Morning Glory ©susankalish

 

 

In this time of a killer virus, of wild politics, of fear, of change, of weather, of terror of anger, of momentary forgetfulness of same and then being pulled back into the present, in this time, during this time, my mother lives. She is visited by her doctor, she is visited by a hospice nurse, she is visited by clergy. She is in bed, no longer able to do anything for herself but to voice her opinion. Sometimes she is sane. Sometimes not. Sometimes oriented, sometimes floating. Two aides live-in, one from Monday morning to Friday morning, the other from Friday morning til Monday morning.

Sometimes there is sleep. Sometimes not.

I believe I began caregiving when my mother was eighty-nine years old. We would visit her in Florida and walk in the door to broken phones, wavy carpet, leaks stuffed with plastic bags. Her vision was becoming more and more clouded by cataracts, but despite them, she was comfortable in an environment that she didn’t create: When my parents bought the apartment in Florida, they moved into the previous owners’ creation. It was as though they were subletting. The kitschy, ugly Florida furniture and accoutrements  were left behind and adopted by a New York couple with limited funds, who assumed the status-quo. It was silly, it was ugly, they seemed happy.

In 1991 my father had a stroke and collapsed in the shower. He was carted off to the hospital and never regained consciousness; put on a ventilator. I left my then 4 year old son with my husband and the babysitter, got on a plane and went to Florida. My father was seventy-eight years old and my mother was seventy-two. Young by today’s standards.

My mother and I went to the hospital: My father was on life support. The machine was breathing for him, rhythmically, hypnotically. He was on his side, facing the window. My mother was sitting, facing him, her back to the window. She spoke to my father. And despite all their fights and bickering and disagreements, she gently pulled the sheet up to better cover his upper torso.

She left the room and I went in. I told him I forgave him, for so many things. I said goodbye. I gave permission to pull the plug, the room went silent, the calming sound of a motor stopped. I expected my father to breathe, to turn. To revive in some way.

From the doorway I watched his back turn blue.

In a Florida funeral home where my mother, aunt and uncle and I sat in a room with a nail on the wall, from which hang a religious symbol—your choice, a southern man delivered a service contrary to Unitarian principles: he invoked the name of his God. We didn’t care.

As always, I had to arrange everything.

My father was cremated and subsequently interred in a military cemetery in Orlando. My mother and I stayed for a number of days at my aunt and uncle’s house; we slept on a pullout couch. The night after the funeral service I couldn’t stop shaking. I didn’t think this episode of my life would have this effect on me. My mother tried to calm me down by rubbing my back.

After I returned to New York, leaving my mother alone to re-create her life, she managed. For a long time. She dated! She had a series of three companions. One was a photographer, one was a judge and one was a nut. She outlived them all.

Thus, back to her apartment, when we would “visit,” we would work. It was a time-pressure scurry to fill in the blanks, replace the broken, assess the needs, orchestrate installations. I was appalled to see the condition of things, the waves in her carpeting were signals of impending disaster.

She was no longer on her own. From more than a thousand miles away I began to assume the tremendous responsibility and worry.

It became evident that Florida was very backward thinking, compared to New York’s treatment and care of the elderly.  It you ran out of money in Florida you might end up in some group home and lucky if you had your own room. If you need care, you can run through your money in a matter of months.

My mother had pneumonia in Florida, at age ninety-four, and I opted to maintain her aide and put her on hospice care. Hospice stole from her and wanted to give her morphine. She would have been dead in three days. The wonderful full-time person I had living-in cheering me on, keeps in touch and praises me each time for disallowing the morphine.

And at age ninety-five, seven years ago, we moved my mother back to New York.

Now, she lies in her bed, in and out of her reality.

There is a purpose to this post: when my mother returned home from the hospital, post-covid, ranting and screaming, disoriented and crazed, day and night, I was able to get her 24-hour live in care. I had wanted 2-12 hour shifts. I asked for that right off. I was denied. Then, in April, I appealed and was denied. How can a person live-in with a ranting old person, and be up day and night and not go crazy?

I applied for a Fair Hearing with New York State. The hearing was scheduled for this Monday in a Brooklyn court. I received reports and stacks of paper, deliberately confusing. The way it’s done is that they want to wear you down.

They do a good job.

I was thankful to learn that my court appearance would be via a phone call. I was dreading it, just the same. I wasn’t afraid: I had evaluated hundreds, perhaps thousands of children over the years, analyzed data, wrote reports and prescriptions, helped to place needy students into remedial programs, re-evaluated them, conferenced with their parents: they were all from a local New York City housing project, rife with problems.

I was case manager, evaluator, administrator, I did the job of social worker as part of my duties. I advocated.

Now I had to prepare the same kind of paper and mindset for my mother.

And yes, I was worn down. God damn tired of the whole thing, if not sick of it. As the day neared, I considered retracting my bid for the hearing and just saying “to hell with this crap.”

But, I knew that the aides, along with my mother, weren’t sleeping and lack of sleep can kill: more so the spirit than the body.

During lunch yesterday, the main phone line rang. It was my mother’s long term care case manager.

“Sue, why didn’t you answer your phone, I just left you a message.”
“Hi, Jeanette, I am having lunch, I left the phone upstairs.”
“You are not going to believe this!”, she said. “Guess what!?”
I was too tired to guess or to give a damn.

“The team was meeting here during their lunch to pre-conference for the hearing. Looks like everyone was eating lunch! Well, we were meeting to prepare and going over your case.The team doctor said your mother has Covid psychosis. He said we (the long term care) would never win this case. Give her the 2-12 hour shifts!”

“Sue, you won and you don’t have to go to the hearing, just call and retract your request. One of the nurses was saying they NEVER do this!”

It was a FIRST. I did this.

The case manager stepped up, told them I never ask for anything, told them no one was sleeping. Told them and they ate their lunch and listened, and acted appropriately.

I almost did but didn’t give up. Now one aide will be on duty during the day, the other working at night.

I hope my mother calms, I hope the aides are happy they can go home after 12 hour shifts and sleep in their own beds. Spend more time with their families. I hope I find calm.

And I hope the country calms— by listening and acting appropriately.

 

📌The 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.