Part of the reason why I took to the blogging world was to help educate others about caregivers and what we, spousal caregivers especially, go through on a daily basis. But in the end, what I’d like to do is change healthcare.
Yes, I have big dreams.
And I know that they can be accomplished. I know that one person, if he or she speaks loud enough, can be heard and can make a change. I plan on doing it. I shall “Lean In.” (No, I haven’t read it yet… but I like the concept.)
What I want to do is help educate caregivers about the healthcare system, who in turn, will educate those they care for about the healthcare system (if possible). What I’ve realized, while working with our change processes at work and getting training in lean and change management is that in order to accept change, people need to fully understand it.
And really, you can look at caregiving the same way. Until I truly understood what it meant to be a caregiver and what I had to do to keep myself sane, I couldn’t completely accept my role.
Or change it.
I think we can all agree that our healthcare system needs to change. right? yes. BUT I’m not sure we’d all be in agreement on why or what. Therein lies the problem. How can you change if you don’t know what TO change? And that, ladies and gents is what brings me here…
What I want is for the healthcare system to be centered around the patient. I do. I think it can be done. And, I’ll be honest, I don’t think too many people are doing the right thing to get it there.
Yes, so many organizations are saying they are centered around the patient and doing what they can for the patient but are they really? Have they talked to you about it? As the patient? Have they? Not that I can see. Instead they are doing what they THINK the patient wants and not what the patient ACTUALLY wants.
Honestly, it fries my butt. It does! I could pontificate for hours and hours and hours but well, I won’t. not right now at least… ha!
What I will do is explain that our system is built around acute care and not chronic care. What does this mean? It means that for my husband, when he was first injured, he received AH-MAZING care.
Trust me, I wouldn’t take any of it back if our life depended upon it. I think it’s great. I do. I’m glad it all happened.
BUT once he was stable and ready to go home, that’s when things fell apart as it does for most living with a chronic condition.
It wasn’t that we were left without care. It was that we had to figure it out for ourselves. No one knew. His doctors weren’t sure. Insurance did not know. And we most certainly had no idea.
So I took over.
I learned that, in order to keep our insurance, have both of us work and continue our life before the injury, we would start paying out of pocket for almost everything. Now, don’t get me wrong, his doctors visits and most medication was covered.
His care at home was not.
His rehab was barely covered.
Preventive care was not covered.
We were left to figure out the best way to live our life and keep him healthy on our own.
Five years post injury, we’ve done a damn good job.
The quad is incredibly healthy, he works out (sometimes…), and we have a PCA come to the house once a day, every morning, for an hour so he can get ready.
Because of what we do, (working out, eating healthy), the quad stays out of the hospital.
Since he stays out of the hospital, our bills stay low, as does the bills for our insurance company.
Yes, this is true.
There are studies that show that SCIs working out have lower problems with ski breakdown (hello skin sores) and overall health. Know what that means? Lower hospital bills. However, the equipment needed for working out, isn’t covered by insurance. It’s considered “extra.”
Instead of spending $10,000 on a workout bike, insurance companies will spend hundreds of thousands on hospitals stays over the course of a patient’s life.
No, it does not make sense. However, these are things that people do not know about the current system. And until they do, there will be no push for change.
And that my friends is why I led you on that long, convoluted blog post… So you’d see a bit of why I’m doing this. Not only do I want others to know what I deal with but I want others to know what SCI families deal with… I want to make a change. I NEED to make a change.