Lessons Learned from Understanding Her Abuelita's Alzheimer's Disease

In this blog entry from AFA Teens Advisory Board Member Melissa Stepovich, she describes the lessons she has learned as she tries to understand her abuelita's Alzheimer's disease, and the various stages she must go through as the disease progresses.  

Alzheimer’s disease is not only a disease that affects memory, it is a disease that affects different aspects of a person’s life through changes in personality and behavior.  I have seen these changes in my abuelita (grandma), who was diagnosed with Alzheimer’s disease in 2003. 

By being with my abuelita, I have learned several things.  First, I have learned that patience is very important when being in the presence of my abuelita or anyone who has Alzheimer’s disease.  Having patience allows me to deal with whatever mood my abuelita is in that day.      

   
There are, in general, three stages of Alzheimer’s disease: the mild stage, the moderate stage and the severe stage.  Symptoms of the mild stage include becoming confused in familiar places, taking a longer time than usual to finish regular daily tasks, and minor mood changes.  These symptoms are frequently confused with changes that occur when someone ages. Problems recognizing family and friends, intensified memory loss, and repeating stories or motions are the indications of the moderate stage.  In the severe stage of Alzheimer’s disease, a full-time caregiver is often needed to assist with all daily activities, such as eating, going to the bathroom, and getting dressed.

    
Unfortunately, my abuelita is in the severe stage of Alzheimer’s disease.  The severe stage requires me to pay close attention to my actions around her. Her mood and personality greatly fluctuate.  A simple smile could make her very happy or it could make her very angry because she thinks you are laughing at her.  

     
Overall, I have acquired a deeper level of patience and love for my abuelita.  Even though I know she will never be the same, I have learned ways to cherish every moment I have with her.

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."