Editor’s note: This is the third of a monthly series of articles that will be written by Methow Valley resident Don Reddington, which will explore the issues of living with Alzheimer’s disease. The articles will be written in collaboration with Raleigh Bowden, M.D., Katie Bristol and Methow Valley News reporter Laurelle Walsh.
If you have a parent, a family member, or a close friend who has Alzheimer’s disease (AD), it affects you as much as it affects the patient. It also has an impact on children. Explaining AD in a way that children can understand is difficult. Kids notice a lot more than adults give them credit for. They may not understand exactly the details or what is wrong, but kids deserve to be involved and informed.
Both my friend Jerry Bristol and I have family members and close friends who have children. I am a grandparent who is blessed with seven wonderful grandchildren.
So how do we explain AD in ways that children will understand? First of all, Alzheimer’s is a big word that might not mean much to children. It didn’t to me until I began to experience memory problems and started speaking with doctors. The term “disease” sounds like something contagious that would scare a child.
So what is a simple solution? Jerry and I simply say that we have a memory loss problem. I can explain that, as we get older, lots of us old folks have a memory problem. As I age and can’t remember as much, it doesn’t mean that I can’t do anything anymore.
Teenagers understand more details than children. I might take one of my teenage grandchildren outdoors to take a hike and enjoy the beauty of the country. On the hike, I might explain to her that because of Alzheimer’s, I may wander away from the house some day and get lost. Although it is a possible problem that we might have, I’ll explain, she shouldn’t be afraid because she will find the way back.
Teenagers like to ask questions, and the ones that I get from them will determine how much information I will be able to share. In any event, it is quality time that a grandfather gets to spend with his grandchildren.
Be open with children
If a grandparent forgets a grandchild’s name or calls them by the wrong name, it may cause the child to feel that “Papa or Grandma doesn’t love me any more.” Tell your grandchildren that you love them, “but I might forget your name or call you by the wrong name at some point in time.” Being open with your grandchildren seems to gain their understanding and appreciation for their grandparents.
If any of the children ask whether they can “catch” the disease by being near you, explain that “It is only my problem. It has nothing to do with you.” Being active with your grandchildren helps them to be less concerned or scared about their grandparents. I would encourage you to interact with your grandchildren so they see Papa and Grandma as they slowly change. You want your grandchildren to have good memories of your life together!
As the process of AD continues, your grandchildren may become concerned as their grandparent becomes more physically impaired or is bedridden. At that point, the child will decide if he wants to see his grandparent or not. If the child decides that he wants to visit his grandparent, he might bring their favorite food: cookies, ice cream, chocolates, candy, or fruits. For some grandparents, the gifts might not be possible but, in any event, they will love to see you.
I was concerned about an upcoming visit to our grandchildren in Colorado. I assumed our two daughters, Shawna and Becky, had told our grandchildren that Papa Don had a serious illness. I did not know what had been told and I wasn’t going to ask. I felt that I was responsible for giving our grandchildren an explanation of the changes in Papa Don’s life.
Before I left on the trip, I decided to approach Room One, the social services agency in Twisp. At the front desk, I approached Maureen and asked if she had any articles on explaining Alzheimer’s to children. The answer was “no,” but she felt that it was a good idea. She took the time to find several on the Internet. I was so thankful to Maureen.
Once we got on the airplane, I began writing a short but helpful article for my grandkids.
At the same time, I began this new chapter of “Living with Alzheimer’s.” I felt that other Papas and Grandmas with AD could benefit as well from reading “Explaining Alzheimer’s to Children.”
My explanation of my change in life to our grandchildren follows:
“Papa Don is having a change of life that I want to share with you. I am having a problem with loss of memory. Thus, I want you to understand how this loss will change our relationship. We have shared many wonderful times together. As I age, my memory has aged as well. We will have a change in our relationship. For example, I may forget your name, or have problems talking to you; it might be that I don’t understand your questions or comments. I will still love you as much as the first day that I laid eyes on you! Therefore, I will need your help with remembering and thinking. I love you and want to continue to see you. As days and years go by, I might get sicker over time. I promise that I or Grandma Ginger will explain those symptoms and how to handle them with Papa Don. With love to you! God bless, Papa Don.”
“P.S.: Please remember me in your prayers to God Our Father and Ann, my guardian angel, who are watching over me.”
Prior to meeting with the grandchildren, I had the parents of the two families review my presentation. One family has two boys, ages 5 and 9, and the other family has a girl, 14, and four boys, ages 2 to 12. The children were great! There were questions but they seemed to have received enough information. The best result was grandchildren that were very caring to Papa Don and tried to help in any way possible. It was a great experience for all of us. They will always be in my memories! I may forget their names but I will always remember my grandchildren: Trinity, Jadon, Gabriel, Silas and Marcus Scarpella; and Tieg and Skogan Wachter.
Our thoughts are with you.
Don Reddington and Jerry Bristol — AD League