Let’s be honest – our Healthcare system is complex and overwhelming. On Caring and Grief was created to help you feel more equipped, informed, and confident about advocating and ensuring quality healthcare for you or your loved ones. We’re also here to help you feel less alone when dealing with the grief that comes along with an illness and the unfortunate loss of a loved one.
Does this sound familiar?
YOU HAVE SOMEHOW BECOME A HOME NURSE WITHOUT THE PROPER TRAINING.
You’re expected to understand pre/post procedure and treatment instructions, all written in medical speak, with only 30 seconds of review with the doctor. You’re monitoring heart rates and O2 stats and blood pressures (which you take manually after watching a YouTube video) and…
YOU KNOW HOLD
MUSIC BY HEART.
You get inundated with 800 numbers and everyone you call either doesn’t have an answer or keeps giving you a new number to call.
YOU ARE UNDER STRESS... AND A MICROSCOPE.
Everyone is looking to you for answers and to make decisions right this very second. At the same time, you feel like you’re being judged for every decision you make.
YOU FEEL GUILTY FOR NOT BEING AT WORK AND FOR NOT SEEING FRIENDS.
And then you feel guilty for thinking of yourself when you “should be thinking of your loved one.” You can’t relate to anyone right now and it seems like no one can relate to you. So you ice yourself out even though you’re going through a time where you need people the most.
THE WORLD IS STILL TURNING.
You become frustrated because you’re dealing with something world-changing (at least to you) and yet, life is going on without you. You also might wish this were a bad dream that you might wake up from…
YOU'RE TRYING TO KEEP EVERYTHING IN LINE, BUT YET YOU'RE POWERLESS TO DO SO.
Sometimes, you get annoyed because no one is talking to you – especially because it is YOU who is calling on behalf of your loved one. They won’t speak with you simply because your name’s “not on the account” or you don’t yet have power of attorney.
I know what it’s like…
My husband, Kevin was diagnosed with cancer, a type of cancer that has a very high cure rate.
Two major surgeries and remarkably, no chemo later, K’s cancer was in remission!
Unfortunately, Kevin’s cancer returned and he immediately started chemotherapy. This is where things got scary. Really scary.
Sunday, April 26, 2015. K was extremely ill all morning. Given the fact that he had chemo two-days earlier, we thought that he was dealing with a typical case of chemo-related dehydration. But something didn’t feel right, so we called the on-call doctor who told us to head to the ER for fluids.
“We’ll be in-and-out within a few hours.”
When we got to the ER his heart rate was sky high, his blood pressure was low and his breathing was becoming more and more labored. He had test after test after test, though no one was talking to us to explain why. We quickly realized that this was not a typical case of chemo-related dehydration and that I was wrong, very wrong, when I told him earlier that “we’ll be in-and-out within a few hours.”
Suddenly – what we thought was dehydration became a life or death situation.
Kevin continued to deteriorate. We moved from the ER to an oncology floor before moving to the MICU when they lost his pulse. By the time I saw him again, he was intubated. I was then told that he needed surgery, emergency surgery. Suddenly – what we thought was dehydration became a life or death situation. In fact, no one thought he would survive the surgery.
The next few hours were full of tears, pacing, and panic. He survived, thank God. But things didn’t stop there. Kevin endured ten more surgeries over the course of the next 14-days, the realization that he had lost his vision during his initial trauma and a rather large setback that would hold him hostage in the hospital for five months before another MAJOR corrective surgery in October of 2015. The good news? The little chemotherapy K managed to receive before all of this trauma was enough to send his cancer back into remission.
But not for long.
Unfortunately, his cancer returned just as we were about to head to rehab. Kevin spent another five months in the hospital while receiving chemotherapy and dealing with even more life-threatening complications.
Fifteen months after the day we walked into the emergency room, two code blues, one rapid response, the loss of his vision, and a lot of other scary and dramatic moments in between, though, Kevin came home. Forever changed, but home.
We were lucky to have Kevin home with us for two and a half years before we learned that the chemo that he received to cure his original cancer had unfortunately caused a pre-leukaemia called MDS. While he still had a lot of fight in him at this time, this new disease was…well, Kevin passed away at the end of April, 2019.
What to Expect From On Caring And Grief
I created On Caring and Grief to share with you the strategies—in the form of advice, how-to’s, and personal stories— that Kevin and I used as we navigated his care to help you feel more confident in advocating for yourself or a loved one. These strategies were crucial to ensuring that he received the best care possible, even when he was under the watchful eyes of a few of the best doctors in the country. Without these strategies, Kevin would have suffered more than he absolutely had too. That’s the unfortunate truth and we want to help you avoid unnecessary pain and suffering as well.