How One Novel Shaped a Teen's Experience Volunteering in the Alzheimer's Community

In this latest post from AFA Teens Advisory Board Member Abril Resendiz, she reviews a novel entitled “Still Alice” and suggests how it has helped her as a volunteer at Alzheimer’s organizations. 

For the last several years, I have been volunteering at several different types of organizations, but nothing has had more of a colossal impact on me than volunteering at a care facility for individuals with Alzheimer’s disease.
     I began volunteering at a care facility near where I live in Texas during my freshman year of high school and from the moment I started there, I felt an inexplicable sensation. I soon realized that the people who I was talking to were cognitively impaired. And as a result, our conversations were rather circular. At first, I could not ascertain how to talk to the residents, but after a few visits I realized that the key was to engage them in a conversation in a way that was most meaningful for them.
     I formed such a strong connection with these residents that I felt I should learn more about their illness. I wanted to expand my knowledge of Alzheimer's disease to be able to interact with the residents in the most effective way possible.
     I read several books to further learn about the disease, and even though they guided me to understand the biology of the disease, I still remained unaware of how someone with Alzheimer’s disease would actually feel as the disease progresses. That is, until I came across the novel, “Still Alice,” written by first-time author Lisa Genova, who holds a Ph.D. in neuroscience from Harvard University.
     The novel is a compelling, heartbreaking and terrifying story about a 50-year-old woman named Alice Howland, who is a brilliant Harvard professor, wife and mother of three. The novel depicts her sudden descent into early-onset Alzheimer's disease and the impact that it has on her life. While most books about Alzheimer’s disease are written from the point of view of a clinician or other healthcare professional, “Still Alice” is written from the point of view of Alice, the person who actually has the disease. I believe that this literary approach makes the book that much more powerful.
     As Alice slowly starts to lose her cognitive abilities, the story becomes more difficult to follow. Yet, although the description of events as told from Alice’s perspective becomes less clear, mirroring the course of the disease, what is gained is much more powerful: You get to see the feelings of frustration, anxiety and turmoil that Alice experiences.
     I believe “Still Alice” is a compelling book that can help family and friends connect more effectively with their loved ones and better understand what they are going through.
     The insight I gained from the book has, no doubt, helped me become a better volunteer. One of the caregivers at the facility once told me that she saw me as a messenger—that through my visits, I was delivering joy into these residents’ lives. However, in reality, I see myself as the recipient of this joy, a joy that I believe I acquire each time I volunteer.

How to Overcome the Loss of Communication Caused by Alzheimer's Disease

In this latest post from the AFA Teens Blog, 2011 AFA Teens Advisory Board member, Chris Schloss provides meaningful suggestions on how to overcome the loss of communication caused by Alzheimer's disease.  

One of the many frustrating aspects of coping with loved ones affected by Alzheimer’s disease is the loss of communication. More than likely, over time, the disease strips people of their ability to remember words, communicate thoughts and even to understand the life stories you might want to share with them. This limited communication is a fact that many caregivers find hard to accept.

But, in order to move forward through this sad period, caregivers can make the most out of the time they have with loved ones with the disease by cherishing the precious moments that remain. If a caregiver can proceed to this step, he or she might ask many questions: “How do I make the most out of our remaining time?”, “How can we still communicate if I can’t tell him/her anything?”, and “How can I get help?” Both my grandmas currently have or had Alzheimer’s disease or another form of dementia. Only one is still here for me now, and I am facing these types of questions as my relationship with her continues to change as a result of her illness. 

Now, whenever I tell my grandma anything pertaining to my personal life, it’s hard to believe that it will only entertain her for a few brief moments at most. Lately, it has escalated to the point where we hardly speak because of the pandemonium. 

I have discovered that the most successful way to bring her to a calm state is simply to reminisce with her over her childhood memories or engage her in discussion about the things that she enjoys. 

Once, during a stretch of long, chaotic days, my sisters and I brought over our black lab. This acted like a quick remedy for happiness; I hadn’t seen her that happy for months. She didn’t stop smiling, laughing and petting the loving dog, and my sisters and I saw a glimpse of how we remembered her a few years prior. Another time, when, things went bad, my mom and I took the advice of another AFA Teens advisory board member and played Puerto Rican Christmas music for her, even though the holiday season was nowhere near. Again, she was ebullient because she still remembered the memories of the carols. 

The most important factor in keeping a loved one relaxed and sociable is to make the person feel as comfortable as possible, at all costs. Sometimes, when all else fails, just sitting quietly and holding the person’s hand is the best way to connect. Making the most out of the time you have with a loved one with Alzheimer’s disease isn’t necessarily figuring out how to communicate your own personal life, but rather stepping back and enjoying being in the moment.