My Personal Journey with Dementia and Alzheimer’s Disease, Inspired by Seth Rogen

I think I became an adult at the age of six. That was when my grandfather who had suffered from strokes was diagnosed with dementia and started forgetting who I was. It became normal to me, it was almost as if my grandpa was “Forgetful Jones” from my favorite show Sesame Street. When my grandmother needed to go to the grocery store, it was I who stayed home to care for my grandfather because we didn’t have anyone to stay with him and he felt comfortable with me. In fact, she would tell him that he was babysitting me just so he didn’t feel incapable or ill. I was his “Consentida” the apple of his eye, the person who made him less nervous when he went to doctors appointments, even though it was me who freaked out then and still get nervous when near physicians. I guess you can say it’s “white coat syndrome” or the fear that I still feel as that little girl who always got bad news about her favorite person on earth, her grandpa.

My grandfather, brother and I.

My grandfather, brother and I.

 

 

When I got a little older his dementia gradually started getting worse, and I can still recall having to chase him down the street when he’d travel to Howard, the neighbor’s house to have him fix the lock on his shed when he’d lock himself out. When my grandpa, the happiest guy on earth would yell at poor Howard I would apologize, but Howard knew that this wasn’t him…it was the disease talking. It got to the point that my grandpa would become wheelchair bound, was taken off by his blood thinning medication by a new doctor and suffered massive strokes. Ultimately he passed away on the worst day I’ve ever experienced, September 26th, 1995. It was that day I found a new way of dealing with stress, by holding my breath and ultimately panicking. From that day on I have lived in fear of dementia. I prayed my grandmother would never get the disease, she is the strongest person behind my mom I have ever met. The biggest cheerleader I’ve ever had and the person who would stick up for me when I least deserved it. Unfortunately my wish was not granted.

A little over 1o years ago I went to visit my grandmother on my lunch break like I often did. When I got there she wasn’t home. I didn’t think anything was out of the ordinary, she often went out to lunch with friends or for walks with the neighbor. As I was getting ready to leave, I could see this elderly woman limping down the street. It didn’t look anything like her, she wasn’t wearing glasses. My grandma ALWAYS wore glasses. As I got closer, I couldn’t believe my eyes, it was in fact my grandmother. I had to go back to work, so I called my brother and mom…they picked her up, took her to the doctor and found out her leg was broken. She may have had a minor stroke, and the forgetfulness we had tried to ignore was the beginning stages of dementia. For many years it appeared my grandma’s dementia would not get worse. Granted she repeated herself quite a bit, but she still knew who we were. For that, I was thankful.

In mid-2010 she caught a really bad cold, her blood pressure went drastically low and was given steroids. Little did we know the steroids would cause permanent damage, her dementia would turn into Alzheimer’s and the lady who repeated often, forgot who we were. She started hallucinating, and for two and a half years my brother, mom and I did not get a full night’s sleep because she would get up at all hours of the night- either to supposedly catch a nonexistent bus, find my deceased grandfather, her late mother or get back to her family in Mexico.

I have a newfound respect for pharmaceuticals. My grandmother rarely hallucinates, has been able to sleep for the last year and a half; we have gotten rest and the part of her brain which told her she needed to escape has calmed down. She’s alive, but not well. There are times when she refuses to eat, refuses to take her medication, is combative and incontinent. In fact, it happens more often than not. But I couldn’t love her more. There is nothing that brings me greater joy than when she knows who I am. Or even when she cusses me out, but when she does, calls me by my name. It allows me to believe that she’s still there, she hasn’t left and there is still hope. We must always have hope.

 

 

My Grandma and our dog Francesca on Christmas Eve 2013.

My Grandma and our dog Francesca on Christmas Eve 2013.

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