You expect your parents to age, but the reality of it is way harder than expected.
I felt like the rug was pulled out from under me, and I had no time to prepare or fully process what was happening. The independent lives my sister and I lived shifted in ways we never saw coming. But we both knew it was time to step up and care for our mom.
November is recognized as National Family Caregivers Month, a time to reflect on all the families who dedicate around-the-clock care for their loved ones who are facing a challenging illness.
It is a caregiving club I did not anticipate becoming a member of in the last year and a half.
During my last legislative session as a state representative in 2021, I was grappling with serious issues at the Texas Capitol. I had not been able to travel to El Paso to visit my parents due to the COVID pandemic shutdown, so I would Zoom with them every day to check in. That’s when I started noticing an extreme change in my mom’s demeanor. She was agitated and was not sleeping — I assumed from the stress of the pandemic.
But by year’s end, our contact was minimal because our relationship was strained as a result of her agitation. I shared my concerns with my sister, a physician, who eventually witnessed our mom’s cognitive decline and took the initiative to get her medically evaluated.
On July 23, 2023, my mom, Rosa Minjarez, was officially diagnosed with Lewy Body Dementia (LBD). LBD is a neurodegenerative disease that is caused by abnormal protein deposits in the brain.
It affects about 1.4 million Americans and is the second most progressive form of dementia after Alzheimer’s disease. It causes severe cognitive decline, hallucinations, paranoia and the loss of independent living. There is no cure, and life expectancy ranges from five to eight years after diagnosis.
As I read the medical report, I was seething and felt completely hopeless. I couldn’t comprehend how and why this was happening to Mom. We have absolutely no control over this disease, and it is frustrating not knowing how much time we have left with her. When will she no longer recognize us? When will she not be able to communicate with us?
Placing Mom in a memory care unit was never an option for us. She loves her home, and Dad cannot live without her. My sister has taken the lead of wrangling with health insurance companies, physicians and professional caregivers. She and I have accumulated lots of frequent flier miles constantly traveling back and forth to El Paso.
We also have peace of mind knowing we have aunts and a cousin who are nearby, rotating in daily shifts to get Mom and Dad to their medical appointments and help them with their daily routines.
I recognize how fortunate we are to have family members maneuvering this challenging time with us.
They are why we are able to keep Mom out of assisted living, a viable option for some in our position but one we have worked to avoid.
As a family, we have good days with Mom, and we have had bad days. We have danced with her to her favorite mariachi music, we have held and comforted her as she cried after experiencing hallucinations, and we have laughed with her every time we let her win her favorite games. We have also taken the brunt of her anger when she is overcome with paranoia. This journey in itself was extremely challenging for us and our dad, and the time came where we acknowledged we needed to share what was going on with other family members. We could no longer maneuver on our own, and we needed family help.
We have also collectively mourned the loss of a vibrant, strong, and independent woman. We have shared frustrations and many tears. We have also grown closer in our shared experience.
For those of you who find yourselves in a family caregiving situation, you are not alone. In fact, 24% of adults aged 45 to 64 are caregivers, the Centers for Disease Control and Prevention estimated.
Since we never experienced a family member with dementia, we extensively researched various websites for information and read The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss by Nancy L. Mace and Peter V. Rabins.
My sister and I are blessed to have one other to lean on. We took things a day at a time. We made mistakes. But we have been able to journey through this together. I was responsible for drawing up both durable and medical power of attorney forms over Mom so we can make the proper medical and financial decisions on her behalf.
As a physician, my sister handles Mom’s medical appointments and oversees her medications. I can’t help but worry about those with dementia who have no family support — or even those instances where family refuses to get involved or cannot help for various reasons.
It can be emotionally draining and at times unbearable. We must be cognizant to find ways to take care of ourselves physically, mentally and spiritually. We have sought counseling to help with stress and get specific guidance on caring for Mom.
I seek solace in praying the rosary daily, and exercising first thing in the morning. And when I feel overwhelmed, I just allow myself the time to cry and talk out my emotions with my husband and friends. You have to allow yourself some grace and know that loving your family member and making them feel comforted is enough.
And we must value and appreciate the roles other family members have undertaken to help us.
This November, I ask you to join us in honoring family caregivers and the unyielding sacrifices they make for their loved ones.
