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."

What a Difference Spending a Few Hours with Someone with Alzheimer's Disease Can Make

 In this blog post by AFA Teens Advisory Board member, Barrett Cole, she addresses the growing Alzheimer's disease epidemic and calls on teens to make a difference by volunteering and spending a few hours with someone with the disease.

     
Alzheimer’s disease doesn’t just affect the people with the disease; it has a huge impact on their families, their friends and their communities.  It not only robs individuals of their cognitive abilities, but it steals time and energy from everyone involved.  With a growing aging community, Alzheimer’s disease continues to wreak havoc on those whose lives it affects.  As people live longer, and with no cure yet in sight, Alzheimer’s disease will have a huge impact not only on older generations but on younger generations as well. 

Alzheimer’s disease is a growing problem.  According to the Alzheimer’s Foundation of America (AFA), it is estimated that as many as 5.1 Americans may have Alzheimer’s disease.  

Current research from the National Institute of Aging (NIA) indicates that the prevalence of Alzheimer’s disease doubles every five years beyond age 65.  While deaths from other major health factors continue to drop in the United States, the number of deaths due to Alzheimer’s disease continues to increase.

            
With a disease like Alzheimer’s, for which there is no cure, one of the most important things that we can do as neighbors and communities is to give of our time and energy in helping people dealing with the disease and its insurmountable trials.

            
Alzheimer’s disease is not only emotionally draining, but it is financially draining.  It is estimated that one to four family members act as caregivers for each individual with Alzheimer’s disease, according to AFA.  The annual cost of caring for one individual with Alzheimer's disease ranges from nearly $18,500 to more than $36,000, depending on the stage of the disease, and the national tab for caring for individuals with Alzheimer’s disease is estimated at $100 billion annually.

"The demands of day-to-day care, changing family roles and difficult decisions about placement in care facilities can be extremely hard to handle," according to the NIA.  Community initiatives such as online and face-to-face support groups can be a lifeline to those dealing with these issues.

Volunteering to just visit someone with Alzheimer’s disease for as little as an hour can make a difference both for the caregiver and the individual with the disease.  Additionally, recent studies show that social engagement and mentally stimulating pursuits can help reduce the risk of cognitive decline and Alzheimer’s disease in particular. Take the time to go read a book or play a game with someone with Alzheimer’s disease.  Cook a meal.  Hold a conversation with an individual who spends most of the day alone taking care of a loved one.  Help educate members your community about this disease and risk factors.

            
Even one small act of kindness like this can mean the world to people affected by Alzheimer’s disease—and can reward you with meaningful experiences in the process.