Robert and his sister Wendy ca. 1953

 

 

Here I am after over a week’s hiatus facing an empty page. Empty pages are the black holes that absorb my anxiety, thus, the words begin to fill. As Lila says in Elena Ferrante’s book, My Brilliant Friend, I have a bucket of words in my head and I pull them out. This morning I avoided the bucket of words and fell into the bucket of tears. I don’t do that often but it was necessary. As a migraine sufferer who rarely feels pain but has the other mysterious trappings, I began to feel that I was being rewound: For a long while I had not experienced the plague of ocular migraines of the past, where they were daily, sometimes, multiple onslaughts. Those were the mother-migraines and she is gone. I actually did not have an issue for close to fifty days and I was thinking, “Man! I am cured!” I had not had migraine-vertigo attacks for many months and when I did I was able to unpin myself from the gyroscope of whatever was going on in my head. Those attacks were the worst, also, a form of mother-migraine. I remind myself that mother is gone.

These are husband migraines.

This last month continued with my new full-time chore of paper chasing documents from twelve institutions so Medicaid could crawl up my nose and count every penny, then decide if Robert can enter a nursing home and who will pay the $20,000 or more a month. My attorney’s staff has begun to wade in the tons of pages that I brought over the other day. One institution, hopefully the last, required notarized documents just so that I could obtain statements from his retirement fund.

[The good news is, I found those missing Passports: Robert had made neat cardboard holders for them and left them in a bunch of papers on the desk, unlabelled. The new ones appeared, the old ones are still missing].

I have to redo my will, the power of attorney and the like. Or like not. Robert is no longer in the picture. And, while I was focused on these assignments, writing massive checks for services and hanging on the phone on hold for hours, for a home-based rep to pick up,  the ocular attacks ramped up. The vertigo attacks sneaked back in. Migraine vertigo is a strange animal. In the scheme of things it doesn’t last long, but while it is in progress, it is one of the most debilitating and horrifying of experiences. There is total loss of control. The only thing one can do is close one’s eyes and suffer through it. And if need be, scream!

Going to the lawyer has been a trigger. Not going to the lawyer has also been a trigger.

I am well aware that what I have been experiencing has been far less intense than in the last few years and I am so thankful. It is like my body is getting over a virus, working something out of my system, I tell myself that soon it will be gone. Even if I have to fool myself into believing that there is an end somewhere down the road, I do it.

So, now let me fill you in.

I had an appointment to see Robert yesterday.

I had been communicating with him via FaceTime for these past months. I knew how he looked, how he changed, how words that came easily now elude him, how his hair is gone and they put his old hat on him, how he can’t move without assistance because his muscles have totally atrophied. I know how he screams when he is moved like someone is torturing him, how he leans to the right side, how his eyes tear and I am not sure if he has an allergy or is crying. I know that he can’t stand let alone walk, how I no longer have to remind him to take “big steps,” to keep the rhythm going. His brain forgot how; he would shuffle, get stuck to the floor and would stomp.

He will never walk again.

I know that he only has a few familiar shirts, a pair of elastic-waist pants from Raindew purchased around Christmas time as a just-in-case backup, a just-in-case which was the case. That he needs more Bombas socks. I know this and more, and so as the appointment approached and I sat at my computer a few hours earlier I felt that initial, scary hint of an oncoming spin. I told myself not to panic. I pushed myself away from the words and sat back, closed my eyes, breathed deeply and wished myself out of it. I managed it. I managed myself. I vanquished the fear and relieved the onslaught of pressure in the back of my head which, is building as I write these words. I worked my way out of it. It was a message from my body telling me to cancel the appointment to see Robert. Vertigo wanted to give me a way out.

But I knew I couldn’t.

He, like my future, had to be faced.

My mother was my age when she lost my father. He had a stroke in the shower and was immediately brain dead though I was summoned to go down to Florida from New York and be there to pull the plug. Robert’s illnesses have been like a slow pulling of the plug. First his body began to deteriorate, then his brain. There would be blips in his orientation when he drove. There were more and more inabilities to find things. Bills went unpaid. He’d go into the kitchen and when he left drawers and cabinets were left open like the place was ransacked. He could not manage his bodily functions.

He was falling:

In the street, in the shower, walking with a walker to the stair-lift and then from it; his legs could not hold him up. Big steps!

I had to wheel him on my desk chair. I tried many times to lift him and it was impossible. And then I felt like I was not able to lift myself out of the terror and anxiety of what I was observing.

And all of that, that horrid stuff, all of those events that were taking over and swallowing him and drowning me, ramped up last summer and each day got worse leading up to the first major fall the day before his seventy-fourth birthday. The seven firemen in the bedroom, the EMS, the three days in the ER, the transfer to the rehab, the two falls out of bed at the rehab in one hour just before New Year’s Eve, sending him back to the ER with several head injuries, the admission to the hospital, the testing, the not-finding anything wrong, yes, his shunt is working, the planned release, the not-release because, on that day he tested positive for Covid which he was incubating from the rehab. The triage in the Bronx at The Hebrew Home where Covid-positive patients who were no longer contagious were held until they tested negative twice.

It was while he was in the hospital with Covid that he stopped answering the phone. That he would scream if moved. It was while he was at The Hebrew Home that his weight fell to one hundred and twelve pounds and I planned a funeral. It was there that his speech changed, that he changed. He would grimace and growl. I asked for a speech evaluation. Was he angry? Why was there a fury in his voice? Why was he speaking through locked teeth?

Then back to the rehab. He was out-of-phase with his environment, he didn’t know where he was, he had trouble responding, with orientation. He never answered the phone near his bed or his little flip phone. He was going incommunicado. He refused OT and PT, he would scream. He was unwelcoming to the speech therapist to whom I sent photos and links to music in hopes of making conversation. His weight went from 112 to 107 to 109. He has to be fed. The staff doctor says it is Alzheimer’s. Our neurologist didn’t want to name it without a genetic test. Our regular doctor said it is worse than Alzheimer’s based on the speed of progression.

Now it is the end of April and for weeks I have been trying to prod him to communicate, this shell of a person whose word bucket has emptied. When they would call to FaceTime there he would be, leaning to the right on a wheelie-bed. I would try to talk to him and he would avert his eyes as though he were trying to access a memory, a vision that was running off like a wild animal seeking protection.

When I see him in one of his shirts, or that silly winter hat, thrown together by another person, I recoil. Sometimes they wheel him into a day-room where they can keep an eye on a bunch of people who tend to fall. It is noisy. Loud voices, loud laughing of staff, a television drones on in the background, a lady nearby is singing in Italian. They keep Robert in a corner near the ice machine and I hear cubes crashing into containers as people knock into his bed and fill their cups.

There is so little we can discuss. He knows, he understands but the words to respond are slow and need prodding. I stopped my blathering and now when they call, I prop my iPad adjacent to my computer and play classical music. He always manages to knock the iPad down or out of my range of vision so I can’t see what is going on and have a perfect crooked view of the ceiling. But sometimes I can catch him with his eyes closed. Maybe, for the moment he thinks we are back at Carnegie Hall.

This is the prelude to my visit, yesterday. I had never entered the doorway of this facility before. Prior, if you wanted to drop something off you had to leave it at the door in a labeled bag. I had to sign in, check off boxes that were xeroxed so many times I couldn’t read them, have my temp taken. What my mind did not register was that at the time I was doing this an aide was wheeling a patient toward me, behind me and into a small sitting area.

It was Robert.

I heard the aide say, “You have a visitor.”

I heard Robert say, “Alan Teller.”

I heard the aide say, “No, it’s Susan!”

I walked toward them. I introduced myself to Felicia, the aide, in her full-face gear, and showed her two bouquets of flowers: one for Robert and one for her.

“For me!?” asked Felicia.

“Yes, with my sincere thanks.”

She was thrilled and grateful. She said: it means a lot.

I had twenty minutes to engage Robert and to remind him who I was. His eyes were empty. I looked at him. I took off my mask for a moment, no touching allowed. Rob, do you know who I am?

My Suzy. 

I am, dear reader, holding it together. I go into blathering mode. I pull out yesterday’s The New York Times, a paper he read cover to cover ever since High School. Later on in the conversation when I was leaving the paper for him I asked him to read a headline. He did so perfectly, It included the word sequestered or something like that. I do not know if he understood what he was reading, if the comprehension part of his brain was still connected to the ability to decode.

This is what happened: I tried to engage him. He averted his eyes to the glass entry to the right, he was scanning the environment slowly. He had been there once before when his childhood friend visited two weeks prior. I tried to pull him back to my presence and then I realized that coincidentally, it was his sister’s birthday.

Time was passing, the allotted twenty minutes was beginning to feel like the equivalent of hours. I called his sister, and luckily she was available. “Robert, today is Wendy’s birthday, you can wish her a happy birthday, “I said sticking my phone near his face. He did, in a barely audible voice. Wendy was touched, something in Robert was touched, she asked him if he knew how old she was.

“Forty,” he said. She told him she wished she were forty, that she was thirty years more than that.
I said, “Wendy is seventy.”  “You are seventy-four.

Felicia was standing nearby, waiting to collect Robert so she could go home. It was almost 4:00 pm on a Friday afternoon. It was a chilly, bright day. Staff would be leaving and the residents would remain on strange gurneys wearing strange hats. clutching at distant memories.

Wendy spoke to Robert, Robert was prodded to speak to Wendy; it was a touching moment.
“Wendy said she loved you, what do you say?” said Felicia, poking him in the shoulder. He said I love you, his voice was lurking behind a blue paper mask and was barely able to be heard.

His left eye was tearing at the inner corner. It was time for me to end the visit.

I handed over two bouquets of flowers, one for Robert, the other for Felicia. I told Robert I loved him. Felicia gave him a poke and a prod: what do you say?

I love you. 

Felicia wheeled him back down the long hallway, a place I had never before seen, to an upstairs place I do not know.
I left, taking big steps, returning to the car my son drove. Into the cold Friday sun on a spring day, five months after the last time I had seen Robert.

 

 

 

 

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

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