Watching Her Fade

I wanted to come in and do a great blog filled with humor and light hearted antics, but today I have to admit I am really not in the mood. So today I write about a disease that will drown a family quicker than a flood. It is a disease so intense that the victim doesn't even know they are sick but the caregivers and family around them suffer immensely. A disease that will break the heart and wound the soul forever, leaving you with nothing more than a distant faded memory of before. I want to start this blog by giving some statistics:

• There are now more than 5 million people in the United States living with Alzheimer’s.


• Every 72 seconds, someone develops Alzheimer’s.
  
• The direct and indirect costs of Alzheimer’s and other dementia's amount to more than $148 billion annually.

My great aunt died with this disease in 2006 and it changed the foundation of my family forever. When you ask most people what they remember about my aunt they will tell you several things but two of the main things are: she was a shrewd business woman and she reminded them of Lucille Ball. She had the stature and goofiness of Lucy but the business sense to amass a large fortune in real estate. Real estate has been part of my family for years now, something that until very recently I took for granted. I grew up knowing words like mortgage, foreclosure, and contract like most children know their ABC's. Now I tell you all this to go back and start from the beginning.
My great aunt is my grandmother's sister. They were born EXACTLY two years apart, my grandma being the oldest of the two. My grandma was born in 1929, during the Great Depression. When my grandma was six her dad died from a heart attack. Now this isn't exactly news worthy but it is leading up to the point I am going to eventually get to. They attended a local Catholic school and lived off of people's generosity as much as their own skills. Hardwork is what put my aunt through college. My grandmother became an accountant. All the while their older brother was off fighting in a war, that as my grandmother told me, they didn't really understand. The atrocities of the Nazi regime did not come out fully until quite a few years later.
My grandma and my aunt were more than sisters. Their bond was fast and furious for most of their lives. Like I have stated my aunt was a shrewd business woman and that meant that although she loved her family...if it came down to it the business came first! My grandmother was divorced after 25 years of marriage and found herself, like her mother, penniless and a single parent. Sure, she had always worked, but now the burden was much higher. My aunt helped my grandma start a very successful diner in town. When the money stopped flowing to her liking she shut it down. This started an 8 year silence between them, in which time my grandma went to college and became a real estate agent. My aunt, being a real estate broker, decided to end the feud and brought my grandmother into her company.
This was the way it was for my entire childhood and teenage years. Grandma and my aunt working side by side. Both equally as talented as the next. Both having this high value set upon always looking professional, I thought for a long time that both women slept in their business suits. My memories are of a family that laughed all the time. We would be together at every holiday and summers. We would go to my aunt's cottage where I learned how to swim under water, where massive food fights would break out for no real good reason, and life was exactly as it should be. Both women were such a huge influence in my life. They showed me how women, against all odds, could be successful. They showed me how to strive to be the best woman imaginable. They showed me perseverance and grace beyond measure. Lessons I live by to this day. I tell you this history to demonstrate to you how lives are torn apart by this disease.
When I was 14 my grandmother's brother, whom I loved more than any other human being on the earth at the time, started having heart troubles. While dealing with his heart issues my aunt's husband of almost 50 years was told he had lung cancer. For 2 years both men suffered simultaneously with their diseases, both hanging on for the last Thanksgiving. My grandma's brother died a week before Christmas, my aunt's husband passing away a week after. Needless to say the deaths took a toll on both of these women. I watched them start to fade together. Neither looked quite a professional as they used to, their hair growing a tad longer than was ever allowed. Neither smiled as much and the cabin now sat deserted. We no longer saw my uncle's side of the family or spent time just being with each other. Every time we came together it felt like it was a forced happiness. My grandma and aunt cried a lot. I remember how sad and defeated they both looked.
In 1999 my aunt's oldest child came home from California, where he had lived for most of his adult life, he came home to die. He had killed himself slowly, constantly consuming alcohol and drugs to drown whatever hell his mind had created for him. He was a beautiful man, and I say this because it is true, he looked like Jesus. I don't mean to compare the two but all the pictures you see of Jesus, at least the ones I have seen, look like my cousin. This tall, skinny man with sandy blond hair down below his shoulders, a small mustache and beard, and the bluest eyes (as if heaven sent). He was funny, when he wasn't sober, he would make you laugh until your sides ached. I remember being kicked out of Thanksgiving dinner one year because I asked him to pass me a roll. From the other side of the table he stood up, stepped back three steps, and hurled the roll (great spin on it like a football) to me! My aunt was not thrilled but we roared with laughter. He came home to die, this fact remains true. He was not nearly 40 years old yet but he was dying and he wanted to be home.
He was gone within three months from the time his plane landed. This is the moment when all started to fade. When all the light went out of my aunt. I remember the precise moment when we realized it was going to kill her. We walked into the funeral home for his calling hours and there he lay, looking for the first time like he was at peace. My aunt walked in with her other two children and started to scream. I remember the sound of it as if it was a recording stuck in my head forever. "My baby" she screamed and clutched at the side of the coffin. I remember the heartbreaking sound of her hitting the floor on her knees. I remember the smell of the funeral home and the feeling like I was invading on something very private. I hated him for a long time after he died. For what he did to himself, for what he did to the family, but most of all what he did to her.
Things went down from there. She started having black outs. Black outs while she was walking, working, and driving. I remember plenty of times she would call my house and we would have to slowly try to guide her to us. She always wanted to be there, something that in the beginning we didn't mind. People seemed to come to my parents house when they were dying. It was a strange thing but my uncle did the same thing and also my cousin. Near the end they all wanted to be with us, which made the deaths so much more real. And then came the little things. Things like sending the bill back to the electric company but keeping the check in her accounting folder. Things like forgetting what numbers were. She would put things in odd places, underwear in the freezer and cold cuts in her microwave. She would make strange foods..jelly on the sweet potatoes was the worst! One year after her son's death my aunt was diagnosed with dementia. She couldn't tell you what she did yesterday but she could tell you in detail what she did when she was 8. She was always having tea with her husband, brother, parents, and son. We would always "just miss them" when we went to visit. She faded quickly. It took only six years for the disease to claim her.
Six long years in which time the Lucille Ball woman left us forever and was replaced with this shell of a human we no longer knew. She became child like again, at one point in time perfectly matching my son's intelligence level when they would sit and play with puzzles together. Then there came a point where I would no longer allow her around my son, she was just too mean and unpredictable. No medications helped and the doctor's treatments failed regularly. Her surviving son did everything in his power to remain by her side. He would talk to her so gently and pat her on the head. She didn't know she was sick, she was having fun, but it nearly killed him.
When she died we all cried a bit but we weren't overwhelmed with grief. We had grieved her years ago. We had watched her fade and knew she was gone. She had slowly left our lives long before her body quit functioning. My grandmother still hasn't cried a tear over her death. She hasn't mourned, she hasn't fully healed, and she is starting to fade.
We are watching, in terrified horror, as my grandmother is starting to slip away from us. She is mean, something that no one would EVER had said about my grandma. She is mean and rude. She says things that are so hurtful yet I feel guilty for getting mad at her. I want her to just snap out of it. To wake up and be my grandma again. Not this empty person she has become but the grandma that was so full of life. The grandma that would never sit for more than a few minutes. The grandma that laughed with all her heart and soul. The grandma that I had is gone, this I know now. Her heart has been broken, she has been broken, and now we have to be here to try and hold her up. It is hard. It is hardest on my mother, who being the oldest, takes the brunt of the harshness. She is demanding and dishonest and takes more patience than any of us seem to have. She has not been diagnosed yet but we know the time is coming near. I hate this disease. I hate what it does and what it leaves in its wake. It comes in like a slow moving cloud, builds to a storm you weren't expecting, and leaves as quietly as it came. Leaving everyone reeling from its devastation. For now I still have her physical body and I have to learn to accept that for what it is. I will hold her a little longer and kiss her as often as possible. I will love her as much as I can and when the light goes out I will be ready. I already miss her completely!

If you or anyone you know might be suffering from this disease PLEASE take this quiz: http://www.alz.org/alzheimers_disease_nadm_quiz.asp early detection is the key to slowing the progess of this disease!