The Day I Couldn’t Get Him Up Off The Floor.
There are things you write because they’re useful.
And there are things you write because they’ve been waiting long enough.
This is the second kind.
Each day in 2016 started hopeful.
That’s the part nobody tells you about watching someone get sick. You don’t wake up knowing it’s going to be bad. You wake up and think, maybe today is better.
Maybe today he eats without choking. Maybe today we make it to the coffee shop, and nobody stares.
April: the falls started. Random, without warning, without explanation.
July: Daniel noticed something in his throat. He asked me if he was slurring.
I hadn’t noticed yet. Not until the end of August, when it became impossible to miss.
We didn’t have a proper diagnosis until the following March. Daniel didn’t want to know what was coming, and I honored that. So for months, we just managed each day.
August: the cane.
January: the walker, because a fall could end everything faster than the disease.
March: the wheelchair.
April: the feeding tube.
October: Noticable weight loss
We made every decision like that. Assessment-based. What does today require? What can he still do? What do I need to learn by tomorrow? The choking was the part that broke me open the most.
ALS (Amyotrophic Lateral Sclerosis) attacks the muscles. Including the ones that swallow. Every meal became a negotiation between nourishment and survival. He had to eat so slowly, so carefully, that what should have taken twenty minutes took two hours. The muscles were wasting away. The fat was going with them. And the calories he could actually get in were nowhere near enough to hold his body together.
He lost 60 pounds over the course of that year. Not from lack of trying. From a body that was systematically losing its ability to do the most basic human things.
We needed the feeding tube in February.
Daniel kept refusing, and we ended up putting it off until April.
I understood why. It’s a line you cross. Your body announces, out loud, that something fundamental has changed.
What we could afford was a nasogastric tube. A thin tube threaded through the nose and down into the stomach. Not the surgically placed kind. The kind that requires you to push everything through by hand.
I learned to make liquid meals. Whipped chicken breast. Water. Nutrients dense enough to keep him alive, thin enough to move through the tube.
Every feeding, I pushed it through manually. Slowly. Carefully.
My right hand started to go. Carpal tunnel, building quietly from the sustained pressure of pushing dense liquid through that tube day after day. I didn’t stop. There was no one else to do it.
I learned to feed him water through the tube in tiny amounts because too much made him violently ill. The dehydration caused constipation, and he had always had a fear of that. So I learned to manage that too. Daily.
You start at 600 calories with a feeding tube. The stomach has to relearn. You increase slowly. You calibrate constantly. This is why he lost so much more weight from April through July. The body had fallen behind, and catching up wasn’t something we ever quite managed.
I learned to turn him every hour through the night because he was skin and bones by then, and the pain of staying in one position was unbearable.
He slept on a massage table in the walk-in closet because by March, we couldn’t get him up the stairs anymore. I slept on the couch with Boo. He would open the bathroom closet door so I could hear him when he needed to be turned.
And then the night came when he couldn’t open the door anymore.
That’s when Boo became something more than a dog.
He would bark to wake me. Every time. Without fail. A rescue dog who decided, without anyone asking him to, that this was his job now.
I don’t have words for what that meant at 3 am when I was so exhausted I couldn’t feel my own hands.
Every day, no matter what,
I got Daniel dressed and lifted him into the wheelchair.
And every day, we went to the coffee shop.
He grew up in France. Cafes weren’t a luxury for him; they were oxygen. They were what normal felt like. So every single day, I lifted him in and out of the car while people watched, and sometimes offered help I didn’t need, because I knew exactly what I was doing. I had learned his body completely. Every transfer, every pivot, every angle.
He had his coffee.
Even at the end, through the tube. He had his coffee.
That was the highlight of his day. And making it happen was the highlight of mine.
Sunday, July 16.
I went to sit him up and pivot him into the wheelchair the way I had done hundreds of times.
He swayed back down.
I knew immediately this was different. His center of gravity was gone. There was nothing left to anchor him. When I tried to lift him, we both went down to the floor together.
I tried for thirty minutes. He had nothing left to work with. No resistance. No anchor. He was like water in my arms. I waited for the male nurse to arrive, and Daniel lay on the floor for over an hour with a glazed look on his face that I will never forget for as long as I live.
That was the moment I knew I could no longer do this alone.
Monday, Raul, our mechanic, came and gave Daniel his first real shower in months. I had managed daily with what I could. It wasn’t enough, and we both knew it.
On Wednesday morning, I said goodbye to a friend who had been helping, then went to the airport to pick up Sally. My best friend of over 40 years was flying in from Canada.
Before I left, I got Daniel settled in his spot in the living room.
Then I heard a thump.
I turned around. His phone was on the floor.
For months, that phone had been his only voice. His brain was completely intact. His body was not. So he typed. He texted. He even contacted clients that way, right up until that moment.
He was slumped to one side in his chair. I cannot describe the panic I felt about how my mind took over. I truly realized how important communication of any form is. That was his lifeline to me. To the outside world.Â
But I had to keep it moving.Â
I made it to the airport. I told Sally to brace herself. It’s what I told anyone who hadn’t seen Daniel unhealthy.
When we got back, she told me to go out and breathe. Go get groceries. Just go.
By the time I returned, she had made cards.
The entire alphabet, written out. Phrases: I’m in pain. I need water. I need to sleep. Everything Daniel might need to say, so we could point.
He could communicate again.
That’s a 40-year friendship. She couldn’t fix it. So she gave him his voice back with a pen and index cards.
Thursday, we talked about morphine.
He was suffering beyond what any of us could witness without doing something.
But in Mexico, you either have to be in the hospital, or it has to be done with certain permissions. With notice. We found a doctor who knew about our situation and said he needed 48 hours for permission, and that would have been Saturday, the 22nd.Â
But Daniel decided to go on his own. Friday, July 21, 2017. Around 11 pm.
I held his hand and watched him take his last breath.
I am not going to dress that up.
And then the silence.
Not peace. Silence. The specific kind that follows something enormous and just sits there, not asking anything of you yet.
People talk about grief like it comes with space. Like the world pauses while you process.
It doesn’t.
We hadn’t been able to pay rent for over a year. We had $50,000 worth of furniture and a landlord who had been a friend for twenty years, and who was, by then, rightfully done waiting. He accepted the furniture in lieu of what we owed him. More than generous. And he needed us gone.
So while I was still inside the shock of July 21st, I was also packing. Finding a place to live. Managing the logistics of a life that had just collapsed on multiple levels at once.
There was no time to think about the future. There was barely time to think at all.
I was 53. No home. No savings. No income. No plan.
What I had was Boo.
And apparently, that was exactly enough to start.
More about my story here: Grief is not linear