Dedicated to my mentor and friend Jestene McCord
by Patricia McManus, Black Health Coalition
How many of you have watched someone older that we care about begin to forget things or not remember things? Do we laugh it off and blame it on “old age?”
Is it something that we accept as a normal part of aging and just assume that there is nothing that can be done? How many African Americans have been misdiagnosed as just getting old? Well, I have had a rude awakening to the issue of Alzheimer’s.
A friend, Jestene McCord, was diagnosed with Alzheimer’s several years ago, but she has lived with it all her life. Her grandmothers on both sides her family, her father and her mother and other relatives have suffered from this condition.
McCord personally took care of both her grandmother and her mother and had to have wondered for years would her time come, but you would never know it by the way she leads her life. She has always been full of life and she still is. She is sad sometimes because she cannot remember something she did an hour ago. But she still can laugh at herself and others.
She attends community meetings, including those about Alzheimer’s.
So what is this disease that can rob a person of their ability to remember daily events and can sadden those who love them as they seen them change so drastically over a very short period of time?
I chose to write about Alzheimer’s disease because as with other conditions in our community there is a disparity between African Americans and other groups as to diagnosis, treatment and quality of life. It robs us of the wisdom of our elders at a time when it is needed more than ever.
Alzheimer’s is the most common form of dementia among older adults. According to the Centers for Disease Control and Prevention (CDC), it involves parts of the brain that control thought, memory, and language and can seriously affect one’s ability to carry out daily activities.
The disease is still not fully understood and there seems to be no one single factor. However, age and family history are very clear risk factors. It is also believed that genetics plays a role in the development of this disease. It is one of the top leading causes of death in the United States and there are over 5 million people affected with Alzheimer’s.
The healthy human brain is made up of billions of different kinds of neurons that are connected through chemical and electrical signals. In healthy aging, most types of brain neurons are not lost in large numbers. In Alzheimer’s disease, however, many neurons stop functioning, lose connections with other neurons, and die because of communication, metabolism and repair are disrupted.
The disease starts by destroying neurons in parts of the bran that control memory. Eventually, many other areas of the brain are damaged, and the person becomes helpless and unresponsive to the outside world.
What did Jestene think about as she cared for her loved ones, while wondering if it would happen to her? Now it has. She often talks about how it was to care for her grandmother and her mother. She will call me about something and then call back 15 minutes later about the same thing. But I do not think about that because I am glad she can still remember me enough to make that call.
Jestene’s independence, that she always fought so fiercely to maintain, is gone. She has made adjustments, but has not totally given up. This is important because her ability to fight for some of her independence, even if it is small, is very important to her sense of pride and self worth.
There are some new signs in the research that suggest that African Americans may have different genes at work than other groups. A community advisory meeting on Alzheimer’s that I took Jestene to last week is looking to learn more about this information and what it means to those in our community who have the disease and for those who care for them. If you have any relatives who suffer from Alzheimer’s there are several things you can do:
1. Make sure that they get good medical care.
2. Make sure that their living conditions adjust to their increasing lack of independence. This must be done in such a way that is respectful of who they are and recognizes that their still may be some life decisions they care still make.
3. Learn as much about the disease as you can, especially if there is a chance that you could also have the condition.
4. Join community groups that are working with providing support to those with the disease but also providing education and information to our community.
5. Help to hold research institutions accountable for finding out how this disease is different for African Americans, even at the genetic level and what that could mean for treatment and quality of life.
There is a song in African American churches that says, “Give me my flowers, while I yet live.”
We need to do that to the elders in our community that are suffering from this devastating disease. We need to become their memories.
I felt very comfortable talking about Jestene, because she has taken on her current condition the way she has always done everything. She makes it fit her goals, not the other way around. She has chosen to be open about what is going on in her life. In that way, she still has control.