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. ❤❤❤