It's been 6 months since we first opened our claim to request the long-term medical insurance pay for my mother's private caregivers at her assisted living home. Six months of managing my anger and frustration with niceties and resending 90 page documents followed by niceties again.  $70,000.00 of my mother's very precious money mailed off in monthly installments to help her reach her dream... her literal wish upon a star-- a supported and therefore vital, eased life that we now know does not exist for her or millions of others. 

$70,000 over 15 years to a dark hole somewhere in the midwest that calls itself "long term care". And I, I've spent myself, not my money, but my time, my precious time that could have been spent with my mother laughing, or with my two daughters, dancing, or with my clients, paying attention. But instead, my cellphone has become an alert system, telling me that weekly that the long term care insurance "team" has denied my mother's claim for just one third of her daily costs at her assisted living center.

Last night, I sat with mother and stroked her silky white hair as her nighttime caregiver and I shared stories of my mother's recent accomplishments and frustrations. "Did you write that one on the care log the long term insurance requires you complete?" I ask. "Oh sure, it's in there. Have they started the payments for our services yet?" "No, they're going to deny us again. They want to know why they should pay for you as personal caregivers instead of caregivers provided from this place's own agency". We all fall silent, shaking our heads from side to side. Even my mother, for whom language is a fleeting film of hazy words. She has heard us. She remembers the checks all those years. She's mad. We relish her appropriate response to this unethical situation. Shame on the system, we all nod.

I watch as my mom's loving caregiver rubs my mother's wrinkled yet soft skin and leans towards her like a daughter does to create the connection. I move my hand to my mom's back and  hear her relax into "you were so strong when you were a baby" and "why are you so nice to me?" I place my fact in front of hers and stare into my mother's distant eyes..."because I'm yours. You are mine. I'm your daughter, mother". She giggles at the answer and then, seconds later asks me "why are you so nice to me?" I repeat the lines over and over. 

Today, I'm on the phone with the nicest front line person at the insurance company. I get the news for the 5th time in a month: "we just can't seem to find anywhere in your mother's policy that says we'd cover personal caregivers, but , well, we may call a team together to go over this again in a few days. Oh and we need more documentation." I can't stand it. I can't respond except to say "I just want you to know that's unacceptable and we will not be giving up on her claim. If you could just understand how important her private caregivers ARE to her her daily quality of life!" Awkward silence. The woman either has heard this thousands of times and excellently fakes sincere concern, or...I think I do believe her that she cares yet is jailed from such compassion folly by the system. My heart is still racing as I hang up and politely thank her for her humanness. I immediately rush online to look for legal help and fall asleep hours later.

I want to be on that insurance company's evaluation team. I want my mother to be on that team . I want them to ask my mother a question, ANY question so they might see for just a  deciding moment that she can not maintain any conversation and needs constant care. She lost all her nouns last year, which are a humans' dearest friends. Nouns --the roots of conversation. 'I need to have a ....oh, I just can't say it..oh, YOU know what I mean". "My favorite thing to do every day is....what was I saying?" "Can you make sure I don't have any more.....what's that word? " My...my...oh what is it...well, whatever it is, it hurts terribly...". "I know who you are, honey, you're....you're..." sigh.

I want the AntiTeam to then see our private caregiver tickling my mother as she and I cleverly, discretly, softly steal her away to the restroom where the 3 of us squeeze into a metal stall and joke until my mother giggles all over the toilet. We clean the sticky floor and tell mother it's okay not to know how to wipe oneself.  We lie and say that neither of us knows how to do it either.

That insurance"team" is not "Margo's Team". They aren't in love with her like we are. They have a task to NOT provide. To NOT reimburse, to NOT help us stop the bleeding from my mother's bank account. They don't know the smell of my mother's skin nor her favorite color or artist, nor how she makes people laugh with her ornery humor. In fact, they have no understanding of her at all. And the system doesn't allow for it.

 

So, I'm going to just start our own team. I'm calling it Margo's Team and we will have our own conference calls and meetings where we document our challenges, our brainstormed ideas, our mission vision and values. Then we're going to send the huge charts we make to the insurance company, give them a follow-up call and put it all on the internet with a link sent their way. It's going to be Margo's Team that will bring the walls down and turn information into compassion, into action. Margo's Team will not drown nor give up the ship. I told them so at that insurance company. I told them the most powerful thing I could think of which doesn't sound like much, but it's all I can muster with so little sleep as a caregiver. I used two words men use among themselves as code for "you'll never get away with this";  simply...."That's----- unacceptable". The phrase strikes fear because of what it leaves out, the white space that isn't spoken. It leads the guilty to worry..."oh yeah? And so just what does THAT mean?" It has a sort of uppity tone that says "you can't even imagine how much I won't give up on this". It means we  have a team of bull terriers protecting not only mother, her money and her integrity , but also protecting the absolute responsibility of the INsurance world to ENsure; to ensure they make good on those promises they made to the faces of my  mother and her husband, innocent at their offices, vibrant and younger and more able to fight for their rights. Now, the husband has passed and along with him, thousands of dollars of unpaid claims as well.

I believe the broken system pieces are in the hands of people who might be turned around. Without a system that tells them they have an opportunity to improve it, all they can do is keep denying claims.

But Margo's Team must demonstrate hope and possibility and the expectation that system reform is fundamentally humane, possible and necessary. 

This long term care insurance and the facilities in cahoots with them  are responsible to move from mechanical systems to entities of service that resound the heartbeats of those who paid for them.