Every now and again, I’m inspired to write about something that either
pisses me off burns me up or tugs at my heart strings. I think this post will have a little of both. I suppose this is why we have “the podium” here at Innovative Nurse.
So, one of my Tweeps out there, @RedTapelass (Tashi), is fighting the good fight to have whatever “crammed in” life she can have with her dying husband, Wash. From what I’ve gleaned from her blog, Wash was diagnosed with Glioblastoma Multiforme, a terminal form of brain cancer.
Their story follows the path of many out there struggling to receive good quality healthcare at an affordable price. You don’t usually hear good quality and affordable in the same statement, but I’d really love for it to be the tagline for our fractured system. I can dream can’t I?
So it seems that in order for Wash to receive the daily care he needs, Tashi had to quit her job to become his full-time caregiver. As you might imagine, with no income but from the small amount they receive in state assistance, they are barely able to maintain. Wash was admitted to home hospice at the beginning of this year and although these services can provide a great support to a patient and the family, it can still present a financial burden.
As you can also imagine (and if you can’t, then I’ll tell you), Tashi is sacrificing her own health to care for her husband. As a nurse and patient advocate, I hear this story time and time again. Think about it. So because one individual can’t receive the support that they need, we could potentially be adding one more (the caregiver) in the mix of patients foregoing care because they can’t afford it, or just don’t have access to it. Caring for a loved one at this level shouldn’t ever have to be a consideration, because the caregivers end up losing so much of their own good health and the precious time that they should be spending to create wonderful memories.
This situation is just another wake up call that the system isn’t working. I’m reminded everyday when I work with people who are having to cut medicines in half to make them last longer, skipping needed therapies, and selling off their belongings just so they can live. I’m fortunate enough to have the training and knowledge about how to navigate the system. It’s one of the services that I provide, and everyone should have access to this kind of support, but they don’t.
It’s not about cutting corners with our patients’ care, but more about streamlining the proceses so that they can receive the much needed care without burdening them, or the system. I’m able to fill a lot of
gaps gaping holes for the people that I serve, but again, there just aren’t enough of those services available.
Tashi, even as a nurse I don’t know what I would do if I had to go through this with my wife. Initially, I know I would be paralyzed. To think about life without her just makes it hard to breathe. What you’re doing for your husband is incredible, and I know it seems that you are getting robbed of a life that you and Wash deserve together. Some may say that it’s not about what’s fair, but I’ll go ahead and join you and scream out loud letting everyone know it’s not fair, and it sucks!
My wife’s sister was very recently diagnosed with cancer. I don’t think there’s much in this world that knocks you off your feet any harder than when you’re just living your life one day, and in what feels like about the next couple of breaths your told that you’re dying. We hope that she’s going to kick cancer’s ass (if anyone can do it, she’s the one), but it really is hard to get used to the “new normal” when you’re faced with something like this. Words just can’t really describe it, but I certainly applaud your efforts to share your story.
To all of you either reading this post, or following Tashi’s blog, take a moment and show appreciation for those special people in your life. Whether it’s your spouse, your partner, your kids, or your parents, let them know how much you love them. The tables can turn quickly, and without warning. Make sure to live big, love big, and open your hearts and help those in need. Sometimes it takes a village.