Tag Archives: alzheimer’s

When a picture’s more than a picture

We live in an age where people are increasingly over-sharing, over-posting, over-exposed. And — I admit — I’m as guilty as the next person. I am an open book. Too open? Maybe. And, my greatest weakness is posting photos (upon photos … upon photos … upon photos) of my family’s adventures. I’ve heard, more than once, from people in various areas of my life to “put down the camera” and “just enjoy making the memories.”

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And I do that — sometimes. As I vowed to Mr. B in that day we officially joined our lives together in 2012, there are some things I save just for us. But, there’s lots of other stuff I share, quite often.

There are a lot of reasons I take — and share — as many photos as I do.

  • I’m super close to my family — just not geographically. It hurts my heart to know they’re missing out on so much of my kids’ lives (and that my kids are missing out on experiencing the true, crazy joy that makes up their Up North family), so I share lots of photos in hopes that it makes up for a tiny bit of the distance.
    whole family
  • I know, all too well, that there’s going to be a day in your life that you only have pictures left. As I was updating our family photo wall the other day, it struck me — directly in the tear-makers — that I’m regularly going to be changing out our family photos and updating pictures of Little Miss and Mister Mister, but I’ll never have new photos to post of Penelope Joy. All I have of her are the pictures I took in the (way too short) time period of 38 days. And, I’ll tell you what, I should have taken more.

    Family Photo

    Our final family photo with Penelope Joy.

  • I think, perhaps one of the most frustrating things I’ve heard (and read) is that “you should put down the camera and just enjoy making memories.” Here’s the thing — memories aren’t forever. And they certainly aren’t guaranteed. My dad died at 63, having no idea who most of us were. Literally, all he had were pictures — and all we have, now, are pictures. My kids won’t know their Papa except through the stories I share and the photos I show them. Younger onset Alzheimer’s disease stole my dad’s memories — and so much more — from him, and from us. But, I’ll be damned if it’s going to take my pictures.On my wedding day with dad
    So, next time you’re looking at my feed or my page and you think to yourself, “geez, she takes a lot of pictures,” maybe your second thought will be “isn’t it great that she’ll always have those photos to help her treasure those moments.” If that’s not your second thought, I invite you to close that tab and look away — you don’t have to look at them. And you also don’t have to worry if I’m living enough in the moment. Trust me I am. I’m savoring every single, beautiful second.
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Enjoying Laughter — Even Through Tears

This originally appeared on the Fifth Third River Bank Run Charity Partner Blog.

In life, there are certain things you take for granted — at least I always have. Like the sun rising in the morning and setting at night. And Michigan’s weather being unpredictable. Most importantly, I’ve always counted on big smiles and big hugs from my parents when I walk through the door.

But since my dad was diagnosed with Younger-Onset Alzheimer’s disease a few years ago, the guarantee of big smiles and hugs when I walked in the door didn’t exist anymore. Because one day — and there was no telling when it would be — Dad wouldn’t know me any better than a stranger walking in off the street.

Well, that day finally came not too long ago. While I did get my big hug, smile and “I love you” when I returned home for a visit, the next morning my dad didn’t know who I was.

I was sitting at the table next to my husband, Bobby, eating breakfast when I heard my dad’s whisper — which is more of a stage whisper than an actual whisper. “Who is that?” he asked my mom.

My mom, trying in vain to keep me from hearing the conversation, was whispering back. Dad, of course, couldn’t hear her. And the response “that’s Kimi” rang loud and clear in the silence of a house not yet fully awake. The rest of the conversation? Went a little like this:

Mom: That’s Kimi.
Dad: Oh! She looks like someone else.
Me, trying to bring a little levity to the situation: I hope like someone pretty.
Dad: No.

And we all laughed.

You see, I could let my tears flow because my dad didn’t recognize me. And I’d be perfectly within my right to do so. I also could be hurt by him saying I don’t look like someone pretty. Instead, I smiled. And I laughed when he did — along with my mom and my husband. Because it’s uncomfortable. But, let’s be honest, it’s also a little funny. Besides, Dad can’t help it because it’s the nature of this horrible disease.

Don’t think that because we laughed the seriousness of the situation passed us by. Because it didn’t — I definitely had to fight back some tears. And, let me assure you of this: when your dad doesn’t know who you are, a piece of you breaks. And I don’t think it ever fixes itself. Because, even though he might know you the next time he sees you, there always will be that first time he didn’t recognize your face. Plus, you’ll always know it will happen more often as the disease continues to claim more and more of his brain.

But crying in front of him, as it’s happening, does nothing other than make him feel bad — and turn my face all blotchy. Those tears? They’re saved for the shower or the drive home.

So we laughed. Because there aren’t many joyful moments. There is a lot of sadness and worry, anger and fear. So when those silly moments happen with my dad, I embrace them. Even if it means laughing at my own expense.

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Dad and me — then and now

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Because Babies Should Have Grandpas

Saturday is the Fifth Third River Bank Run. The 25k is the one local race that still remains on my bucket list. This was going to be my year to cross it off the list. More than the fact that I was ready, one of the charity partners is the Alzheimer’s Association of West Michigan. And, as you know, raising awareness and trying to fight this awful disease is near and dear to my heart. So, this race? This was my chance to tell my our story and do good while doing something that brings me peace and happiness and pride.

But then, something incredible happened. And Mr. B and I are going to be parents. In October. I’m 19, almost 20, weeks pregnant. (Still waiting for that “glow” to appear, though.) And, while I’m incredibly blessed to still be able to run while carrying Pickle, I realized during the half marathon a couple weeks ago that running long distances like that while pregnant is hard on my body.

Finish Line

Exhausted as I come up on the finish line during the Gazelle Girl Half Marathon.

And I just couldn’t see myself happily — healthily — making it through 15.5 miles. So, with a heavy heart, I switched to the 10k.

But I didn’t quit.

I will be there. Shoes will be laced up. Bondi Band will be on. Mr. B will be on the sidelines. Because this run is important. And it’s so much bigger than this one pregnant gal carrying herself over 6.2 miles to cross the finish line.

This run is about babies. And parents. And siblings. It’s about family. And friends. And caregivers. It’s about loved ones. And people we’ve never met.

This run is about every single one of us.

Because Alzheimer’s Disease knows no strangers, and it knows no boundaries. And, not to scare you, but the situation isn’t getting any better as time goes on. That’s why fundraising runs like this one are so important. Because, one day, a woman — not yet 30 years old — will see a short text on her phone from her mom. A text confirming a diagnosis she so feared: “A.”

“A” is for Alzheimer’s.

“A” is for Alzheimer’s.

“A” is for Alzheimer’s.

And she realizes that no matter what she does or how hard she fights, her dad is going to slowly forget who he is, forget who she is. And he’s going to become a shell of the person he once was. And her family will never, ever be the same. And it’s going to break her heart as everything she knew with 100 percent certainty fades into a world of gray. And she’ll have to stop thinking about the “what shoulda beens” and start thinking about the “what’s gonna bes.” Because all she can do is move forward.

To put it simply, Alzheimer’s Disease changes your life. Nothing is ever the same for the person diagnosed with this disease and for the people who love them. And, once you hear those words, “Alzheimer’s Disease,” there’s no going back — and going forward is hard. But all you can do is wake up every morning, smile and thank God for the moments you have together and get on with your day, taking it all one step at a time — together. ~”Running for a Cause

I quickly realized that I needed to talk about it. I needed to tell my story. Because that is how I fight. And unless I fight and raise awareness and raise money, so many other people are going to feel this pain. And sadness. And anger. And fear.

So many people are, like me, going to wonder whether their soon-to-be-born baby will ever get to know his/her grandpa the way he should be known — as the funnest Papa any kid could ever have (just ask all of my nieces and nephews — they’ll tell you). Luckily, and thankfully, Pickle will get to know his/her Papa. It will just be oh-so different than the picture I used to have in my head of my child playing with Papa in the orchard.

So, Saturday, when I head out on that course, I won’t be running for myself. I’ll be running for my dad. And for my mom. But, mostly, I’ll be running for Pickle.

Because babies deserve grandpas.

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Wearing Purple for a Cause — Alzheimer’s Action Day

Today is Alzheimer’s Action Day. So I’m wearing purple.

wearing purple for a cause

Wearing purple doesn't build awareness if you don't talk about it.

But, wearing purple doesn’t mean anything if I don’t talk — or, in this case, write. People don’t talk about Alzheimer’s Disease. Or, at least, they don’t talk openly. It’s almost something they’re ashamed of, like it’s their fault — caregivers and those with the disease. Many suffer in silence. They don’t talk about the hurt, the fear, the anger, the doubt, the hate, the love. They don’t talk about the changes and the surprises — both good and bad. They don’t talk about moments of clarity and moments of complete hopelessness.

But I refuse to be silent. I want people to understand this disease, to know what it is and how it affects both those who have it and those who love the people who have it. I want people to know that Alzheimer’s Disease is more than a sickness that causes people to forget where they put their keys. It’s a sickness that robs people of the things that make them who they are; it robs people of the ones they love.

Alzheimer’s Disease is hard to understand, but I want you to know that it:

  • Turns people you’ve known your entire life into someone you can’t recognize, their personalities shifting and changing, turning love into hate and laughter into tears.
  • Steals a person’s ability to function normally in an otherwise-simple world: Buttons become impossible obstacles to getting dressed in the morning; coats become straightjackets, twisting and knotting and trapping the person inside.
  • Takes a person’s life-long talents and throws them away, a screwdriver and screw an impossible task; numbers on a piece of paper becoming swirling, twirling gibberish.
  • Robs people of their ability to recognize the people they’ve loved their entire lives, welcoming in fear and insecurity whenever a “new” face appears.
  • Makes it really difficult to love someone — even when you love them so much it hurts.
  • Has the potential to tear families apart — guilt, jealousy, anger, fear wedging their ways in the cracks developing between even the closest of family members.
  • Creates paranoia where love should be, builds walls where open arms should be.
  • Raises new questions every day — before you can begin to answer yesterday’s questions.
  • Puts a lot of stress and pressure on the caregiver — particularly in the case of a spouse, whose own hopes and dreams of a forever-partner came crashing down with the diagnosis.
  • Requires you to re-evaluate your goals, your plans, your dreams. Things you’ve counted on your entire life — your father walking you down the aisle and teaching your children how to fish, your mother showing your children how to bake, your husband celebrating retirement with you, your wife holding your hand as you walk down the street into old age — cease to seem possible.
  • Doesn’t only affect the elderly. Symptoms of Early Onset Alzheimer’s Disease can start appearing in your 30s. It’s not something relegated to nursing homes — it’s something that also can affect people in the prime of their lives.
  • Shows you people’s true character. Do they run and hide? Do they stand up and fight? Do they turn their backs? Do they love, unconditionally? Do they find the blessings — even in the biggest messes?

But, like anything, there are shining moments of light even on the most difficult of days. You see, Alzheimer’s Disease also:

  • Has the ability to bring people together, uniting against the disease that’s all-too-quickly stealing someone you love from you.
  • Makes you appreciate every single second of your life — never knowing when the rug’s going to be ripped out from under you.
  • Helps you find the humor in the darkest of days, recognizing the healing power of sharing laughter and love with the other people in your life — even if most people would find your laughter inappropriate.
  • Reminds you how very blessed we are to have people in our lives who love us, people to stand beside us and people to hold us up.
  • Shows you the true meaning of love, the true meaning of hope and the true meaning of “I will always …”
  • Gives you the opportunity to re-examine your life and figure out what’s truly important to you. Suddenly, a dateless Friday night doesn’t matter because you get to go home and have a cup of tea with the people you love, the people who may be slowly slipping away.
  • Allows you to let other people in. Because, while this disease can build walls, it also can knock them down. Recognizing the importance of building yourself a support system is key, and asking for help is OK. These times, these trials, are when people can really shine.
  • Teaches you humility, understanding and compassion.
  • Gives you the ability to dig deep down inside yourself to find a strength you didn’t know existed.

There is no cure for Alzheimer’s Disease. There are drugs that can help slow the progression of symptoms of the disease. But, inevitably, the disease will slowly steal all the pieces of someone’s life until there’s no life left in them. Research, studies, trials — these things are key to figuring out how to stop this disease from stealing any more precious memories and important moments. We must continue talking about it — educating each other. It’s important the people understand this disease so they realize that there isn’t shame in it and we can’t hide because of it. We must talk about it so people understand it, so they see the importance of the research and they appreciate the difficulties of not only having Alzheimer’s Disease but of loving someone with Alzheimer’s Disease. Alzheimer’s Disease has a face; it has a name. It’s not just a list of symptoms, it is a person and a story. And these stories need to be told.

My final message? To put it simply, Alzheimer’s Disease changes your life. Nothing is ever the same for the person diagnosed with this disease and for the people who love them. And, once you hear those words, “Alzheimer’s Disease,” there’s no going back — and going forward is hard. But all you can do is wake up every morning, smile and thank God for the moments you have together and get on with your day, taking it all one step at a time — together.

End Alzheimer's

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