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LOSING MOM - Part 20

Peggy2Apr 6, 2019, 9:52:50 PM

I guess I fell asleep for a little bit because the next thing I remember was waking up to the reverberating whir of the medicine cart being unlocked outside Mom’s door. God, how I came to love and hate that sound, especially in the weeks ahead as Mom’s pain level grew increasingly hard to manage.

Every four hours - 8, 12, 4, 8, 12, around the clock - the sometimes annoying, sometimes reassuring hum of the medicine drawer being opened and closed echoed up and down the Hospice corridor as the nurses made their rounds.

On Mom’s good days, rally days, I’d hardly notice it, oftentimes surprised that four hours had gone by when the nurse would walk through the door. Except for the times when Mom had just fallen asleep, and they had to wake her up to take the pills. That was a little annoying, especially if I had just gotten my own self settled for a rest.

But then there were the not-so-good-days, the days when Mom was restless and agitated between her scheduled doses, when her pain, so elusive it was sometimes hard for her to pinpoint, would break through in the oddest places; shoulder, heel, elbow, back. Her pain was like one of those Mexican Jumping Beans I'd played with as a child, bouncing around inside her without any kind of observable pattern we could anticipate.

On those days, I’d sit by her side helplessly, listening impatiently for the hum of the cart, jumping up every few minutes to anxiously look down the hall to see where it was.

Where the morphine was.

I’d be so relieved when I’d finally hear it just outside the door, then even more relieved when the medicine she was given kicked in and Mom would settle back down, giving both of us a well-needed break from her distress, short-lived as it might be at times.

I worried a little that the morphine was stealing her away more quickly, but only until its effects started to wear off and her agitation increased again. Then I could have cared less, perhaps even secretly wishing they might give her just a little bit more.

Unfortunately, the more morphine Mom got, the less of her I got. Not that less morphine meant more Mom - the sad fact was that my mother’s discomfort was as big a thief of her presence as the drug that relieved it.

It was simply a no-win situation...at least from my perspective. Because despite the fact that I was incredibly grateful to the morphine for easing my mom’s suffering, it seemed I lost a little bit more of her every time the medicine cart stopped by her door.

At the end of that first week, though, Mom, still in her initial ‘rally’, was doing pretty well making it the four hours between doses, a fact that, ironically, presented us with an entirely different dilemma. According to the social worker, who we’d met with soon after Mom was admitted, it seemed that Medicare would only cover the full cost of her Hospice stay if the doctors were having to ‘adjust’ her medications to keep her comfortable.

The social worker, a pretty, dark haired woman with a short, no-nonsense hairstyle, sat across from my sisters and me in the sun room, much like a teacher in front of her class.

“So as long as your Mom is stable’, she explained, ‘and no adjustments are made to her medications for a certain number of days, then Medicare would require that she go from Level 1 to Level 2 care.”

‘What’s the difference between the levels?” Lib asked cautiously.

“Well, in Level 1 everything is totally covered by Medicare, and the patient to nurse ratio is much smaller, which allows them more time with each patient. In Level 2, the Hospice care is covered, but the room and board are paid for privately. And because the patients are more stable, the patient to nurse ratio is a bit higher.” The social worker paused, glancing down at her papers as if to double check something.

“So how much would Level 2 cost?” Lib pressed, looking over at Sal and me nervously.

“Well, it averages about $285/day for the room and board,” the social worker admitted. “But it’s all very fluid, so if your Mom's needs changed again, and the doctors had to start adjusting her meds to get her stable, then she’d go back to Level 1, and Medicare would kick back in for the whole cost."

"How long do people usually stay in Level 2?" I wondered out loud, remembering a woman I'd visited as a Hospice volunteer who remained stable, though unresponsive, for several months. Week after week I would go to her home and sit by her side, looking for some sort of sign that she was getting ready to let go. But week after week nothing seemed to have changed, at least on the outside.

What is the point of this? I would wonder as I stared at her pale, aged face, so still I'd find myself glancing at her chest every few minutes to make sure she hadn't actually died while I was sitting there. I hope I don’t die like this, I fretted, looking around the small dining room where the poor woman lay in her hospital bed, alone as far as I could tell except for the caregiver who, upon my arrival, would quickly disappear up the dark staircase.

It was so sad. Even the house itself seemed to reflect the sorrowful state of the woman who lay slowly dying within its walls, neglected and rundown as it was, a shadowed, dusty shell of its former self. I imagined it would be torn down after her death, disappearing into nothing the same way as the solitary woman who lived in it.

I suppose there's a reason that some people die quickly and easily, while others die slowly, their pain and suffering holding them hostage in a body that is clearly ready to go. Maybe it’s just the luck of the draw, whether you go peacefully in your sleep one night, or linger for months in a hospital bed alone in a dusty old dining room.

Or, then again, maybe it’s not random at all. Maybe the way we die has more to do with what our soul needs at the end, and that even though it may look like someone is just lying there without purpose, there is actually quite a bit going on below the surface.

Maybe the way we die is one final way for our soul to learn and grow.

Maybe, maybe, maybe.

"Well, of course, it's different for each patient,” the social worker's voice pulled me back from my musings, and I glanced over at Sal and Lib, guessing they were imagining the same worst-case scenario that I was with mom languishing for months in Level 2. And even if it was in her soul’s higher good that she linger on indefinitely, it certainly wouldn’t be cheap.

Cha-ching, cha-ching...I could almost hear Lib’s internal calculator clacking away as she added up what such a situation would cost.

As the daughter in charge of Mom’s financial matters for the past few years, Lib, in addition to dealing ever-so-patiently with Mom’s somewhat obsessive determination to balance her checkbook, to the penny,  had also taken great care to follow our mother’s explicit directive that she’d like to live comfortably, but not so comfortably that there wouldn’t be anything left for the three of us after she died.

Dad worked so hard for it, Mom would tell us again and again, and took such good care of me. I want to do the same thing for you girls.

Which, of course, we all certainly wanted, too. Who wouldn’t? In fact, and this is horribly embarrassing to admit, toward the end I started to think about the money I’d be inheriting as kind of a consolation prize for losing my mom. For the first time since I’d stopped working to raise our children, I’d have a little nest egg all my own, and the thought of the freedom that would give me was a little bit intoxicating.

Until I would realize what I was thinking and guilt would snap me back to reality. Jesus, Peggy, I’d admonish myself. What kind of terrible daughter are you? Your mother isn’t even dead yet, and you’re already thinking about the money you’ll inherit? Stop it right now!

What is it about money that is so seductive, that makes it seem like life would be just a little bit better if there was just a little bit more? I hated myself for letting it lure me into the insidious illusion, if only for a moment, that its presence in my life would somehow make up for the lack of Mom’s.

The truth of the matter was, though, that a lengthy stay in Level 2 might stretch Mom’s resources a bit thin, a worry that I know my sisters and I were sharing as we sat with the social worker in the sun room that day.

“So just to be clear,” Sal had taken out the small notebook she always had in her bag, pen poised to jot down anything of importance, “could you explain when and how this decision is made? Will someone give us a heads up if she’s going to be moved to Level 2?”

“Oh yes, of course,” the social worker nodded her head emphatically. “The doctors meet with the whole team every Tuesday to go over each patient’s chart. Afterwards, they’ll arrange a meeting with the patient, or the patient’s family, depending on the circumstances, and they’ll advise you then of any change in the level of care. Does that make sense?”

We nodded our heads in unison, although she hadn’t really explained what the parameters were to keep Mom at Level 1. Sal, looking up from her notes, pressed for a little more information.

"Okay, so I want to make sure we understand - can you give us an idea of how often her medicine has to be adjusted? I mean, does she have to have a certain number of breakthrough doses before they adjust her regular dose? And does adjusting her oxygen level count?"

“I’m sure you understand that the needs of every patient are different, so I can't really say for certain how the doctors make their adjustments” the social worker smiled gently at us, deftly sidestepping Sal's barrage of questions. She stood up, glancing at her watch, and then gathered up her papers while adding, “A lot can happen in a week, so try not to worry until you need to.”

Well, there was some good advice, I thought sarcastically, watching her leave. Why would we ever worry about this thing we didn’t even know we had to worry about until you told us just now? The three of us sat quietly with our thoughts until she had disappeared down the corridor and out of earshot.

“Jesus,“ I looked at Sal and Lib, shaking my head in disbelief. “I can’t believe I’m actually hoping Mom doesn’t stay stable! That's crazy!”

“If she went to Level 2 we would definitely have to re-think a few things,” Lib agreed. “Obviously she can afford it, but not indefinitely. It would be like paying double rent at Swan Creek.”

“God, you guys...I had no idea there even was a Level 2. No one ever said! Although who knew Mom would even still be here to worry about it?” I felt kind of ambushed, like someone had pulled a fast one on me at the hospital when Mom had signed the Hospice papers.

“I think we just have to take this one step at a time,” Sal interjected. “It’s only Thursday...a lot can happen between now and next Tuesday.”


So for the next few days we watched Mom like a hawk, and if we noticed even the slightest hint that she was uncomfortable, or that her oxygen might need adjusting, one of us would march purposefully out to the nurse’s station and ask someone to come in and check her.

Sometimes we were successful in getting Mom a breakthrough dose, or a change in her oxygen level, though not always. Sometimes the nurse would simply reposition her, using pillows to prop up her arms or legs, depending where the pain was.

‘Is that better now?” she would ask, patiently moving things around until Mom nodded her head.

‘Yes, thank you,” Mom would whisper through her oxygen mask. ‘That feels better.”

Oh well. Even though we were subtly (or maybe not so subtly!) trying to fabricate a few more instances where Mom’s care needed some ‘adjusting’, the nurses never failed to make her more comfortable - and that’s all that really mattered.

Anyway, the Tuesday meeting was looming large, and the closer it got, the more we started to brainstorm some alternatives. It just seemed that if Mom was stable enough to move to Level 2, then perhaps she was stable enough to move someplace else. But where?

Over the past 6 years it seemed we must have talked about ‘where’ Mom should go about a million times. In fact, up until her move to Swan Creek the year before, we had probably looked at a dozen different ‘independent living facilities’ from Ohio, to Connecticut, to Maine, trying to find the perfect ‘where’ for her to go.

Then no sooner had she gotten settled at Swan Creek than her health took another nosedive, and the conversation started up again.

The most recent one had just taken place over Christmas a couple of months before, when Mom had come to stay with John and me for several weeks. He and I talked a lot about what it would be like to have her there all the time, and both agreed that it would be okay. Not ideal, obviously...neither of us really wanted either of our aging mothers moving in with us, but neither did we want them alone in a nursing home at the end of their lives.

And though John's mom was, thankfully, still doing okay, Mom was clearly declining. Sal and Lib, who both came to visit while she was there, could see it, too.

“Maybe after we get her to Maine in June, we just bring her back here, rather than to Ohio,” I threw out during one of our many conversations. “She’d be mad, but maybe partly relieved, too.”

“I think we’d have to tell her beforehand,” Sal said, “but maybe we just have to put our foot down and tell her she doesn’t get a vote anymore. We’re the ones who’s lives get disrupted going out to Ohio all the time.”

“It would be so nice knowing she wasn’t alone,” Lib added. “Are you sure John wouldn’t mind?”

“He says he wouldn’t,” I assured her. “I think he’d rather have Mom here than me flying off to Ohio every second. Although that’s easy for him to say right now when she’s going home in a couple of days!”

We agreed to table the conversation until we got closer to going to Maine and, in the meantime, we’d alternate going out to Ohio to check in on her for the next few months.

Of course, then she fell and well, there we were. In Ohio. Possibly indefinitely. Trying to figure out, once again, ‘where’ our mother should go.

Long-term care at Swan Creek? No way. Her apartment? Well, maybe for the short-term, but if Mom were to linger for months, which right then seemed like a real possibility, maybe it would be better to figure out a way to get her to Connecticut. To my house. Like we’d talked about.

We could arrange Hospice there, and hire some aides to help take care of her. Mom would be in a familiar place, surrounded by people who loved her. And even though Sal and Lib would still have to travel to see her, it would be on their terms.

But first we’d have to figure out a way to get her there.

So Tuesday morning, as Sal and I waited nervously for our meeting with the doctors later that afternoon, Lib on standby in California so we could conference call her in, I did a little research. First I searched to see if we could rent an oxygen concentrator that could handle Mom’s significant needs, and though I couldn’t find one that we could rent, it appeared we could buy one for under $2000. I was shocked! Having paid over $300 to rent one for three weeks over Christmas, I’d assumed it would be way more.

Feeling a bit more optimistic, I turned my search to long-distance ambulance services, and found one in the area that could take Mom from Ohio to CT, with oxygen, a nurse and room for one of us to go with her, for around $4,000. Again, I was shocked! I made Sal and Lib try to guess, and like me, both assumed it would be more like $10,000, maybe more.

And even though it still felt like a bit of a pipe dream, I felt a little rush of adrenaline that we had found a feasible Plan B. We could stop worrying that Mom might languish for months in Level 2, draining her daughters’ energy and her bank account dry.

I suppose I was mostly relieved when, later that afternoon, the doctor told us they would be keeping Mom at Level 1. After all the angst of the past few days, it was a relief to know that Mom wouldn’t have to move. That she could stay right where she was, with the best care. But, even so, I think there was a little part of me that was a bit disappointed we wouldn’t be needing Plan B.

Because Plan B meant action. Plan B meant a change of scene. Plan B meant I could go home.


The whir of the medicine cart that woke me was followed by a soft knock on the semi-closed door. The nurse glided into the room, moving slowly and deliberately so as not to startle Mom, who was still sleeping soundly. Spotting me curled up on the recliner in the corner, she smiled and whispered, ‘Sorry...I’ll just be a minute.”

Then she gently touched Mom’s shoulder, murmuring softly, but firmly;

“Kay? Sorry to wake you...it’s time for your medicine.”

*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!

Parts 1-19