Why Doesn’t Grandma Know My Name? Explaining Alzheimer’s Disease To Children

I was officially in the “sandwich generation.”  That growing number of people who have responsibility for their own children on one end of the spectrum and aging parents on the other.  And honestly, some days it felt as If I would be consumed by all of the responsibilities. 

True, the juggling of responsibilities and schedules was challenging, but appointments can be changed and most errands can be done at a later time.  For me, the greater challenges were emotional.  Case in point.

My mom came to live with us just after my first son was born.  So, as he grew, she declined.  How painful it was the day I went into the store and purchased a potty for him and incontinence supplies for her.   Another issue though was helping him to wrap his young mind around an adult who needed so much care and attention.  As far as he understood it, adults took care of themselves.  It was children who needed help.

THAT was my entry way into talking to him about Alzheimer’s disease.  It’s different for every child.  There are variables, such as whether or not the affected person lives with the child; how often the child interacts with the person, the extent of their relationship before the illness, and how the disease manifests itself.  I mean, if grandpa is taking his clothes off, wandering away from home, or disposed to fits of rage, then your need to explain is more urgent than if grandpa is in the earlier stages and maybe just a little disoriented or forgetful.

So, here are some suggestion and guidelines as you talk to your young children about  someone who is battling Alzheimer’s disease.

Most children understand simple illnesses like colds. So, telling them that grandma’s brain is sick (like their throat or ears, etc.) will help them.   The tough part is that young children usually get better, so little by little you’ll have to explain that the brain does not get better, but gets worse.  I told my son that he and his grandma would be trading places and that she would become more and more like a child as he grew up.  Just like there were things he didn’t know how to do, she would need help doing things that she used to know how to do, but forgot.

As much as possible and practical encourage contact between the child and the affected person.  Once my son grasped the illness from the “becoming like a child” perspective, he looked forward to painting and coloring and doing crafts with grandma.  It was a great way to keep them both occupied, allow them to spend some time together and enabled me to maybe get dinner going or a load of laundry started.  It is important not to force contact if the child is afraid.  Just look for other ways, if one idea doesn’t work.  We celebrated my son’s third birthday at a pizza place that had all kinds of games and mom enjoyed shooting hoops (from her wheelchair) with the children.  Later on, my son sat on grandma’s lap as she held on to him and I pushed her in the wheelchair.  Eventually, he wanted to push her himself. 

The child also needs to know that grandma, grandpa or whomever the affected person is, still loves him very much, but he can’t explain it like her or she used to.

Encourage the child to ask questions and express their feelings.  They may not have much to say initially, but in time they will begin to open up and talk about it.  Let them know, its okay to feel sad, angry or frustrated.

This is a difficult one.  Explain to the child that YOU love them very much, but that sometimes you won’t be able to spend as much time with them as you’d like to.  Let the child know that it’s a difficult job.  Don’t dump on the child, of course.  But frustration, exhaustion and tears were common in our home and it helps the child if they have an understanding that you are not mad at them, but just trying to juggle it all.  If possible, spend some quality time just you and the child to reassure them.

Finally, take it one day at a time.  Remember, as you do the work of caregiving, you are also teaching your child life lessons about the importance of family, being there through the hard times and unconditional love. You don’t have to be the perfect caregiver or explainer, just be there to answer questions, listen and give a hug when it’s needed.