Tag Archives: relationships with elders

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.


Mothers and Godmothers

Watching a parent succumb to dementia can make even middle-aged children feel like orphans. The disease cuts a cruel path through families and sometimes it seems like dementia made my mother abandon her children. I’m very lucky that Mom selected a wonderful godmother for me when I was an infant. Since my mom can no longer go places, I invited my godmother to the Philadelphia Flower Show. We had a great day.

Between the Pond and the Woods

Philadelphia Flower Show

It seems that 1950’s relationships — like washing machines of that period — were crafted to endure more and last longer. My godmother, Ann, was my mom’s best friend from elementary school to retirement. Few people today manage to bind the threads of their lives together across so many decades of change. Mom and Ann helped each other through the trials of adolescence, marriage, childbirth, motherhood, and professional upheaval.

Ann remembered the  last time I took my mother to the Flower Show. It was about three years ago and even then Mom’s eye sight was diminishing. She could, however, see the bold colors of the giant displays. The vivid reds, purples, and greens boosted her happiness as we strolled through the wild, gorgeous gardens.

Between the Pond and the Woods

The next day, my godmother called Mom to find out about our outing. When Ann asked Mom if she’d been to the Flower Show, my mother said no. She had already forgotten the whole thing. It was painful to realize how quickly Mom’s memories were disappearing. Even a huge event failed to make a lasting impression on her. Nevertheless, thanks to the magic of cameras, I had all the evidence I needed to remember my day with my mother.

This week I took fifty photos of giant sculptures made from orchids, hyacinths, roses, lilies — every flower you know and a hundred others with names you don’t recognize. I have shots of the acrobats that danced above the show entrance and the 100 year old bonsai trees. But among all those pictures there is one I really cherish. It captured the smiling face of my dear godmother who loyally visits with my mom after all these years. She shows us both the deepest kind of love there is. Thank goodness for people who care.