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! ❤❤❤

Prepare Early

From experience, I would say prepare yourself early. For safety reasons. You see, my Dad was a proud man. Very independent. Going to the doctor, was a struggle. A real struggle. But after December 2010, he went monthly. And it was regular. Nothing we'd have to argue with him about.

Going to the hospital, was a different story. Completely different. And when we left the hospital, after the holidays that year, we'd be sent home with a walker. A traditional walker. My Dad would not have anything to do with it. And it would sit in our washroom, for nearly 2 1/2 years. Unused.

We didn't really need it. Not at the time. My Dad, was doing OK. And I mean, OK. He wasn't doing great. There were real life struggles. Every single day. He struggled to walk, some days. His knee, bothered him a lot. He lost his balance, from time to time. But he was doing OK.

In May 2013, everything changed. As soon as the school year would end, my Dad's health would quickly fade. And it was my Mom and I, taking care of my Dad. Alone. Honestly, we thought he'd had a stroke. He just wasn't himself. And he could barely get around. Sitting up, at times, was a real struggle.

This would have been the time, I would have thanked Jesus, for some of that safety equipment. My cousin would bring us a transfer belt. But my Dad would cry, anytime he saw us bring it out. It didn't hurt him. He just didn't want us to use it. I think he saw it, as a sign of bad things...

So my Mom and I would struggle. And struggle we did. From the time my Dad would wake up in the morning. It would take the two of us, to get him out of bed. And our trusty old walker...finally got some use. One of us, would stand in front of it. Holding it steady. And the other, behind my Dad. And we'd "shuffle" our way around the house. To the bathroom, to the living room, sometimes outside.

The one thing I was grateful for, was my auntie had given us, some of my uncle's equipment. It had sat, unused in our home, for about 4 months. My uncle had past away, months before. And we had a wheelchair. It was a more compact version. They used it for traveling. And well, in our old home...the doorways are narrow. This worked perfectly! I could put my Dad, in the wheelchair, and get him...where he wanted to go.

On those tough days, we'd put my Dad in the wheelchair. Then use the transfer belt, to secure him. Because he couldn't even sit up. Some days were so tough. Honestly, it was a lot of carrying him around. Picking him up. Helping him, into the wheelchair. Then having to maneuver the wheelchair, over the steps in our home.

We also had one of those chairs, that goes over the toilet. But my Dad refused to use it. We did convince him, to use a shower chair. I'd help get my Dad into the shower. And my Mom would bathe him. Then I'd help them get out. And we'd get my Dad dressed.

My Dad would make an improvement, over that summer. When he had some blood transfusions, had been hospitalized, and was being watched over...by better doctors. But it was still tough. There were still days, when he'd fall. Fall from a sitting position. Or couldn't get out of bed. He'd fall on the ground. In the middle of the night. And it was pure strength and will, on my Mom and I's part. Sometimes, it would take an hour. To get him from a laying position, to sitting, eventually up to his wheelchair. And then another hour, to get him into bed.

Looking back, it wasn't a good idea. We were literally killing ourselves. I'm still struggling, with back issues now. For over 2 years, I would pick up my Dad. Lots of times, by myself. I really wish, I had had tools, in those early days...to make it easier.

After my Dad was hospitalized in March 2014, we got HomeCare. And PT came with that. They'd teach my Dad, how to help me. Especially, when he would fall onto the ground. They'd try, to help me, as much as possible.

At this point, my Dad was using his walker. Regularly. And we'd been trying, to get a four wheeled walker. I would purchase a better shower chair. We'd have a bar, in the bathroom. And PT, would evaluate our home. They'd let us know, what we needed.

My Dad was never OK, with having the "traditional bars," placed in our home. There was no permanent bars in the shower, or by the toilet. We could have used those. We also could have used, a removable shower head. Something that would have made bathing him, a lot easier.

It would take us, over 6 months, to be approved for that four wheeled walker. We'd NEVER be approved for a wheelchair. And it would take my Dad, falling out of bed...just weeks before his death, to get a hospital bed.

Was it tough? Yes! Did it take a long time? Yes! Was it mostly do to insurance approvals? YES! In fact, when we got the four wheeled walker...it was our doctors, "strong arming" the insurance company. They'd tell them, we'd remain in the hospital, until we got one. So the bill could be hundreds of dollars...or thousands. It was up to them. The next day, a brand new walker, was delivered to our hospital room.

The hospital bed...was a long story. It was recommended since January 2015. We did not receive it, until the second week of March 2015. After my Dad had a seizure, and rolled out of bed. Knocked unconscious. And sent back to the hospital. Again, our doctors would fight with our insurance company. Which ironically, was with the hospital. They'd keep my Dad, until the bed was delivered. Literally, one night they came to our home at 9PM. Set up the bed, gave me a phone number, in case we had problems. And left. I'd never hear from them again. But we'd bring my Dad home, at 10PM. That same night.

It's not that our insurance company was horrible. But there are a lot of claims out there. Our first walker was delivered quickly, because my Mom and I, called a federal health agency. We felt like my Dad, wasn't receiving the care he should. If you ever feel that way, do the same. In about a five year period, we'd call them three times. And they'd immediately help us. While we were in the hospital, or at home. In December 2010 I think our poor care, was partly because my Dad was hospitalized days before Christmas, to just after New Year's.

But once we reported them, things moved quickly. Tests were done. All the supplies we'd need, became available. We were able to meet with specialists. It was like, we had been sprinkled with magic dust. The wheels on the operation moved efficiently, after that report.

Later that month, we'd sign up for health insurance, with our hospital. And things would improve. Drastically. We'd get a better doctor. We were able to see specialists. In fact, my Dad would have 3 surgeries between December 2010 and March 2014. His healthcare, was improving.

But insurance companies, are still insurance companies. They still don't want to have to approve everything. We had AMAZING doctors, that ALWAYS fought for us. They'd personally get on the phone, and fight it out. With insurance companies, equipment companies, whoever they needed to. Our HomeCare nurse and physical therapist, would do the same.

Without these people, it would never have been done. But I know, we could have started the process sooner, than we did. Even if my Dad didn't want it. It would have made us more prepared. Because one day, he could be perfectly fine. Then next, he couldn't do anything for himself.

Our stress levels, would have also been better. We could have had one less thing, to worry about. And probably avoided, hurting ourselves, in the process. If you are in the same boat, don't wait. As soon as you notice your loved one struggling, tell your doctor.

Let your medical team help you. That's what they're there for. Describe to the doctor or nurse, how your loved one is struggling. Or maybe you are worried about their safety. All of those things, will help your case. Especially, if your loved one is receiving PT.

I just say, to start early. Prepare yourself, for everything and anything. We could have used safety equipment, months before we got it. We could have used a hospital bed, at least a year, before we got it. The "training" we got, from our medical team, could have happened earlier. It helped my Mom, learn how to pick up my Dad. It taught my Dad, how to help us.

Lessons Learned. That's how I'd describe this. But it's definitely an experience, that I'd like to save you from. Get the equipment as early as possible. Find a room or closet, to house it. Until you need it. It's better to have it, on hand. Then to be in the middle of some storm, without the items you need. Waiting for insurance companies to approve your doctor's referral. And supply companies, struggling to find what you need. ❤❤❤

Record Their Words

A long time ago, I saw this interview...about Hallmark Legacy books. And the recordable books. I was in my mid-twenties. And I wanted to keep my memories close. Of my loved ones. The ones that were still with us.

I went to Hallmark, and bought some of these books. They sat in my bedroom, on my dresser, for months. I kept thinking, I need to fill these out. I need to sit down, with my parents and grandparents, and fill them out.

After I had come to take care of my Dad, I'd travel back to my home. At least twice a month. On the weekends, to work. On one of these weekends, I picked up those 3 books, I'd bought. And put them in the trunk of my car. It would be, one of the best things, I'd do.

This is the "Father" book. I bought it. And it took me, nearly 10 years to fill it out. Not by sitting my Dad down, and asking him all the questions. But by looking through the book. Before talking to my Dad. And every single day, asking a question. Something that would allow me, to fill it out.

And this is the "Mother" book.  It still sits, empty. But I have an idea, of where to begin. And I know, that by the time I head home, it will be completed.

I also had bought one of these books. I ALWAYS wanted to buy 3. One for each of my grandparents, that I knew. Fortunately, I found a second, in a local Walgreens. And I scooped it up. It's been about 2 years ago, that I last seen them, in stores.

But what I've gotten out of these books, is life changing. It's something that allowed me to ask, the right questions. To dig a little deeper, into my loved ones thinking. And their lives. And what they want their legacy to be.

You see, I started out with my grandpa. Asking little questions. Asking for stories. Hoping to learn more. And after a few hours of talking, I'd go home, and record his thoughts. By the time of my grandpa's passing, I had a nice little journal, of his life. It wasn't complete. There were things I had to ask my grandma. And my Mom. But it was something.

When it came to my Dad, I started small. I would ask him a question, every single day. Wanting to learn more and more, about the man I call Dad. During the last year of his life, he was more open to conversation. The real stuff. He let me know, what he wanted his legacy to look like. What he wanted his grandchildren to know, about him. He told me things, he had never shared before.

It was very difficult to write my Dad's book. Maybe because we were so close. Maybe because I knew, it meant the end was nearing. Maybe it was just hard, because it was hard. But over the last year, I've managed to complete it. You know, take all the little notes, I'd written on pieces of paper...and put them in the book.

I'm so grateful to have these. I ALWAYS wanted to make one of Hallmark's recordable storybooks, with my Dad. But he wasn't that kind of guy. I know my Mom, will LOVE to do something like that. To me, these are little momentos, that one day, I can hand down...to my own children.

It's a piece of our family history, that wasn't lost. And I'm so grateful to Hallmark, for coming up with these. I'm sure, you can find something similar, out there. But whatever way you choose, record your loved ones words. In a book, through a recording, on a video. Because they are precious. And one day, they won't be at your side. One day, you'll be without them. And you'll want their words, to live on. ❤❤❤

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. ❤❤❤

Stay Organized

I get this question a lot, "How did you do it all?" I got organized. And it really was, one of the things, that helped my sanity most. First and foremost, you need to get organized. As tough as it seems, it's the beginning and end, to it all. Yes, there will be bumps in the road. And some weeks, will seem tougher than others. But try and stay organized.

The first thing I did, was get a planner. It was exclusively used, for my Dad, his appointments, medications, and hospital stays. I wrote every appointment in there. Whether it was a doctor's appointment, Homecare visit, PT, OT, or a treatment. It all went in my calendar. I'd  write it down. And then with a highlighter, I'd color in the time we were supposed to be there.

I also tried to color code everything. So I'd know, if we had to be somewhere. Or if we were having a visit from our Homecare Team. I'd write doctor's appointments, in one color. Chemo treatments in another. Homecare visits, in another. Then I'd use different colors of highlighters.

Yes, at first it was difficult. Later, after I had a system, it got easier. When I'd open the planner, I knew if we had an eye appointment, had to have blood drawn, or if we were having an evaluation by PT. It was so helpful!

Because let's face it, during cancer, there are so many appointments! In one day, we could have a visit from our Homecare nurse, from PT, an appointment at the Cancer Center, a test, and an appointment with our neurologist. Yes, all in one day! And I needed to know, when and where we had to be.

Other things I'd use our planner for, were medications. As in, when we needed refills. At least a month before we needed a written refill, I'd mark it in red. So I could call our doctor. Or let them know, at our appointment. A week before we were out of pills, I'd call the pharmacy. I had a very difficult time, getting my Dad's epilepsy medication. So I ALWAYS had to start early. But I would try and time things together. So I didn't have to make too many trips to the pharmacy.

Along these same lines, I'd put our supplies in here. It was so important to know, how much we had. And when our deliveries would come. There were a few times, I had to go to the hospital, and ask for some ostomy bags. Or I'd ask our Homecare nurse, for some supplies, if we were really low.

But I made sure, to estimate how much we had. And when we would be without. Our Homecare nurse, would do all our ordering. We were very lucky! And I'd wait for the supplies, to show up at our home. With hydration supplies, it was pretty quick. But I always had to check, to make sure, they delivered everything we needed. Did we get enough supplies? With our ostomy supplies, it was all about timing. I needed to let Robin know, with enough time.

If my Dad started to have certain symptoms, or maybe a seizure, I'd also write it down. It was important information. If there was something "new," going on with his stoma, I'd write it down. Then take a picture, with my cell phone.

I made sure to take my planner, to the hospital as well. I'd write every single thing down! How long we were in the ER. Where we were located. What doctors, nurses, and techs came to help. It was very important. Especially in the early days.

Things like, when we changed my Dad's ostomy bag, were also documented. His output. If there was a difference in color, texture, or how much was produced. I would make notes about how he was feeling, eating, and walking. Later when he was given pain meds, through a patch, I'd write down when I changed them. And any symptoms he was having. Anything, and everything, that seemed important...was written down.

I also made sure to write down all his doctor's names and phone numbers. Any facilities we used...like the hospital, treatment centers, and rehab. I also included a list of his medications. And the doses. The last thing that I had, was a list of his medical procedures. Surgeries, diagnosis, and any other procedures...that seemed important.

Along with my planner, our pillbox, was also very important. I kept all of my Dad's pills in there. Every Sunday night, after he went to bed, I'd count out pills. I'd count them, 3 times. And fill the pillbox, for the week. I was the one person, that knew when my Dad took his pills, which ones he took, and when the anti-nausea pills were needed.

Yes, I had everything organized. But it didn't mean it was flawless. There was a time, when some of my older siblings, were taking my Dad to breakfast, and they gave him all the pills for that day. So it's important to note, this is not a foolproof tip. Just a way, to stay organized.

Whoever is taking care of the person, needs to know what pills are taken...and at what time. My Dad took pills for epilepsy. And they needed to be taken at a certain time. Things like sleeping pills, should be obvious. To be taken at night. But not everyone knows, what all those pills are for. Be sure, to make this, something that helps you.

But get to know, all the pills. What they look like. What the shape and color are like. This is also an important tip, when you pick up your medication. I would ALWAYS ask the pharmacist, to open the bottles. If the pills were a different color, or shape, we'd have a talk. This often happened with my Dad's epilepsy medications. And from time to time, with his iron pills.

And organize your supplies. I ended up, buying 2 midsized storage containers. Clear ones. That I could stick in the closet. So I could see our supplies. And every single time, we got a shipment, I'd check them. Make sure everything on the list, was in the box. Then I'd pull out our old supplies, and put the new stuff, on the bottom of the container.

We got hydration supplies, delivered twice a month. And it was important to keep all of that dry, clean, and organized. I kept that supplies, in one box. Making sure, to have enough room, for the bags of saline. I didn't want to bust a bag. And also making sure, that the older product, got used first.

Our other box, was full of ostomy supplies. Bags, rings, powder, scissors, cream, soap, extra containers. I kept a very close eye, on this box. These were the supplies, we had the most difficult time, keeping up with. The delivery, wasn't the best. And insurance, limited the amount you got. So I had to make sure, we always had enough.

Getting and staying organized, is essential. During a chaotic time, like battling cancer. You have enough to worry about. And probably, more than enough, on your plate. So you need to make sure, you have everything organized.

I'm sure, no one thought I was organized. If they'd come to our home, they would look at you, like you were crazy. If you told them, I was organized. But these things, were always organized! Along with the supplies my Dad needed, for PT. Weights, chairs, and bands. And the supplies he needed, to get around. Bars in the bathroom, a bathmat, in the bathtub, his 2 wheeled walker, his 4 wheeled walker, and his wheelchair. And of course, his bag.

It made life, a lot easier. I wasn't going to miss an appointment. I knew when our Homecare team, would be visiting. I wouldn't suddenly, run out of medications. It took a lot of pressure off of. And left me more available, to take care of my Dad. That's how I managed to do so much. Being extra organized, with these details. ❤❤❤

Be Prepared

Over social media, and through e-mails, I get this question a lot. "How did you guys prepare, when you went out?" In terms of supplies, and being able to empty my Dad's ostomy bag. The reality is, it took a little trial and error. And it took experience. My Dad, wasn't someone who stayed home. So almost immediately following his surgery, we got prepared.

My first recommendation would be, get a bag. A tote bag, or backpack. And load up your supplies. We ALWAYS carried our bag with us. My Dad used a one piece system. But we always had 2 or 3 ostomy bags with us. And the same number of rings. We had a couple of washcloths. Paper towels. A few small trash bags. And a pair of scissors. It's important, to use the scissors just for this purpose. Nothing else!

In our bag, we also had a cylinder, that we received at the hospital. It was something the nurses used, to empty the bag, in the beginning. And it became a lifeline. We'd use it, to empty my Dad's ostomy bag. Whether it was in a restroom. Or sometimes, it happened in our vehicle. I'd recommend finding some sort of vessel, that works for you.

In our vehicle, we always carried a jug of water. And some foam soap, that we also received from the hospital. We also had a spare cylinder, and a small wash tub. We were so lucky, that the hospital supplied us, with so much stuff.

Also in our vehicle, we carried extra clothes. I'm pretty sure, if you are somewhat familiar with an ostomy bag, you've experienced a "blow up," before. And so did we. Even the most well planned outing, can have a hiccup. Or two. Sometimes three.

Make sure, to have supplies for yourself. In terms of hand sanitizer, wipes, and gloves (if you use them.) We never did. But I know, lots of people do. Make sure, to carry these things as well. Nothing is worse, than being stuck somewhere, without them. Imagine cleaning up your loved one. And realizing you can't clean your own hands?

We were also lucky enough, to have a large vehicle. A van. With window coverings, that made it a semi-private area. So if we did experience a "blow up," we could clean my Dad up. Without having to worry about people watching us. I know, not everyone has this luxury. But it was nice.

But then, my Dad was 81, when we were going through this. He struggled to do a lot for himself. Not just because of his age. But his failing health. If you're younger, more than likely, you'll be able to go to the restroom by yourself. To empty your bag. Or clean up, after a problem. But my Dad needed help.

Another thing to look for, are "Family Restrooms." We did this often. Most of the time, we'd look for one, the minute we got somewhere. Or we'd ask, if it was possible, for my Mom or I...to go with my Dad to the restroom. You'd surprised, at how many people are so helpful. In places that didn't have "Family Restrooms," many times a man, would clear out the restroom for us. We'd go to the "Handicap Stall," and do our business. Usually just taking 5 minutes or so.

My other big recommendation would be, monitor your ostomy output. Pay attention to when you eat, and when your bag needs to be emptied. Soon you'll notice a pattern. My Dad usually had about 10-20 minutes, after a meal. If we were going out, and had eaten, we'd wait. Until his ostomy, did it's thing. We'd empty the bag at home. And then head out.

If we were going out to eat, and knew we'd be out afterwards, we'd hangout at the restaurant a little longer. If we were going home, we knew, how much time we had. But you'll learn this. Over time, it will become easier. In our case, the pattern developed almost immediately. And it stood the same, through our entire journey.

I'd also recommend, getting to know your ostomy. Know what foods, create more output. Or a faster output. What foods, aggravate the situation. Once you become familiar, it will assist you in so many ways. For us, there were certain foods, that created a ton of gas. If my Dad ate them, we knew we had to "burb" the ostomy bag...pretty quickly. And often. Or else, we'd have a "blow up."

We also learned, during our "Chemo Week," things changed. The output was different. A different consistency, smell, and timing. We had to stay on top of things. But even then, "Chemo Week," had it's own schedule.

In the beginning, to learn about these things, I wrote everything down. I got a planner, that was used, just for this purpose. So we could learn, about the osotomy output. Soon, I saw all the patterns. It made planning outings, less daunting.

My biggest suggestion would be, just be prepared. Don't stay home, just because of the ostomy. There will be messes. No matter, how hard you plan. Just be prepared. Take a few towels with you, some extra clothes, and your supplies. But get out. Make your first few outings, short. Maybe close to home. And as you gain confidence, try going out, for longer periods of time.

As we got comfortable, we'd go out to eat. Which usually took us 2-3 hours. We'd take my Dad to the casino, for 6 or more hours. We'd go on road trips, shopping, to family get-togethers, visiting friends, and so much more.

My last suggestion is, don't leave your supplies in your vehicle. I know, that all these people say, the heat doesn't affect your supplies. But for us, it did. We noticed this, the first time a supply order, was delivered in the summer. While we were at chemo. And it sat in the heat, all day. Those bags, and rings, did not work well. In fact, prior to that, a bag would last 5 days. With that batch, we'd maybe get a day. Then one day, we left our supplies in the car, for a few hours in the afternoon. When we used those supplies, we had the same issue.

After that, we knew, that supplies had to come with us. Even if it was inside a store, to a family outing, wherever. We also made sure, that deliveries happened, when we were home. No one wants to have a "blow up," only to clean up and change...then have another. Because it's been exposed to the heat. Also, we live in the southwest. And it gets well over 100 degrees, in your car, during the summer.

No matter what the issue, I'd say, don't be afraid to go out. Have fun. But be prepared. Not just in terms of supplies. But prepared, that an accident will happen. Eventually, it will happen to you. But never let that stop you. You still have to live. And enjoy life. Just be prepared. ❤❤❤

Don't Forget To Have Fun

Some of the first advice, we ever received, was to have fun. Make time, each week, and have fun. Sounds crazy, when you find out, your loved one is now battling cancer. Stage 4 cancer. But it really was, some of the best advice.

The first oncologist, that we'd meet, would tell us this. He was almost 100% sure, my Dad had cancer. He read his entire medical history, and told me, he was certain. But we'd need a few tests. He also told me, if we had a fighting chance, we couldn't stop having fun. We needed to live life. It would make the battle, worth it in the end.

When those words, come out of your doctors mouth, your not sure what to think. Wait. "Did you say cancer? You want us to have fun? Enjoy life?" It all seems like a blur. Like you are in a bad dream. Maybe you misheard.

But it is the harsh reality. And in all the chaos, that followed my Dad's diagnosis, those were the words I'd remember. So would my Dad. And we'd try to steal those moments. From the cancer. To just enjoy life. To forget about our troubles. And just smile.

It is not always easy. Not when you have doctors' appointments daily. Have nurses coming to your home, 3 or 4 times a week. And don't necessarily feel great. But you have to make the time, to unwind. To enjoy life. To be happy, even for a few minutes.

It's not easy. It was never easy. Ever! Not when life kept kicking us down. But that is when life really begins. When you are taken to the edge, of your comfort zone, and realize what really matters.

In the few days, between my Dad's diagnosis and his surgery, we lived. My Dad wanted to be out and about. So between doctors' appointments, tests, and prep...we would go to the casino, out to dinner, and to his favorite places in town. We'd live.

We were all scared. Nervous. And halfway hoping, this was a dream. But he remembered those words. Go out and have fun. Enjoy life. Don't forget to live. We did it all!

In the weeks that would follow my Dad's surgery, there would be more appointments. More tests. And eventually chemo. But we'd remember to live. And I'm so glad we did! Every other week, was a chemo week. It was also summer. During chemo week, we fought this beast. Head on! Chemo one day. Going home with the pump for two days. Back to have it disconnected. Then we'd go in for hydration, and iron pushes. It would make for a long, and draining week.

It was a grueling schedule. We were limited to activities on chemo day. Mostly because our entire appointment, was nearly 12 hours. Sometimes longer. It just depended. And then, we were not allowed to do anything after, but go home. My Dad was just too "high risk."

But on the days of disconnect, it was an all day affair. My Dad would want to go out. To a late lunch. We'd spend 3 or 4 hours, at Furr's. Enjoying a meal. Talking. Laughing. To anyone watching, they would have no clue, we were fighting for his life.

Every single weekend, and our "off week," were dedicated to living. Having fun. Doing the things, we all enjoyed. Going out to eat, visiting friends, going on road trips, having fun at the casino, just enjoying each others' company. Honestly, we were living by the seat of our pants. It wasn't unusual, to spend 3 hours in a restaurant. Or 8 hours in the casino. Or to wake up in the morning, and decide, we were hitting the road.

Many people, thought we were crazy. We were doing too much. Putting my Dad, through too much. But it's what he wanted. Looking back, I'm positive that he knew, we didn't have much time. And he wanted to fill our time, with love, happiness, and so many memories!
There were countless hours, spent in Old Town. Listening to music. Eating ice cream. And just "being." There were so many, of those "toothy grins." That I miss so much, now. Rarely, did we sleep in. There was just too much life, to live.

My Dad, would later tell me these words. And he made me promise him, never to forget them. To live by them. You see, my Dad worked his entire life. He owned a business, for 45 years. And never retired. He worked hard. So incredibly hard! From 3AM-10PM, daily. He did so much. For so many.

But along the way, he didn't take the time, to really enjoy life. To really enjoy, the fruits of his labor. To really live life. In the last few months of his life, we'd do just that. As much as we could. Whenever we could. For as long, as we could.

We'd steal moments, out of the day. Go and sit at McDonald's, and just be. My Dad would enjoy coffee, chicken nuggets, and a pie. Once in a while, he'd cheat...and have a root beer. Maybe an ice cream. We'd sit and talk for hours. He never really wanted people to know, where we would disappear to. He'd lie to my siblings. And we'd just go and talk.

For sure at this point, I know now, that he knew. He knew his time was limited. That there wasn't much time left, for making memories. For telling his stories. For having fun. Or being my best friend. For being my Daddy.

But the time we had, we enjoyed. Going for long walks, at the old K-Mart building. Sitting inside Ross, and talking. For hours. On the chairs they were selling. Bless those workers' hearts, for letting us do it. We'd go to Sonic, and pick up a strawberry milkshake, for my Dad. Then head to the park. And sit and talk. Sometimes, head to a store, that my Dad had never been to. Look at every single thing. Enjoy a trip to Wal-Mart. To pick up his snacks.

It didn't matter what we did. We tried to have fun. Even if it was at Walgreen's, and we had to wait 2 hours for his prescriptions. We'd look around. Talk. And maybe share a candy bar. Because life was precious. Our time was limited. And we had a lifetime of memories, to create, in a few short months.

I look at these months, as being the most important of my 32 years. I learned so much about my Dad. So much more, than I had already known. So much, about how he wanted to be remembered. What was really important to him. And what his biggest regrets in life, really were. In the end, we had fun. And we ALWAYS carried those words, from our doctor, in our hearts.

In the battle, against cancer, fun is not a word you hear often. It's something, you probably don't want to think of. You can't imagine, how to have fun. How to smile again. How to forget about those 6 letters...that sent your blood cold.

But it's the thing, that is going to carry you along. On the bad days. When you are unable, to move forward. When maybe, the sickness is taking over. Or unfortunately, you can see the end. Those fun days, are going to carry you, when you don't think you can go any further. They will give you the strength, that you need, to move forward.

Even in the hospital, don't forget to have fun. I'd talk to our nurses. And when my Dad, was feeling OK, we'd go on some adventure. The nurses would help me, get him in a wheelchair. And we'd go. Sometimes to look at the Gift Shop. To buy a magazine, look around, or pick up an ice cream. Maybe down to the cafeteria, for a sweet treat. Perhaps to the Chapel, to pray. Or the Family Room, to watch TV. Maybe if it was a really good day, to the Courtyard, outside. To get some fresh air.

But we never forgot, to have fun. To make memories. To steal a fun moment, from the cancer. Even when my Dad was so sick, he couldn't eat, we'd have fun. We'd stay up late, watching movies. In our hospital room. Or talking. Maybe we'd watch some old WWE matches, on my computer.

And later, when movies and TV, didn't interest my Dad. We'd take him a radio. To the hospital. And the two of us, would enjoy music. Dance around. Be goofy. Everyone knew, we were the "party room." We worked hard, against his cancer. But we tried to enjoy, as much life, as we could.

Honestly, as I look back, it gave my Dad strength. It helped him, battle cancer. It made his life, worth living. He didn't care what people thought. Not anymore. He didn't care, how his family looked at him. Or his co-workers. He'd tell me, "What are they going to do? I know where I'm headed. Let's just keep everything on track. It will take care of itself. I have 82 years worth of fun, to live."

And he really looked at life, like this. In his last 3 months. It was "bonus" time for him. He'd battled so much. Cheated death. And it was his time, to enjoy. To really, live life. It's unfortunate, that it took 82 years, to get there. But he enjoyed, those last few months.

My Dad, nor I, cared what people thought. We became best friends, with our local McDonald's workers. They knew what we had, before we walked through the doors. Nurses knew, to have a cup of coffee, waiting for my Dad. With a warm blanket. And maybe a snack.

They all knew, that we'd take goofy pictures. Maybe sing, in the middle of chemo. There was ALWAYS food. And a ton of laughs. Because we had a life, to live. Not every single day was great, or even good, but we made the best out of them.

Even if it was, just the little things. Watching WWE wrestling, enjoying coffee and pie, or just a chat. A heartfelt chat. To tell me, whatever needed to be said. History, stories, or my Dad's final wishes. We did it all, in those final months.

This is something I've thought, my entire life. Objects don't bring happiness. It's appreciating and valuing, what we have, that brings happiness. I could have been bitter. As the caregiver. As the daughter, who was losing her Dad. As the young woman, that would soon, have her world turned upside down.

But that's not the point. It wasn't what my Dad, had taught me. Not so much through words, but through his actions. To value what we had. Our relationship. The memories we were making. The history we had made. No one, could take those away. Or change them. They were mine. And his.

And no matter how unfair, cancer can be, it's up to us...to see the "bright moments," that life gives us. To take advantage, of those few precious moments, to enjoy life. To forget about cancer. To live. And make memories. Most importantly, to spend time with our loved ones.

 

At the time, I didn't realize, just how those ordinary days...would come to mean so much. The little things. The "toothy grins." The shared conversation. Trying out 20 different chairs, in the middle of Ross. Sharing chicken nuggets. Or enjoying a milkshake.

They were ordinary days. Doing ordinary tasks. Trying to get my Dad, to forget just for a second, that he was in his last few days. We didn't go out, to make memories. We went out, to have fun. To enjoy life. And the memories were made. Without much thought. We just made them.

And for anyone that is facing this same circumstance, I'd say these words. "Go out, and have fun. It doesn't have to be some great adventure. Or expensive trip. You don't have to set out, to make wonderful memories. You just need to enjoy life. Enjoy your loved one. The memories, will make themselves. Do the little things. In the end, those are the memories, that will mean the most. The ones, that you will look back, with so much love. The ones, that you will carry in your heart, forever! Don't forget to have fun!" ❤❤❤

Stay In Touch

I talked about this yesterday. Stay in touch, with your medical team. It's probably my greatest tip. Whether you or your loved one, is no longer in need of treatment. It becomes vital.

To be honest, they are the ones I turned to most, in the days following my Dad's death. They pointed me in the direction of survivors' groups. And other cancer resources. As I fight to get my own colonoscopy, they are standing behind me.

We had an incredible oncologist! He fought so much, for my Dad's treatment. And I will be forever be grateful, to him. He made many personal calls, to the insurance company, hospital, and other agencies. Whenever we needed something, he was there to fight for us.

I think about this a lot. Now. In the aftermath. I've called Dr. T, a few times. He's written referrals for me. And in the end, told me to call him, as soon as I got insurance. He's on my side. And it feels pretty awesome! I'm not in this game, alone. I can lean on him. And depend on this doctor, that on first meeting...I thought was a little crazy.

It doesn't matter, that my Dad is no longer being treated. His doctors, are still supporting us. Making sure, that we are OK. That we, are getting, what we need. I've had a few calls, from various, hospital staff. Even 11 months later. To make sure we are OK.

Maybe we were the lucky ones. The ones that had a good hospital. With good staff. That cared, deeply about us. I also hope, that most Oncologists, are like this. That they take care of their "people." In ways that none of us, would ever see coming. Stay in touch. You may need them again. ❤❤❤

Brown Rice Protein Shakes

Of all the advice, that my Dad received, the advice he took to heart...always came from our cousin. Jean, also battled cancer. She had a long battle with ovarian cancer. And in November 2014, she went to be with our Lord.

But Jean, was definitely the person, my Dad looked to most...when battling cancer. Very early on, she gave us lots of tips. And tricks. And advice. All of which, we took to heart. The one thing, that she was very passionate about, was her brown rice protein shakes.

I'm not sure, how she first heard about it. But Jean swore by it. And it became one of my Dad's favorites too. Right before my Dad started chemo, I searched high and low, for this. And I finally found it, at Whole Foods. A can, was somewhere around $20. And between June and March, we went through 2 of these cans.

The way that both my cousin, and my Dad took it, was by a shake. For my Dad, I'd mix 1-1 1/2 scoops of strawberry ice cream, a splash of milk, and 2 scoops of the brown rice protein together. I actually bought, one of those "shakers," at Whole Foods as well. And that's how I'd mix it up. Throw everything in there, and shake it up.

My Dad had one of these shakes, once a day. Especially during chemo weeks. Sometimes, during those weeks, he'd have 2 a day. Or we'd add, the brown rice protein powder, to his oatmeal. Maybe even, his favorite Sonic milkshakes. But we made sure, he'd get it, twice a day.

The two weeks, prior to beginning radiation, it was advised, that we increase my Dad's protein intake. But not through animal sources. So we made sure, for those two weeks, that we included brown rice protein powder. It went in my Dad's snacks...cottage cheese and fruit, pudding, or his shakes. We added it to his oatmeal. And to anything else, we could think of.

I never tried it. Unfortunately, we don't have any, that was leftover. But my Dad told me, he never tasted it in his food. It never changed the flavor, of his food. And that was a good thing. Because I don't think, he would have used it, if it changed how his food tasted.

Protein is one of those things, that helps a lot during treatments. With recovery and healing. It also helps, to keep weight on. We found, that this, along with some other snacks...were our best bets. As the cancer took over, and my Dad struggled to eat, we tried things like Ensure. But he wasn't a big fan. He still wanted his protein shakes.

Towards the end of his life, I was encouraged, to mix this powder with applesauce. And his oatmeal. Those were the things he was eating. And it helped. A lot! Especially, since he wasn't eating much. His food, along with the protein powder, added a lot to him. In terms of, giving him strength.

I'd definitely, recommend trying this. But don't forget to ask your doctor. Before you try it. For us, this became a lifeline. Because in the Fall of 2014, my Dad started to have issues with gallstones. And his diet, started to have some limitations. Regarding animal proteins. Meat, in particular.

The brown rice protein, definitely became a staple in our home. It was a little difficult to find, at first. But it wasn't impossible, to find. And when our container was about halfway, I called our local Whole Foods. And I ordered two. I've shared this tip with many people. And everyone, has picked their favorite ice cream flavors. Given it, a try. And told me, it worked great. I hope that you, find the same results. ❤❤❤