Coping with Her Grandfather's Alzheimer's Disease and Lessons Learned from "The 36-Hour Day"

In this blog post from AFA Teens Advisory Board Member  Emmy Prothro she explains the important lessons she learned about caregiving and particularly those from reading "The 36-hour day" and how they benefited her interactions with her grandfather who had Alzheimer's disease. 
      
It has been eight years since my grandfather was diagnosed with Alzheimer’s disease.  We have been very lucky that his illness has progressed gradually over that time.  

     
As I look back over the past few years, it makes me happy that I can remember the days when everything was normal at Maw Maw and Paw Paw’s house. Paw Paw used to sit and sing with us for hours.  He would tease us and make us laugh.  He always had time for us. So as his disease has gone from forgetfulness to almost total disability, I have tried to give back to him my gift of time. 

     
The hardest thing for him is letting people help him.  I have learned to be more compassionate and patient with Paw Paw.  I always give him a kiss when I leave, and I tell him I love him.  Sometimes he will still say, “I love you too.”  I have learned to cherish those moments. 

     
This past summer, I read the book “The 36-Hour Day" a family guide for caring for persons with Alzheimer disease by Nancy L. Mace and Peter V. Rabins. As I read this book, I not only began to understand the illness better, but I also began to understand what my grandmother has gone through as Paw Paw’s only caregiver during the past eight years, until a few weeks ago when Paw Paw had to go to a rehabilitation hospital. He had become completely dependent upon her for everything, from getting dressed to eating to going out in public. She has done it all. She is my hero.

     
In reading, “The 36-Hour Day,” I also learned ways to communicate with my grandfather as he slips away more and more each day. Remaining calm, smiling, holding his hand and looking directly at him when I speak are all ways to communicate with him nonverbally.

     
As I learned from the book—and in real life, when someone in your family is facing a disease that involves memory loss, it is challenging for the family as well as the person who has the disease. All of us try to help Maw Maw out as much as we can. We have all adapted to Paw Paw and his needs.  The most we can do is keep his life as stable and familiar as possible.  Although I cannot change what my grandfather is going through, I have realized how my family can better deal with his disease and be more compassionate toward all of my family members who have been affected by it.  

     
Editor's Note: Emmy's grandfather recently passed away on September 9, 2011. Emmy notes: "I am glad that I had him in my life for 18 years."

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.

What You Should Do to Support Your Relative

In this latest post from an AFA Teens Advisory Board Member, Andrew Hsu explains what you should do to support your relative who has dementia from a teens perspective.

When we are young, our parents are supposed to take care of us. From the time we were born, even to now, our parents, if we are lucky, are always supporting us physically, financially, emotionally and in many other ways.

We’re kids. We’re supposed to be carefree, or at the very least, mind our own business. Anything that was not school related and was confusing was automatically tossed to our parents to deal with. They’re the adults and we’ve pretty much ingrained in our minds that they would forever be the ones who would take care of us; that they would be the ones to solve all the problems; that they are all-powerful.

At least that’s what I thought when I was growing up. Now that I’m transitioning into adulthood, the experience is surreal. The adults in my life are getting older, and I’m starting to realize that my parents and other relatives are like any other human beings. They get old, too, and now, the fact of our elders getting sick, getting older and dying is suddenly becoming more and more real.

When a relative has Alzheimer’s disease, you need to assure the relative that he or she has your support. The person will be less and less able to think and organize his or her thoughts in order to communicate, so you have to be very patient and understanding. Don’t be disappointed if your relative is having trouble recognizing you. It’s not because he or she doesn’t love you anymore. It’s simply because he or she is unable to recognize you. Don’t get frustrated, and be sure to visit often. Don’t interrupt when the relative is trying to speak because it will cause everyone to be frustrated and that’s not what we ultimately want.

In supporting your relative, it’s also important to understand that they often need the familiarity and repetition in their lives in order to minimize confusion and disorientation. Don’t be afraid to repeat what you just said because, with the person’s short-term memory loss, your relative might ask the same questions over and over again and you might have to repeat your answers.

The best thing to do is to always be understanding of your relative and always be patient, no matter what the circumstances. Although it may be challenging trying to communicate with your relative, always do your best. Now is the time to be as loving as possible. Do the best you can and always adjust! Hopefully, this helps with ways to support your relative in the event that he or she does end up being diagnosed with Alzheimer’s disease.