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Talking to the grandchildren about dementia

by Carol Bradley Bursack, Editor-in-Chief

Children often suffer silently as they watch a grandparent with dementia decline. Their parents are busy and often frustrated and sad, so kids can feel that they would only add to their parents' burden if they were to show their despair. However, children need ongoing support, just as their parents do. As adults who care for two or more generations, commonly known as the sandwich generation, we are challenged to help children understand that their grandparents still love them as much as ever, no matter how much the dementia has changed them. We are challenged to help the kids cope with the loss of their grandparent as he or she once was, and even help them learn to care for their grandparent to whatever extent they are able.

After my dad came out of brain surgery with severe dementia, one task we had to face was to let the grandkids know that their beloved grandfather was irrevocably changed. Grandpa would act "strange." Grandpa would often sleep a lot, and may not know they were present. Grandpa would be, different - even embarrassing - to sensitive young people, because of his injured brain.

Some types of dementia present instant change

While most dementia, such as Alzheimer's disease, is slow to develop, Dad's dementia was immediate. He'd had a brain injury during WWII, and though it was severe, he did recover. He had residual issues during the decades that followed, and needed medication, but after regaining his abilities to walk and talk, Dad functioned quite normally. However, with age came complications. Fluid was building up behind scar tissue in his brain. The doctors said that a shunt inserted into Dad's brain would drain the fluid harmlessly into his abdominal cavity. Generally, this is a safe and effective surgery.

For whatever reason, the surgery failed. The sight of Dad's hopeful smile and the reassuring gesture he gave to the family as they wheeled him off to surgery is an image that remains fixed in my mind. That was the last glimpse I ever had of my dad as his "normal" self.

There's no way to know exactly what went wrong. The surgeon could have made a small error, the scar tissue could have been more severe than expected, the anesthetic could have been to blame - whatever the cause, Dad came out of surgery a changed man. We spent the next decade trying to figure out "where" Dad was mentally, and trying to determine what he was feeling and thinking, so we could help him have a decent quality of life.

For grandchildren who were used to this gifted man as their grandfather - the man who patiently played chess with my oldest son and spurred his interest in science, the man who spurred my youngest son's interest in words and music - I knew that this change would be devastating.

It was. The shock on my son's faces when they saw their grandfather for the first time after the surgery will also remain forever fixed in my mind. Their pain and confusion were palpable. As well prepared as they were - and I had done the best that I could - they weren't really prepared for what they saw. All I could do was support them in their pain.

With most dementias there's time to help children adjust

When Alzheimer's or Parkinson's disease is diagnosed, there is of course the initial shock that something is wrong with a grandparent, and that negative changes in health will occur. Still, there is time to teach and coach a youngster.

Currently, there is a great deal of national attention focused on these diseases as part of our "silver tsunami," the label popularly given to the rush of boomers just turned 65, and the ensuing pressure on our health care system because of problems associated with age. This attention means that far more educational resources are available to the public. The Alzheimer's Association and the Alzheimer's Foundation of America are two excellent resources for educating whole families.

Still, children need a special approach. Indeed, very young children can take on guilt feelings, as they often do if a parent divorces, gets ill, or dies. Yet, often children don't discuss their feelings with their parents. Teenagers may be even more prone to burying their feelings, as they can sense the distress of their parents and feel they should handle their own problems. Add to that how busy our world is today, and the fact that both parents may have jobs outside of the home, and teens can feel isolated, with no place to turn.

I'd like to think that school guidance counselors are trained in helping these teens, but I haven't seen evidence of this yet. Perhaps counseling teens who have parents or grandparents with dementia will become part of the counselor's training in the future. We can hope.

Having more time to help the youngster adjust is good, but still, the child may not be capable of grasping the changes the grandparent will likely exhibit. He or she may stay in denial, just as adults often stay in denial. So, what do you do?

Dementia help for children and teens

There is no magic formula. Some children are more resilient than others. Some are more able to commiserate with the needs of a disabled person than others. However, I do have some suggestions.

  • Shortly after dementia is diagnosed, start taking the children to nursing homes to allow them to communicate with elders. The elders they are involved with don't all have to have dementia. Just show the kids that everyone is different, and that they can make a positive difference in the life of any elder, just by being friendly and not acting afraid. Expect some resistance at first, and don't expect immediate learning. Go slow. But do try to get the youngsters, no matter their age, into a setting where they can see that aging people are still people with needs. Help the kids learn proper approaches to elders. Help them learn how to help.
  • Whether the dementia is slowly developing or an immediate blow, as in the case of my dad, suggest the kids use their talents to entertain. My kids brought their musical instruments to the nursing home and played for Dad. Dad loved music and the times we did that had a party atmosphere. Other elders, as well as staff members, even stopped by the open door to look and listen from the hallway.
  • Ask younger kids to draw pictures for their grandparents and present them. If possible, have them do this as an art project with the grandparent. Many people with Alzheimer's love art projects and kids can learn from them. The kids and elders can bond and everyone can feel useful.
  • Bake treats with the youngsters and let them present the treats to the elder.
  • Expect reluctance when you suggest a trip to see the grandparent, especially after changes become dramatic. It's okay. Let the youngster know that you understand how hard it is. Above all, don't lay guilt on them if they don't want to visit their grandparent. If a few times they refuse, let it go. Don't make visits too frequent, unless the child wants to go. But do insist on a few visits, so changes aren't shocking when the kids do see the grandparent, and also this shows the elders that the children still love them.
  • Some people feel that kids should be allowed to "remember the grandparent as they were." This is an individual decision, but personally, I feel that letting the child be involved during the decline is more important. This is an important learning experience about life in general. Part of growing up is accepting the hard choices, the unpleasant realities, and yes, the tragedies that accompany life in general.
  • Remember that very young children, such as toddlers, may bond very well with someone who has dementia. Young children don't have preconceived ideas about how the elder should act. However, be alert, as the elder may strike out or do something out of character if paranoia, or some other aspect of the dementia, is in the full-blown mode. To be safe, don't leave them alone together.
  • Buy books. Lots of books. There are many picture books available at your local bookstore and online. One I reviewed and thought absolutely wonderful is "Wilfrid Gordon McDonald Partridge" (Public Television Storytime Books). A quick search on Amazon.com brings up many other excellent choices, including "Striped Shirts and Flowered Pants: A Story About Alzheimer's Disease for Young Children" and "Always My Grandpa: A Story for Children About Alzheimer's Disease." One that seems appropriate for older children is "If I Forget, You Remember." Just do an Amazon.com search and you'll find others, as well. None of these books were around for my kids, but I do think they'd be helpful, particularly for the very young.
  • For older kids, a few counseling sessions with a paid counselor may be in order. Much depends on how close they've been to the grandparent.
  • Most important throughout it all is open communication with your youngster. Talk about your own confusion, your grief, your frustration and your anger so they know that it's okay to have those feelings. Just don't present these in a way where the child feels he or she must "fix" your problems. Share your feelings. Tell your children that anything they feel is okay, and that it's better for everyone if they talk about how they feel.

Losing a grandparent to dementia can be worse than losing a grandparent to death. It's harder to understand. Be patient. Communicate. Ask for outside help. This is one tough journey.