LOSING MOM - Part 13
I really thought that when my sisters and I finally made the incredibly hard decision to move Mom to Hospice, it would be the last big decision we would have to make on her behalf. That once we got her there, the way-more-qualified-than-us Hospice staff would assume the responsibility for making any further decisions regarding her end-of-life care, and we could just, well, be with her.
I, for one, was pretty exhausted from all the decisions, big and little, that we’d had to make the past few days. And although I felt deep-rooted sadness that those decisions had ultimately led Mom to Hospice, I also felt immense relief to have her in a place where she was, already, being so well cared for.
Where everyone knew exactly what needed to be done to keep her comfortable and pain-free.
So you can imagine my surprise, when David, the pleasant, soft-spoken intake nurse, glanced up from his clipboard and asked, “Would you like us to keep giving your mom her heart medications?”
What? I looked over at Lib to see if she was as surprised by his question as me, and wished that Sal hadn’t had to step out to answer a call a few minutes before. My eyes wandered over to our still sleeping mother, and, though I was grateful she hadn’t been subjected to all of David’s other, very tedious questions (she would have been SO irritated!), found myself wishing she would wake up to answer this one for herself.
I mean, what were we supposed to say? Those medicines he was asking about were what had kept her alive the past 8 years, since she’d had her stroke. If she stopped taking them, her heart would go into Afib, which would raise her blood pressure, which would, I was fairly certain given her current condition, kill her pretty quickly.
Oh my god, I thought to myself. Is that why they're asking? Are they trying to speed things up? Do they want Mom to die faster?
“Ummm, I don’t think we’re really ready to do that,” I ventured. “She’s been so good about taking them all these years, it might really scare her if we tell her she doesn’t have to anymore.”
I paused a moment and then added hesitantly, “Unless you think it would be better for her to stop them?”
“No, no...it’s fine either way,” David quickly assured us. “We just have to ask. Sometimes patients have trouble swallowing and well, it's one less thing. Has that been an issue at all?”
“I don’t think so,” I looked over at Lib, who was nodding in agreement. “But she was going downhill pretty fast at the hospital today,” I added reluctantly, “so I guess I’m not exactly sure now.”
‘She took them this morning,” Lib interjected, leaning forward in her seat to rub Mom’s shoulder. “Let’s not give up on her yet, ok?”
Poor Lib. As hard as this was on Sal and me, it was even harder for our youngest sister. It wasn't that she loved Mom more than us, but when Lib's son, Henry, was born with a rare genetic disorder called Angelman Syndrome, she and Mom had formed a unique bond, and for the past 22 years our mother had been Libby's staunchest supporter. With her unconditional love and unwavering support, Mom had been an anchor for Lib as she navigated the turbulent sea of raising a special needs child.
And so even though it was getting harder and harder to hold on, there was just no way Lib was letting go of that anchor without a fight.
'OK, understood. We will keep her on them for now," David made one last notation on his clipboard, then collected his papers and stood to leave.
"We're going to take good care of her," he promised, pausing at the foot of the bed to gently pat Mom's leg on his way out. "Try not to worry."
The door closed behind him with a click, and Lib and I sat for a moment in silence. Well, almost silence. The soft hiss from the oxygen, combined with the gurgling of the water reservoir attached to it, and the steady tick, tick, tick from the large clock on the wall, filled the room with a soothing hum, a sound that would, sadly, become all too familiar in the days and weeks to come.
The room itself was pretty generic...an odd combination of hospital functionality and motel room decor. Definitely a step up from the sterility of the hospital room we'd just left, but still a far cry from home.
There was the standard hospital bed and rolling tray table along one wall, and a small, laminate dining table and large, pine-colored TV armoire on the opposite side. I tried to imagine Mom ever being able to sit at a table again, maybe having a meal and watching the news the way she so often had at home, but I just couldn’t see it.
Even so, I appreciated the possibility that the table presented and was momentarily grateful to whoever had thought to put it there.
A comfortable looking, floral covered recliner was tucked in the corner facing the bed, with a handmade quilt hanging on the wall behind it. Quilts as wall-hangings are not usually my cup of tea, but it somehow added a nice, homey touch that warmed up the otherwise bare, beige walls.
But the best thing of all was the big, bay window that looked out over a pond and garden in the back, an incredibly welcome sight after the hospital parking lot we’d been staring out at the past few days. It made the room feel light and spacious, despite the growing darkness of that dreary first day of March.
I knew that Mom, if she ever woke up, would love looking out that window.
Anyway, once David left we busied ourselves putting away the things I’d brought over from her apartment - nightgowns in the dresser drawer, toilet kit to the bathroom, family photos on the table. Sal came back in and helped us hang the Maine poster on the wall opposite Mom’s bed so she could easily see it...not exactly the same as looking out at the real view from her bed in Maine, but as close as we could get.
And finally, when we’d run out of busy work, I went out to the communal refrigerator to retrieve the bottle of wine I’d hidden there in a brown paper bag. I felt a bit like a teenager sneaking around behind my parents’ backs as I skirted past the nurse's station, but luckily no one seemed to notice.
“Do you think we’ll get in trouble?” I asked, combing through my purse to find the corkscrew I'd tossed in earlier. “It might be kind of embarrassing to get kicked out of our dying mother’s hospice room on her first night!”
“Let’s just not make it too obvious if a nurse comes in,” Lib said, “Maybe keep the bottle in the bag.”
Sal, by the way, preferred a good gin and tonic to wine, and had already mixed herself a drink and hidden her own contraband back in her bag.
We each pulled up a chair next to Mom's bed, and as we sipped (gulped) our drinks, talked quietly about where we might go for dinner, and whether one of us should come back to stay with Mom overnight.
Suddenly, out of the blue, Mom opened her eyes.
'Mom??'
We jumped up from our chairs and circled round her, anxiously watching as she looked around the room, her eyes settling for a moment on the clock hanging on the wall across from her.
‘I think it's time for the news” she announced, her voice a bit hoarse, and muffled through the oxygen mask.
I looked at Sal and Lib in disbelief, not sure what was happening. Did our nearly dead mother really just tell us it was time for the news? Were we witnessing some kind of miracle?
I looked at the clock and started to laugh when I saw that it actually was time for the news. 6:25pm to be exact.
"Oh my gosh, Mom! It is! Do you want to sit up a little?"
She nodded her head faintly, so Lib fumbled for the control button on the bed to raise her up. It was surreal.
Somehow our mother, who we had tearfully been saying goodbye to a few hours earlier, was now sitting up in her bed, asking to watch the news.
'Are you feeling better? Are you hungry?'
'Maybe I'm a little hungry,' she answered weakly. 'But I think I'd just really like to watch the news.'
I think I might have mentioned this already, but watching the 6:30 news was a nightly ritual that Mom rarely missed. And the older she got the more intractable about it she became, making anyone she was with sit down and watch it with her. One time, when she was visiting us for Christmas, we were all gathered in our family room having a lively conversation amongst the different generations, when she interrupted the whole thing and made us turn on the television.
Her millennial grandchildren tried to protest, but she was adamant. Mom could be pretty stubborn that way.
So while Sal grabbed the remote to find David Muir, Mom's favorite newscaster, I hurried out of the room to find her something to eat.
Julie, the lovely nurse who had gotten Mom settled in, was behind the nurse's station and looked up as I approached the desk.
"You're not going to believe this!" I told her excitedly. "Mom just woke up, and she's hungry! And she wants to watch the news!"
Julie's reaction was a bit more subdued than I guess I'd expected. Rather than rushing down the hall to see this miracle for herself, she instead turned calmly to the aide behind her and asked her to go to the kitchen and see about getting some broth heated up.
Then she gently took my elbow and led me slowly back to Mom's room.
"We see this often," she explained as we walked down the quiet corridor. "A patient can sometimes rebound once they get here and we've gotten their pain under control. In Hospice lingo it's called a 'rally', and they can last anywhere from 5 minutes to 5 days. Sometimes even longer."
"I just can't believe it," I said, still elate. "We weren't sure she would even wake up again, and now she's watching the news! She hasn't wanted to do that since before she fell."
Julie nodded in understanding."We like to think of these rallies as little gifts to the family...but there's no way to know how long they'll last, so just try to enjoy them when they happen!"
I followed her into the room, and was momentarily brought up short by the ordinariness of the scene before me. There were my sisters, cocktails (surreptitiously) in hand, sitting on either side of Mom's bed, with all three heads turned toward the TV. How many times had we sat with our mother like this?
It looked so familiar. So normal.
And because the day that we'd just been through had been anything but normal, a rollercoaster ride of emotions that I was still reeling from, I realized Julie was right. That this 'rally' Mom was experiencing, this moment of normalcy in a day that was anything but normal, was truly a gift.
And whether it lasted a week, or just until David Muir signed off that night, I promised myself I would treasure it.
*Note to Reader: This is a story in progress, so I am sharing it as I write it, as a way to spur me on. If you're interested in following along, here is the link to the others I've written so far. Thanks!