An Alzheimer's Post

"We try to make some sense of it, this family of ours.

We try to come to terms with this disease that just devours.

We wished that you were back with us, just as you used to be,

But we know that all that's left for us is some sweet memory"

-Sometimes, Charlie McGettigan

This is a post about Alzheimer's, one that has been on my mind for quite some time.  It's highly personal, but I think it needs to be said.  Since writing has always been easier for me, I thought this would be the perfect outlet.

I'm not going to tell you about the hell we've been through because, chances are, by now you've heard our story.  You've been to our annual fundraising event or seen some of the media coverage our family has received.  Better yet, you've been that shoulder to lean on when we reached our lowest points.  So I'm not going to rehash all the details of this heartbreaking battle.  Instead, I thought I'd share with you what I've learned and where I stand some 8 years after the initial diagnosis.  

The truth is, Alzheimer's scares the hell out of me, and it doesn't even matter how old, or in my mom's case, how young you are.  It's the hardest thing our family has ever had to deal with, but it has brought us closer in ways I never could have imagined.  I've always been envious of people with large extended families, but the closeness I have gained with my immediate family is irreplaceable.  And I owe Alzheimer's for giving me that.

I've always been a daddy's girl, but Mom was the one I'd call up just to chat.  Now, it's Dad I call when something good or bad happens.  It's his advice, approval, and opinion I seek.  I'm so grateful for that.  He continues to amaze me with his unwavering love and dedication to our family.  He is our rock.

Alzheimer's has also strengthened my bond with my brother and sister-in-law.  Growing up, my brother and I were always close.  We played sports together and swam in our pool.  It didn't matter that I was his little sister, he let me in "the cool group."  Nowadays we go to dinner, watch the Bruins, and just hang out.  When he brought my now sister-in-law into the family, it was like a missing puzzle piece.  She just fit.  She's been so supportive during this whole thing, and I can tell it pains her to go through this just as much as it does us. 

And then there's my husband.  He became part of our lives only a few short years before Mom was diagnosed.  He didn't sign up for this, but he has been by my side every step of the way.  He'll never realize how much strength I draw from him.  He hasn't taken his Alzheimer's bracelet off since this all began.  But at the same time, it breaks my heart that he didn't really get to know my mom before the word Alzheimer's.  Dan and her would have loved each other.  I can just picture them talking about coupons, playing Boggle, or rolling their eyes at something I've said.

Throughout this disease, I've learned that true friends will always be there for you no matter what.  Each year, my friends trek out to the Alzheimer's Walk in Boston, make donations, and come to our event.  They always ask how Mom is doing.  And they sport their Alzheimer's bracelets in different ways.  Some have theirs on their key-chains or looped around the gear shift of their cars.  These simple things mean the world.

In all honestly, I don't talk about these deep rooted issues often.  I don't talk about what it feels like to lose the mother you've always known and have a completely different person sitting before you.  I've been strong for so long, but every now and then, I break.  In the beginning, our family struggled just trying to deal with each stage of this disease that it's only been in the past few years that I've had time to reflect on this journey.

I have good days and bad days, but not a day, or an hour for that matter, goes by where I don't think about Mom.  This disease is all-consuming.  I especially think about her on lazy Saturdays, wishing I could call her up and ask her to go shopping.  I think about her as we start to plan a potential kitchen remodel.  How she would have loved to help us with this project.  I think about her when I watch Dancing with the Stars, one of her favorite shows before she got sick.  And I think about her all I pull on one of her cozy sweatshirts I've stolen out of her closet.

But I think one of the hardest parts is when I see something random that reminds me of Mom, and I am overcome with sadness.  A few weeks ago, while in Staples, I saw a display for post-its and a wave of emotion hit me.  You see, every Christmas, Mom would fill a box with stationary supplies, wrap it, and put it under the tree.  I always loved school supplies, so it was always one of my favorite gifts.  And every Christmas since she's been sick, that box has been missing under the tree.  That little display brought it all back.

I also think that's what bothers me the most - thinking of everything that she's missing out on.  This is the point in my life where we'd be friends.  We would have survived the teenage years where I wasn't always the best daughter.  In fact, it wasn't until I went to college that I started to realize just how much she meant to me.  I didn't adjust well to college at first, so I went home every weekend.  I didn't realize it at the time, but a friend recently pointed out this allowed me to spend so much more time with Mom that I otherwise wouldn't of had.  That time means more to me than any college experience could have.

Despite it all, there is joy too that comes with this disease.  Mom still recognizes us when we visit.  Her eyes light up when she sees us.  She may not be able to talk, but I know she feels our presence.  When she sees Dan, she lights up even more.  I think it's her way to show her approval and how happy she is that we found each other.  But truth be told, we're not special.  Mom is the hero.  The little things she does reminds us what life is all about.  If you put your face next to hers, she'll give you a kiss.  That's always the best part of my week.

Recently, Mom has been hunched over in her wheelchair, unable to really sit up straight.  When Dan and I went to visit her last weekend, the nurse said she's been having trouble sitting up straight for the past few days.  It broke my heart to see her that way.  I couldn't even look into her eyes.  

So we sat, and I read to her from a cooking magazine.  I talked to her about different recipes I'd like to try and spoke of the past.  I told her "remember when" stories about our trips to Hometown Buffet, reminded her of her love for beets (eww!), and told her how I wanted to try to make her famous potato and hot dog dish for dinner this week.  As I spoke to her, she slowly started to sit up on her own.  After a few minutes, she was sitting straight up in the chair, smiling at us.  The nurse actually came over and asked us if we had adjusted her and we said, "No, she did it on her own."  "She's listening to you," the nurse said, "She knows you're here."  It was incredible.

Mom used to always tell me, "When you get married and you have kids, then you'll know."  Well, I don't have any kids yet, but I know.  I get it now.  I feel it in the love I have for my niece.  I see it in the love my friends have for their children.  And I suppose if and when we do have kids, I'll get it even more.  I just hope she understands that her words have not been lost on me.

I used to pray for a miracle and that a cure would be found: that it was a misdiagnosis and Mom could somehow be healed. But that day when Mom lifted her head and smiled - that was miraculous. The miracle was in her eyes. And I suppose it's been there all along. 

Be well,