Thursday, April 13, 2017

Talking to Kids about Alzheimer's

My father had a long journey with Alzheimer's that spanned over 14 years. When my Dad started showing symptoms I was a young adult living in another state, focused on my own life, madly in love and planning my wedding.  It took me awhile to take my Mom's updates seriously and to recognize the symptoms.  

The first time I acknowledged the reality that my Dad was changing was during a visit when he kept repeating the same conversation over and over.  He also read newspaper articles and headlines (out loud) repeatedly.  And most alarming at a family function I overheard him talking and realized that he had forgotten that I was there even though I was standing just a few feet from him.  At this point I was newly pregnant with my first baby.

By the time my baby girl was born Dad was clearly confused.  He didn't know where he was or what we were doing, but he was (mostly) content.  He was also a fantastic grandfather.  

My parents came out to help after my daughter was born and he would hold her, love on her, tell me how beautiful she was and remember her name.  

As she grew he celebrated her milestones along with us, rejoicing over her walking, eating foods and generally being an adorable baby.  By the time she turned 3 he was asking over and over when she'd be starting kindergarten since she was so advanced.

When my oldest was little he would read to her for hours.  Repeating the same favorite book over and over didn't bother him in the slightest since he didn't remember that he'd just read it.  They would talk and read in the backseat of my car happily, he thought she was marvelous.

I didn't talk much to my oldest about her grandfather's disease at this point, since she didn't know anything was different or out of the ordinary.

By the time I was pregnant with my second daughter my Dad had slipped quite a bit more.  Multiple times a day he would see my big belly during visits and ask when I was due.  He was sweet and excited for me but becoming increasingly less patient with my 3 year old since he was regressing in his emotional maturity at this point and starting to match hers.

He would get angry with my oldest and had a hard time sharing or dealing with her typical 3 year old behavior.  As a result we had to move Dad to the front seat to keep her safe and make sure she always had mom or grandma with her when grandpa was there.  This was a really tough transition for me and also for my daughter.  She started to realize that sometimes grandpa would react "funny" or "scary" and didn't know why. 

I purchased a couple books around this time to help explain his illness to her.  For the most part they were pretty wordy and advanced so I had to simplify it for her.  It's also tricky because every Alzheimer's journey is different.  Some symptoms are similar but we couldn't relate exactly with the stories in the books.

Still My Grandpa
What's Happening to Grandpa

In time I found that just talking about his disease was easier.  We would talk ahead of a visit (we saw them about 4x a year), during the visit and after the visit.  But I kept the books around so they could grab them for me to read (or read to themselves) whenever they wanted.

How I explained Alzheimer's:

Using developmentally appropriate words I explained that grandpa's brain isn't working well anymore.  That he has an illness that is progressing and parts of grandpa keep going away.  I gave examples of brain-parts that no longer work as the deficits kept progressing such as: his patient part, the part that tells his tummy he's full/just eaten, the part that takes turns, the part that says please and thank you.  Later I had to explain that the part that tells him it's time to use the potty or go to sleep (this was easier to explain as her little sister was potty training around the same time).

I told her that he was slowly going backwards in his brain, that he was getting younger while she was getting older.  

These simple explanations seemed to satisfy my oldest, and later my youngest.

Focus on Strengths:

At the same time we were talking about what wasn't working with my Dad I also highlighted what he could still do.  To focus on his strengths!  What he still tolerated/appreciated: hugs, a picture, reading to him, watching a show he likes, taking a walk on the beach, etc.

I also pointed out what my kids did that Dad loved.  How he lit up when they talked to him.  How he hugged back.  How he smiled whenever they came close.  How he remembered my youngest daughter's middle name (which was amazing!).

Talk about the Past:

Since my Dad was not able to tell them stories about his childhood or mine I filled in the blanks for him.  I told my kids about what Dad used to be like (and I still do!).  Showed them photos, videos, slides and especially highlighted the good memories as well as my Dad's character qualities/personality.

Reassure and Answer Questions:

During our regular conversations about Dad I found that their most pressing concerns were about me.  They needed to hear that I wouldn't get Alzheimer's and leave them.  So I made sure to tell them over and over that scientists are working really hard on a cure right now and that although it will be too late for grandpa it will be in time for me if I was to get the illness.  This seemed to satisfy them.

I had our family participate in a Walk to End Alzheimer's and pointed out all of the people coming together to raise money for a cure.

Remember to:
  • Allow your kids to ask questions freely (or not, don't push the topic if they are not ready).
  • Have time before, during and after visits to discuss what they see and feel.
  • Be honest, if you don't have answers let them know that.
  • Reassure them and point out what they are doing well.
  • If your kids aren't big on talking try using art.  Ask them to draw how they feel, or draw the grandparent, visits, etc.
  • Let them know that it is hard for you too.  Share your feelings so they know they're not alone.  Don't hide all of your pain or they won't learn that it is normal.
  • Take LOTS of photos of your kids with their grandparent.  You can look back on these photos together to remember, reinforce their relationship and to fill in gaps once grandpa is gone.
  • Reach out for help if you need it from a professional counselor or support group.

If you have a parent or loved one with dementia I highly recommend the book "The 36-Hour Day".  This book was very helpful for me to understand what was happening to my Dad, what would be coming and ways to make our relationship (and his relationship with my kids) go more smoothly.

For more on Alzheimers:

Recordable Books Treasured Memories
Goodbye Dad
Visiting Memory Care/Nursing Homes with Kids
Gift Ideas for Loved Ones with Dementia


  1. So well written, Anne. I hope a lot of moms and dads who have a parent with Alzheimers will read and appreciate your helpful tips. So sad about your dad, who I knew so many years ago. He was a sweet man!

    1. Thank you Marmie, I appreciate your kind words.