I had a request in to my mother’s Managed Long Term Care (Medicaid) for more hours of coverage. Clearly, eleven hours of care would not be enough and as we didn’t know what we were facing, we had to be prepared. I had gone through thousands of her savings over the years all for home care; we had gone through enough money that she had squirreled away when interests rates were high and IRAs and CDs had yields you didn’t laugh at. Gone. Down to a few bucks that were destined for toilet paper and a dish towel. The balance just kept getting lower and lower.

So, when you have to lay out about $5,000 a week just to augment the current 11 hours of care she is getting, it is scary, very scary for a daughter on social security.

I received a call yesterday from a male nurse who was obviously used to talking to old senile people. I guess I fall into that category. He spoke slowly, enunciated overly clearly and succinctly and hyper-explained everything to me. I would have to hold the phone up to my mother for him to talk to her. Only one problem: I don’t live with her. He got agitated and explained how we could do a conference call if the aide would participate and help at that end. We agreed on 4:00 PM, about a half hour away, to set things up. After a snafu, of my mother’s phone not ringing, we were all on board. And then more snafus: Mr. Succinct announced he was getting a call, a text, that he had gotten distracted, he had to refocus. My reaction was that this guy sounded like someone who moonlights as a Broadway chorus guy. Eventually things fell into place and he began firing questions at my mother, talking to her as though she were three years old. At this point, she might be.

But something was odd, not right: on this conference call, I could hear my mother yelping, wailing, screaming in pain. It was horrible, disturbing and mortifying, but somehow it couldn’t have come at a better time. Her toe hurt. And it must have hurt very badly because she was moaning and crying for the duration of this good hour of interviewing.

Let’s begin: She knew her name. That was good.

Then the need for more responses. Her voice rose at least four octaves. Who was this person? Where was this childlike voice coming from? It was MY mother. MY mother who didn’t know the date, her age, her birthdate. My mother who used to be able to sing every show tune was now drawing blanks, temporally confused, in pain. My mother screaming: I’M AFRAID! And Chorus Guy answering in his best humoring, placating voice, like he was talking to a puppy, “you’re afraid, what are you afraid of?”

And, I am thinking, “work it ma, work it!” Be as nutty and childlike and pathetic as you wish because the truth is, if THIS is what is going on, we REALLY need 24-hour care.

The questions dragged on and on, every detail every nuance every emotional rock was not left unturned. And still my mother continued to cry in the background: her toe! her toe!! People with Covid can lose limbs, get blood clots, gangrene. I am more and more anxious. OHHHHH it hurrrrrrrrrts!

Is this what happens to the mind that is nourished by consommé, sips of Ensure and V-8? Did this virus tangle her ganglion into knots and prevent the usual synapses that were already compromised?

Candy answered every question openly. My mother, this little wailing woman, was no longer able to answer the phone, to make a call, to leave her bed, to go to the bathroom. The person who bore me was being rewound to infancy, relying on cries, having a diaper changed, calling the aide MaMa.

I was officially an orphan.

When the questioning had ended and Chorus Guy had completed reading me my rights, in his best emotive stage voice, telling me this process and that process could take two weeks, something in me erupted: I CANNOT WAIT TWO WEEKS. I CANNOT FUND THIS EXTRA CARE. I NEED HELP NOW. Chorus Guy THEN tells me that it sounds like I need this case EXPEDITED. He’ll put in for that. He didn’t tell me about that process until I emoted, he kept that as his secret; what does one have to do to find out all the ins and outs; grovel, no doubt. I may have a response on Monday and if it is not to my liking I can contest it and go to an arbitrator and THAT could take another month, which translates to about $20,000 from my pocket.

My mother is still wailing in the background. After hearing my rights I want to wail along with her. In fact I want to stand up in the middle of an empty Times Square and scream FUCK YOU, SYSTEM! In the middle of a Covid pandemic, who would care?

I called her doctor and filled him in. I told him my mother was in pain. He said he’d call in a prescription for Percoset. In the course of the conversation I realized how confused by details this man could get. True I was talking to him as he was leaving for the day, the pharmacy was closed. He mixed my mother up with another mother who was on a morphine drip. I am now sure he is the one who callled for the ambulance last week, confusing his patients.

Then I left a message with the Hospice nurse who texted me back; I had no way of knowing who to call, no number no nothing. And it seems, from what I was told, that there was a pack of syringes in the refrigerator, pre-filled syringes, the kind I’d give to my cat, with a PAIN-KILLER. BUT, the aide wasn’t allowed to give it to her, only a nurse. BUT I could HIRE someone in the building, another aide, to give it to her. OK THAT makes so much sense. HIRE some person in the building to give my mother a pain killer? A person working with another client? What the hell kind of solution is that? What sense does that make? MY aide can’t administer but another aide can, because she would be considered “private pay.” Thanks a lot, we’ll stick to Advil in applesauce. And wait, the woman I hire for the night IS private pay. And Candy is technically private pay from 4:00-5:00 PM!

The rollercoaster was dropping and dropping as was my ability to stay awake, to process any information. And so I crashed and then woke up three hours later with my mid-night anxiety: Candy is working 4 days now, 12 hour shifts. The other 3 days someone else will come in. Will that person be on top of everything? Change, feed, administer, be kind, know what to do, where things are. And who comes in at night? What goes on then?

After my usual lousy night’s sleep I texted the aide to see how things were going.

“GM Susie, she do not have any pain she talking long time story. She talk about her mom and dad. I give her soup and Ensure.”

My tense muscles begin to relax.

“She said she was born in 1502.”

My muscles begin to tense. And then, I find some humor and I realize my mother is a lot older than I thought. No wonder I consider myself a Renaissance woman.

The “night” aide gave her a few drinks during her shift. OK that’s something. And my controlling mother didn’t complain. In fact, it looks like she is getting comfortable relinquishing control.

The roller coaster is now making an ascent.

What will be the next loop?

This series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey

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