Last night I was emailed by the care manager of the agency that provides the New York State Medicaid that pays for the aides.

When my mother was first brought back to NYC, we were, after months of research and paperwork, able to get her an aide for eight hours a day. This came about after months of private pay that drained a life savings, at $6-$8,000/month. It is one of the scariest things an elderly person and their family can go through.

She had some subsequent falls and issues and after years, the provided hours went up to eleven. But there was always a fight for that time, the state gives but is not generous. That meant an aide coming in at 7:00 am and leaving at 4:00 pm, my mother would be alone from 4:00-5:00 pm. Another aide would come from 5:00-7:00 pm, help with dinner and then get her to bed. Many different people came and went. She disliked most of them. Until the current aide, “Candy” came three years ago. But Candy has endured my mother’s on-and-off-wrath over and over.

What my mother needs now is twenty-four hour care, having had a huge set-back by the Corona Virus, now being totally incapacitated. I was interviewed on Saturday via conference call with my mother and the aide within earshot. The interviewer-nurse representative asked me what I was looking for: full time care. Did I want a live-in or two twelve hour shifts? I didn’t know what to ask for but I ended up thinking quickly and asking for the two shifts. It dawned on me that one person could not handle this job, that my mother was still Covid+, that she is up at night and the aide would not be able to sleep, that a person could not sleep at a safe difference in a studio apartment, and how could one sleep in a mask?

The verdict came in last night: 24 hour live-in. My anxiety level ramped up for the above reasons. I contacted the care manager again and she realized, there cannot be live-in help if the aide doesn’t have her own bedroom.

Back to the beginning. I alerted this one and that one. The clock is ticking for another big charge on my credit card. After deflecting at first, telling me I should talk to the doctor, “what does he say?” I hit the ball back to her court and said it was the agency’s responsibility. She was going to explain and work on it. I am praying. No one had picked up on the living situation.

Let me bring you back to last night. The phone rang as I was making dinner. It was my mother’s caller ID, she had asked the aide to call me, again.

This is not pretty. But, I need to document this. To the best of my ability:

“Susie, Susie, how are you?,” she began as though she were talking to a child. You must go home right now, the boys are waiting! (I have one son) You have to be nice to them and cook for them and then they will love you. When you were a little girl I used to read to you and then you grew up and became a teacher. Everybody loves you! My mother used to make all her clothes, she loved to sew, I loved to sew, I wish I could do that again. I wish I were younger and I could cook with my pressure cooker.”

I was listening and trying to keep my balance and wondering if there was something else on her mind, I as distracted by the stove and then, did I hear her right?

“Sex is a good thing! But not for you, you have a family.”

Earlier in the day the nurse put on her oxygen and  ripped it our of her nose. She insists on keeping the room dark day and night. No light allowed except in the bathroom, shades drawn. This is what I pieced together between the aide and what I heard:

All day, my mother had had her hands down her diaper. “I need to love myself. I am sexy.” Men came up to her and she was wearing a white silk dress. How ironic that in a previous blog I envisioned my mother in said dress with my father, rewinding her life back to the 1940s or 1950s. A man wanted to take her someplace and asked her to his place. She refused him and said he could come up to her condo. (The only condo she ever had was in Florida).

During the conversation, I tried to get a word in and shouldn’t have bothered, “I am home mom, I am making dinner,” but she couldn’t hear me, she was giving a soliloquy. She knew enough to ask to speak to me but this was not really a conversation. When she finished, I said I love you and she said it, too. Then I heard her say to the aide, “what do I do now?, she didn’t know how to press the off button.

We disengaged. Each day we disengage more and more as she gets pulled upward beyond the veil into another world, a world full of distorted memories and fantasies.

I spoke to the aide after. This goes on for hours. The hands down the diaper! The aide would try to distract her she said to her, “Paula, that is not for you!” And so the words were processed by my mother and then were parroted: “Susie, sex is not for you!”

The aide said she heard that this kind of stuff happens when a person is possessed! Maybe she should scream and scare the evil spirts away!!

I am back in limbo, observing the demise of a 102 year-old-brain whose wires and wheels and cogs and memories are unhinging, not making contact, or, coming into the wrong contact, short-circuiting, sputtering, burning out. A mind that always loved the theater, the opera, the movies, that new every movie, every show tune but was now watching reruns of her own movies, starring herself as the beauty in white, what angels wear, evaluating her life, trying to make sense of it.

Her doctor said not to worry. This was not abnormal, this is what teenagers think about, fantasies. My mother had been rewound that far back, to her young adult years.

Each day I observe, I watch another production. My mother loved to be the center of attention, she always thought she should be an actress, a model, something of beauty. Perhaps she craved this attention from her parents, perhaps it was a self esteem issue, a control issue. Who knows?  Her movies, her recitations were her words of wisdom melded with her secrets, her desires, her life that has been so different than mine.

Before she had gotten sick those weeks ago, she would say, “Que sera, sera!”

I am trapped in the theater watching each scene, as it replays her mind. I want to flee the theater but I know from experience, first-hand experience, when my first husband died at age twenty-eight, that I would be abducted again and again to a movie theater and forced to watch flashbacks of moments strung together, moments of all kinds, good and bad. If I didn’t sit for the coming attractions and the credits, I would be forced to watch at another time.

I have entered the movie theater again; the theater is called Grief.

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

The previous post is here

The next post is here