In my quest to find a theme for my post I didn’t have far to look. There seems to be a Universal need to break free, from this year, from this virus. From restrictions. In a nearby neighborhood a GOP group celebrated, without masks or rules, and had dinner in a restaurant: a conga-line of dancers snaked around the place behind a person carrying a Trump banner.

For my mother it was the escape from her old, broken body. She is gone since November 6, forty-six days. There are times when I think of calling her to find out how things are going and then I remember: it is not possible. And, if it were, I would have had to be able to go back in time to when she was able to process and make sense of the world. At one point, likely within the last year, she had told her aide, Candy, that I should have put Robert into a nursing home. When Candy related this to me, I chuckled to myself and shook my head. “What does she know? Why would she say that? He is walking, yes he uses a cane, but please, he is not nursing home material.” And, if there was anything my mother dreaded it was going into a nursing home, she announced that she would die if she had to go into one! So it surprised me that she would even consider it for anyone else.

What could she possibly know?

Robert is in his twentieth day in a rehab facility that is within a nursing facility.

I am on my own, for the first time in decades. Listening to the strange sounds of the night as walls breathe, worrying if the outside spigot has been drained and if the water was turned off from winter freezes, staying on top of bills, cringing, again, as the phone rings and wondering who is seeking me out. I have been rewound back to where I was with my mother, but without my mother, my spouse has taken her place. In actuality, they were running a parallel race: one would act up in need and in decline and the other would let me exhale and go silent. And then it would switch.  I wonder how I got here: what paths opened up before me to lead me here at this stage of life. All I can do is wonder. I can’t move.

In the facility, next to Robert’s bed, is a phone for his use. He also has a cell phone which I reminded him has to be charged and it took weeks for him to realize he needed the charger. It also took weeks of my reminding him that the charger was in the suitcase I brought to him. Finally it was done, but not without my calling for someone to go into his room and help him.

I wish I could enlist an aide to be at bedside, to allay his fears, to find his lost items, to make things right and ease his day and mine. No one is permitted in. His mind floats all day in tangled webs of faulty synapses. He doesn’t answer the “white AT&T phone at bedside.” He has turned his old cell phone off. Messages piled up and shut out new ones. From my end, I was able to delete a load of them, from people expressing warmth and concern. He was not interested it retrieving them. Now I think he doesn’t know how. I am unable to reach him without intervention. The last time we spoke was Saturday night, he called me twice. The first time, he was near normal, expressing gratitude for what I have done for the family. He told me to reward myself with a nice piece of jewelry. I might have taken him up on that years ago. Jewelry is one of the last things I need now. I am practically wearing the same thing for days, I have left the chore of make-up behind, I have disinterest in the mundane and just try to get through another day. He repeated himself. Several times.

He wanted to come home.

An hour later, while I was trying to distract myself by binge watching on Netflix, he called again, he needed help. He was near crying. His stomach was upset. His digestive system was acting up again, as it did many times at home, leaving me with an unconsolable mess of human waste, leaving me in tears, asking how I could deal with this another time, after so many times. Call someone! He is agitated, yelling, scaring me from afar; no one was responding to the red button! Over and over I am calling Mohammed at the desk, trying to explain at 8:30 pm on a Saturday night when most staff have left, making their way over the ice and snow. Help me! I hear him and my heart is pounding like he is here and what is the difference, really, I am still on duty, the call-person, the advocate and savior.

I had mentioned that I would be out on Sunday for an appointment. He left a message at 1:00 pm, hoping that I had a good dinner and good night. Another temporal tangle. We haven’t spoken since.

I had a long talk with the social work department. The staff I have dealt with are terrific, changing my perception of what goes on in one of those places. The head of social work listened to every word, analyzed my concerns and reacted warmly, without rushing me, with validation. With guidance.

Talk to this one, he comes in at noon, talk to that one, she knows about this, talk to the other one! He was going to go into Robert’s room and get a feel for what was going on. What does he like, what did he do? 

He taught science for forty-four years, he loves good food, he loves to read, he has three degrees in architecture, he plays the guitar and the 5-string banjo, he is a painter.

“Oh, man!”

An hour later I received a call from the rehab center informing me that my husband was found on the floor at 2:00 pm and that I was being called as it is procedure and that he had no visible injury. He is not allowed out of bed unattended. I suspect he got tired of pressing the red button, or maybe he couldn’t find the red button or maybe he just wanted to prove that he could walk on his own, that all was fine, that he was fine, himself, and there was no need to be there, that he could come home.

What do you say to a person who longs for home, who is declining and yearning? Well, you play into it. You are there you say, to get strong and improve your ability to walk and be independent. And they say, oh, well now the onus is on me! And the role of the victim emerges and the caregiver assumes the guilt.

He was trying to escape.

It is likely that he will not be able to. His neurologist in Manhattan wants to admit him to her hospital, the top in NYC, and do a lumbar puncture which was the original test for his brain shunt. I have felt all along that there was still too much fluid in the brain and it has been having an effect for months. This would be the final rule-out. It might be this simple to “fix” everything, or some of everything, a miraculous simple fix.

The doctor on duty has informed me that my husband is suffering from dementia. He says: you know that don’t you? He asked: would this test help your husband? It is up to you, we will listen to you. Arrange it if you wish.

When I woke up this morning on this Groundhog day, I went to retrieve the newspaper in its blue plastic wrap from in front of my door. The doorknob disengaged and was left hanging in my palm. Hermès, the adopted feral, heard me rattling the knob, trying to snap it in place. I could see her looking up from the living room window, wondering why the door never opened.

I was trapped in my own home. Trying to stay calm, pushing on the door, unlocking it, trying to reunite the outer and inner parts of the knobs to no avail.

I began looking for a locksmith, Yelp recommendations, locations. I waved down a neighbor who was passing by and as she greeted Hermès who was sunbathing atop her heated home on the porch, I yelled: “I’M LOCKED IN!” She was able to push the door open from outside, in it came, freeing me psychologically.

I kept fiddling with the knobs that were disengaged.

After a brief hiatus I returned to the door to find the knobs perfectly engaged, workable, viable. I was shocked: I could easily open and close the door. Everything was as it should be and I didn’t recall this fix. In fact, I was dumbfounded to see it working.

This reminded me of a scene in a movie based on an Elena Ferrante story, where the wife is falling apart when her husband leaves for another woman and she is left to fend for herself with two children. The door lock in this Italian home is opened from the interior with a key and despite every try, she can’t get the door open, she is trapped, she is screaming, the little girl is screaming for help. All the pushing and pulling and banging didn’t help. And then all of a sudden, the key worked with a gentle shove and there was an open door.

Something wanted me to be able to escape.

Something wanted me to remember I was capable of doing so.

 

 

 

 

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

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