My Mother Has Dementia. Here’s What I’ve Learned From Caring For Her For 8 Years.

This interview originally appeared in Refinery29. Read the original there.

Care workers are the invisible workers on the frontlines of the coronavirus crisis. They are cleaners, nannies, and caregivers. Their work is critical and yet they are unseen, underpaid, and undervalued. Through Caring Through Coronavirus — our partnership with the National Domestic Workers Alliance, the nation’s leading organization for the respect and dignity of domestic workers — we are looking at life in the coronavirus pandemic for real domestic workers and caregivers today. Ai-jen Poo, the director of the Alliance, will be interviewing the workers.

Tell us a bit about yourself.
“My name is Aisha Adkins. I live in Dunwoody, GA, just northeast of Atlanta, with my parents. I was 27 when I left my first full-time job to care for my mother when she was diagnosed with frontotemporal dementia in 2013. I am now 35 and pursuing my Master’s of Public Administration at Georgia State University.”

What should people know about being a millennial caregiver?
“So many millennials are still recovering from the recession of 2008 and have already struggled with finding a job, establishing credit, or buying a home. This is especially true for many folx in the African-American community. Personally, I graduated at the height of the recession and stepped into a job market that was crumbling. I turned to freelance, temp, and contract work to try to get by, continuing to live with my parents. Many millennials rely on gig-economy jobs like food delivery or rideshare services. Our baby boomer parents are getting older and many of them are getting sick. So for many millennials, we’ve found ourselves taking on caregiver responsibilities sooner than we expected, on the heels of job uncertainty. I, for one, did not expect to be dealing with all of this at such a young age.

“I want millennial caregivers to know that they’re not alone. There are more of us out here, and it’s important to seek out support and community because even though we are young and very capable, we still have our own care and support needs that are difficult for our peers to understand, especially if they haven’t been caregivers.”

How did you find yourself in the role of caregiver?
“My mother was diagnosed with dementia, which means she needs help at home. She needs help with personal care, she can become confused, and she is at risk of falling. My father still worked for a while after she was first diagnosed because we needed to make sure that my mom had access to the healthcare and insurance that she needs. Since I was already living with my parents — like so many millennials! — it made sense that I would step into the role of caregiver.

“To be honest, at the time I didn’t realize it would be a long-term situation. I thought maybe it would be for a couple of months. But that was almost eight years ago.”

What is hardest about being a thirtysomething caregiver?
“Probably that it’s hard to relate to your peers when they don’t understand what you’re going through. Frankly, simple things like grocery shopping can be mentally and physically overwhelming. I know more people are feeling that too, especially during the pandemic.

“I don’t always sleep through the night. If my mother is going through an episode where she doesn’t recognize myself or my father or is fearful of her surroundings, it could take several hours to settle her down. When I do fall asleep, I often have anxiety dreams where my mother needs me but I can’t reach her in time. I’ve become a light sleeper, waking up at every little bump. There have been instances when I’ve woken up in the middle of the night, gasping for breath. The following day, I am absolutely exhausted.

“Until recently, I did not have a driver’s license. I relied exclusively on public transportation, rideshares, and my feet to get to the grocery store and back — with groceries in hand.

“On a broader level, I feel the impact as a Black woman. Women, especially women of color — Black and brown women — are more likely to provide care for aging parents while also caring for children of their own, a part of the ‘sandwich generation.’ Black and brown women also earn significantly less than their white counterparts. The racial and gender pay gaps can make activities many take for granted — like having a job that allows them to work from home — really hard. I am grateful to be at home with my parents right now, but that is only because of the Black and brown folx on the frontlines who deliver our groceries and provide other vital services so that my high-risk family can stay safe.

“Some of my friends are caregiving now — not full-time, but offering respite care, such as for a parent who has been caregiving for a grandparent or adult sibling with special needs — and they have reached out to me and said, ‘Wow, I had no idea what you were going through.’ I think what surprises people is the emotional and mental impact caregiving can have on you, and that’s hard to understand until you’ve experienced it. When financial and social burdens are added to the caregiving experience, the barriers to things like prescription medications, paid care assistance, or even healthy, balanced meals, it can make the caregiving experience even more difficult to relate to.”

How do you believe the coronavirus has affected caregiving?
“Social isolation is not new to me. Heading out for a spontaneous weekend trip just isn’t something I’m able to do because of my responsibilities with my mom. But what has been an adjustment — and I know I’m not alone in this — is restricting my contact with others to protect my parents from coronavirus. Of course, as a woman of color whose parents are high-risk, I worry about what happens if my parents get the coronavirus or have some other sickness and they have to go to the hospital. I am sure doctors, nurses, and hospital staff are doing their best, but if resources get low, how do I ensure my parents will receive the best possible care? Black Americans are overrepresented among COVID-19 diagnoses and deaths. As a caregiver, I’m always thinking of the wellbeing of the person I care for first, and now I’m extra careful about any risk I’m exposing my parents to, but there is only so much one person can do.

“I really hope we don’t forget the lessons that have been learned through the pandemic, about taking care of one another and thinking about the way your actions affect the wellbeing of others. And, of course, staying connected to each other, checking in on your neighbours, friends, and family members. We all need each other in a truly interconnected way, and that’s the lesson I hope people take away from this.”

What do you think other millennial caregivers should know?
“You’re not alone! There are organizations working tirelessly to create better and more equitable systems and safety nets for family caregivers, and support to help you navigate through this process. Reach out. I’ve been involved with Caring Across Generations, a movement that is seeking change for caregivers, and it makes me feel empowered to be able to add my voice to the conversation and help advocate for real solutions.

“Finally, take care of yourself physically, emotionally, and mentally. Don’t be afraid to tell people what you need, whether it is your employer, your family and friends, or your elected officials. People can’t help if they don’t know what you need — let them help! Be really mindful of your mental health; it’s something that can be neglected when you are providing care. You are human, you were human before you were a caregiver, and you are still human now.”

If you would like to support domestic workers, you can donate to the Coronavirus Care Fund, which is providing domestic workers who apply with $400 in emergency assistance.