A Family's Journey to Better Care for People Living with Dementia

I mentioned my grandmother briefly in my last post and I would love to share more about her!  Her name was Mildred and this year she would have celebrated her 101st year around the sun.  She was was the pillar of our family and barrel of fun!  I can see her infectious smile now, dancing in the kitchen singing "If I'd known you were coming, I would've baked you a cake"!  Most of my memories of grandmama Mildred involve her journey living with dementia.  She taught our family so much in the 8+ years she lived with dementia.  Her sense of humor never ceased and was a critical piece in allowing grace to shine bright through it all.  And boy did we need grace - we didn't always get it right.  That's life.  

What I realized after my grandmother passed is that you don't have to always get it right.  Magic happens as you learn from the mistakes, growing relationships deeper in compassion and love.  People living with dementia are just that, PEOPLE.  With a little bit of knowledge and a lot of compassion, we can change the world for ourselves and those around us!  Grandmama Mildred and our family's journey loving and caring for her inspired my career as it stands today.  I hope these lessons learned from Mildred inspire you as well!  

  • Regardless of diagnosis, older people are our elders and should be respected at all times!  When I think about this story, my heart sinks every time and I wish I could go back!  My grandmother lived just a few miles from my childhood home and we would visit her just about every day.  My mom, sisters and I were there one day, I was in middle or high school and trying to tell everyone a story. Of course it was all about me in that teenage moment!  My grandmother kept interrupting me, and after about the 20th time, I scolded her like she was my younger sister. The look she gave me!  I’ll never forget it. It was part shock, part sadness.  It was that moment that I realized dementia does not take away who the person has always been.  She was my grandmother!  How dare I talk to her in that way.  Needless to say, I was grounded for the next few days.  

    Lesson learned: do not treat people living with dementia like children or in disrespectful ways.  As Brian LeBlanc, member of Dementia Action Alliance and living with dementia, coined - "I may have dementia, but it doesn't have me!"
  • Find purpose and meaning for people in everything, it makes a difference.  Early in my grandmother's diagnosis we had to tackle the dreaded task of taking her car away.  More and more she would drive to the grocery store and walk home, forgetting she had driven.  We lived in a small town, so the walk wasn't too far!  But she would get home and think someone had stolen her car.  What a scary thing to experience often!  And we were starting to worry about her safety, of course.  At first, we took the approach that many do - telling her that the car was in the shop even though it wasn't.  Well, that didn't last long and eventually she caught on that we were not being honest!  What did help is giving purpose to why my grandmother didn't have a car anymore.  We connected my grandmother's love for her grandchildren to this difficult transition, sharing that she had given her car to my cousin who was headed to college.  This was in fact the truth!  Even if that wasn't completely accurate, I think in times like this one, it's also ok to stretch the truth a little.  I'm not saying you should make up a huge lie (i.e., her car was in the shop), but expand on something that will help the person find a little more peace with the situation.  

    Lesson learned: use information you know about the person to connect purpose and meaning, especially in difficult times.  Don't tell lies, but expand on their reality so situations make sense.  It won't eliminate the immediate feelings of loss or disappointment, but it might make it a little easier to process. 

As I reflect back, I wish my family would have had some sort of foundational education and training.  Would it have eliminated all of our mistakes?  No!  But it would have helped us understand in the moment and move through the difficult times with even more compassion, skill and patience. If you're interested in reading more about family caregiver education, check out this blog.  

I encourage you to engage with your family or staff, asking for their stories to weave into helpful tips for care partners.  We all have a story to share!  When experience is combined and collaboration takes place, a family or community team becomes so much stronger.  You can also share your stories in the comments! 

Up next in Mildred's lessons - connecting and coping at the end of life.  If you don't want to wait, reach out for a conversation on effective dementia education and training strategies!