Top
HEY YOU!

Some Of Us Are Patients, Some Of Us Are Caregivers, Many Of Us Are Both

I am writing this from the hospital. – A hospital recliner to be specific.

Being a patient caregiver, living with a chronic illness and caring for others

We talk about patients, we talk about caregivers… What about the patient caregivers? There are many people in this world living with a chronic illness who are also caring for others, living with a chronic illness.

Yesterday I went to visit my grandmother and I was a bit surprised by what I saw. I’d just come back from taking my grandfather, her husband, to his appointment with his oncologist. I knew my grandmother wasn’t feeling the best, she hadn’t been in a while. She was curled up in her bed, looking pale, burning up. I asked her if she wanted to go to the hospital, she agreed to go. – Totally out of character for her. I tried to sit her up on the bed so we could get ready to go, but she couldn’t hold herself up and continued to fall over.

I called 9-1-1.

She was disoriented and really wasn’t speaking properly. I couldn’t understand what she was saying or what she wanted. I called 911. The operator was extremely helpful. I went to school for medical assisting and coding in the past. – I have a certificate in both. I know a (very) little bit. I intended on applying my credits towards my nursing degree, it’s still a possibility. – But I say that to say this: I know the basics of how to keep someone alive. The operator helped me to count my grandmother’s breaths while we waited. She said her heart rate was elevated so we watched her closely. A firetruck arrived first, as the operator said they would. They were extremely helpful. We talked about her medical history, they took vitals and we waited for the ambulance to arrive.

When the medics arrived they soon understood why I called. They tried to get my grandmother to walk to the stretcher. – She couldn’t even do that.  Long story short, we rushed her to the hospital. She was hospitalized the entire weekend. We managed to be discharged just as the snow // ice storm began to clear up a bit. It was a mess, but I got her home safely and managed to pick up her new meds from the pharmacy.

Some Of Us Are Patients, Some Of Us Are Caregivers, Many Of Us Are Both

We talk about patients, we talk about caregivers, but what about the Patient-Caregivers?! It’s a thing. There are patients, people living with chronic conditions, who are also caregivers. We live, trying to navigate our own doctor’s appointments, picking up our own medications, trying to deal with our own bills, insurance and other stressors, while also handling that of others.

Being a caregiver living with crohn's or ulcerative colitis

There is a big difference between a “healthy” caregiver and one living with a chronic condition. My condition complicates things. My immune system is often already compromised. I’m coordinating my appointments around those of my grandparents’. I’ve had to cancel and reschedule various things because it interfered with chemo or my grandmother needed a CT at the same time as my scope. It’s hard.

As a patient and a caregiver for multiple people, I think it’s so important to remind yourself of the role the person has played in your life. Patients are people too and I think in the midst of all of the appointment scheduling and refill ordering, that can easily be forgotten. – Or lost in the mix of things. No one wants to be sick. As patients, we know this to be true of ourselves.  As “Patient-Caregivers,” we know it to be true of others, we just need a reminder at times when things get a little hectic.

As “Patient-Caregivers,” self care is so important. We must prioritize our health: mental and physical, because without our own health, we can’t possibly manage another’s. When it doesn’t feel like there are enough hours in the day, we must make more. We must find the time when there is no time. Being a Patient-Caregiver is similar to being a parent in that way.

Navigating the healthcare system for one person is hard. Navigating it for yourself and another can seem nearly impossible, but it’s not. It is possible to care for yourself while caring for someone else. It’s tiring. It’s time consuming. At times it can be frustrating. – That’s okay. It’s okay to feel. You’re human.

When I first started caring for my grandparents, I felt so guilty. Guilty that I didn’t always want to be stuck under them. Guilty that I felt like I wasn’t living my life to it’s full potential. Guilty because I didn’t want to spend the days I had feeling good, in the hospital. – I hated myself for feeling those things, but they were all very valid feelings. It’s true. Being a patient is hard enough without having to re-do the entire process all over again with someone else. Don’t feel guilty for feeling.

If there was one lesson I’ve learned from “Patient-Caregiving” it’s to stay hopeful. – You never know what miracles will come your way. You’ll find out why in the next post or two so be sure to Subscribe!

 

PATIENT-CAREGIVERS: CAREGIVING WITH A CHRONIC ILLNESS

Comments

  1. Wow! I hope your grandmother is feeling better! I can so relate. Mostly my parents are in good health. Mostly my son is. But when they’re having heath issues that require my help, its so draining physically and emotionally. I forgot to wear a mask while waiting in the ER for my son to be attended to, and now I’m sick.

Let's have a conversation! Leave a comment!

What They're Saying

"Shawn. I see what you're doing in the IBD community. You're doing phenomenal things! Prayers for your personal journey as well as I know it can't be easy."

Felicia Robertson, MD June 23 2017
2017-09-08T14:16:02+00:00
"Shawn. I see what you're doing in the IBD community. You're doing phenomenal things! Prayers for your personal journey as well as I know it can't be easy." Felicia Robertson, MD June 23 2017

"You're the best! So glad you joined (the Patient Advisory Council of ImproveCareNow) and I hope we can get to know eachother better! Looking at your blog girl it's amazing. You're a beautiful writer and fighter."

 

Natalie B, PAC ImproveCareNow, April 29 2017
2017-09-08T14:21:19+00:00
"You're the best! So glad you joined (the Patient Advisory Council of ImproveCareNow) and I hope we can get to know eachother better! Looking at your blog girl it's amazing. You're a beautiful writer and fighter."   Natalie B, PAC ImproveCareNow, April 29 2017

"Chronically Strong is an absolutely beautiful blog filled with information about Ulcerative Colitis, Chronic Bowel Disease and Mental Health just to name a few. (Shawntel) has excellent healthy eating tips as well as a focus on overall wellness and nutrition, and recipes."

Leanne, Blogger, Aug. 2 2017
2017-09-08T14:26:29+00:00
"Chronically Strong is an absolutely beautiful blog filled with information about Ulcerative Colitis, Chronic Bowel Disease and Mental Health just to name a few. (Shawntel) has excellent healthy eating tips as well as a focus on overall wellness and nutrition, and recipes." Leanne, Blogger, Aug. 2 2017

" I've never found you to be anything but inspiring. Your honesty is refreshing and I like when people keep it real. Makes me feel it's ok to be human."

 

Sara R, Sep. 12 2017
2017-09-12T22:05:16+00:00
" I've never found you to be anything but inspiring. Your honesty is refreshing and I like when people keep it real. Makes me feel it's ok to be human."   Sara R, Sep. 12 2017

Though mostly about IBD, this blog covers a wide array of issues.  Shawn covers complex issues, like how her identity as an African American intersects with her IBD.  I am taken aback by the depth of each post! Whether you’re a blogger or an IBDer, her posts are sure to offer tons of inspiration.

 

Collin, Jan. 9, 2019
2019-01-09T22:11:58+00:00
Though mostly about IBD, this blog covers a wide array of issues.  Shawn covers complex issues, like how her identity as an African American intersects with her IBD.  I am taken aback by the depth of each post! Whether you’re a blogger or an IBDer, her posts are sure to offer tons of inspiration.   Collin, Jan. 9, 2019