So this is what the end looks like

Hasn't even been a week this time, and there's more to talk about.

Saturday, we hung out. Torin got sick (after three whole days at daycare/"playschool"), so my parents didn't bring him by, as Danielle getting even a cold right now would be not good. Her childhood friend, whom we've become close with again in recent years, had already planned months ago to come to Ann Arbor that day, so she came by at night. We chatted, had some laughs, and it was good.

Sunday morning, we were giving Danielle her pills, and one went down the wrong pipe. She wasn't strong enough to cough it up right away, so it was lodged there, causing a lot of discomfort and difficulty breathing. It was scary. I called hospice, and they said "warm sips of water while rubbing her back", so we did that. We think the pill dissolved (at least mostly) after a few hours, but the cough and some wheezing remained. Her friend came by again in the evening, and we established some new strategies for feeding Danielle, such as "no more straws", and giving her mushy caloric stuff like smoothies and frosties. We still wanted to keep Torin away for a couple days, to make sure he wasn't contagious, so I started hatching plans for more close friends to come visit.

Monday, Torin stayed home (and my parents') from school, and we again didn't want to expose Danielle to his germs, which was pretty heartbreaking. She was pretty sleepy, but her cough and wheeze made it difficult to get any rest. She sounded like a cat purring. I had been told that her hospice nurse case manager would be coming by that day, so I wanted to talk with them about it, but they never called or came by, so eventually I called the 24-hour number. Turns out, they were scheduled to come Tuesday, but nobody ever told us. Frustrating, but I'm sure it was just some wires that got crossed - they're only humans, over there. (Very caring and compassionate humans, in fact.) Anyhow, her soon-to-be-nurse called me, and we talked about the cough, and I thought she'd be okay for another night, so we agreed on a visit early the next day.

Not all that long after, I changed my mind. Danielle's wheezing got worse - it now sounded more like a snarling beast than a purring kitty - and her difficulty breathing was making her afraid. I called hospice again, and they said they'd send an on-call nurse and instructed us to give her a small dose of morphine, which we had received in a "comfort pack" among other medicines. That helped calm her and eased her breathing, and the nurse got there in not too long. She fell asleep finally, after not really being comfortable enough to sleep all day. The nurse said that a device called a nebulizer could help her out, but she wasn't sure she'd be able to get it delivered before the morning. Sure enough though, at about 11:30pm the medical supply company came by and dropped off the nebulizer, as well as an oxygen concentrator and spare oxygen tank. At 1:30am, an old hippie dropped off the medicine. Around 3:00am, Danielle was getting pretty wheezy again, so we gave her a nebulizer treatment and some more morphine, and it helped her breathing a lot.

Tuesday morning, we could tell that something had changed. Danielle could barely be roused, and when she was, it was only for a minute or two. She was able to answer a questions with thumbs-up/thumbs-down, but any attempt at speech came out pretty unintelligible (other than a few recognizable or anticipated phrases, such as "I love you"). She was no longer able swallow, so she could not eat or drink. It was here that we recognized a crucial and gut-wrenching fact: we had entered the endgame.

The nurse came, and more or less told us to stay the course with nebulizer treatments and morphine. She showed us how to change Danielle's diaper in bed. (Prior to this, we had been getting her to the bedside commode, so her diapers, while occasionally having absorbed some leakage, were very easy to swap out.)

Meanwhile, I was contacting Danielle's closest friends. I wanted to make sure they had another chance to see her while she was still able to understand and communicate, if in a round-about fashion. Throughout the day, we had quite a parade of folks come by. Each represented a different phase of Danielle's life, based on when they met (or at least became close). The friend who had flown in ("elementary school") had her flight out that afternoon, but she came by that morning. Two more ("college" and "back in Michigan"), each of whom live in the Detroit area, came by too. The last ("high school") drove down from Manistee, where they grew up. Together, they made up Danielle's bachelorette party crew. (A couple husbands came too, and yes you are amazing friends also, but you didn't go see a male burlesque show with her in Chicago, so I'm sorry, but you don't fit into this tableau I'm painting!)

All of them were able to coax some recognition (and love) from Danielle, and I was very happy they all got to see her. One less thing to worry about.

As the day went on, she would occasionally chime in with something related to the conversation. We usually couldn't understand, but via some more thumbs-up/thumbs-down questions I was able to gather the topic of her speech, and we occasionally could pick up a word here and there to thus be able to relate the story or memory we knew she was referring to.

She's in there. She can hear us. She knows what we're talking about. She wants to contribute, to reminisce, to express, and just can't. It's so awful. Throughout this ordeal, there really hasn't been a lot of pain, and until the last few days with the cough/wheeze, very little discomfort either. But this, to be trapped in a body that (as she's said many times) "hates her", this is her suffering.

Torin (and my parents) came over too. Yes, he's still a little sick. And yes, it's incredibly dangerous for her to get a cold when she already has breathing issues. And yet, if I kept him away any longer, I risked her not getting another chance to see her baby. It was a horrible choice. But the smile on her face made me think I made the right one.

Today, Wednesday, she at first seemed to be on par with yesterday, but as the day has gone on, I've realized that she is definitely less responsive. Most of the time, all I get is a squeeze from her hand, and answering questions with her thumb has become less reliable. 

The friends from Manistee, who had stayed at a nearby hotel, came by again for a bit, and she talked just a little at them. My sister came later and brought our niece. I'm so grateful that Danielle got to meet her. She didn't register anything at first, but eventually stroked her little head and held her. Danielle got to be an auntie. She didn't get any words out during the whole visit, but my sister says she saw Danielle mouth "I love you" as they were saying their goodbyes.

Torin came by today as well, but there was less recognition/activity from Danielle. If anything, this makes me more confident in my decision to have him here yesterday. That's been it, as far as visitors, so we've let her rest. The nebulizer and morphine continue to do their jobs, and we make sure she's as comfortable as possible.

As for me... I do a lot of crying. I spend most of my time at her bedside. I try to plan a little bit ahead, but not too much because it is, frankly, terrifying. I worked a little today (moved the laptop next to her bed), and it kept my mind occupied with something else. At every opportunity, when she seems awake, I try to let her know how much I love her, how she's the best person I've ever met and the best thing that ever happened to me, how I'm going to make sure Torin has the best life I can give him, and how, through him, she will be with me forever.

There's not much left to do but wait.