The Close Call

On Monday, it looked for all the world as though my husband was preparing to take his long journey, to make his transition to the other side. He had a fever. He was in discomfort, apparently semi-conscious. He didn't eat. He didn't drink. His eyes were rolling back. It was breathtaking. Fine one day, totally not fine the next.

The hospice nurse took me aside, looked me in the eye, and led me to understand that it was time to prepare for the worst. Maybe not that day, but maybe the next, or the day after.

"Should I 'call in' the kids?" I asked, my brain both in a fog and running frantically around in circles at the same time. The short answer:  "Yes."

"In your professional opinion, what are we looking at?" I managed to whisper as the room spun around and I tried frantically to catch my breath. I needed to hear her words again. More slowly this time.

"If he does not have a turnaround, a day or two. If he eats and drinks a little, then a bit longer. Days, not weeks. Or weeks, not months."

I felt so helpless as I sat by his side and held his hand, stroked his hair, kissed his cheek. So devastated. So heartbroken. So defeated. So unprepared. Then, overnight, he "rallied." No fever. Eating. Drinking. A respite. An extension. A sigh of relief. Even some engagement with our kids and with me. One more day.

Unfortunately, though, I had to deal with another communication breakdown. Happily, my head was clear enough to see that my husband was displaying signs of discomfort (I'm sure you remember that he is non-verbal and cannot say that he needs something), and I realized that no pain medication had been administered during my all-day visit. A brief consultation with the medical technician revealed that the medication had been delivered; however, no order had been received from the doctor. The medication cannot be administered without the doctor's order, even if it is right there in the med tech's office.

"Maybe they'll send it tomorrow or the next day." What?! I had a fit. Oh, no. This was not gonna happen. Not after the last fiasco. I grabbed my cell phone and called the hospice team coordinator myself, passing my cell phone around to all interested parties to make sure communication was clear to all. I was fit to be tied. This is not the time for hospice to drop the ball on my husband again!

Everyone delivered sincere, heartfelt, deep apologies over and over. "Great. Thank you for that, but what I want is for you to fix this. And I want it fixed right now! We are talking about an end-of-life situation, and I want my husband to be comfortable today. Do you understand?!"

In a matter of minutes, an end-around solution had been proposed and adopted, much to my relief and, I'm sure, everyone else's. I am not a squeaky-wheel-type person, but I can be. I don't like to blow up, either. But, apparently, I can do it. Like Vesuvius. A bedside nurse was assigned to stay with him overnight to make sure the medication was appropriate, effective, and being properly administered. I breathed a temporary sigh of relief.

Here we are, a couple of days later. My husband has started "squirreling" his food (pocketing it in his cheeks), indicating a further decline from his pre-Monday baseline. Since dinner yesterday, his food is being served as a puree, and his liquids are thickened. This theoretically helps to prevent aspiration, but I noticed at dinner tonight that it isn't completely effective. He is choking a little, and he's having some trouble clearing his passages with a cough. He's trying to blow his food and drink out instead of swallowing it, as though he can't remember how to swallow. Or perhaps he just doesn't want to. Where just a few days ago he was "eating 100%," that hasn't happened except on Tuesday.

There's no way to know how many more roller-coaster rides there will be on this journey. There may be other close calls before he takes his last breath here on earth and makes his transition to paradise. I thought I was prepared, but here's what I found out:  You might think you're ready, but you're not and never can be. Not really. When the end comes, it will be a sudden, crushing, and devastating loss. It always is, even if the process takes a while. And then there will be no more days together until eternity, when there will be endless glorious days in the presence of the Lord. And that will be...heavenly.