Caregiving is hard. No. Really hard.
I feel like every conversation about unpaid family caregiving should have that statement included and, in this writing, I have inserted it on Line One.
I’m tired. Tired of fighting the cell phone company because they sold a $1000 iPhone to my mom without my approval. Tired of mom losing said $1000 phone, sending it out to the laundry at her skilled nursing facility. Tired of reminding the staff at the facility to give mom a bath. Tired of worrying and wondering if I am giving good care. Can I do more?
July 2023 was the month that broke the caregiving mold. Mom died in the insurance world. The moment I was vividly made aware of her “demise” to Medicare - the baths, the phone, the guilt, and the grief – they had to move to the rear. You see, caregiving is not getting a band-aid and making soup folks. It is A-D-V-O-C-A-C-Y and sometimes it’s war. In the fight to regain mom’s “life”, I’ve learned a few things I need to share.
RETURN MAIL COULD STOP YOUR INCOME.
I first noticed a problem when dad’s pension check did not deposit. One call and I was told the pension plan’s annual mailing was returned undeliverable. No attempted phone, email, or text contacts to the Power of Attorney (me) were made to inquire. The deposits were simply stopped because it was assumed “she had passed”. The representative said that.
I completed the change of address, and their system was updated that day. We would miss the next direct deposit and, to add insult to injury, the accounting department would mail the backpay within 14 – 21 days based on the current check writing schedule. “Sorry. That is the policy.”
IF YOU DON’T KNOW TO ASK, YOU WON’T ALWAYS BE TOLD.
Every month I receive a call from CVS Specialty Pharmacy to refill Duopa, our Parkinson’s medicine. There are questions about mom’s health condition, supplies needed, number of cartridges left and shipping confirmation for the refrigerated cooler that arrives overnight. CVS Specialty Pharmacy calls, then text and emails if no response is received. That’s thorough. In July, the calls and messages were urgent. The insurance approval would not go through.
And just like a beacon of light – a piece of mail arrived that very day from the pension company. The insurance had been canceled due to failure to pay. The premium that auto deducts prior to the pension deposit had not been available. Why? Remember the returned mail and the assumption that “she had passed”?
I’m not sure how my phone survived as I dialed the “Please Dial for Assistance” number. Without insurance, how would I get any of her medicine? I started to cry – angry, fury, fearful tears. They just kept transferring me trying to get me to the right department.
I can’t remember the haze of those voices but finally a cheery girl came on the phone. She could help me. Simply send in the $497.00 due for premiums and they will notify the insurance provider. Mom would be resurrected. It should take about two weeks.
I remember pulling out my nicest “ma’am” plea smothered by tears. “Ma’am, her medicine is over $7,000 for 30 days and we need a refill now. We don’t have that kind of money. Please help me.” She said I could request reimbursement once the insurance was reinstated.
*Note on medicine because it’s a BIG DEAL.
Mom is on a Duopa pump. It’s what we consider a Parkinson’s miracle drug. The medicine, which is delivered directly to her stomach via a stoma, eliminates 16 daily pills. Understand something – 3 of those pills are for severe anxiety. Without the pump, she lived in a perpetual panic that medicine would not be administered every 2 hours as prescribed. Failure to meet the schedule sent her into a physical, mental and emotional Parkinson’s tailspin. She experienced that far more times than anyone should.
When we received approval for the pump, I sobbed. I’m crying now at the thought of that victory. The impact it had on her life. In all our lives. But that is another story.
DO THE RIGHT THING.
I dialed CVS Specialty Pharmacy with no fight left. I didn’t have any expectations when I made that call. What I got was an angel. I got Eileen.
I explained the story – the returned mail, the delayed pension deposits, the canceled insurance, the $7000 prescription, the two-week delay for reinstatement, my guilt, my failure – she got it all. All of it through tears and fear. You see I am a caregiver, but I am not a superhero.
“Take a breath. Your mom is going to get her medicine.”
How did she know those were the words and the assurance I needed? How did she speak with such resolve, compassion, and authority that I felt like they’d escalated my call to the CEO? Because it was the right thing to do.
*Note for where I come from.
My grandparents owned a hardware store in a small coal mining town for almost 50 years. There was an old cigar box filled with pieces of torn paper, written on each a name and amount of kerosene. In that poor town, no one was cold in winter. When money came in, from crops and more work, the box would empty when payments were made. Assuring everyone warmth was the right thing to do.
…BACK TO THE STORY.
I took far too much of Eileen’s time that day. She made me feel seen, valued, and heard. Ultimately, she made me laugh through my tears at the insanity of it all. She was my lifeline. She was MY advocate.
While the chaos continued to evolve, CVS Specialty sent out an emergency shipment – with no insurance and no payment from me. I would speak to Eileen 7 days later when there was still no insurance. Again, CVS would not stop the shipments.
Why? I believe corporate culture should start with “Do the Right Thing” and I believe Eileen lives that at work and in life.
EVERYTHING HAS A LESSON.
Remember “If you don’t ask, you won’t be told”?
“Your mom should not have had Medicare premiums”, I was told by an insurance broker. He walked me through the programs she qualified for, and I cried (again) when he told me about the free dental, vision, supplemental companion care coverage, healthy food and OTC benefits, and so much more. We changed policies. Folks, know your insurance benefits and if there is a better plan, change. Don’t be afraid.
Call the drug manufacturer directly if you don’t have insurance or have issues covering the deductible. Many of the specialty drugs have assistance programs they offer. Don’t be ashamed. Be relentless.
Here’s my truth. There are good people out there and good corporations that empower them to make decisions. To listen and find human focused solutions. It is not always about a policy. It is about following your heart.
To my friend Eileen and her family at CVS. You heard my plea that day. “Please help me.” And you did. You chose my mom and her medicine over insurance bureaucracy. You chose our family at a financial risk. You chose to do the right thing.
We will be forever grateful, and CVS customers for life - especially when it comes to Kleenex for all my tears.
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