What You Don’t Know Can Hurt You ~ Navigating the Challenging Complexities of Elder Care
“The lab work confirms lymphoma. I know that sounds scary, but I want to assure you that….”
The doctor‘s words faded to background noise as my ears tuned out & my fingers tuned in — tapping my phone screen to open the Google App, initiating a search for “lymphoma”
Found it - “cancer of the lymphatic system.”
My mind tuned back in as she carried on with a lengthy explanation peppered with unfamiliar terms: hemolytic anemia, hemolysis, indolent lymphoma….
It was almost 8:00 last Friday night, and I was standing dumbstruck in the flooring aisle at Home Depot looking dazed and confused.
I was hearing, but not comprehending,
struggling to fully process the import of her words, yet having an unusually hard time doing so.
Is she seriously saying my dad has cancer—on top of kidney disease, on top of coronary artery disease, on top of Type 2 diabetes, on top of ….. the list is long
I reached into my purse and extracted the notebook that has become for me like the American Express Card—“don’t leave home without it.”
My hand commenced the copious scribbling of notes, fingers cramping as my right hand dashed back and forth across the page at warp speed—anxious to capture the gist of what was being said.
The hematologist projected an optimistic enthusiasm which helped subdue my initial sense of alarm at hearing the dreaded C word associated with my fathers already fragile and tenuous health status.
And then a few days ago, I received a follow up call from Tiffany — A perky, upbeat member of the staff at the Oncology practice to which my dad has been referred.
No chemo.No radiation. Only a pill which stops the production of cancerous cells and puts lymphoma in remission. Average life expectancy with this type of cancer—12-14 years.
Good news!
And then came the cost. Her perkiness abated. Her tone softened. And she commenced detailing the pricing structure.
“The drug he needs is covered by his insurance,” she began, “but it does have a fairly hefty co-pay, which is why I’m calling.”
I took a deep breath feeling the tension rise in my chest as I responded: “Define hefty”
“The co-pay is $2,000 for a 30 day prescription. So you’d be looking at $2,000 a month.”
Stone cold silence. Words escaped me. Surely I mis-heard.
“Mrs Bethea? Are you still there?”
I found my voice: “$2,000 for a one month supply, of one drug? And two grand is the CO-PAY???? How is that even possible?”
My mind has blanked on what she said after that. I can’t even recall how the conversation ended.
She said something about potential financial assistance based on need, but it fell on deaf ears. I already knew my dad would not qualify for need based financial assistance. We know better than to even try.
He was a civil engineer. He has a healthy retirement income. He has good insurance. His expenses are minimal. There is no struggling to make ends meet….under normal circumstances.
But the current circumstances are not “normal”.
It never crossed the deepest recesses of my mind that he might need, at some point, to move to an assisted living facility or need ONE singular drug that has a co-pay that exceeds the cost of many people’s mortgage! A drug that retails for as much as $15,600 for 60 pills to those without insurance. A drug that has no lower cost generic equivalent.
I thought I was fairly financially literate about retirement savings and end of life planning. My father and I did an in depth consultation with an estate attorney just last year. I THOUGHT I was up to date. I no longer do!
And here is why I’m sharing this story.
I have been taken to school on more financial and medical issues, aspects, and anomalies of end of life care than I can enumerate.
I’ve enrolled myself in an end of life planning class to remedy my recently recognized knowledge deficit.
I have been stunned by the ramifications of things I did NOT know. And shocked at the insufficiency of much that I DID know.
Fortunately, the lymphoma medication situation has been remedied. With help, I secured a grant from a cancer foundation that will cover the first nine months of the prescription with a zero co-pay.
If it is still needed beyond the covered period the subsequent cost would be $600/month.
My brain struggles to process $600 for one damn medication, (my dad is currently on 10 others) but we can do that. However I know many people for whom an expense of that magnitude for medicine would be an impossibility. Especially on a fixed income!
So if you are of the age where retirement and end of life care seems afar off, and you believe you have forever and a day to prepare—-I encourage you to think again and start investigating.
Life comes at you fast, and many of us don’t carefully consider the totality of what we need until it’s too late.
If there is one upside to this seemingly unending medical debacle in which my family is embroiled, it’s that it has caused us to pause amidst the chaos to evaluate the state of our own retirement savings.
In so doing we’ve realized that what we thought was plenty, is sufficient only if we remain in our home, with good insurance, in reasonably decent health.
And in 2022, I’ve learned from first hand experience that I cannot assume this will always be the case. The GOOD news is that it’s not too late to do a major financial pivot which we set in motion—immediately!
The moral of this story: What You DON’T Know, CAN Hurt You!