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. ❤❤❤

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. ❤❤❤