Tag Archives: caregiver stories

Dementia Informed Families — What do Kids Need to Know?

Kids in dementia-affected families need help understanding the disease, but most educational resources are designed for adults. A touching new website at www.aftdkidsandteens.org is a useful exception created to teach young folks about Frontotemporal Degeneration(FTD), a complex form of dementia.

Between the Pond and the Woods

Although the website was developed by the Association for Frontotemporal Degeneration (AFTD), it could be helpful to young people learning about dementia in general.  Site content is divided into two sections: one part for children aged 4 to 11 — and one part for teenagers. Both include facts about the disease enriched by first-hand testimony from young people dealing with a loved one’s behavioral changes.

Since Frontotemporal Degeneration (FTD) often strikes people who are younger than most Alzheimer’s patients, it’s common for FTD patients to be actively engaged in parenting. When they display disruptive behavior like explosive anger or extreme apathy, it can create real emotional chaos for their children. Any caregiver who has watched a loved one in the throes of a panic attack or delusion knows how such situations can provoke strong emotions — from pity to embarrassment, and even rage. The site offers kids tools that help reduce the traumatic sting of these painful incidents.

One key resource is the site’s compelling trove of written and videotaped reactions from kids who have dealt with the disease. Heartfelt letters remind kids that they are not alone. Hearing the brave, honest stories of other children and teens offers young readers a sense of hope and connectedness. Site content also encourages kids to get involved with a support group — good advice for family members of any age!

To appreciate the power of the AFTD Kids Site, watch the video testimony of a teen who lost her mom to FTD. Olivia G., a 17-year old, talks about how she felt when her mother had uncontrollable outbursts in public. Her video, which also appears on YouTube, will touch viewers of all ages. We know that it’s hard to be calm and understanding in the face of dementia, but Olivia’s words remind us that love and compassion are essential resources for dealing with the disease. She gives us a poignant reminder that we need to react to dementia from a place of deep understanding. Sometimes kids say it better than we can.


Yoga and Dementia Care

Today my mom can barely walk. But thirty five years ago she was a female pioneer, enrolling in yoga classes when few people knew what they were. She started doing yoga when her eldest child left home. It was a bold choice for a small town mother.

Between the Pond and the Woods

Yoga in Times Square

I’m pretty sure that Mom took yoga to quell the first pangs of empty nest syndrome. I had gone off to college and my sister — her “baby” — was already in high school. We lived in a small, traditional town in the Pennsylvania coal region. It was the kind of place where people distrusted any form of exotic behavior. Local opinion didn’t stop Mom, who went as far as visiting the ashram, while mastering downward dog and tree pose. She even met the yogi from India who founded the Kripalu retreat. Today I still wonder what prompted this strange choice from my normally conservative mother. Something about the yogic way of life appealed to her, but she’s long past the point of explaining what it was.

As a young adult I did not want to be like my mother in any way. Of course, we all end up displaying aspects of our parents’ character whether we like it or not. The one thing I did admire was her early interest in yoga and healing arts. I’ve followed her example by studying these practices for the past few years. Yesterday, I pursued that interest all the way to Times Square in New York City. To celebrate the summer solstice, I participated in a giant yoga event. About 11,000 people got down on their mats in streets that were blocked off from traffic. It’s hard to explain how amazing it felt to bend beneath a blue sky with New York neon spiraling around us, an occasional police siren disrupting our peaceful breath.

Between the Pond and the Woods

Yoga acrobats

I wish my mother could have seen it. She laughs at everything these days, but this was truly entertaining. They say the study of yoga is a journey that can change your life. When I combine that practice with the experience of caring for my mom, I begin to see life as one long phase of transformation.