the room where it happened (this is long, not gonna lie)

I went to see Hamilton in Louisville earlier this year. Tonight, I can't get that song out of my head. You know -- "The Room Where It Happened."

Have you ever been in The Room When It Happened?

I hadn't.

My grandmother died Monday, 9/9/19 at 5:01 pm in front of my Mom, Dad, my sister, and me. Just the five of us, in the room where it happened. Until after that split second when only four of us remained.

A little backstory.

Mamaw moved out of her Bloomington, Indiana duplex of her own accord, and sold her Chevy Lumina to opt for Assisted Living back in 2007 or 2008. Maybe she just knew she'd live a good long life and need the extra care.

The dementia started up at some point after that.

By September 2018 she'd been through hernia surgery, hip replacements, and I don't even remember what else. But on the 15th of that month last year, she had a UTI and a 103 degree fever. She fell out of her own bed, was septic or nearly septic. Bloomington Hospital. Bloomington Rehab. Me telling Mom, she needs a nursing home. It should be here, in Louisville, with us.

We moved her down in October 2018, around her 94th, and last, birthday.

She didn't have power in her legs anymore. She had to be lifted in and out of bed. Her eyes were getting Real Bad. She'd let them get her up, generally. We'd wheel her down to the cafeteria to eat. She knew us. She knew how to spell dog and 2+2 but don't ask her what year it was or what day of the week.

November 2018 - hospital. Pneumonia? Maybe just Congestive Heart Failure and then some AFib for good measure. Go on and throw the book at this woman. She'll keep on tickin'. Hospital Delirium can't keep her down!

The steady decline was in full swing at some point, but mostly over the last few weeks. I went to see her Sunday, July 28th and she wouldn't open her eyes or suck a straw to drink water. Her mouth was clenched and drawn, if that makes sense. She maybe spoke faintly. I expected a call in the night.

She had good days and bad days. Mom went every day. She saw the ups and downs. I mainly went weekly, but over the last month I didn't go as much. (I'm sorry, Mamaw. I know, Mamaw, you're right. I don't need to be sorry.) Then, over the last few weeks, she started to have trouble swallowing.

I went to see her semi-randomly on Friday night, September 6th around 5 pm. She wouldn't open her eyes, talk, suck a straw, or easily swallow thin, small bites of yogurt. I tried to feed her two bites. The spoon full of iced tea didn't seem to go down any easier.

I walked down to tell the nurse - I can't do this. I can't feed her. She said, "She hasn't been eating." We later learned she had gone from weighing 157 (which was low for her) to 131 in a month's time.

I said, "Emily, level with me. What's her timeframe?" I bawled. Emily hugged me. Emily thought a week or less. Another nurse thought maybe even that night, or as soon as a couple of hours.

Apparently she did "rally" or have a "last hurrah" at some point very late Saturday night with her nurse Tammy in the room, at like 3:00 in the morning (just before bars close/ just before some people get up for church.)

Tammy asked, "Are you in pain?" Mamaw said no. And giggled. And then started basically mocking her nurse, mimicking, "Are YOU in pain? Are YOU in pain?" Etc. And being giggly.

Sunday, Mom and Dad got to the nursing home at 10:00 a.m. I arrived around noon. I was there til 8. They didn't leave the nursing home until Monday evening, 32 hours after they arrived.

Around dinner time Sunday evening, the gurgles started. Thank god for Hosparus. We added Ativan and increased the Morphine, ordered the tablets that help the gurling not suck as much for those who are alive and remain.

I hated to leave. I had to go home, get Stella to bed. The secretions started before midnight. Lighter in color, foamy at first.

Monday morning, she was still "with" us.

I got there at 9:00 after getting Stella off to school. My sister arrived from out of town at 10:00, which surprised all of us. We thought she wouldn't be able to get away from work. We thought maybe Mamaw had been waiting on her. By 1:30, no real progress. Damn. The secretions were darker in color. But her breaths were so consistent. Her heart rate was high throughout the entire process, far as I know.

We even left her room for an hour. Did she want to go out alone? We'd give her that chance.

At 4:30 we're calling Hosparus for 11th Hour volunteers. We can't go on like this for days. Her breathing became just a slight bit gaspy-er. She'd opened her mouth a little wider to breathe those last 30 minutes of breath.

The four of us, my sister, mom, dad and me, were all sitting down as that 5:00 hour neared. We were talking about situation that I'd been in about a month before. I was at my parents house that Monday night, August 12th, and I hadn't really slept in days. I needed brain rest, but couldn't get to sleep. We'd gotten some medicine, but it wasn't strong enough.

I was laying in the spare bedroom - my sisters old room- and my dad was speaking to me gently trying to get me to drift off. (It didn't work. I ended up in the emergency room a little later.)

So - in the nursing home, I'm sharing the story about how I felt that night. I wasn't talking to my grandma, wasn't "coaching" her.

"It was like -- as I tried to drift off to sleep -- I felt like I was sinking, and if I fell asleep, I would die. I  thought I'd had this epiphany about the universe, and either proved or disproved the existence of god. And it was like, Oh! I figured it out, so now I'll just die. And I sank. But I thought, as I was trying to sink to sleep, THIS MUST BE WHAT IT FEELS LIKE TO BE DYING! And then.... I'll die... if I fall asleep... and they'll be like DAMN, SHE'S DEAD!"

And I kid you not. My sister was listening, but focused on my grandma's face. And my sister said, in a SPLIT second after my story, "She's changing. Something's changing."

Short quick burst of breath, puffpuffpuffpuff. Gunk.

Us by her side. It's okay, Mamaw.

Puffpuffpuffpuff. Gunk.

Her eyes widened after being closed for at least 72 hours. There was some expression on her face for a split second that I can't describe because I was focused on her mouth, but my mom thinks maybe it was like she was about to cry happy tears.

And I couldn't. I couldn't believe it. With her dementia, I just wonder. Was she laying there for 3 days thinking, I know I'm dying? And then forgetting. And then, wrapped up in some memory and not knowing where she is in time. And then, knowing she's dying. But forgetting. And so on.

And maybe us gently, quietly telling her "it's okay to go" wasn't enough. It wasn't loud, like my story. Nothing else clicked, or it wasn't the right time. Maybe she needed to know I'd be okay. Maybe she needed to hear the four of us talking as a family, to know we were all okay with one another. We are.

I just hope that the last words on earth my Mamaw heard, weren't "Damn, she's dead!" Although she did cuss a lot in the last several years, so it is what it is, and I can't change it.

And it's intense.


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