WHAT’S WRONG WITH GRANDMOTHER. EXPLAINING TO CHILDREN AND ADOLESCENTS
WHAT’S WRONG WITH GRANDMOTHER?
EXPLAINING TO CHILDREN AND ADOLESCENTS
The person with dementia will have contact with children and adolescents. Given the wide range of circumstances, the wider range of personalities and ages of all involved, it is not possible to suggest a simple “one size fits all” prescription for how to help them deal with the dementia person they love. But there is one simple rule: discuss with them what is happening with their loved one. Typically, the best person to do that is that parent closest to the dementia person. Still, it is not easy to explain what is happening.
Even very young children will be aware that something is wrong with the dementia person. Trying to conceal the situation from them will fail and likely result in confusion for all, even contribute to fearfulness. They may be afraid of their grandmother, who does strange things, even yells at them for being noisy. Some children will be afraid that others, including themselves, could “catch” the illness. Some may even be concerned that they “caused” grandmother to get sick by their behavior, after she complained that they were too noisy. And do NOT assume that the absence of their open response to the situation means they are unaware of, or not processing, what they observe and perhaps are making such strange conclusions.
It scarcely needs stating that the child’s/adolescent’s reaction depends greatly on the stage of the dementia. Early in the dementia process, they may only know that grandmother keeps repeating herself. Later they experience the unpredictable angry outburst. Still later they find out that grandfather needs to wear a diaper.
The bottom line is that the child/adolescent needs direct and honest information and discussion. It is risky to assume that you know the child’s thoughts about what is happening with the person with dementia and their ideas about the causes and outcomes. And also keep in mind that even very young children (certainly before 3 years of age) are very capable of sympathy and sadness. Someone should explain what is happening to the dementia person and ask many questions about the child’s/adolescent’s thoughts and feelings. One should probe carefully several times to get a clear understanding of the child’s/adolescent’s thinking. And then explain the dementia so that they understand. That is not easy.
A concrete analogue could be helpful for explaining what is happening. Here is one idea: By 3 years of age, most of them have an electronic gadget, likely an electronic game device. Discuss the components of the device they know—controller, the box/computer itself, the response on the screen, etc. Then discuss what happens (and it probably has happened with their device) when a part of it does not work right. That is like what happened with your grandfather; part of the brain is not working any more the way it should. The part of the brain that helps him remember is not working well. Or the part of the brain controlling anger is somewhat broken, so he becomes angry easily. That part of the brain is not functioning. But grandfather is still the same person, happy and outgoing, laughing a lot, etc. He loves you just as he always has.
Or perhaps a similar explanation comparing the dementia process to a car losing some function. However this is done, it will take some time. Even adolescents might benefit from the analogy approach. What is actually happening in the brain is complex and unclear to us all.
Conversations about these matters should happen repeatedly; we all need reminders of why there are troubling events. Even adults (me, as you may note from past blogs) are bewildered, even upset, by how their loved one acts some of the time. Children need reminders that grandmother’s brain is somewhat broken and causes these odd behaviors. And the discussion is never over, as problems occur and as the disease progresses.
And, for the child in middle childhood (6 or 7 years old) and beyond, there is likely to be embarrassment when friends visit, particularly in the situation where the person with dementia is living in their home. The “odd” behavior of grandfather may be mortifying around a friend. We all have mixed feelings about our relative/friend with dementia. These feelings among children/adolescents are there and are even more confusing to them and their friends than to us. Aggravation and compassion can be felt at the same time, about the same situation. Efforts to patiently explain with honesty will help everyone in these circumstances. And the child/adolescent may need support from someone outside the family. Emotionality within the family may complicate supporting the child/adolescent and interfere with explanation.
My personal experience with all of this was not extensive; our daughter and her husband worked effectively with their children about what was happening with Beverly. Our granddaughter described how, early in the dementia, Beverly was repeating herself around the children. The youngest (about 4 then) said, “Grammy, why do you keep repeating yourself?” So the oldest one talked to him privately to explain about how Grammy’s dementia was affecting her memory. I only learned about this event quite recently.
There were moments that were troubling. Beverly and I were visiting their home around a year prior to her moving into the facility. She had several spells of paranoia, resulting in her hiding from me and being angry and frightened. The grandchildren could observe the difficulties, but simply stayed out of the way. Their responses to Beverly afterwards made it clear that they understood, in a sympathetic way, what was happening with these behaviors. They just showed Beverly their appreciation and love; after all, she was generally the same happy, fun, and funny person they had always known. And these moments were within the protection of support for them and for her by others, especially their parents.
They often visited us after she was in the facility and spent time at the facility where she was, with me or a parent present. There was one very disconcerting event. She and our teen granddaughter left on a walk down the hallway while I stayed behind; they were very happy together. After 10 or 15 minutes, our granddaughter returned in tears. As described by the granddaughter, Beverly took a bite of something to eat, did not like it, and spit it out and stormed off. The granddaughter followed Beverly, and tried to reassure her that everything was all right. How that effort caused her to snap at the granddaughter is unclear; there was an angry explosion toward her granddaughter. This unexplained sudden anger had become quite rare at this time and there was no simple intervention. Beverly could not remember it happening, even moments later. But the granddaughter could. I thought later that the only effective preparation might be a role-playing activity, playing this kind of unexpected anger/upset, so that the child/adolescent is emotionally ready. One more time simply stating that their grandmother can suddenly get angry over nothing would be too general to prepare a child.
When faced with explaining to a child or adolescent, resources might be useful. There are materials available for free at the National Institute of Aging. The 36 Hour Day (by Mace & Rabins) has a useful discussion of this issue, including advice about communicating with children and also a chapter addressed directly to them: “For Children and Teenagers.” Organizations for dementia have free information; the Alzheimer’s Association has a free booklet called Parent’s Guide. The Alzheimer’s Society has a long list of useful materials. And these organizations also sponsor support groups that may be helpful. There are dozens of children’s books (fiction and nonfiction) about communicating with children about Alzheimer’s.
Everyone is impacted by the dementia process; children and adolescents need some understanding of what is happening. And that will minimize negative outcomes for them, for us, and for their loved one with dementia.