Tag Archives: alzheimer’s disease

Grief After Another Goodbye

I feel like most of my posts of late have started the same way:

Hello, readers, it’s been a while. So much has happened since I last wrote.

I’ve seriously started about 17 posts in my head. But by the time I got home, I forgot half of them. The other half? Well … they didn’t feel “right.” So, let me start by saying this:

On Oct. 21 — four days after the anniversary of Penelope Joy’s death — my dad left to join his darling granddaughter. We knew he was going to die. And we knew it was coming soon. But, that doesn’t make it any easier. In some ways, it makes it harder — we’ve been saying goodbye for a long time. In some ways, it makes it easier — because we got to say our goodbyes.

Living the rest of my life without my dad present … well … it makes my heart heavy. He was my roots — along with Mom, of course. But, in a way, he was my wings, too. Always there for an encouraging word: “Be yourself. Ain’t no other way to be.” Always there for a hug – boy did he give good great hugs. He was also pretty good about calling all of us on our crap — and making sure we all laughed while he did it.

Dad

Dad being silly. Also known as “Dad being Dad.”

And I miss him. Every single minute. And I wish he were still here. But not just for me.

Let me tell you: losing a parent when you’re pregnant is pretty awful. Because I’m not only mourning for me or for right now. I’m mourning for all of the “coulda beens” and “shoulda beens.” And, if I were being completely honest, I’d tell you that every time I look at my nieces and nephews I get a little jealous on behalf of my unborn Sprout. And when I see pictures of my siblings with their kids and Dad, part of my heart hurts. Because those kids all got to have a Papa. And they all got to know his twinkling, mischievous eyes — and the way he’d smile just so before saying or doing something he knew would embarrass them. And they all got to be scooped up in his arms and given a big ol’ hug. And they all knew that he loved them to the moon and back.

But Sprout? All she’ll have is stories of a man she’ll never know. And no matter how many times we tell her how much her Papa would have loved her (because I know, without a doubt, that he would have), he’ll remain a ghost.

Sprout will be hearing stories about people who, to her, will only ever exist in the abstract: her strong, loving Papa and her feisty, fighting older sister. To her they’ll be no more than characters. But to me, they’re the biggest losses in my life so far. And the last two people I think about every night before I go to sleep — except on those nights, of course, when Sprout is using my internal organs as a punching bag.

I still grieve for Penelope Joy every day — sometimes in little ways, sometimes in big ones. The grief isn’t like it used to be, of course. Like, every time someone in my life has a baby girl, I feel sad — no matter how happy I am for that person. The fact that I’m pregnant with a little girl of my own only slightly diminishes the sadness. Because I miss my Penelope Joy. And Sprout is not a replacement for her. Penelope Joy will always be my oldest daughter. But the sadness doesn’t always bring tears.

And I imagine I will mourn the loss of Dad every day, in little ways and in big ways. And every time I see pictures of grandpas and their grandbabies, there will be sadness. And it’s OK. Because grief is OK. Some other things about grief? Well:

  • There isn’t just one kind of grief. There are different kinds of grief for different types of loss. And the grief I feel about Penelope Joy’s death is very different than the grief I feel about Dad’s.
  • No matter what they say, no one knows your grief. Because grief feels different to every person — and it shows itself differently, too. They may have experienced a similar loss. But they cannot know your grief. (That doesn’t, however, mean that they can’t empathize or offer comfort.)
  • There isn’t really a wrong way to grieve — just as there’s not a right way. Some people don’t grieve with tears or any kind of outward expression. Some people go through boxes upon boxes of tissues. Some people keep busy and keep moving. Others can barely hold themselves together. It is no one’s place to judge another person’s grief.
  • Grief is not a “feeling” that ever goes away, like pain or fear or, even, sadness. It is always, always there — maybe not always noticeable, but always there. Sometimes it’s a quiet fall drizzle, just dampening the leaves enough to know it’s been there; sometimes it’s a raging thunderstorm with rains so fierce they threaten to wash away everything you hold dear.
  • Grief doesn’t take the place of other feelings and emotions. It can live as nicely beside happiness and joy as it can anger and sadness.

That’s where I am now. Taking the grief alongside the happiness. Because my life? It is full of wonderful things. Like this growing Sprout — who keeps getting happy, healthy reports from doctors. Like my family — who all have done what we do best: love. Like our crazy dog — who brings laughter into our life daily. And, of course, like my Mr. B — who loves me (even more than he should sometimes) and is never afraid to show it.

Quote about grief

 

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On Finding Peace with Death

I’ve been quiet. Really quiet. For several reasons.

Work has been busy. Really busy. Good busy. Exciting, new, challenging busy. But busy nonetheless.

More than that, though, there are a couple of things on my mind that are quieting my muse.

Pregnancy. It’s different this time. I spent much of the first trimester nauseated. And I’m still feeling exhausted. Yet, many nights, unable to sleep. There are, understandably, a lot of mixed emotions and feelings with this pregnancy. Mostly, joy and excitement. But Mr. B and I both look to each other for constance reassurance and support as we continue to work through nerves and uncertainty as the pregnancy continues. (So far, all looks good, though, and every ultrasound so far has brought positive news.)

But, mostly, it’s my dad. You see, my dad? He’s dying. And it’s not in the all-of-us-are-dying sort of way.

I mean, he probably won’t die tomorrow. But, he won’t ever get to meet Sprout. And Sprout won’t ever get to meet him.

The nurse thinks that, before long, Hospice will be called in. And then? It’s a matter of time.

So, this post, it’s not one of my more uplifting, optimistic posts about life and love. I mean, it is — in a way. But, it’s about death. And I am crying my way through writing it.

Death

Penelope’s death changed me in many ways. Not the least of which is in how I view death. Some people may think I’ve become colder, more indifferent when death comes knocking.

Rather, it is quite the opposite.

When Penelope Joy died, something inside me shifted. Her death was … devastating … in a way that only losing your child can be devastating. It forever changed me. It changed my life as I knew it. And it changed Life as I knew it.

It also changed Death.

Deaths of people I loved have, in the past, made me angry at the world for stealing yet another person from me whom I loved. Dearly.

When Penelope Joy died, though, I learned something critical. Critical to my survival. And critical to my world view. Death is part of life. It is a beautiful part of life. Yes, it can be tragic. It can pull the ground right out from under your feet, leaving you trying to regain your footing for weeks, months, years. Forever.

But, as Mr. B and I held Penelope Joy in our arms as she took her last breaths, I have never felt more at peace, or more reassured, than I did right then. Her death released her from a suffering she could only know in this world. And, in a way, it released us as well. Watching your daughter struggle day in and day out is heart-breaking. It is exhausting. And it can destroy you. Knowing that we were able to send her out of this world in peace saved us.

Would we have done anything in our power to save her life? Yes. Absolutely. We’d have gone to the ends of the earth and spared no expense. But when it became clear over and over again that all we were doing was extending her suffering for our benefit, letting her go was the only choice we could make. It was then that we learned a valuable lesson. It was then that we truly, truly understood the sacrifice of parenthood.

It was then that we understood Death.

And I think that’s why the looming death of my dad has not destroyed me. Am I sad? Terribly. Do I cry? Often. Do I wish I could spend every waking moment by his bedside — soaking up as many glances into his sparkling blue eyes as possible? 100 percent yes.

But, in a way, Alzheimer’s disease took my dad from us a long time ago. When he was diagnosed, he lost his will to fight. He gave in to the disease, and it quickly obliged — taking from him every piece of the man who was my dad.

We are left, after a 30-some-day free-fall into the abyss of Alzheimer’s disease, with a dying man, unable to form a real sentence, unable to get out of bed, unable to recognize most of us. He is not the man who raised me. He is not the man who, just 10 months ago, glowed with excitement at meeting my precious Penelope Joy. He is barely even a shadow of that man.

Grammy and Papa with Penelope Joy

Dad couldn’t stop grinning any time he was near Penelope Joy.

IMG_20131001_162908_403

This will forever be one of my favorite memories of my dad and Penelope Joy. And I will carry it with my in my heart. Always and forever.

Dad’s death, whether it happens before I hit “Post” or in a few weeks or in a couple of months, will set him free. While he was still able to form thoughts and sentences, we all knew he hated what the disease was doing to him. We all knew he didn’t want to live like this.

So, when Alzheimer’s disease does to him what it does to every single person* who has the disease, my dad will finally be at peace. Like Penelope Joy, he won’t suffer anymore. And he won’t be living a life we all know makes him miserable.

And there is comfort in that. And there is peace.


*I want to take this opportunity to provide just a little education about Alzheimer’s disease. It is the sixth leading cause of death in the United States. There are approximately 500,000 people dying each year because they have Alzheimer’s. And every person — every single one of them — who is diagnosed with Alzheimer’s disease will die with it. There is no cure. There is no treatment. There are a lot more eye-opening statistics where these came from. Please take some time to learn a little more from the Alzheimer’s Association

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On Being There

When I wrote that poem last week about Alzheimer’s disease, I was in the middle of a pretty bad spot in dealing with Dad’s disease. It’s hard to watch him get worse every single day — with no end in sight to his decline. He will not get better. Not even before getting worse. He will continue to decline. Mom’s life will continue to get harder as she struggles to reconcile the man she fell in love with with the one who angrily greets her every day. For better or worse, indeed.

I was shocked, myself, when Dad’s anger turned to me (and some of my siblings). The last couple of times I visited, I can’t even count how many times I was called a liar. For what? I’m still not sure. Or asked what I was doing there. Dad’s eyes used to sparkle, a smile spreading across his face when I visited. Now, I’m lucky if he’ll talk to me. Dad’s birthday was last Friday, July 4. So, on Thursday, I took the day off work to go spend the day with him — and with my mom. It was a visit like so many these days — walking on eggshells, squeezing in laughs and smiles when we can. You know, “in the good moments.” As Dad slept in the afternoon, I did get some much-needed one-on-one time to visit with my mom. We used to do that a lot. Now? Notsomuch.

When I packed up and left for the day, I gave Dad a hug — as I always do. And I told him I loved him. So very much. His response? “Ha. I don’t believe that.” Well, at least he didn’t tell me he didn’t love me. Because that? I don’t think I could walk away from.

It is in moments like these — the desperate moments — when we all realize that this is life now. It’s not knowing what we’re going to find when we visit. It’s being nervous to visit — but knowing we must. Because there are so few visits left. And, no, Dad is not Dad. He is a shell of his former self. But, he also is Dad. The man who raised us. The man who loved us — who loves us (even if he can’t/won’t always say it out loud). The man who was always there. With hugs and smiles and laughter. Now it is our turn to always be there.

Hugs, smiles and laughter were always a constant with Dad.

Hugs, smiles and laughter were always a constant with Dad.

It is also in these moments where we are reminded how much of a difference a little bit of light can make in the darkness. How the smile from a friend can turn your day around — even if they don’t know the right thing to say. How a kind word or gesture can turn tears to smiles.

Recently, I participated in a “Send your 10” challenge as part of our fundraising for the Walk to End Alzheimer’s. I was hoping to get $10 donated over the course of the 10 days, adding $100 to the money I’d raised so far. Instead, I raised hundreds of dollars, causing me to up my goal from $250 to $500. And, you know what? To date, I’ve raised $545. These dollars mean so much to the Alzheimer’s Association. They mean money for research and spreading awareness. But, even more than that? They mean so much to me. In every donation, I felt the warmth of a friend. In every donation, I felt much-needed support. In every donation, I felt love.

In the midst of the sadness that does sometimes take over, I’m brought joy by the people who surround me. And, I just want to say thank you. You all make a difference in my life. You are all blessings to the world, and I wish I could hug every single one of you. Thank you for being there.

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This is Alzheimer’s — A Poem

Sometimes I write poems to make things more light
But this poem, I’ll tell you, isn’t about something bright
It’s about a disease that’s so very scary
That has stolen my dad, you may know him as Gary

Alzheimer’s disease is not fun and games
It has real victims with faces and names
It’s more than a joke, “Old Timer’s” they say
If only they knew, they wouldn’t think that’s OK

You see, this disease is so very real
Memories, laughter, hope it can steal
Families are torn apart at the seams
As this disease continues to steal their dreams

I know, I can tell you, it’s stolen a lot
My dad’s not the same, he certainly is not
And neither are we, each of us altered
I wish I could say none of us faltered

But the truth of the matter is that we did
Some people stepped up, some people hid
I try to stay positive, but some days it’s hard
I cry nearly daily, my life has been marred

I miss my dad often and I so miss my mom
This disease has come at her life like a bomb
She’s a civilian casualty of an ugly disease
Her life forever changed, she’s brought to her knees

It’s hard to have hope, to look past today
To know or to feel that all is OK
It’s not, not right now; our family suffers
Alzheimer’s disease carries no buffers

There’s anger and fear and total despair
We don’t know what we’ll find when we visit there
Broken dishes, torn papers, strewn on the floor
The disease keeps taking more and more … and more

No one sees the inner workings of this disease known as Alz
The don’t think it can hit their family and pals
I assure you, it can, it will and it does
It’s more than a word to drive political buzz

We’re proof that it happens when it’s least expected
It doesn’t matter if you’ve lived your life as directed
There’s no getting out, no emergency eject
Once you’re in it, you’re stuck, don’t pass go, don’t collect

Don’t get me wrong, there still is some light
Our family is close, we’ll always be tight
We have our memories and happy thoughts of each other
Mom, dad, child, sister, brother

I know we’ll get through this, we have no option
We’re all too old to be put up for adoption
Facing Alzheimer’s is a hard, hard battle
And even the strongest of families may rattle

It also reminds us to hug others tight
And never to end the night on a fight
Because every moment we have is a gift
Sometimes, my friends, that’s enough for a lift

The hope in the darkness may be hard to find
But it lies in the people who share love, who are kind
The ones who support us, the ones we can call
To help us, to hold us, to listen to us bawl

I share this poem not to make this a joke
I want to make it more digestible for folk
I want my tears and my words to matter
Sharing our suffering may break through the chatter

Not simply a buzz word, the “in” disease of the day
Alzheimer’s disease is not going away
Every 67 seconds someone develops this beast
That’s not a small number, not in the least

If you’re not affected by it just yet
You will be one day, on that I will bet
You may get it yourself or love someone who does
I never thought that’d be true, but for us it sure was

So spend your days loving as hard as you can
Make memories, take photos, laugh lots and hold hands
And know that though dark times may come down the line
The light does remain and through it all it can shine

If you’re interested in making a difference by contributing to the Fight to End Alzheimer’s, please consider making a donation to the Walk to End Alzheimer’s. This money is used for research and to spread awareness about this disease. You can donate to Gary’s Gang here. And, if you’re interested in learning about Alzheimer’s disease, visit the Alzheimer’s Association website. 

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The Truth About Alzheimer’s Disease

My dad doesn’t talk about his disease very often. Well … really … ever. So, when he does, we listen.

“We need to find a cure. Because I’ve got that.”

It was a simple enough statement, said to Mr. B, who works in the activities department with Alzheimer’s and dementia patients at a senior-living facility. And it was quiet — most everything Dad says is quiet, barely a mumbly whisper. But, at the same time, the statement rang loud and clear.

We told Dad that doctors and researchers are working so hard to find a cure.

But none of us said what we know: Dad will die with the disease. Right now, everyone who has the disease dies with the disease.

“Are there any drugs?”

Well, yes, there are. We tell him he’s taking them. But, what we know — and what he can’t understand? They won’t cure him. They will only temporarily slow the symptoms of the disease.

That’s the thing about Alzheimer’s Disease that I don’t think people understand. The ugly, dirty, gritty part of the disease that is about so much more than being forgetful. Nearly daily, I hear stories from my mom about scary — and progressively scarier — things happening with my dad.

Some days, the stories are as simple as Dad not being able to get his britches on anymore. Other days, the stories are about icy falls and angry words and actions.

Recently, Dad took a tumble on the ice. When they got to the urgent care facility, Dad couldn’t pinpoint his pain. In fact, he pointed across the room and told the doctor that it hurt him over there — in an inanimate object. This is just one of the many reasons why Alzheimer’s Disease is so scary.

My dad is a victim of a cruel, cruel beast. But, Mom? She’s a victim, too. Because he was supposed to be her partner and, now, she’s his caretaker. 24/7 — around the clock.

There are 2.5 times more women than men providing intensive “on-duty” care 24 hours a day for someone with Alzheimer’s.

There is no vacation time. There is no hazard pay. And, for the most part, it’s a pretty thankless job. (Though, I hope she knows how thankful all of us kids are for all she does. And I hope she knows I pray for her — and for my dad — every single day.)

Due to the physical and emotional burden of caregiving, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own in 2013. 

My mom and dad are my rocks — and the foundation upon which so many of us have been built. And it is painful to see that crumbling as Alzheimer’s takes its toll on our family.

But, we are not alone. More than 5 million Americans are living with Alzheimer’s Disease. That is a huge number of people. If you multiply that to account for spouses, partners, children — that’s millions and millions more people affected by the disease on a daily basis.

There are days I feel hopeless and helpless. Like what I do or say or think about the disease doesn’t matter. Because it is still, I would wager, one of the most misunderstood diseases out there. And my voice? What good does one voice do?

But, here’s the thing — if all of us “one voices” stopped talking, the silence would be deafening. Instead, we have to speak up. We have to tell our story, our families’ stories. We have to do what little we can to move the efforts forward.

And, so, with what little bit of endurance I have left after a very tumultuous year, I will be joining my fellow Alz Stars again for the Fifth Third River Bank Run to raise funds and awareness for the Alzheimer’s Association of West Michigan. Because, every penny I can raise is another step closer to finding a cure. It won’t save my dad. But, it might save someone else’s dad. Or mom. Or brother. Or sister. Or child.

http://act.alz.org/goto/kimijoy

Oh, and one last parting tidbit? According to the Alzheimer’s Association, every 67 seconds someone in the United States develops Alzheimer’s. And, that, my friends scares the crap out of me. 

Alzheimer's Stats

— Facts and figures from the Alzheimer’s Association

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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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Running With Purpose

Ever since I started running, it’s been about something. Whether it was losing weight or training for a race or getting over a breakup or simply clearing my head, there was a reason for why I was out there. And while I maintain there’s nothing better for my mental health than a good, solid run, I’ve been feeling like something’s been missing.

It was hard to explain. I still ran. I still looked forward to it. I still enjoyed it. But there was just … something.

And then I decided to run the River Bank Run 25k. And raise money for the Alzheimer’s Association as part of their ALZ Stars team. And suddenly, I was more than looking forward to training for this run. I was excited about it. Really, really excited about it.

“Every day is a good day when you run.” ~Kevin Nelson

This weekend I attended the first free training run for the River Bank Run — an easy three miles with a group of others running the race in May as well. (This was after staying up late Friday night to register for the first-ever Gazelle Girl Half Marathon — which I’m equally excited about, but for different reasons.) And then I came home and mapped out my training program for the run, using Hal Higdon’s Intermediate Half Marathon Training Program as a guide. And it was fun! Figuring out where all the pieces fit each week — four runs, three strength training days and a cross-training day. I had my calendar page spread out in front of me and a pencil in my hand. I got it sketched all out, starting with Sunday: Stretch & Strength.

And then there was today: 3.5 miles, followed by a session with T2.5. The plan? Run immediately after work, come  home for a quick dinner and then head to the gym. T2.5 ended up rescheduling this week’s session (that’s why I use pencil), so I was able to take my time after work before I went out for my run.

Let me set the scene: 60 degrees, rainy-ish, slight breeze

I geared up …

Suit Up

No, but really:

All the safety gear for the dark-time run.

All the safety gear for the dark-time run.

… and headed out for my run, aware the whole time that I was running for something more than myself.

Dad and me

The reason behind the run.

And, let me tell you: This run was different. This run was everything a run should be. I felt healthy. And strong. And happy. And fast. Faster than I have in a long time, at least. I mean, look at these splits:

Running splits

And every step, I thought of wonderful memories and happy thoughts. Memories and happy thoughts — this is what this run is about. So, when I got home, I called Dad. And I told him how happy I was. And how proud I was of this run. And how blessed I felt to be able to do something good through running. And then I cried a little. Running for a purpose has … well … given my running a purpose. And it is such a gift.

Running saved my life. And now, maybe some of the money I raise can be used to help improve — or, one day, save — someone else’s life.

In closing, I’d love to invite anyone out there to join the ALZ Stars by running or walking the River Bank Run (5k, 10k and 25k options available). The more, the merrier! I’ll even make you dinner the night before!

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