How does one divert oneself when life is tough? Dive into learning a new skill or resurrect an old skill. Focus, yes it is difficult, on something other than the pain that drags you down and makes your stomach quake. Think of pita, ciabatta, loaves  of warmth; some of which might take more than a day to prepare and bake.

That keeps you busy.

I have been consumed by a recent food section of The New York Times. I bought a bread baking book. I put my hands in flour and wish it was Moroccan sand or a white beach. I assemble ingredients in neat little dishes, put them into rows, add and mix, stumble over the many steps of the directions. I think of the end result and somehow I don’t want it to get here. It is the journey, each moment of the next step. The next step leads to another step and then you arrive. It’s something YOU can control.

So, as I write this I am allowing a large, wet lump of dough to do its thing. I began the process two days ago. I integrated the recipe with a conversation that I had with my dear friend Maria. She was many steps ahead of me in her knowledge: We were talking bread but in reality we were talking life.

I had a zoom conference with Robert, his nurse, and the neurologist, a beautiful, brilliant young woman from New York Presbyterian Hospital in Manhattan. We began going to this doctor about five years ago when she was the one (others had failed us) to explore strange neurological issues: falls, loss of balance, stiffness. Robert was diagnosed with NPH, Normal Pressure Hydrocephalus. A subsequent brain-shunt appeared to help. He could drive, walk, without a cane at the beginning, shop. We even traveled and he drove. But three years ago on that last trip we took, he fell in the bathtub and then in the hotel dining room; he held onto a table to get up and ended up on the floor with his breakfast and the table. On that trip, he got sick to his stomach after lunch. On that trip he had to sit down in an exhibit. He started to collapse and we sat, in Thorne’s Market in Northampton, MA, I thought, maybe it’s the heat…there we sat having a cold drink.

We barely got home. I was terrified on that drive; I stopped driving a few years ago and it was all up to him. I knew it would be our last trip. After that, Covid was an interloper that kept us home. I can’t begin to tell you how grateful I was NOT to have to go out with him. I was in a constant state of terror. Then last June when barbershops opened he defied my adamant advice and went out alone. (I was busy with a mother issue). Remember this?

That was our major turning point, not even a year ago.

We would watch a movie series: he could not follow what was happening, needed constant clarification for characters and events. I found that curious.

He continued to lose weight.

He continued to lose his ability to ambulate.

Blame it on being home for so long. Blame it on Covid.

Just like with baking, the brain is a mass of dough, through which synapses, impulses  must travel. Bread needs yeast to rise to the occasion, to get things going, to send the message that growth is needed. It breathes, it eats. It is a mass, a living thing. We knead it, or not, depending on the recipe and we give it time. The brain that is failing fails over time. It began slowly, it morphed under the radar or, was it that we didn’t want to see?

About half a year ago I began preparing for this, it was a gut feeling, that nonverbal knowledge we are told to trust. It told me, something was happening. Do something, NOW. I did. It turned out it wasn’t enough. No sooner did I jump in and knead and pull and bake, the recipe changed. Robert, was no longer himself, in fact over the last eight to ten years he slowly changed. What I thought would be his caretaking needs, remaining in the home with an aide, was a failed plan. He never made it to that point. That plan, like a lump of dough with dead yeast, was discarded. He was falling, injuring himself, unable to walk, losing weight daily, in and out of the hospital, rehabs, then brought back to the first rehab and the people who knew him in December didn’t recognize him in February.

And, each month that passes carries with it more loss and more recognition of that hopelessness, that ongoing anxiety that hits and runs and leaves me looking for more diversion.

Pita, ciabatta.

Here we go, waiting for the next step on that long recipe list.

I can take this dough and make it into something that will bring joy and nourish.

Robert’s brain is reaching the finish line. His synapses are stuck. There are plaques in the way that cause stoppage of impulses. And yet he can say he is overwhelmed.

That is what he said on a zoom meeting this morning when the doctor asked him how he was. Overwhelmed. Confused.

The purpose of the meeting was for the doctor to see him since the last time we were there, sometime last fall. She tried to speak with him. He said it was OK for her to speak with me about genetic testing. He couldn’t follow directions: not able to sit, raise his arm. He has no strength. He’s lost his focus. The man who never stopped running, doing, talking, has stopped.

In post zoom with the doctor, I could see she was crying. She was in disbelief, just like the rest of us who knew him.
The genetic test is for leukodystrophy. A positive result will give me something to worry about: what about my son?

I told her I was the keeper of the family history, that I had never heard of anyone in his family with any such issue.

Her thought is that Robert is suffering from (not genetic, a protein in the brain abnormality) Lewy Body Dementia (Remember Robin Williams?) There is barely a bit of research on these dementias, there is no cure. No treatment that works. It just abducts you and then you are gone.

The neurologist asked how I was doing: The call was ended with us both crying.

Though nothing is yet definitive on diagnosis, I do hope this is not an hereditary disorder. In the long run, what takes Robert will take him. Let him go smoothly, quietly, peacefully, playing Mahler in his head. Let it not be passed on.

What else can I say?

It’s too hot to light the oven but I will. I’ll figure out how to bake that huge lump of squishy flour, water, salt and yeast into something magnificent, a Golem, created from dough, that will watch over me.

As I grieve.

 

 

 

 

 

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

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