Tag Archives: Caregivers

Finish Master’s Project: Check.

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If you’ve been following my blog for the last few months you’ll know that I have been diligently working on a website for the graduate program I am in at the University of Alabama. There have been ups and downs, and there were definitely days when I didn’t know if I could pull it off, but I’m happy to announce that the website is now up and running. I’m proud of the finished product, but I highly doubt I’ll ever stop tweaking it. I’ve become far more attached to the topic than I thought I would be, and am honestly hoping to make it a project I continue to work on even after I receive my Master’s degree.

Since it is fairly new, not many people have seen my website, and I don’t know that very many people will ever see it. However, I’ve already been told by a few that it helped them to gain a new perspective. Others have said it was comforting to hear from others who share similar experiences as caregivers. Those comments have made me realize that giving caregivers a platform to share their stories is important, and I will gladly continue to do it if I can.

So, here it is: www.caregivers.ua.edu. Please check it out and let me know what you think!

While you are on the site, you will notice that there are four videos that focus on four different families. The interviews are with the caregivers, and they will give you a glimpse into their lives. Some of their experiences are similar and some of their experiences are not, but the point is that they are not alone.

I have two main goals for this project: first, I hope that people who do not know much about Alzheimer’s or the effects it has on the entire family will gain a new perspective, causing them to see the importance of raising awareness of this disease. Caregivers of those with Alzheimer’s have been called “hidden caregivers” because they don’t speak out. This is often because they don’t want to embarrass their loved one or because they want others to remember them as they were before the disease. It is sometimes because they don’t want to sound like they are complaining because they gladly carry the burden of being a caregiver to those they love. However, the only way to shake the stigma that comes with Alzheimer’s is by sharing these experiences, which will also show others the importance of finding a cure.

My second goal for this site is that it will help caregivers feel more connected by listening to stories of those who are facing the same difficulties that they face. It’s also comforting just to talk to someone about it sometimes. When I thanked one of the caregivers for allowing me to tell her story, she said that it was me that needed to be thanked. She said it was just nice to know that someone cared. Those words made all of the hard work worth it.

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Caring for Alzheimer’s

imagesMost master’s programs require students to write a thesis paper, but the program I am enrolled in, the Community Journalism program at the University of Alabama, is somewhat different. The ComJ program, as we call it, requires us to identify “a fundamental community problem and then conceptualized an innovative online approach to addressing that problem.”

I struggled to choose the community problem I would focus on at first. I wanted it to be something that I cared about, and I wanted it to be something I thought might actually help someone. To complicate matters even more, I wanted it to be something that nobody else had done before, at least not in the ComJ program. (To see some of the past projects, click here, here, or here.)

After much thought and research, I chose to focus my project on Alzheimer’s disease and dementia. Instead of creating a website that discusses the disease itself, however, I am focusing on those who care for a loved one who has it.

According to the Alzheimer’s Association website, more than 5 million Americans are living with Alzheimer’s. It is a disease that worsens over time, stealing a person’s memory, identity, and eventually their ability to control movement. However, the person who has the disease is not the only one it will affect. The website also states that 15.4 million family members and friends of patients with Alzheimer’s provided 17.5 billion hours of unpaid care in 2011. Unpaid caregivers provided eighty percent of Alzheimer’s care. The men and women who act as caregivers are often forgotten when this disease takes its final toll. They are the ones who deal with the daily stresses and worries of caring for the person. They are the ones who feel helpless as they watch their loved one slip into a world they cannot reach. 

I read an article on Forbes.com that reassured me that the focus of my project is important. It included an interesting quote from Meryl Comer, co-founder of Women Against Alzheimer’s and president of the Geoffrey Beene Foundation Alzheimer’s Initiative. Comer said the following about the experience of a caregiver:

 “The caregiver is the keeper of the secret. It’s critically important for women to step forward and be honest about what it takes to care for a loved one with this disease. Caregivers are often too exhausted to be advocates—or concerned with preserving the dignity of their loved ones. It’s time for a ‘coming out’ party just like the HIV/AIDs and Breast Cancer advocates stepped out.”

I don’t know that I would call it a party, but I do think it’s time for caregivers to start speaking out about their experiences. Not only will it help them to connect with other caregivers for support, but it can also raise a new kind of awareness for the disease by showing that it impacts more than just those diagnosed. As with many other diseases, I believe it is an experience that is difficult to relate to until you or a loved one is diagnosed. I say this because I speak from experience. This project is personal to me because my grandmother has Alzheimer’s. It has been painful to see this disease progress, and just as painful to see the affects it has had on my family.

I’m in the process of finding caregivers who are willing to tell their story in short videos that will be featured on the website. If you or someone you know is a caregiver, or if you are just interested in my project, please leave a comment. I would love to hear from you.

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