Her Mother Was Diagnosed With Dementia. Now, One Woman is Speaking Out About the Complexities of Caretaking.

According to a 2023 Statista study on the leading U.S. states by number of Alzheimer/dementia caregivers published by Jenny Yang, in 2022, there were nearly 11.5 million Alzheimer and dementia caregivers in the United States. Ohio ranked no. 5 among the highest states with approximately 493,000 caregivers of individuals with Alzheimer’s or dementia. Valerie Stevenson is one of them. For the past year, the Warren, OH, resident has been the primary caregiver for her 86-year-old mother after she was diagnosed with dementia.

“My only brother passed away in 2019 and I have no other siblings to help care for her,” shares Stevenson.

Stevenson’s predicament is a familiar one for Black women who, already leading more than half of Black households (52.5%), also disproportionately represent caregivers throughout the country. The realities of that role can have enormous impacts on one’s mental and physical health, as taking care of one’s own needs can easily fall by the wayside when another person becomes your primary responsibility. The financial burden can also be devastating for Black women who still earn just 67 cents per every dollar paid to white men. According to the Center for Workforce Inclusion’s 2021 report, “The Caregiving Crisis,” those caring for loved ones with dementia spend an average of $62,000 a year in out-of-pocket expenses, which is 81 percent higher than the average spending on patients without dementia.”

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The report goes on to state:

“The impact on wealth is most devastating for Black families. The average Black person who dies with dementia will deplete all of their savings and have no assets to pass on. In contrast, the average white person in America has ten times the wealth of the average Black person. While they also take a hit to their assets, critical possessions like homes remain to be inherited.”

Still, there are proverbial blessings in disguise that come with taking on the role of caregiver.

“The most rewarding aspect of becoming a caregiver is being able to be in a position to be there physically,” says Stevenson, a mother of two adult children herself. “To see [my mom] have a ‘good day’ based on a decision that I made as her caregiver is very rewarding.”

Here, Stevenson shares her personal caregiving journey with Black Love.

What has been most challenging about becoming a caregiver? 

The most challenging aspect about becoming a caregiver is not only accepting the fact that I am a caregiver, but that I am a caregiver to my mother, a lady whom I once looked to for answers, who was so classy and eloquent, and has looked out for me for so long. Watching her decline and fight dementia is most challenging. For my mother, role reversal is not easy. My making decisions for her is very difficult for her which, in essence, makes things challenging for me. If I say it’s blue, then she says black..just because.  In a more practical sense, having to think for two people can become very mentally and physically challenging.  Making sure I have two cell phones (because she’s going to ask me where hers is), opening two car doors, checking for two purses, attempting healthy meals for two, and discouraging unhealthy meals for two. After a long day at work, the work continues when I get home.

What have you found to be rewarding about becoming a caregiver?

The most rewarding aspect of becoming a caregiver is being able to be in a position to be there physically. To be able to be flexible and available to provide the best care for my mother and not have to rely on others based on my time constraints. Making decisions based on the fact that I see and interact with her daily. I see what she responds to positively. So to see her have a “good day” based on a decision that I made as her caregiver is very rewarding. 

What adjustments have you had to make in order to provide care? 

I have made drastic changes to my life to care for my mother. I renovated her home and moved in with her, considering being in familiar surroundings with a consistent routine is crucial to her mental well-being. The need for healthy meals and monitoring her daily activities and choices is critical to keep her safe. I have adjusted my social life, making her my number one priority when deciding what my “free” time will look like.

What are you learning about yourself in this season?

This season of my life is teaching me where I can be better regarding patience, understanding, and critical thinking. I am learning how to think differently when it comes to decision-making; how to incorporate the outcome and not just the immediate choice.  Prayer is a very powerful tool, and I am learning even more that my faith is what carries me through emotionally challenging times and to pray and not try to control every situation but believe that God is in control. I am learning in real time that as Black women, we so easily tend to “muscle” our way through hard times. But it is in those times that we must do our due diligence in tending to our mental health and lean on our support system, whatever that may be. It truly does help to not seclude ourselves, mentally or physically.

What are you learning about the person you’re caring for?

Spending so much more time with mom leads to more conversation. I am learning a lot about her past, which explains a lot of the decisions she made as a young Black woman in the 1960s. I am learning what makes her sad and what makes her happy, be it in my control or out of my control. I am definitely learning more about the disease itself and its effects on the brain. I am also learning to discern what is dementia and what is my mom being the diva that she is.

Do you feel the need to be a caregiver signals any larger socio-economic issues about our society and how we treat the elderly or those with illness?

Yes, elderly adults, as well as those with illnesses sometimes lose sound decision-making ability and often there is no one to help them. They don’t know how to get help, which leads to poor health, poor living conditions, and poor quality of life due to situations that could have been avoided. A sad truth is that social status plays a direct part in the quality of life that is offered to elderly adults and even more so Black elderly adults. It seems as though when we get to a certain age, we are the “forgotten people” if we can’t afford to be remembered.

Have you been able to find support in your caregiving?

For the sake of transparency, I am relatively early on in this journey and am still feeling like I don’t need help. My mom is not that bad, I’ll say to myself. Tons of advertisements and agencies offer support in many areas. For me, that part is overwhelming, and I don’t know where to start.

What do you wish people understood more about being a caregiver?

Being a caregiver is life-changing and I wish people understood that not being as accessible is not a reflection of the relationship. I wish that instead of saying “I called you, but you didn’t call me back,” people would recognize that I am a caretaker. My social hours have changed. My phone time has decreased. Sometimes at the end of the day, what I look forward to is solitude to pray, read, or catch a movie and I usually fall asleep during all three. I don’t want to feel guilty for not always being available.