Fundraising with Christy Bowen

Christy Bowen

For all of her life, my grandmother has been known for sending cards, without fail, to EVERYONE. Meet her once, she will remember you forever -- your name and how to spell it and especially your birthday. She would send the most beautiful, heartfelt cards timed out perfectly with the post office to be delivered right on time. She's fading now, though still loving and wonderful, it is hard for her to even sign her name.

My grandmother was 69 when she started showing symptoms of Alzheimer's disease. She began having headaches and complained of pain at the base of her skull followed by short term memory loss. We associated the forgetfulness with the headaches. The neurologist performed a CT scan and MRI which detected fluid on the mastoid bone. We were referred to an Ear, Nose & Throat doctor who assumed her sinuses were causing the headaches, so he performed surgery and put tubes in her ears to release the pressure. The headaches continued. After 8 years of frustrating doctor appointments, tests and misdiagnosis, my grandmother was diagnosed with Alzheimer's on August 20, 2013. The diagnosis was not totally unexpected, but one we weren't completely prepared to handle.

Alzheimer's runs in my family. My great grandfather, granddaddy is what we called him, battled the disease for five years before he became a shell of a human and died of cardiac arrest. Although he was never officially diagnosed, we now know that it was more than just old age and the hallmark symptom he suffered from. My grandmother saw the struggles her mother went through with the strange behavior of granddaddy losing his way in the house they lived in for more than 50 years, double bolting the doors so he couldn't wander off, and then eventually going to court to claim legal guardianship. My grandmother lives in fear; not only for herself, but for my mom and dad.

My mom finally moved my grandmother from Florida to Texas in October 2013. My mother, along with the help of her amazing husband, is now the caregiver for my grandma. Becoming a caregiver to a loved one puts a whole new responsibility on any person. The roles change and my mom is all of a sudden the parent as my grandma becomes the child. My dad is right by my mom's side; he is her rock as she still tries to lead a somewhat normal life. The truth is we are losing my grandma in pieces, painful gradual pieces. She is often confused, can't see well and most recently couldn't remember my mom's husband of 25 years. I want to believe she knows who he is; it's the disease that doesn't know him.

Going out to dinner has changed. My mom knows my grandmother's likes and dislikes, so she orders for her at restaurants. The menu is too overwhelming and she doesn't want my grandmother to get frustrated. My grandma remembers to eat lunch during the week because Young and the Restless is over at noon. She hides things. She wraps everything in paper towels. She does so many things she never did when she was OK.

Watching my grandmother deteriorate before my eyes is one of the hardest things I have endured.

My grandma and I still enjoy a girl's day, but she tires easily so shopping is cut short. At the mall, we go directly to her favorite store where I know she will find a sweater or blouse she will like. At the register, she knows she needs her credit card before I remind her. She struggles with signing her name, and my heart breaks as she concentrates on the letters she has signed for more than 70 years. I alternate between cheering on my grandma and watching the clerk as she signs the receipt, hoping she shows no impatience. But no matter, my grandmother will take a new sweater home and she will feel good about it. On the way home, she asks about my life and I tell her about everything. I don't mind that these are stories I have told her numerous times. Nor do I mind that she is going to ask me the same questions before we get home. Right now, she knows I am her granddaughter and that is enough for me.

Alzheimer's disease has been waging war on my grandmother's brain for 8 years. It has coiled its tentacles around and through each section, quietly stealing away her memory and reason. With its cold, calculated maneuvers, it is seeking to deconstruct her completely and it is beginning to accomplish its goal. It is forcing her "to become altered or modified" without her permission. Rewiring, unplugging those ever important synapses. Forgetting simple tasks she has known how to do since her mother taught her as a young girl.

Alzheimer's does not only affect my grandma, this is a family disease. I know her future. I know what this disease will do to her. I just don't know when, and I don't know what it will do to my parents.

I am finally at the point where I can comfortably share with others about my grandmother's disease. I've come to the realization that awareness can start with me, and here I go:

Alzheimer's is:

Having to tell my grandma that no one is trying to steal her purse or makeup, she just put it in the laundry basket.

Having to remind my grandma that she is 77 not 73. Having to remind her what day of the week it is and where her room and bathroom are in the house.

Having to understand that when my grandma can't find the words for what she is trying to say, I need to have patience and respond with grace.

Spending the weekend at my parent's house while they are out of town because my grandma can't take care of herself.

Having to be the best support system for my parents and reassure my mom that everything will be okay even when I don't think it will.

Feeling frustrated that the rest of my family just doesn't get it.

Having the strength to go through another day, knowing that grandma's condition will only get worse.

Feeling angry.

Feeling helpless.

Feeling sad.

Alzheimer's is much more than someone losing their memory. It is a disease that stops for no one. It affects our mothers, our fathers, our grandparents. This disease does not only affect our life today, it will forever affect the future.

Currently there are an estimated 5.2 million Americans living with Alzheimer's. By 2050, it is estimated that 16 million Americans will have Alzheimer's. The only way to change that statistic is to act now. Raise money, raise awareness, write congress, volunteer. There is much to be done and there is no reason that I can't make a difference.

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    My Goal: $5,000
DKR Fund Legacy Council: United in the Fight.
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