What’s old is new again.

First: a very happy and healthy 2021 to all who have come and visited. To those who came and left your mark; thank you. I read every comment and will not respond here (as I am not sure you’d know to return) but will drop you a note if you leave your contact info.

Let me fill you in. Robert is losing bits of himself each day. As time passes he becomes more and more unrecognizable physically and mentally. There are moments of brightness, sparks of remembrance, spurts of humor. But, he is peeling. His layers of memory are being stripped. His short term memory is painfully inconsistent to those who know him. He talks less, but when he does it is sometimes with rancor. When he called the other night offering me a tirade of fury about not being able to find the red button, about the pastrami being cut too thick, about there not being enough french fries, about how poorly the place is designed and that of course had HE designed it, it would have been perfect.)

For the weeks he was at the rehab, he wouldn’t/couldn’t read. He couldn’t concentrate, didn’t have enough time to read. But he expressed jealousy when he saw a patient reading a book and his view of reading changed. So, my son and I packed up newspapers and books, a New Yorker magazine, my son’s latest calendar production, chocolates, pens and paper, a notebook, a folder, and a sheet with the phone number of the facility as well as its name so he’d know where he was.

It was Wednesday, Dec. 30. We left the bag at 3:30 PM and went food shopping. Almost immediately my watch began to vibrate with calls and I gave myself a break: I wasn’t going to be disturbed, I needed to focus.

I peeked.

It was Robert’s rehab. I put off listening.

I shmoozed with Neil, my Health Food Store guy, bought the bulghur wheat, and continued my shopping across the street.

Then I checked the messages in the car. This was happening while my son and I were on our way home.

“Hi, my name is __ calling from ___ I am calling in regards to Mr. Robert ____. Just after 3:00 he rolled off the bed he was trying to locate his pillow on the bed, he hit his head on the heater near the bed. We assessed him and there is a little swollen area on the top of his head so the doctor wants him to go to the hospital for a CT scan just to rule out any intracranial bleeding into the brain. So we are in the process of getting the paperwork together and we’ll send him over to the hospital. If you have any questions you can always call and talk to me here.”

That wasn’t enough. There was a follow-up message that Robert was put back in bed, rolled off again, cut his eye, hit his head and was unconscious. He was taken to the hospital.

How he managed to fall, not once but twice is beyond me. FaceTime interactions displayed a bed with some kind of bars along the sides or so I thought. And a bed alarm would go off after the fact. But here’s the thing: my husband’s judgment is not reliable in a physical or mental capacity. Unlike the ER visit from that terrible fall and head injury about a month ago, he was admitted to the hospital, given a room so it had to be serious.

When I spoke to him that around 11:00 pm (the hospital did not call me to inform me he was admitted)  the conversation went something like this:

What happened!?

What do you mean?

You fell out of bed! Twice! Your head was cut above your eye! You were unconscious!

I was?

Do you know where you are?

At the center. (Rehab?)

No, Robert, you are in the hospital.

I am?

I left a message through the patient portal at the office of the neurologist in Manhattan and the end result was that she was, after hours of calls and my intervening, able to get in touch with the neurologist at Robert’s hospital (Queens) and tests were to be performed there with the rest in Manhattan in the future as an out-patient. More MRIs after having had hours of tests in October, another spinal tap: Results can take weeks.

Two nights ago the phone rang. It was the neurologist of the hospital where Robert was; confused, in need of more information. And there I was, still again, reciting the litany, the story that began once upon a time, years ago, when he began falling, losing his balance…there I was again saying that his memory was never great, that he had trouble with names and matching the names with faces, but that for four decades he worked. That he remained independent until Covid locked us indoors, that he went to PT, then had PT at home, that he had had a fall in the street in June and two young men brought him home, delivering him to the door, a thin shadow of his former self, and that since then it just seemed every month was worse, the increasing falls, the bathroom accidents, the loss of abstract thinking, the on-off appropriateness. That he was reading voraciously until about October when his legs began to give way, when I watched him try to walk ahead of me, when I observed that his legs no longer were his, when his size 24/M briefs were dangling at his knees and the size 36, then 34, then 33 slacks fell way below his hips. That he was, last I was told one-hundred twenty-one pounds.

I told this doctor that the decline was massive, rapid, frightening. That the last three months made no sense. That my mother had passed in November and here my husband was diminished every day and passing before my eyes.

The doctor said that Robert thought the year was 2013, he knew who was President. When he was told he was going for an MRI he said, “another one!?”

Just like I said, he is there on some levels and not on others, processing of language and expression comes in waves of appropriateness.

His initial diagnosis was NPH, Normal Pressure Hydrocephalus, and to address that he received a brain shunt in 2016. But it doesn’t work the way it used to. Something else is going on. This Dr. Z. was very baffled as is every doctor who has seen my husband. He says that he is not a clean NPH, nor a typical Parkinson’s. Nor a typical anything. And the fact that the dementia (global brain-cell loss) is so rapid…this might be one for the books.

I called Robert yesterday, he had had some testing and was back.

Hi! How are you doing?

Lunch was good, a chopped salad…good to hear your voice...

Are you alone in the room?

Yes.

I hear talking.

There’s someone here talking to the person in the other bed.

So you are not alone in the room.

It’s good to hear your voice.

Please do not ever try to get out of bed, always press the red button.

Alright.

You are in the hospital.

It’s good to hear your voice.

 

 

 

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

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