I’ve come to discover that a visit to the doctor with an Alzheimer’s patient is a mini-documentary in itself.  I’ve only been to the emergency room with my Dad one time. The bulk of these responsibilities have been with my mom and siblings. It does feel weird to say I was glad I was able to be there for Dad that weekend. It meant not completing interviews at a junket, but he had fallen and hit his head. The urgency in my Mom’s voice was enough of a motivator.

The entire time we were together, I found moments to hold his hand. I modulated my voice to be the sound of reassurance as nurses checked his vitals and, especially when he had a CT scan. That machine was loud and scary enough for us both. In between was a round-robin of the same questions in Spanish, “Where’s Mom? and “How far are we from home?” He rarely if ever speaks to me in English. I loved witnessing his gallantry with his sincere “Thank you’s” as we went from urgent care to the hospital. Funny, he never asked, “Who are you?” I consider that a small blessing and miracle.

In the end, Dad was pronounced healthy and fine. No damage, although the doctor did find evidence of a previous fall that had healed.

A year and a half later, Dad’s visits of late have been a little more challenging. After a struggling with pneumonia in early January of this year, the effects have taken on the dynamics of a luge run during the Olympics. As of late March:

He’s still fighting pneumonia.

He’s having trouble walking.

He may or may not have new spots on his lungs.

His pancreas is swollen.

He is having physical therapy, but he still reluctant to stand tall because it hurts.

He is silent for long stretches.

He sleeps a lot more.

He is a bit more irascible.

He needs a haircut.

He doesn’t want to eat, choosing instead to spit his food out.

He struggles to swallow.

He’s lost seven pounds.

He weighs around 122 lbs.

*He thinks he’s 32 years of age.

*That means my mom is a cougar!

It is comforting to know we aren’t the only family trying to balance all of the emotions and realities of having a parent with Alzheimer’s or dementia. Maintaining a sense of normalcy is our priority. Yes, he lacks control of his bodily functions. He is still Dad in whatever state or phase of the disease he endures. This isn’t the time to mourn him yet.

However, that doesn’t mean frustration is non-existent. I bristle every time I hear my Mom or sibling raise their voice to him. I know what it masks and it isn’t denial. We are adults with ailing parents. The narrative that awaits us all is already scripted. As my mother said to me recently, “I just want to make sure he’s comfortable.”

Oh, and don’t pat Dad’s tummy. He will slap your hand away.

That’s all we can do. That’s all any of us can do. Now, what can you do if you find yourself in a similar situation? Unlike previous generations, we have so many more resources to understand Alzheimer’s and its effects. It is important to be informed and proactive in keeping our loved ones healthy and safe.

According to the Alzheimer’s Association’s website, Latinos are “1.5 more times more likely to develop Alzheimer’s disease than whites. Now, we may be living longer, but too many of us are still succumbing to health risks like diabetes, high blood pressure, and high cholesterol, which may all be triggers for Alzheimer’s and stroke-related dementia.

Let that sink in for a moment.

Part of the Latino culture is the propensity to say, “No pasa nada” when it comes to “serious” matters as personal issues like our health. Is it a sense of shame of having things be imperfect in our family? Is it the fear of appearing weak? Is it ordinary pride or vanity? Maybe it is all the above.

My father, who was diagnosed with type 2 diabetes years before developing Alzheimer’s, owes his extended lifespan because of my mother’s tireless efforts. The woman mobilized into action like Diana Prince and she made a point to include my siblings and me in the process. Mom was prepared in terms of the many questions she asked of his doctors, My younger brother took over the research. My older sister discussed support groups. My younger sister became a caregiver, too. As we now know,  two or more lift, feed, carry, wheel, and, fight better than one.

Mom changed the way he ate, removing the foods that were the cause of his diabetes and her high blood pressure. The result? He is now 93 and it wasn’t until this year that the effects of some fantastic medications that slowed down Alzheimer’s to give him 14 more years of quality life. My family did its part to understand this disease, benefiting him and all of us. We have no regrets here. None. 

Latinos remain the fasting growing population in this country. Yet, we may see as many as 1.3 million of our people afflicted by Alzheimer’s by 2050. That’s too many. I encourage you all to study, learn, pay attention to all of the signs that could indicate the illnesses that can lead to being diagnosed with Alzheimer’s or enduring stroke-related dementia. Be part of the fight. Be part of finding the cure. Remember everything you can for them. It is what keeps our loved ones on this mortal space.

I made a promise to my Dad to remember it all, his journey and ours, for him. And to provide others with a view from within this difficult space. Until a cure is found, more families will be affected by its ravaging effects. No one should feel alone or without recourse! Resources do exist to help and answer the myriad of questions as to how to better control this disease. Be informed!

I have written before that Dad was the keeper of our family lore. To be able to write down these chapters is an honor and privilege. And when the time is right, I will read them to him. I think he’ll approve.

#rememberme @alzgla @alzassociation

IG: @i_am_jorge_carreon

http://www.iamjorgecarreon.com

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