Wednesday, February 8, 2012

Wednesday's Word: Alzheimer's

Disclaimer: This is me getting on my soap-box about something I am very passionate about. It's long, semi-depressing (at times), personal, but hopefully informative, and hopefully uplifting too.

Tonight, Zach and I watched an HBO documentary by Maria Shriver entitled "Grandpa Do You Know Who I Am?". It is a compilation of interviews with children, ranging in ages, who's grandparent is affected by Alzheimer's. During the documentary, Maria gives kids and adults who are dealing with a family member who has the disease some "lessons" in handling the one(s) they love. HBO, along with many other media outlets, are bringing more and more attention to this disease by airing documentaries and creating Alzheimer-specific websites where the public can learn more information about the disease and how they can help and get involved. This is a major step forward to finding a cure.

Traditionally, Alzheimer's (a form of dementia) was just thought to be a natural sign of aging. Even when families may have realized that this aging process wasn't normal, dementia and Alzheimer's were kind of a taboo topic to talk about. Maybe not "taboo" but just, scary. Alzheimer's is scary. Every 69 seconds, someone in America develops Alzheimer's. According to Alzheimer's Association Website an estimated 5.4 million people (1 in 8) in the United States in 2011 have the disease, and with the increase in number of older adults, that number is projected to double by 2050, meaning that Alzheimer's and dementia will likely affect virtually everyone in some respect. The projected increase between 2000 and 2025 for Texas specifically will be between the numbers of 49.1%-81%. In 2010, Texas alone had an estimated 340,000 people with Alzheimer's. Alzheimer's is the 6th leading cause of death in the United States. It's the 5th for those 65 and older. Nearly 15 million American's provide care for those with this disease, 80% of care provided at home is provided by family members. The reason that many people are having to care for their own family members is that it is too expensive to put them in a facility. There are Alzheimer's-specific facilities which differ from normal nursing homes because the staff is trained in ways to help stimulate the fine-motor skills and the brains of the patients in order to prolong their lucidity. In fact, aggregate payments for health care, long-term care, and hospice are projected to increase from $183 billion in 2011 to $1.1 trillion in 2050, with Medicare and Medicaid only covering about 70% of that. (By the way, all of these facts and figures are from here). Basically, all these facts and figures and statistics I just told you about boils down to this: Alzheimer's disease is real, it's growing, it's expensive, it's deadly and we need to find a cure.

Some of you may know that my Meemaw (maternal grandmother) has Alzheimer's. I found out when I was a sophomore in undergrad in 2007. She had been acting strange for awhile. We were like most families. We just decided it was a normal part of aging. And then, my Mom took her to a doctor in Abilene and she was diagnosed. My parents told me while we were eating lunch. I was devastated. The only thing I knew about Alzheimer's was that it made people forget everything, and I kind of thought it would affect her immediately. Like the next time I went home, she wouldn't know who I was. I considered transferring back to Abilene to be with her. I didn't want her to think I had abandoned her when she started deteriorating. I'm her only grandchild, and she's my last grandparent alive. It was a tough time. We tried to have at-home nurse care, but even while the nurse was there she would wander outside or leave the gas on the stove on. We were eventually able to get her into an Alzheimer's-specific care center. Windcrest has been a blessing to be honest. Since she has been there she has actually improved. It's been about 5 years since Meemaw was diagnosed, and she still remembers all the important things. It's weird how it affects the brain. She has great long-term memory. She can remember growing up, the names of her classmates, meeting and marrying my Papa, raising a family. She can remember all of that like was yesterday. But her short-term is a little more fuzzy. Just insignificant things in the big scheme of it all. Our family is very blessed that she has been on a plateau for so long. She is still herself with her same personality, she can still walk a little, speak well, write letters, color (which she loves), read, travel, and most importantly, she still remembers all of us. We are very, very blessed.

Because she's so "normal" it's sometimes easy to forget she has the disease. The forgetting may be more of a survival mechanism also. But tonight, when I watched the documentary, and I saw what the future holds, it crushed me to be completely honest with you. I pray I never have to deal with the things those 15 year olds, 10 year olds, and even 7 year olds were having to deal with. The mood swings, the inability to speak, walk, remember. I know that's what happens with this disease. I know that could potentially be the future. And it scares me. 

And it's in moments like these I make myself believe that one day there will be a cure. That one day, we will tell our grandkids what Alzheimer's was, like how our grandparents tell us what Polio was. As I told you on Sunday, the U.S. government has set an goal for finding a treatment for Alzheimer's by 2025. We are working hard to protect our older loved ones from this disease, and to protect their families from the heartache this disease causes. But for now, the only thing we can do is educate ourselves. We can't control Alzheimer's yet, but we can educate ourselves so that the disease isn't so scary. We can educate ourselves as to what Alzheimer's is.We can educate ourselves to look for the early-onset warning signs. We can educate ourselves so that when someone we love, or someone we know is diagnosed, we know how to handle it better than we would've had we not known. Alzheimer's is scary. But it's not as bad when you know what you're dealing with. Please, visit to learn more about Alzheimer's, dementia, caregiving, support groups in your area, current research, current treatment, and how you can help find a cure. 

To all of you who have given your love, support, words of hope, comfort, encouragement to me, my Meemaw, my mom and my dad, "thank you" doesn't seem to be enough. To those of you who have a loved one affected by this terrible disease, don't be scared. Don't be scared to talk to the people around you. Don't be scared to reach out. Don't be scared, you are not alone.  

1 comment:

  1. My grandfather had Dementia. His mom did too. We don't think it was full-blown Alzheimer's. But it was crushing. It started when I was in high school. It prevented them from traveling anywhere. They missed my high school graduation, my college graduation and my wedding. By the time my college graduation came around, he was confined to a wheel-chair. And she wasn't strong enough to transfer him to and from their car. He just didn't know how to help out anymore. He eventually went into a regular nursing home. His death wasn't the Alzheimer's but it was a major cause of it. He had the most amazing ability to remember meeting people. When he first met my hubby, we were only dating. My mom had passed away and we were in their hometown for the 'viewing' and my hubby stayed behind to stay with my grandfather while the rest of us went to the funeral home. From that point, anytime I would go visit my grandparents, my grandfather would ask me some questions (they were asked over and over and over). How old are you now? (He stayed in the kitchen/living room and the picture on the wall were mostly of me when I was little) Are you married yet? And then he would respond with my hubby's name. It was quite amazing. But sad at the same time because he would ask me those same questions as long as I was sitting in front of him. There would always be a break while he stared at the newspaper, and then the questions would start again. I'm glad he's not suffering anymore. I know my grandmother misses him. He passed in 2007. I really enjoyed your post. Hang in there!