My Greatest Fear as a Dementia Caregiver

Whenever I hear the latest news about Alzheimer's or learn a new symptom of dementia, I start to feel this nagging fear. It started small but has slowly grown over my years as a caregiver.

One of my greatest fears as a caregiver is getting the disease myself.

Eating, sleeping, and breathing dementia

When my mom was diagnosed with Alzheimer’s dementia, I did the only thing I knew to do: I threw myself into research.

A friend let me borrow books on palliative and end-of-life care, and I scoured the library and internet for every resource about the disease and best practices for caregiving. Along the way, I joined advocacy efforts and followed developing research on promising drugs and treatments.

I participated in conferences, support groups, and educational seminars. I accompanied my mom to dementia-friendly activities and music groups with other caregivers and their loved ones with the disease.

I also attended every doctor's appointment with my mom. We met with primary care physicians, neurologists, geriatricians, all types of nurses, cardiologists, and Alzheimer's specialists. I took copious notes and tried to absorb all the information I could to help my mom.

I was eating, breathing, and sleeping dementia. And sure, I learned a lot. Studying dementia didn’t make Mom’s diagnosis easier, but it made it a little easier for me to help her as a caregiver.

Caregivers are immersed in the dementia world

Something I didn’t expect is that I would be constantly thinking about dementia. Dementia caregivers are so immersed in the disease that it starts to consume our thoughts and minds. I regularly dreamed about dementia and caring for my mom.

I would even start to wonder if I was showing signs of the disease. Every time I couldn't remember a name or word (something that happens to everyone once in a while), I would recall that difficulty finding words is an early symptom of dementia.

At first, I pushed the fears away. I am still young and healthy, I would reason with myself, though I had definitely neglected my own health since becoming a full-time caregiver. But the fear slowly grew bigger over the years.

Fears of inheriting dementia

I found I was thinking about everyday life decisions through the dementia lens. Would this food I was eating help protect me against dementia? Would this activity strengthen my brain against dementia? Was I exercising enough to protect myself from Alzheimer’s?

Some families get tested to see if they have specific genetic markers that are correlated with a higher risk for developing Alzheimer’s disease. That seems reasonable to me because my mother, her sister, and her mother all had signs and/or diagnoses of dementia.

Here’s the kicker: I’m adopted! I am not even biologically related to my mom, and it would be impossible for me to inherit this gene from her. Yet, I still have a fear of somehow getting the disease by association. (Just to be clear, this is not something that can happen.) That is how powerful this fear is among some caregivers.

How to fight the fear

I share these things because I want you to know that if you have these same feelings, you are not alone.

Yet at the same time, we do not have to live our lives paralyzed by fear. While I'm still immersed in the dementia world while caring for my mom, I am learning healthy ways to care for myself along the way, and you can, too.

Find some balance by setting boundaries on how much you are taking in information about the disease. Let go of any guilt that you should be keeping up with all the newest and latest dementia research. Live your own life and do something fun that has nothing to do with dementia.

Therapy, meditation, exercise, and a healthy lifestyle can all help too. Take the long view and remember that you are a better caregiver when you take care of yourself too.

Managing this fear is not uncommon for Alzheimer's caregivers. Share your fears and how you cope in the forums, here.