Bursack: Kids need support to understand Grandpa’s dementiaDEAR CAROL: My children are in grade school and have always been close to my dad. Now, their grandpa has Alzheimer’s disease and the kids are baffled by his behavior. They understand that he is sick, but sometimes he can be baffling even to adults. How can I help my kids understand what is happening to their grandfather?
By: Carol Bradley Bursack, INFORUM
DEAR CAROL: My children are in grade school and have always been close to my dad. Now, their grandpa has Alzheimer’s disease and the kids are baffled by his behavior. They understand that he is sick, but sometimes he can be baffling even to adults. How can I help my kids understand what is happening to their grandfather? I’m worried about how they will remember him when he’s gone. – Faith
DEAR FAITH: Children often feel guilty for bad things happening in the family, even when there is no logic to their thinking. They will notice your pain and may feel guilty for that, as well, so how well you handle your dad’s changes will likely have an impact on your kids. However, much of how they react will depend on their personalities, combined with information they absorb.
I’d suggest that you try to explain in ways your kids can understand that sometimes, as people age, they can get a disease where their brain doesn’t feed them accurate signals. Most children understand that when we search for a radio station, we can receive garbled chatter when in between stations. Let them know that Grandpa gets similar confused, garbled signals from his brain so his thinking gets muddled. It’s not his fault that the signals don’t get through clearly.
Let the kids help with their grandpa’s care needs if they can. Give them something to do when they visit. Playing musical instruments for their grandpa or drawing him pictures and making little gifts can help ease some tension.
Don’t force the issue if one child easily relates to Grandpa while another child holds back or is even afraid. Encourage the kids to be kind and do what they can, but go easy on them. As you mentioned, it’s hard even for adults to handle these changes.
If your dad acts mean or goes into rages, let the kids know that they can leave. Gently tell them Grandpa can’t help it, but assure them that no one needs to accept abuse. Tell them they can say “I have to leave now” and then they can go.
Please get support for yourself by talking with others who care for a parent with dementia. Online and in person groups abound. If you feel grounded and have good information you’ll be more prepared to help your kids. The Alzheimer’s Association is a good place to start.
I’ve been in your shoes and know firsthand how painful it is for you that your kid’s memories of how their grandpa was before his dementia may be overtaken by current events. We have to accept that. However, do what you can. At relaxed times, remind them about special times they had with their grandfather before dementia set in.
Try to help the kids understand that their grandpa is still the same person. His disease has changed him, but his love for them remains as strong as ever. Dementia can take away communication and evident memory, but it doesn’t change the heart.
Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com.