourced based on a lot of people are working, so there’s no one home to care for an elder. Or you have children, and that makes the caregiving process difficult, which is where I found myself at times.

Pooja: Did you find any support with peers or family members, or were you on your own?

Nadine: Initially, I was on my own. But one of my peers had a support group. Once I started sharing what I was going through with my mom and her dementia, I did go to this support group, and I found it extremely helpful. I was happy to share that with my siblings, so when it was their turn, it was easier for them to access.

Pooja: Did you and your siblings take turns taking care of her, was it a rotating schedule?

Nadine: When you talk about caregiving, of course, everybody is on board. But the reality is, one person takes on the majority of the burden, and in our case, it was me.

Pooja: What do you feel prepares the Black community differently from the White community in planning for their elders?

Nadine: The white community, from what I see, they save or have some sort of financing that allows them to place their elders in a facility, and in nice facilities. For POC, we haven’t been afforded over the years the ability to save or participate in those financial gains that would allow our elders to go into a facility where they can be cared for. So instead, they live at home. A lot of generations, it was always thought that you lived at home primarily because you didn’t have the means to do anything else. Even if you did have the means, you had your family at home, because for the Black community at large, institutional racism has prohibited the financial wealth, whether it’s in real estate, banking, education, healthcare – those things all have preventative measures that we have seen from generation to generation that were prohibitive. For my generation moving forward, we are trying to play catchup so we can try to lessen the wealth gap and potentially take advantage of it.

Pooja: You work in real estate – what differences do you find in the community with generational living?

Nadine: Just last week, I had a whole family come – the couple, their kids, and their parents/in-laws. They needed the home to suit the needs of the entire family. The young man was taking the responsibility of housing his family, and I would assume he has the resources to do that. That’s something in the Black community – resources are limited! It’s proven with the type of loans you see. When you’re looking for a home, you need a pre-approval. The first question is – what type of mortgage are you getting? Often, it’s not a conventional loan, because for a conventional loan, you need to put 20% down. To put 20% down, you need to have a sizeable saving. How do you get a sizeable saving? With a well-paying job. How do you get a well-paying job? In most cases, with a good education. How do you get a good education, you need to have money to pay for that institution to give you a good education. In my opinion, there are a lot of things that institutional racism has continuously held back POC. Eventually, it creeps up into healthcare.

Pooja: Can you speak to the financial implications you had to consider?

Nadine: I think the finances are one of the most heartbreaking part of anyone going through aging and not prepared for. My mom was a single mom, and she managed to get her degree while we were in school. She did well for herself – she had property, a pension, a saving. When she got sick, what she didn’t have was long-term care insurance. When you don’t have that insurance, you basically have to give up everything. She had to sell her home. We had to start preparing for Medicaid, and Medicaid doesn’t want you to have anything. You can’t leave anything to your children. Within that system, you have the haves and the have nots, and a lot POC are in the have nots. We found ourselves in the middle – I was lucky enough to have a woman – I call her the real estate lady for assisted living, who was able to help us narrow down our options based on finances, location, insurance…

Pooja: When you reflect, is there information or advice you wish you had known prior to the journey?

Nadine: Yes. Caregiver was never talked about. The more you prepare for anything, the better. It impacts our young people – I think if they grow up with the understanding that you have relatives that age and things may start to look different, they will have a better understanding how to interact, how to talk about, and not internalizing these things.

Thank you for tuning into this week’s Q&A with our very first guest! Check out the full episode on Spotify or Amazon Music! After a lifetime of racial and health inequities, Black seniors are at risk of spending their last years with declining health, little income, and virtually no savings. Understanding lived experiences can help identify systemic barriers to access, reflect on inherent prejudices and biases, improve cultural competency, and develop targeted solutions to better health outcomes for all.

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At Caregiver Consulting & Healthy Solutions, we are dedicated to helping you navigate aging together. This blog page is for everyone: whether you are an older adult looking to age in place, a caregiver seeking support and guidance, a young or middle-aged adult planning for the future, or simply someone interested in learning more about the aging process. I hope you’ll join me on this journey. Let’s navigate aging together.