When a Grandparent Has Alzheimer's
"My grandmother has Owls Timer," says 6-year-old Michael, talking about his great-grandmother who has Alzheimer's disease.
What is Alzheimer's?
Alzheimer's disease is a brain disorder that slowly degenerates brain functions. Usually within 3 to 18 years, this disorder will destroy the patient's abilities to reason and remember. Their memory is affected, therefore learning is hindered -- they frequently forget things from big events down to little details. Because the patient forgets, there is also a breakdown in behavior patterns. Many patients feel anxiety and others can get violent. At the end of this tragic disease, the patient returns back almost to the infancy stage. They forget who they are, who their family is and even to take care of themselves. Many Alzheimer's patients get depressed at the beginning of their disease as they start to see what is happening to them.
"My grandma is getting to the point where she's very moody," says Lynn, Michael's mom. "One minute she's telling my kids how much she loves them, and the next she's yelling and in tears. It's hard for them to understand."
According to the Alzheimer's Association there are approximately 4 million Americans who suffer from Alzheimer's today. In a survey conducted in 1993, about 19 million Americans reported they have a family member with Alzheimer's. Most were between the ages of 65 and 85 -- that's a lot of grandmothers and grandfathers. That's also a lot of grandchildren who are touched, scared and have questions about Alzheimer's.
"Michael got scared today when we visited my grandmother," says Lynn. "He just learned to tie his shoes yesterday, and was so proud. He wanted to show is his great-grandma. Well, he's a little slow right now, and she started yelling at him that somebody needs to teach him HOW to tie his shoes. Poor thing. He looked up at me confused. I told my grandma that he had just learned yesterday, or should I say RETOLD her -- I had just told her five minutes ago."
Explaining Alzheimer's to Children
There really is no easy way to explain to your children how a patient with Alzheimer's acts. But with your help, they can begin to understand what's happening, and possibly even play a role in the care giving.
"It's a good idea if parents take their children along to visit the grandparent when the grandparent is in a nursing home," says Edith Dobbs, a private caregiver working with Alzheimer's patients. "It can be explained to your child that when people get older they sometimes need help, because they can't get around very well, they get tired and some of them get forgetful. Also, that grandma or grandpa forgets things now and needs a little help."
A preschooler won't need much more information -- for the moment. They might ask you the same question over and over again but most likely they'll be trying to figure out why grandma is forgetting or why she is acting "like that." As your child gets older, prepare yourself to answer many more questions. This will be a difficult time for you and your child. Depending on how close the relationship between child and grandparent is, the child may feel saddened and feel a tinge of loss seeing grandma or grandpa ill.
Get Children Involved
Get your child to participate in the care giving. By doing even the smallest chores, a child will feel like they are helping. Getting grandma a glass of water, setting the table, telling grandma a story or singing a song to grandpa are all small things that will help both the child and the grandparent in a big way.
"Michael likes to get the Ovaltine out of the cabinet for her when he wants some chocolate milk," says Lynn. "She always forgets if she has any, or where she keeps it, so this is his 'job' each time we visit. It's small, but you should see the look in his eyes when he hands it to her. He's so proud."
Be honest with your child; it can get worse if you lie about what the grandparent is going through. It's fine to tell them that the brain isn't functioning properly and that's why grandma or grandpa forgets. They don't require medical terms, statistics or treatments and procedures. Keep your answers short and simple.
"I believe that children feel lost if you hide the truth," says Dobbs. "The absence of the grandparent (or seeing them less often) leaves an empty place. If this is addressed head-on, the child can come to realize to the best of their ability what is happening to the family member and adjust. Just like any other any illness, it needs to be brought out into the open and talked about."
Give them concrete examples about what it is they might forget. Tell them, "Grandma might forget to wash her face or hands or she might forget to turn out the lights. Grandpa might forget what he was talking about. He might forget what day it is or he might forget to put on a coat before going outdoors." Giving daily examples will help your child understand more and relate this to a recent experience.
"Ask your child, 'How did you feel when you lost your teddy bear?'" says Dobbs. "'You were sad and confused. Grandma is also sad and confused. Let's help her and be there for her when she forgets things.'" This will show your child to be tolerant and respectful toward people who are ill. Compassion isn't a feeling you're born with; you must develop it. This is a good opportunity for your little one to experience a little compassion and develop empathy.
"Michael tells me that great-grandma forgets that she's already given him a bowl of ice cream, and gets him another one," says Lynn. "He says he has to eat it so he doesn't hurt her feelings."
Visiting the Grandparent
"If your child has a close relationship with the grandparent and the condition of the elderly family member hasn't moved into a stage that is violent, it's important to include your children in your family activities and visits," says Dobbs.
Set the visits at regular intervals when going with the children. Don't overload your child or the grandparent. For the health of the family, it's important for both to be involved together right from day one. Limit your time for each visit; grandparents get tired much quicker than preschoolers.
Your family will be able to grow into this situation, since it's a relatively lengthy illness. As your child gets older, the comprehension level will increase. As grandma or grandpa gets weaker and more and more forgetful, you should explain more to your child or make the visits together less often. The welfare of the patient must be put first. When you have younger children, they might not realize what's happening in their family. Visiting a sick grandparent can be exciting. New halls to run down and new adults to tell you what to do, or at least try.
"If your child runs around the room, makes a lot of noise and is disruptive, they aren't paying attention to grandma anyway and that sometimes gets certain patients overexcited," says Dobbs.
Children visiting their grandparents also can do lots of good to the ill grandparent.
"One family I worked with visited grandma with their baby," says Dobbs. "Grandma would light up. A visit from the children at first can give the elderly person quality to their life. The doctor can also be valuable tool in determining when grandma shouldn't be around the little ones anymore."
If you have doubts or worries, you can discuss them with the medical staff. Each case is different and each child is different.
"My kids still look forward to visiting their great-grandma," says Lynn. "I will continue taking them as long as I possibly can. I want my children to remember her, and for them to know she was an important part of their lives."