My mother’s brain: love in the times of dementia

My mother, Francisca, April 2009.

The story

Late in 2008, while I took a class at our health club, my husband spent time with my mother at the pool. After class, I found them sitting together by the water. They looked morose. “What happened?” I asked. My husband explained that he had placed Mom “under house arrest” because she was disruptive — kissing the lifeguards, singing loudly, and chasing a man through the water.

My mother has Alzheimer’s Dementia. As any neurologist will tell you, it’s the most common form of dementia, although there are others. Physiologically, this means my mother’s brain is being invaded by amyloid plaques and neurofibrillary tangles. This is what I imagine when I read those words: gritty, yellow buildup in the valleys of her brain and her gray matter marked by purple clumps of twisted wiring. These tangles are ensnaring her common sense, her judgment, and even life skills such as brushing her teeth. They are also destroying seminal memories. Her brothers’ faces? Gone. Their names? Gone. Even what she has for dinner is erased by the time she wakes up the following morning.

I’m not a physician. Nor a nurse. My knowledge of biology and physiology is limited to what I learned in college when I briefly considered becoming a doctor and toured all the Texas medical schools. What I am is a writer and photographer who, as fate would have it, watched my husband’s grandmother develop Alzheimer’s in the early ‘90s, then my mother-in-law develop it. In 2007, doctors diagnosed my own mother with it. Lucky me: my husband and I drew the Alzheimer’s trifecta.

The statistics

My mother is a Latina. Therefore, I thought she was more prone to develop diabetes, heart disease, or cancer – all of which have claimed other family members. Not that I assumed we’d dodged the dementia bullet; but in the back of my mind, I figured that our ethnic heritage predisposed us to other diseases first.

That Latinos are at high risk for Alzheimer’s is something scientists have known for years now. However, the latest report from the Alzheimer’s Association last March indicated that Hispanics have 1.5 times the risk of their white counterparts for developing the disease, and that African-Americans have twice the risk. So, sadly, my family is not alone.

Consider these other statistics from the Alzheimer’s Association’s 2010 report:

•    5.3 million Americans have Alzheimer’s
•    There is a new case of Alzheimer’s every 70 seconds.
•    Almost 11 million Americans provide unpaid care for someone with Alzheimer’s or another kind of dementia.

Since my mother’s diagnosis I’ve had a range of emotions that run the gamut from being really pissed off, being in denial, and just lately, being terribly grief-stricken. It’s not so much the “Why me?” sort of rage and grief I’m experiencing; it’s more about  “I can’t believe we’re going through this again!” After all, I would have never thought in my lifetime I’d see three women in my family develop Alzheimer’s.

But, there is also this: I’ve learned that whatever life throws at me, I must meet head on. Not only that, I must try to look at every obstacle as an opportunity – for growth, for learning, for helping others. This is especially true now that I’m at mid-life. And whatever life wisdom I’ve gleaned so far, I intend to use to allow my mother’s dementia bring out the best in me – despite the tears and anger. My hope is that I will develop my empathy, my compassion – more of my soul’s potential, as it were. My hope is that as the mother I knew most of my life disappears into Alzheimer’s black holes, the love our family has for her will help us through the journey that lies ahead.

The invitation

So, I invite all of you to follow my family’s journey as we face the increasingly difficult challenges of caring for our mother. My sister is her primary caregiver in El Paso. I travel there to give her rest, occasionally bringing Mom home with me for a week or so; my brother, who lives near me, steps in to help, too. Together, we are patching together a care plan and adjusting it as my mother’s brain slips into further decline.

I don’t want to feel so alone in this journey.  And I hope that in some small measure this blog will help others traveling down the same path also not feel so alone.

The disclaimers

A couple of caveats: I am not a healthcare provider in any way and cannot and will not dispense medical advice. Any pharmaceutical ads that may appear on this blog are none of my doing; they are simply a function of my inability to pay to keep them off. I am not a lawyer or a medical social worker, so I cannot provide legal advice. I am not a fundraiser or a politician, so I won’t be using this forum to advocate for fundraising and research. There are others who do this better than I.

Though I consider myself a spiritual being, this disease cuts a wide swatch across all racial, ethnic, and religious groups, so I ask that we respect one another’s point of views.

A few words about me

I spent almost 20 years working in daily newspapers as a photographer and writer. I covered a lot in those two decades — gang shootings, museum openings, Capitol Hill hearings, United Nations conferences, rock concerts, an autopsy once — you name it, I’ve probably seen it. Some assignments were difficult and exhausting; some seemed never-ending, and made me question my career choice. However, caring for my mom — half of it long-distance — gives me an entirely new perspective on the meaning of “difficult and exhausting.”

Between caregiving tours of duty, I take on writing, photography and video production assignments. I am also working on a novel (isn’t everyone?) that has nothing to do with Alzheimer’s dementia, but a lot to do with cultural identity.

If you would like to see some of my other work, please visit http://www.beatrizterrazas.com. You can also email me at mothersbrain@beatrizterrazas.com