Monday, August 29, 2011


You know what I dread more than anything else?

No, it's not Abby's first date (though thinking about that does make me hyperventilate a little). It's not paying for three college tuitions. It's certainly not turning gray (as my children will happily point out, I'm already well on my way).

I dread the first time that I see my grandmother and she doesn't know who I am.

There's no way to know when this will happen, but as her condition continues to deteriorate several years after her Alzheimer's diagnosis, I see that we're getting closer and closer to that moment. For now, she clings to some memories. Not always our names or details, but she knows me and she knows Matt and she even knows the kids. You know, I always thought no one could love my grandmother more than me until I saw my kids get to know her. Abby and Ethan have put their Gigi on a pedestal that can't ever be touched. Remarkably, she lights up when they're around, somehow cutting through the fog that Alzheimer's has poured into her mind.

I know, though, that even the little clarity she has left won't be there for long. She's already lost so much. Every time I talk to her or visit her, I can see the erosion continuing. We've begun preparing Abby and Ethan to understand her confusion. I pray desperately that Aaron will get at least a little time to know his Gigi.

My best childhood friend, Steve, recently lost his father after a brutal fight with Alzheimer's. Before his dad's death, Steve and I were talking and he described Alzheimer's as a hateful disease, stealing the soul of the person we love and leaving their body with us to taunt us every day with what we no longer have. He is so right.

This experience with my grandmother has been so hard, but it's also given me a perspective that most people my age don't have. We're all so busy working, raising kids, squeezing in some fun between grocery store trips and meetings, that it seems like life will be like this forever. It won't, though. Eventually we'll be old too. In all likelihood, if I live long enough I will develop Alzheimer's. Will there come a day when I look at the children I gave birth to and raised and see them as strangers? Will Matt have to spend his days feeding me and making sure I don't wander out of our home? Will I be constantly terrified and confused?

Oh, I hope not.

We all face the probability of contracting Alzheimer's. The longer you live, the more sure it becomes that you will be diagnosed. It will be virtually impossible to live into your 70s or 80s and not have either you, a spouse or a sibling suffer. Is this how you want to end your time on this earth? I know it's not what my grandmother wants. It's not what I want either.

Our family is participating in the 2011 Walk to End Alzheimer's on September 10. Abby and Ethan know that we are doing this walk to raise money so doctors and scientists can work to cure the disease that has hurt their Gigi. For them, that's enough--they are ready to walk all day.

If you would like to donate with Team Gigi, you can go to the team's website here:

and click on General Team Donation. We want to do this event to raise money to help end Alzheimer's, and we also want to teach our children that when there's something you don't like in the world, the first thing you need to do is try to change it.

I would love if the people who have read this blog entry decide to donate, but that's not why I wrote it. I wanted to remind people that Alzheimer's is not a disease that affects only the people who get sick, or even their families. It's a big, scary cloud hanging over every single one of us. This day I dread? It's coming for us all unless we do something to stop it now.


Erin said...

I just donated $18 from our family. You know that the number 18, in Hebrew is Chai, which also means "life". I always give/donate denominations of 18 where appropriate. Love to you and your family.

Sarah said...

You are teaching something priceless. Abby and Ethan will be such strong, compassionate little people with parents like you and Matt.

Bill said...

Nancy, I feel your pain and my heart goes out to you. I have shed many tears over Jean and Pat these past few years. I just put Pat in a nursing home yesterday and I believe that it was harder than death itself. My thoughts and prayers are with you. Bill Grace