For the Caregivers

I'm going to refer back to Sunday's post. I talk with lots of people. Going through cancer. Taking care of someone with cancer. Loving through cancer. The one thing, that everyone ALWAYS asks about...what would you do differently?

Honestly, I wouldn't change most, of what I went through. I gave it, everything I had. And then some. I tried, with every single part of my being, to take care of my Dad. To make him comfortable. And happy. But along the way, I lost me. I lost my sparkle. I lost my spirit.

That would be one thing, I'd tell my fellow caregivers. Don't lose yourself. Always be there. Present. In what you are doing. Love it. But also, love yourself. Take some time. Ask for some help. Allow yourself, a second to just be.

If I could do it all over again, that's what I'd change. It's not dramatic. I wouldn't save the world. I'd just take some time for me. To be honest, there was a time, when I just stopped. I stopped going to church. I don't know, if I just couldn't deal. If going to church, was too much. Or if it was just me, struggling with my situation. Tired. Or me, wondering why God was putting all of us, through all of this...

But I'd get up, and get my Dad ready. I'd help my Mom get him, to church. They'd go to mass, and to breakfast. For me...those 2 hours were my time to sleep. Honestly. It may sound so selfish. But at the time, it is what I needed. I'd sleep. Take a shower. And usually do laundry. It wasn't dramatic. Or exciting. Or life changing. It usually went very quickly.

If I walked this road again, I'd take more of that time. Not necessarily skipping church. Because I NEED that, in my life. And as things dramatically changed 15 months ago, I would just do without sleep. Because I NEEDED church.

Maybe if I could do it again...I'd ask someone for help. I'd ask a family member, or some friends to come over. Or meet my parents for dinner. Something, to allow me a few hours a week...to just be me. It would have helped my spirit. And probably my soul. No doubt, it would have helped my ability, to deal with everything that was happening at the time.

But as well as I know myself, you are probably the same. You probably don't give yourself, 5 minutes to just be. I know that feeling. You sleep, but you don't rest. You are ALWAYS listening, for your loved one. You eat...but you are pretty sure, you haven't enjoyed a meal...in a very long time! You can't remember the taste, of the last thing you ate. Because you eat so quickly. I know that feeling! I also remember, not even allowing myself to use the bathroom in peace. No matter if we were in the hospital, or at home. I'd run in and out. And I'm pretty sure, I stressed my bowels out too.

My one bit of advice, is just to slow down. Take time for you. It might seem very selfish. And whoever is judging you, probably isn't worth having in your life. Be kind to yourself. It's really, the only thing I can tell you.

I know, you want to control everything. You don't want to miss a second. You want to be there. But sometimes, you just need a little time "off." And that is OK. Do you hear me? It is OK. Take some time...even 5 minutes...it will make you, a better caregiver. I promise! ❤❤❤

It Will Not Last Forever

I chat with a few people online. People who are traveling a similar journey, to the one that I've been on. People who are in the beginning, or middle, of this journey. And I can understand that overwhelming feeling, that they all have. That at any second, they will BREAK!

When you are in the beginning, you are sure, you can beat it. If you are the caregiver, you are certain that there will be a cure. You are the shining light, of the entire operation. You sing like a bluebird, just to let your loved one, it's going to be OK.

By the time you get to that middle stage, you are just hanging on. Many times, you just want to curl up in bed, and cry. You see, how fast your loved one, is fading away. But you are still trying to cheer them on. No matter how difficult it is. No matter how many tears, you shed. Or how many times, they take all their anger, out on you. You are still trying to hang onto...some hope.

I think a lot about this now. What a way, to start an "Inspirational Sunday" post. But it's the truth. Somewhere along the way, we all start to lose ourselves. We start to lose hope. And purpose. We are still our loved ones biggest cheerleaders. And advocates. Heck, don't mess with our sick loved one. We make Momma Lions, look like cute kittens.

But we lose ourselves. In the process. And we're sure, we are never going to be the same again. Truth is, we aren't. We will never be the same...as the pre-cancer, carefree people, we once were. No matter what happens, our lives have changed. Forever! And there is, no going back.

I say this, sitting on this side of the journey. Still healing. But totally raw. The cancer didn't just happen to my Dad. It happened to me. To my Mom. To our friends. And to our families. There will forever, be pieces that are missing. People that couldn't take it. And people, that have left our lives.

But beyond those outward parts, that are affected...we are forever changed. Forever! Nearly 13 months, after my Daddy's passing, I'm starting to gain back...some of my pre-cancer self. The sleep, is coming a little easier. I'm taking time, to exercise. And eat better. I find myself, caring a little more about what I wear. If my hair is combed. And every once in a while, I reach for my makeup.

Those are things, I didn't care about before. Like reading, watching a movie, or just sitting with my thoughts. Before, I couldn't even hear myself think. Or pray. Or just be. My entire mind, body, and soul...were on overdrive. Not just trying to help my Dad. But trying to survive. I completely lost touch, with all those things, that had once made me happy.

No matter what your outcome is...if your loved one survives...or goes with the Lord. You will be changed. Make it a positive change. I look back on my friends, who experienced this with their infant daughter. Their journey has been much longer. Nearly 10 years. And once a year, I still see the panic in their eyes. As their little girl, goes for her checkup. The cancer changes everyone.

What I'm here to tell you is, you will survive. As a caregiver. As a family member. As a friend. You will survive. It's a difficult journey. You will change. The world, will look different to you. You will learn what is truly important. You will stop tolerating all the crap in your life. You will change. Make it for the better.

If you would have asked me, 15 months ago...how I was. I would have told you "Fine." The reality is, I wasn't. I was trying not to drown. In the world around me, I was just trying to survive. Just trying to make sure, my Dad was OK. Not in pain. His needs being met. His healthcare in line. That he was doing good. I was drowning...

It's something, I would not have shared with anyone. It's something, I buried deep in my soul. It's something I'd cry about, at the bottom of the shower. I was not OK. I didn't know, how I'd survive another day.

13 months ago, I was a mess. Trying to keep everyone up. Talking to people. Being their cheerleaders. and support system. Making sure, they were OK. Meanwhile, my 32 year old self, couldn't comprehend what life would throw at me next. How would we survive this? What else could possibly happen?

The truth is, time is what I needed. As cliché as that sounds. I needed time. Time needed me. I needed to see what people around me, were really about. Were they there, for the right reasons? Were they people, I could count on? Were they weighing me down...or holding me up?

For a very long time, I've shouldered so much of this. So much pain, heartache, and suffering had happened in my lifetime. So very much! And along the way, it was the same people. Every single time, it was the same people.

When I finally made those choices, to walk away, it was freeing. It is, what I needed in my life. To walk away. To not feel that burden. That load. To feel like, I had to put on a "face," just to deal. Because that is what life had been...

These days, are still a challenge. But I find myself, dealing better. Dealing with emotions. Dealing with my grief. Dealing with...well everything. But it doesn't feel half as overwhelming, as it once did. The middle part of our journey, was the toughest part! By far, the toughest...and loneliest part.

I'm here to tell you, it won't last forever. It really won't. Take some time, for yourself. And for your loved one. Make the memories. Crawl into their hospital bed, with them. Hold them, when they are scared. Talk to them. Share stories. Make memories.

Life is too short. This journey, is too short. I know it doesn't feel like it now. But it is. I promise you. It feels like, it was a million years ago...for me. Not just 13 months ago. What I wouldn't give, for one more of those days. As completely overwhelming as they felt. As hopeless, as some days were. I'd give anything, for one more day with my Daddy. Just to hear his words, see his smile, and hold his hand.

It will not last forever. Cherish it, while you can. One day, you will wake up, and miss those days... ❤❤❤

Thank You!!!

I didn't know, what I was going to write about today. Life has seemed, a little too much, as of late. I've been sick, off and on, since last March. More sick, than not. I hear, from lots of people, that it's pretty normal. As in, after you stop being the "caregiver," everything attacks. Because you are so exhausted and run down. I believe the term I keep hearing is, "Caregiver Burnout."

But I've tried to fight it. Time and time, again. I'm not that kind of person, that crawls up, and gives up. I'm more, "let me keep fighting." But sometimes, you get knocked down hard. And just need a break. I found myself, in the ER, last Saturday. For the first time, in forever! My body, screaming in pain. My heart literally, felt like someone was stabbing it. And I kept praying. Talking to my Dad, in my head. Just hoping, everything was OK.

I'm still not 100%. And I feel like I need to go see a specialist, or something. Because something is not right. I'm having more side effects, from the shots I was given. And I'm ready to feel human again. To be the person, that is doing for others. Not just "trying to make it, to the end of the day." But I want to share that with you. That not every single day, is a good day.

I think we want people to see that. That we are doing good. That life it OK. And we're moving forward. But sometimes, it's not. And we're not moving forward. And sometimes, we just need some help. Yes, I just said that. Sometimes, I NEED SOME HELP.

It's been a challenging year. I still can't wrap my brain around, the fact that it's been a year. So many things have happened in that year. So much time has passed. But it still doesn't FEEL like a year. A year without my Dad. A year without carrying all of the weight, stress, and responsibilities...that came with taking care of him. A year, without my best buddy. His love. And his companionship.

It's when I read posts like this, that take me back. When reality slaps me, in the face. When I realize, we've made it this far. We will MAKE IT! Because we have God on our side. Rory is such an inspiration, to me. On how to live life. To have the grace, that is necessary, to move forward. And how to have love in my heart, when I feel nothing inside.

After I read this post, it really got me thinking. About how grateful, and thankful, I am. To so many people. You see, I usually start writing my blog posts, the afternoon before I post them. And finish them up, in the morning. Early. When I have a clear mind. And can read, through what I've written. It gives me, a sense of calm and relief, to read through my blog post...early in the morning. Without any distractions. Just me and my words.

Then I go through my e-mails. And that usually leaves me, about an hour. To cry it out. I read every single e-mail. And they make my heart swell! With the love and prayers, that I've received. From all the corners of the internet. To hear YOUR stories. To know, that in some small way, I've made a difference, in YOUR LIVES!

It really does, make my day. I feel, like I can continue, this journey. That no matter what I'm going through, life is still moving forward. And I can somehow, inspire the next person. I can make a difference, in someone else's life. That my words, somehow make someone else's journey, just a little easier. It has touched me, in ways, that I truly, can't bring into words.

You never really understand, how during your lifetime, you spread tiny parts of your heart...all around. How you give people, little pieces of your heart. And then one day, you look up, and you see them. All those pieces. It's almost magical. When you get that "aha moment." When your eyes are opened up, for the very first time. And how you gave just a little, and got so much more, back in return.

I think about that now. Maybe it's being on "this side" of the journey. Maybe it's the growing I've done, in the last year. Maybe it's the struggles, I've walked through. But I see it now. How I've given pieces of myself, to so many. And in return, when I've needed it the very most, I've gotten them back 100 times over!

And I'm so grateful, to all the people that have touched my life. Especially, in the last year. When I've struggled the most. And NEEDED you the most. You have been here for me. The perfect strangers...you have prayed, loved, and thought about me. And my family. The people that drop off, little things. Like a meal, a card, a little something that was my Daddy's.

The people that have embraced us. That were perfect strangers. But who have seen my Mom and I, crying for my Daddy. The caring friends, we've met at the cemetery. The AMAZING people at church. The kind souls, that have paid for a meal, when we have gone out. Our family, that has completely embraced us. Friends who have never left our side.

Those people, that understand, when the world is too heavy. For us to bear. And realize, when we just shut ourselves in. I thank you! From the bottom of my heart. Because sometimes, you just don't know, how to ask for help. But you've had the patience. And have stood by our sides. Sometimes, having to carry us, along this journey.

And I realize, people just want to help. In any way, that they can. They want to help. Because at some point, we've been there for them. They respect us. They love us. And want in some way, to make our lives better. People want to feel your hurt and pain, and they want to share it. To make it less of a burden, for you. They want to take some of that hurt and pain, away from you. To help you, make these tough days, more bearable.

It's in these dark days, that I see the good in humanity. Maybe we've lost our Superman. And part of our family. But the kindness and good, that we've gotten from so many others...has carried us so far! It has given my Mom and I, the strength, when we've needed it most. When we've needed a shoulder to cry on, perfect strangers have been there for us.

I've got to say this. From the AMAZING contractors, and honestly friends, that helped us make it...to the end of last school year. THANK YOU!!! You will never understand, how much, that meant to my Mom and I. To the love and respect, that our business associates showed us, I can't say Thank You enough! You made those dark days, days that we could get through. With our heads held high.

To our friends, Thank You for the grace and love, you have shown us. For lifting us up, on the toughest of days. For being our strength. And our salvation. For the understanding you have given us, when we can't seem to leave our home. Or meet you, for breakfast. Or answer a phone call.

To our family, the ones who have stood by our sides, THANK YOU!!! In ways, that I'll never understand, we've been shown...who really loves and cares about us. I don't mean this, in a mean or hateful way. But in way, that comes from my heart. With love, kindness, and respect. My eyes have been opened up, to know what "real family" is. The people that will come, and pick you up off the ground, and love you just the same. The people, that silently pray for you, every single day. And who understand, that your world has just been shattered. And you're just looking for any way, to move forward. The family, that loves you, just because you are...you. You don't feel like, you have to put on an act. You can just be you. And they love you, for it all! The good, and the bad.

I think about all the blessings, that my Mom and I have received. It's the little things, that get us through the day. And turn our days, into weeks...then into months. And without us realizing it, we made it to a year. It's the little things. The kindness, from our Church Family. Who always, stop and give us a hug, or handshake. Wish us, a good week. Sing to us. Make us smile, when our hearts are hurting, the most. It's the kind people, we both work for. That have made this transition, a little easier. With their kindness, and love. The respect, that they continue to show us both. And the friendship, that will last a lifetime!

It's the dozens of people, who have reached out to us. That have made our world, a little easier, to live in. The kindness, in your words. And in your eyes. The people, that continue to welcome us. Who reach out, with pictures of my Dad. Or stories, that I've never heard. It's the neighbors, who continue to reach out to us. To make sure, we're OK. That our needs are being met. And that we are safe.

Our AMAZING medical team. I just can't say, enough Thank Yous! Truly I can't. For the love, respect, and kindness you have shown us. And continue to show us. How you continue to reach out, to my Mom and I. How you are our biggest cheerleaders! And realize, that my Dad's death, didn't mean that our journey ended. Thank You!!!

Truly, I'm touched, when people at the grocery store, gas station, or a restaurant...reach out to us. To all the AMAZING people, who have been behind the Love For Blue project, from the very beginning! All the amazing people, that continue to help us, grow our foundation. Those people, who have donated to us, made purchases, or have visited us at our various functions...THANK YOU!!!

From the bottom of my heart, I mean it! Thank You!!! For all the kind thoughts, e-mails, prayers...it has made this very tough journey, bearable. At times, you think you are never going to make it. Then someone reaches out. Through an e-mail, a meal, or other kind gesture...and you realize, life isn't so bad.

I know, we are blessed. But God has opened my eyes, my heart, and my soul...to so many kind people. In the darkest of days, we have so many loving people...that hold us up. I could spend my lifetime, trying to thank all of you. Trying to repay you in some way. Trying to even out, the table. But I could never do it. Because the love has poured in. In ways, I could never have imagined.

And I want you all to know, that is what our foundation, and this blog are about. Reaching the next person. Making life, a little easier, for someone else. My family has been so blessed! And we want to pass that forward. In some small way, we want you to know, you matter too. And we're thinking about you. Thank You!!! And for that person, that just isn't sure, I'm thinking about you too. I'm trying to hold you up. You matter. Your journey matters. And there are people, on your side too! ❤❤❤

Always Keep A Bag Packed

In the Fall of 2014, I learned a lesson. Fast! My Dad would begin, to have a lot of complications. And we'd be, in and out of the hospital, a lot! Most of the time, without any notice. Sometimes, we'd be going somewhere, and I'd have to call an ambulance. Sometimes, I'd drive my Dad to the ER. Sometimes, we'd call from home.

But it would all happen fast. And most of the trips, were the same. Long waits in the ER. Freezing. To be admitted, to the hospital. For at least a week. Most of the time, longer. And often times, I wasn't prepared. In the beginning. As the ambulance would drive away. I'd find a big bag. Throw in a blanket, sweatshirt, my tablet, some crochet, and maybe a snack.

As our unscheduled trips, would become more regular, I'd get organized. I finally realized, I needed to be ready, for anything. And everything! First, I'd find a nice sized bag. That would only be used, for the hospital.

 

I bought a bag, similar to this one. At Wal-Mart. For about $20. It would stay packed, from September 2014-March 2016. Yes, it still sits in the closet. I know! I should unpack it.

Inside, I'd put a bag of toiletries for my Dad. And one for me. For my Dad, I'd include his mouth rinse, his extra electric shaver, lotion, chapstick, his hair brush, a couple of extra ostomy bags, and rings.

In my bag, I'd have deodorant, lotion, toothbrush, toothpaste, some body spray, soap, my moisturizer, a razor, a brush, and hair elastics. The hospital, also supplied us, with a lot. Like towels, washcloths, soap, lotion, shampoo, mouthwash, and toothbrushes. And whatever else we needed. But sometimes, it's nice, to have the things that you are used to.

I'd make sure to pack some clothes too. For both my Dad and I. I'd pack my Dad, some t-shirts, a sweatshirt, some socks, his gloves, and a hat. I'd also pack some slippers for him. I would have a change of his clothes, in our car too. I couldn't take those down, until we were getting discharged. Because he would want to put them on. And try to go home.

For myself, I'd pack slippers, lots of socks, plenty of underwear, a few pairs of PJs, a couple of comfy shirts, some sweatpants, and tennis shoes. I'd have a couple of sweatshirts too! It was always cold, in the hospital. So all of my clothes, were for comfort and warmth. I didn't care, what I wore, while we were in the hospital.

 

I ALWAYS had, at least 2 blankets in my bag. One for each of us. And 2 pillows, in our car. The ER, was known, for being ice cold. And never having pillows. In the oncology ward, I didn't worry much about this. But my Dad, would often times, request his blankets from home. We'd bring those too.

I crochet. A lot! So I ALWAYS made sure, I had some sort of project, in my bag. Something, that I could pick up, and put down. Something that didn't take too much thought. Most of the time it was a small blanket. Or just a small project in general. But I'd have some yarn, and a crochet hook.

I'd also have a notebook, some pens, and usually a journal. I needed to be able to write things down. So this became essential for me!

I also packed a couple of new magazines. And at least one book. My Bible was in there too. The hospital we were at, had volunteers, that would deliver reading material to you. But it was nice, to have something, I had previously picked out. Something I was looking forward to reading. Many times, in the ER, my Dad was asleep. Usually due to a seizure. Or something else. And the room would be dark, and quiet. So I'd include a book light too. I was also lucky, to get a daily newspaper, from the hospital. They'd deliver it, with breakfast. For me, reading material was a must!

 

I also would include a couple of DVDs. In the oncology unit, they had DVD players, in every room. Many of these patients, spend a lengthy time, in the hospital. And my Dad liked to watch movies. So when I'd go to Wal-Mart, I'd always check out the $5 bin. And stick a couple in our bag. During our stay, in December 2014-January 2015, DVDs were a fun thing for us. My Dad, my Mom, and I, would spend our evenings, watching a new movie together.

 

I was lucky enough, to have 2 tablets, at the time. And I ALWAYS had one in my bag. Waiting for me. This was another way, I'd spend sleepless nights. Catching up on my favorite blogs, writing e-mails, blogging, updating family and friends on Facebook, and just hanging out online.

 

During most of our stays at the hospital, when my Dad was feeling better, we'd watch Youtube videos. Together. Laughing. Reminiscing about WWE wrestling. My Dad's favorite! I'd show him our blog. Later when we'd begun the Love for Blue Foundation, I'd show him this blog. Our T-shirt sales. My Etsy shop. It was nice to have.

 

Again, the hospital had a computer, for the oncology patients to use. In the Family Room. But it was nice, to get to just hangout, in our room. And watch silly videos.

 



 

 I also packed a variety of chargers. For our cell phones, tablet, my Dad's electric shaver, my laptop, our radio. Things I thought we'd need.

 

And I ALWAYS had snacks! Not that we really needed them. The staff at our hospital was AMAZING! And very quickly, they got to know, I was the one that stayed. All the time. And they would all, bring me snacks. The kitchen, would send me something. The different staff members, would bring me a bag of chips, a candy bar, some fruit. But it was nice to have some snacks, that I liked too.

 

These items, were ALWAYS in my bag! And it was, in an easy place, to get to. Which is important. it was packed, and ready to go. When we would get home, I'd refill my bag, and do laundry. This was also important. Many times, we were only home, for a week. My bag, always had to be ready to go!

 

This isn't everything, we'd take with us. Like I said, most of our hospital stays, were 7-10 days long. During the holidays, we were there, for over a month! After my Dad would be admitted, which usually happened in the afternoon, my Mom would get off of work. We'd probably been there since 7AM. My Mom would stay with my Dad, and I'd run home.

 

There, I'd quickly shower, and pick up, whatever else we needed. Usually, my Dad's radio, my laptop, a Saint that my Dad liked to have around, more blankets, little decorations for his room. We tried to make it a positive experience. But being prepared, was the key to everything. It made chaotic times, more manageable. Less stressful. And me, more available, to take care of my Dad. And his needs. ❤❤❤