5 crucial tips for caregivers that will make life easier and much less stressful. Simple tips that make a huge difference in this journey.
I remember exactly how crazy life was when my dad was diagnosed with cancer and I became his caregiver.
Suddenly you’re responsible for the health, safety, and wellbeing of another person and you need time to figure out what you’re doing.
I was drowning. There was way too much to manage, I was always on the go, and I barely had enough time to brush my teeth. Life had gone from busy to insanity. And every day there was a new challenge facing me.
Becoming a caregiver for the first time feels a lot like speaking a foreign language. You have to learn everything from the ground up, but there is one big difference.
You need to understand and be good at these tips for caregivers now…
There’s a lot to learn. A lot to focus on and tons of information coming at you from every direction.
These Tips for Caregivers are a Great Place to Start.
Get Your Stuff Together
With cancer, there will be information flying at you from every angle. You need to be able to grab the information you’re looking for without searching through stacks of paperwork.
We lost an extremely important disk at the beginning of our journey that delayed our intake appointment at Memorial Sloan Kettering. Before we could meet with Sloan, we were making phone calls and running all over the place to get another copy of the disk.
YOU DON’T HAVE TIME FOR THAT, and neither did we.
Your time should be spent doing things that matter, not chasing down information you already have, but can’t find. Getting everything you need together in one place eliminates that panic feeling (not to mention hours of searching) when you can’t find what you’re looking for.
The Cancer Binder Pack is a free printable pack that will help you get all of the important stuff together and organized. It covers all of the questions the doctors will ask you over and over again. And it takes less than an hour to put it together (and minutes to maintain!). Just follow the step-by-step instructions included in the pack. And the best part, it’s FREE.
Once we did this, for the first time EVER…
- We had everything they needed.
- Everything they asked for.
- We got compliments from EVERYONE at the doctor’s office on how organized we were (which was pretty awesome considering what a hot mess we’d been before).
2. Always Have a Bag Packed
Emergencies and cancer go hand in hand.
In the midst of an emergency is the WORST time to be making decisions about what you might need. And emergencies always happen at the worst possible time.
One memorable morning I kissed my husband goodbye and headed out for a typical appointment. A few hours later, I was standing in NYC (2 hours away) in the ER with the clothes on my back. 10 days later, I was finally able to come home.
Something is always happening and you are always running around.
One of my best tips for caregivers, pack a bag in advance, so you can grab it and go when everything is falling apart. This is by far one of the best tips for caregivers anyone will ever tell you. Because you’re setting it up before the emergency, you’ll have a level head and time to think through what you might actually need.
And if you use the bag regularly (like for normal appointments), you’ll always have what you need if you end up in a crazy situation and can’t get home for a while.
Here’s what I keep in my “Go Bag.”
- Phone charger
- 3 pairs of socks
- 3 pairs of underwear
- 3 pairs of yoga pants
- 1 sweatshirt
- 1 sports bra
- 3 t-shirts
- Notebook and a pen
- Facial cleansing towelettes
- Hair ties
- Small hairbrush
- Bar of soap
- Bottle of shampoo and conditioner
- 3 days worth of prescription medicine
Then I leave a sticky note on top of the bag so I remember to grab…
- More Medicine
I can be gone for weeks if I need to with just the contents above. It’s nice to have time to pack real clothes but in a jam, this has worked for me. And if you’re spending all day in the hospital, yoga pants feel way better than regular clothes! 🙂
3. Plan Ahead for Panic
Emergencies are unfortunately a big part of cancer.
My dad lost his hearing shortly after his cancer diagnosis. And one night, pretty late he Facetimed me totally panicked to tell me that an ambulance was at the house taking my mom and I needed to come down. He had no idea why they were there, or what was happening, and neither did I.
I live on top of a mountain about 35 minutes away, and I flew down the mountain, with the most terrifying thoughts running through my head…
I had no idea what happened. If she was okay. And my dad who couldn’t hear me was sending me text message after text message which was a great way for us to communicate, just not right then.
I FINALLY got to the house, picked up my dad and we headed over to the hospital. My mom was being kept overnight (actually for days after that) because she was in Atrial Fibrillation and her heart rate was over 230 beats per minute.
She’s fine now, but she couldn’t tell my dad what was happening because she was seconds away from passing out, so she just called 9-1-1.
It’s like we had blinders on. We spent so much of our time making sure he was okay, and safety measures were in place for him, that we NEVER considered that something could happen to us.
After that horrific experience, we put a few simple (but powerful) things in place to help us…
- We placed a HUGE sign behind the front door and by the telephone stating that my father was deaf, and to contact my number for any emergencies.
- We also identified 2 neighbors who were willing to help if anything like that happened again. They could talk to the paramedics, communicate with my dad, and contact me with all the information.
- Finally, we purchased a caption phone, so my dad could talk but also read the response making it much easier for him to communicate with people outside the home. (Hint: it takes longer to talk this way since each conversation is transcribed and there is a bit of a delay. But, you are able to connect with emergency services if you need to).
Planning ahead for how you’re gonna respond and having your stuff together makes a HUGE difference when things get crazy.
4. Create a Weekly Plan
The only way that I could manage helping my dad fight this battle and still take care of things at home was to plan out as much of the upcoming week as possible. In addition to all of the appointments, symptoms, and emergencies we had going on, I still have work, kids, a husband, and a house that need time and attention.
A solid but flexible weekly plan is a must.
I have to know in advance where I need to be, what I need to do, and what can’t be missed.
- Overnight trips
- Soccer games
- Work hours…
The list is endless.
We have a really simple weekly planning system that helps you prioritize what matters and leave the rest behind. Mapping out a quick plan for the week, ahead of time tells me what days are going to be insane so I can plan accordingly. It also tells me which days if any I may actually get 10 min to myself!
Weekly planning helps me look at the week as a whole, so there are no surprises. I know what I need to do and where I need to be and I know what’s coming.
5. Be A Strong Advocate
There are a lot of crazy symptoms and side effects that come with cancer. It’s sometimes hard to know what’s an emergency and what’s not. And usually, the caregiver is the only one who sees the whole picture from start to finish because you’re there all the time.
What’s the best way to be a strong advocate for your loved one? Here are our best tips for caregivers who need strong advocacy skills.
Track important information:
Dates, times, symptoms, anything that makes the symptoms better or worse, pain levels throughout the day… Things like that can give the doctor a HUGE amount of information to help you get the issues under control.
Give details and use examples:
“This is the third day he has diarrhea.” “He’s going X number of times a day. We’re concerned about dehydration and he’s exhausted but keeps running back and forth to the bathroom. We’ve tried medicine, a B.R.A.T diet, and are pushing fluids with electrolytes but it doesn’t seem to be slowing down.” Paint a clear picture of what’s happening so the doctor can clearly see what you’re struggling with.
If you don’t know something, say you don’t know.
If you’re not sure something is important, it doesn’t hurt to ask. The doctors can’t help you if they don’t know what’s happening! If it’s an issue and it’s causing you or your loved one frustration, bring it up.
If cancer has exploded into your family and you feel like you’re drowning in the chaos with no air in sight… I know exactly what you mean.
You’re flying by the seat of your pants right now, just trying to make it through the day.
These crucial tips for caregivers will save your sanity while helping you get ahead and get your stuff together. So you’re ready for whatever cancer throws at you.
And you can finally take a breath.
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