Stage IV Caregivers, Acknowledge How Hard This Is So The World Will Be On Your Side
When my first husband had Stage IV bladder cancer and our days were incredibly difficult, I remember wondering often: why doesn't the world seem to acknowledge how hard this is? And why does everything I do seem harder than it used to be? Offices placed me on hold like they always did; I had to wait in line at the pharmacy like I always did; people jostled me on the street and bus drivers were sometimes rude. These things may have annoyed me in the past but in the context a terminal cancer diagnosis, they often put me over the edge.
Seeing the world through the lens of a stage IV diagnosis
The world and the lens through which we see it is more painful and difficult in light of a Stage IV diagnosis. This is especially true if things are not going well for the patient. At those times, the line at the pharmacy or the rude receptionist can send you into a rage.
Explaining your reality
Here is something obvious but it took me awhile to realize and internalize: "the world" will not know or understand how difficult your situation is unless you tell them. And if you tell them in the right way, they can become an ally in making your life easier.
I believe if you can cultivate the art (and it is an art) of finding a way to acknowledge the severity and difficulty of Stage IV caregiving without seeming to seek pity, you will be giving yourself the ultimate self-respect and self-care. And you will recruit allies.
No one knows what you're going through
It is critically important that you let the world know what is happening at the moment it is happening. This is because the Stage IV experience influences your every interaction and clouds your responses to external events. No one can understand why you're furious at waiting in a long line at the pharmacy. They don't realize this is the eighth time you've been there this week. They don't know about the prescription mix-up that caused your insurance to erroneously deny the prescription. Nor do they know about the roughly two hours you already spent on the phone with the insurance company and the pharmacy trying to straighten it out.
Sharing your story
I'm not suggesting you relay every excruciating detail of the mix-up to the fatigued pharmacy tech at the counter. But I am suggesting that if there are any more problems when it is finally your turn in line that you (both gently and firmly) selectively tell him or her about the extensive amount of time you have already spent due to the mix up. And that you have a very sick cancer patient at home relying on you to quickly obtain this medicine. And kindly ask him how he might assist you in resolving the problem so you can help your patient.
Gaining empathy and understanding
If you keep it factual, gentle, and firm, most people will empathize with your plight. If you fly into a rage or dissolve into tears, they likely will not (trust me, I've tried all of these approaches). Telling your story selectively and calmly is easier said than done but it is worth practicing. Try breathing and pausing in the moment. Try viewing the situation as if you were an objective observer watching a movie of the scene. What actions on the part of the character playing you would trigger empathy in you? Practicing these skills will calm you and help you inspire empathy in others. This, in turn, will make your life easier.
Have your views towards bladder removal changed since you were diagnosed?