There’s a scene in the movie Beetlejuice that cements Tim Burton as a cinematic genius, The Neitherworld Waiting Room scene. See, post-death humans have to enter the waiting room to meet their case worker. The ghosts in the movie, Adam and Barbara, didn’t understand the process of crossing over until they found their copy of The Handbook of the Recently Deceased. Once they enter the waiting room, they’re met with grotesque civil servants and (pardon the pun) hellish wait times. One movie review website nails the description: it’s like the social security office and the mortuary had a baby. Entering the office requires knocking a certain number of times. There’s a turnstile involved, along with digital turn counters (resetting every 100 billion deaths), and lots of rules. Some spirits are forced to stay Earthbound for 120 years. Some have to be allocated to different departments with equally complicated entrance requirements. Also, you’re only allowed three appointments. It is clear that some of the waiting room occupants have been there for literal centuries. It seems that, even in death, bureaucracy reigns supreme. Except, we aren’t actually talking about death today. We’re talking about what it takes to get anything done through government run healthcare, specifically Medicare and Medicaid.
We were overjoyed when my mother was granted Medicaid coverage this past fall. It took over seven months to get an answer, seven months of waiting on the other shoe to drop and wondering, every moment of every day, if it would drop in our favor. Mom’s dementia had progressed to the point where I wasn’t having much luck keeping her safe. Our mother/daughter relationship was in shambles, through no fault of either of us. Each day existed in a web of tears and frustration. Mom didn’t understand what was happening to her. I didn’t understand how to soften the blow of ripping someone’s independence away from them, one activity at a time. First, I eliminated the cooking. Next, I took away the privilege of coffee making. Then, I removed all of her hair appliances. The stovetop knobs had to be hidden. All the sharp objects had to be removed. This list of personal disgraces is long and painful. But, finally, that is over! Medicaid is in place while she is in a place that is able to care for her with dignity. That mother and daughter relationship, that doesn’t need the words that are no longer there to comfort us both, is back! Also, the entire long term care facility mechanism was supposed to ease at this point. I was thrilled! Things were promised to us – ach auto drafts, for instance. Oh, but aren’t the best laid plans apt to fall to the mice and to the men?
October, November, December, January… I had called over 25 times. I had written blissfully sweet emails. I had written woefully scathing emails. I had cc’d the big wigs. I had visited in per son. The administrator would not help me. The hospice team could not help me. No one knew what to do about an auto-draft. It seemed like I would be stuck hand writing checks for eternity. And, I’m not good at being angry. So, I resigned myself to a career as a professional check writer and decided that snail mailing Mom’s rent would be my life’s path, until I got the “call” last week. Mom’s check was late. They were FURIOUS. A little polite prodding on my end uncovered the fact that her payment was delayed the month prior, as well, and that I narrowly avoided that nasty call list then, too. Her check magically surfaced on some one else’s desk. Turns out they had it the entire time. More prodding uncovered the fact that the finance team is working from home. They don’t actually have access to the daily mail, depending on others to efficiently sort and open. That’s when I saw my opportunity. I’m not one to challenge anyone about anything, introvert that I am. Nevertheless, I lit into the person on the other end of the phone with a fiery passion that surprised even me. Now we have an auto-draft form! What do we not have? Strong enough internet to scan and email it back today.
There are numerous other instances of my mom being advised incorrectly or shuttled the wrong way in this journey. There are so many annual reviews. There is a Medicare annual review that determines your coverage amounts based on your income. There is a Medicaid yearly examination for the same reason. There’s even a Texas Health and Human Services review that needs specific questions answered. Dropping the ball on any of these spells out catastrophe for Mom and all of her eligibility coverage. Her very life depends on the continuation of these programs. But, yet, I don’t have the option of uploading her documents online. See, pre-Alzheimer’s Mom had a login and a password for all of these sites that no amount of arguing or legal documents can find or reset. So, we copy and we copy and we fax and we mail. There’s the disgraceful treatment she received from her cell phone carrier who refused to disconnect her phone without a certificate of death from the state of Texas. There was the day that a cardiologist saw her blood ox level below 80 and never even suggested we visit the ER. There is the recent heartbreak of her sweet little gentleman friend, the one whose hand she loved to hold, being yanked from her life to a facility closer to his family. And, even now, I’m denied the communication I need to see how she’s fairing as she sits in the LTC Covid ward. Though she seems to have turned the corner without many ill effects, my daily calls are met with sighs and perceived eye rolls. Still, my mother is one of the fortunate ones. I promised with the power of a million suns that I would take care of her. I will journey to the Neitherland waiting room, more than 3 times, if necessary. We’ve got this, Momma. They haven’t created the red tape that can hold me back.
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