Day 24 …

John Muir Woods

Minke left this earth 24 days ago. Am I supposed to feel fine by now? Well, I don’t. I feel worse, if you must know. As the reality sinks in deeper and deeper, and I look about and see this warped world without my Love, I feel worse.

I want to write about the last days with him. I’m doing this more for me than anyone else because I want to remember. I don’t feel like writing or talking about it, but the longer I wait, the less I will remember. It’s already starting to fade. Let’s face it, the last four years are a complete blur.

Minke entered home hospice on September 19, 2023. He left the hospital and came home on my birthday. At that time, he had decided not to get a tracheostomy. I was all for that. I thought his quality of life would be much better without one. Possibly shorter, but definitely better.

During the first month Minke was home, I saw him visibly relax. He was calmer. He laughed more. He told jokes, spoke clearly, and ate very well. He would occasionally ask for a beer or a small taste of his beloved Macallan Scotch. Always sipped through a straw. Always with a smile on his face.

I thought things would slow down once he was in Hospice Care, but they never really did. Caregivers came every day from 9 AM to 5 PM. Hospice workers popped in every now and then! Yes! Only now and then. (*Remind me to tell you how I feel about Hospice! It’s not good! Believe me, it’s not what you see in the movies! More on that later.)

I didn’t know how long Minke had left, but based on what the doctors said, I didn’t think he would make it to Thanksgiving. But every day, he seemed okay. Not better. Just not declining. He was holding his own. And we talked, or rather, I talked! By late October, it was harder for Minke to catch his breath so he started communicating through the computer.

He had recorded his voice way, way back in late 2021 for this very purpose. It’s called voice banking. By now, he no longer had use of his hands. So he communicated with something called Eye-Gaze. On his computer, mounted on his bed directly in front of him, he could type with his eyes. He could turn lights on and off. He could close the shades. He could turn the TV on and off. Pretty damn amazing technology. So, he would talk to me with the robot Minke voice through the computer. He would include terms of endearment. Like, “Love, please pull the covers down. I am hot,” or, “Debbie, you are my Love,” said the robot-voiced Minke.

He would tell jokes with the robot Minke voice, and they wound up being even funnier because of that monotone computer voice telling a story that really needed human emphasis. He continued making me laugh. We had made that pledge to each other to laugh every day. Well, we didn’t necessarily succeed every day. There were plenty of bad days where there was no room for laughter. But we laughed more than you might think given the circumstances.

November 25, 2023

I wrote about Thanksgiving earlier in this blog. Yes, Minke made it to Thanksgiving. Though we don’t celebrate Christmas, Minke was there for that too. And New Year’s Eve, and New Year’s Day. So the doctors were wrong. They said Minke had 1-2 months back in September, and he wound up staying 4 1/2 months! Don’t listen to doctors when they give a prognosis! There are many other factors that can keep a person here. Minke just wasn’t ready to leave! So, what kept Minke here? In a word … Love. That is the answer, plain and simple.

But, ALS is a progressive and aggressive beast and things became more and more challenging. Minke was using a Bi-Pap machine and though he started out wearing it only at night, he wound up using it almost 24 hours a day. Took off the mask only to eat or go to the bathroom. Minke fought that mask from the start. But that fight became worse, as he could never get comfortable with the damn thing. The fit was driving him crazy, mainly because his allergies were causing congestion and the mask would leak air.

The caregivers and I were constantly loosening and tightening the mask for Minke at his request. Nothing seemed to be working. And then we all realized that Minke had developed a pretty nasty wound on the bridge of his nose from the hard-to-fit mask.

Minke had consistent problems with skin breakdown. It’s part of the disease. But a wound is bad news. It could get infected, and then that makes everything more complicated. And scary. Hospice did bring some antibacterial lotion for that wound and put a solid bandage on it. But now, he needed that wound to heal, and wearing the mask would not allow that. They set up the oxygen on January 10th, and Minke had the oxygen tube up his nose instead of wearing the mask. I don’t know if that caused the final decline, but I certainly don’t think it helped.

The next day after the oxygen came, the struggle to breathe truly began. I remember calling Hospice because Minke was whispering, “Help … help me …” That will echo in my head till the end of my days. His greatest fear was that he would struggle to breathe, and here it was happening.

I called Hospice in the middle of the night and I was yelling at them. No, I’m not proud of that. I have a hard time remaining calm and not getting emotional in the best of situations. This was the worst-case scenario. I screamed into the phone, “THIS IS SUPPOSED TO BE COMFORT CARE!! HE IS NOT COMFORTABLE!!!!

The nurse showed up at 3:30 AM. The nurse was kind and patient. I have no problem with the individual nurses Minke saw. It’s the Hospice as a whole that causes me distress. The nurse upped the dose of all Minke’s meds that night. But the problem was that the morphine was making Minke sick. Minke knew it was the morphine because his mind was sharp and he always knew what was going on in his body. He wanted to throw up but he had no muscles to do so. He wanted to spit, but could barely get out the smallest stream of saliva.

This went on for TWO MORE DAYS!! Minke would sleep very little, and when he did wake up, he couldn’t breathe. The morphine was making him worse, but it wasn’t knocking him out. He said he wanted me to call Death with Dignity. Oregon is a “right to die” state.

Now, here’s the thing … Minke and I discussed Death with Dignity when he was first diagnosed in the fall of 2021. He didn’t blink when I brought it up. He said, “No. I want to be here for as long as possible.” Kudos, my love! I applaud that. But between you and me, if I was the one with ALS, I would have looked into it. But Minke didn’t want to, so that was that.

But now he was suffering and panicking. And he wanted to die, and fast. Anything to end the misery. My heart was breaking for him, but I knew it was too late. I made the call anyway. Death with Dignity says you have to be able to drink or eat 2 ounces of liquid or soft food in 2 minutes or less. They said he could sip through a straw, or if it were food, I could hold the spoon, but they were very clear that the “cocktail” needed to go down in 2 minutes. Not to mention that it took 15 days to get all the appropriate paperwork from the doctors and everything else that comes with this decision. The woman I spoke with said we could waive the 15 days, but we were out of time. There was no way Minke could take the cocktail. He couldn’t swallow anymore. It was the end, but I was bound and determined to make sure he had peace before he left.

June 6, 2023

What wound up happening, was I adjusted his meds. That’s all that he needed. But it wasn’t through the help of Hospice. Oh, no. They just wanted me to keep pouring morphine down his throat, even though it was making him nauseous. We have a friend who is a retired doctor. He called me, and when I told him exactly what was happening, he told me what adjustment to make.

I trust this friend. Minke trusts this friend. And so, I did what he said, and lo and behold, Minke felt more comfortable! He was no longer struggling to breathe. I cannot say enough how thankful I am that this man is in our lives. But he loves Minke and he helped me help Minke, even at the bitter end.

Minke was out of distress and breathing better with the oxygen. I stayed up all night with him the Saturday night before he passed, just watching him breathe. No need to call anyone, I just held his hand all through the night and watched his chest rise and fall.

The next day, Sunday, I was talking to him and he was smiling. I thanked him for the best decade of my life. I thanked him for choosing me. I thanked him for loving me. We both smiled and the sparkle was still there in his shiny blue eyes.

I know Jupiter had a similar experience, having a conversation with Minke and Minke responding with smiles and sweet tears. And then I noticed Zelda, up on the couch, staring at Minke, and Minke staring back at her, and of course, smiling.

As I play this memory back in my mind, I realize that Minke was saying his goodbyes to us. He was ready to let go, and he needed to have one more bit of connection with the three of us. I watched him fall asleep as the morning went on. Around noon or so, I noticed drool on Minke’s chin. I put a washcloth underneath to keep him dry and realized he was unconscious. A hospice nurse came about 1 pm and confirmed this.

I felt like I was going to throw up. It was happening. The signs were all there. I had been worried about this moment for so very long, and now … it was here. Minke was dying.

You may have heard that the hearing of a dying person is the last to go. When they are unconscious, they can still hear what is going on around them. You shouldn’t talk about an unconscious person in front of them; you should talk to them. Which we did. Both Jupiter and I were very aware of this, and we chatted with Minke as if nothing were out of the ordinary.

Again, I sat up with him all night. I changed the washcloth under his chin regularly. Jupiter plumped up his pillows to make him more comfortable. And he looked comfortable. He looked peaceful.

I turned on the television and played meditative music with scenes from nature. You can find these on YouTube. They created a tranquil environment. And this music filled the house for hours on end.

Monday morning, our regular nurse arrived at 9 AM. We continued through the morning as usual. Jupiter had been taking Minke’s pulse-ox throughout the past few days and it was always around 90 or 91. A little after 12:00, he took it again, and it read 76. “Uh-oh,” I jumped up. Jupiter and I both were at Minke’s side and the nurse was feeling for his pulse.

“Does he have a pulse?” I asked. “Very faint,” answered the nurse. Jupiter and I were both holding on to Minke, and Jupiter placed his hand gently on Minke’s chest. Minke took a big breath of air in, and then … he was gone. 12:20 PM. January 15, 2024.

The absolute Love of my Life, the one I had waited to meet for so long, was gone. But everything we had wanted to say to each other had been said. We expressed our love every single day. I am grateful that he was able to go peacefully and that the struggle he experienced ended before he left this earth. He looked as beautiful in death as he had in life. He looked angelic. Sleeping blissfully, serenely.

Thank you for reading and following our story. I’ve never been so up close and personal to death until now, and I have learned so much and my perspective on everything has changed. Moving forward will not be easy.

And currently, I can't breathe. I'm finding myself in the labyrinth of bureaucracy. The catch-22 of calling agencies and being put on hold and not getting to speak with a real human, and being hung up on only to start all over, and round and round and round we go. It's soul-crushing. And I miss him. And I ache. And I don't understand what I'm doing because my brain is in a fog. I can barely move. I thought caregiving was hell. No. He was here. I could see him, touch him, talk to him, smile at him. No, caregiving was a walk in the park compared to this current hell I'm in. And yet, the world does not stop. And I must move forward somehow.

It doesn’t get easier with time. I know this from other losses I’ve experienced. But I will always know that Minke loved me with a fierceness I have never known before. We were an extraordinary team. A sensational couple. Perfect and compatible in every way. Oh, what an incredible soul he was. And ours was a love story for the ages.

I love you, Minke. I always will. You are forever in my heart.

And in my pocket.