Tracy Reyes, father living with Alzheimer’sShare Your Story
Alzheimer’s Disease officially came into my life July 4, 2008 when my dad was first diagnosed, but in retrospect the signs were there. His personality was changing. He was losing his ability to do every day things. He was wandering, nowhere to be found until the hospital would call saying that they had found him, assaulted and left for dead, or we would see the all too familiar lights of the ambulance dropping him off. My family and I had no idea how devastating this disease would become. We all assumed he would just forget things but it was so much more then that. No one told us that it was a deterioration of the brain. No one could prepare us for the hallucinations, the aggression, the hoarding, and the loss of the person who we once knew as our father. I guess no one can really prepare for that, but what we can do is create awareness. Creating awareness is the first step in finding a cure. Let’s face it, its not just grandma and grandpa with Alzheimer’s, but its mom and dad. And where does that put us? We suddenly find ourselves as primary caregivers for our Alzheimer ridden parent. In my short 24 years, this has been by the far the most difficult thing I have ever gone through. Never mind my three jobs as a full time college student. My life has been turned upside down. Now I find myself checking out more skilled nursing facilities for my dad, then local bars for myself. Don’t talk to me about the latest gossip; I need to talk to my dad’s caregiver about the change in his behavior at adult daycare this week. I’m not spending hours in front of the mirror getting ready; I’m making sure the mirrors are covered so my dad doesn’t start fighting with his reflection. When I leave my house I’m not making sure I haven’t forgotten my phone, I’m making sure I didn’t forget to remove the oven knobs from the stove and that all sharp objects are hidden. I’m not staying up all night facebooking; I’m staying up all night trying to convince my dad that its nighttime and he needs to go to sleep. My family and I have come to terms that it will only get worse, yet can’t imagine how much worse. But through awareness creating programs we are able to connect with others in similar situations. We have found others who truly understand and cannot only sympathize but empathize with us. They’re people to whom we can vent our frustrations to, cry to when our parents stop recognizing us, yell with when we’ve had enough and help us gather the pieces of ourselves when we’ve fallen apart. I have gotten to a point where I can slowly and comfortably share with others about my father’s disease. I’ve come to the realization that awareness can start with me, and here I go.
Having to tell my dad that the person he is fighting with in the mirror is not someone trying to hurt him but it’s ACTUALLY him.
Having to tell my dad that no one is trying to steal his food, it’s just him and me.
Having to double bolt the door and sneak out before my dad asks me “why don’t I have keys? Why can’t I go out too?”
Having to drive to work with the unsettling feeling of, “Did I lock the door properly? Did I remove all the knobs from the stove after I made breakfast? Did I hide the knives? Did I close all the bedroom doors? Did I cover all the mirrors”?
Having to run on very little sleep because my dad was up all the whole night thinking it was day.
Having to explain to my dad that no, he cannot go to work because he stopped working over a year ago. Having to listen to my dad try to kick me out of the house because he doesn’t recognize me.
Feeling frustrated that my friends just don’t get it.
Having to try to understand that when my dad is asking for “cheek, cheek, cheek” he actually means, “Cup”
Having to fight “the system” to try to get adequate and safe care for my dad.
Having to explain to my dad that no, we’re not in Mexico and his mother passed away 12 years ago and she won’t be coming to pick him up.
Having to be the best support system for my mom and reassure her that everything will be okay even when I don’t feel like it will.
Having the strength to go through another day, knowing that my dad’s condition will only get worse