LOSING MOM - Part 6
It became pretty clear over the next couple of days that Mom was not going to be bouncing back the way we’d hoped, even with the three of us right there at her side.
First of all, she couldn’t seem to tolerate the nasal cannula for more than a couple of minutes without her oxygen level falling below 90. Not a huge problem, as long as she was in the hospital, but in order to be discharged, even to a skilled nursing facility, she had to be off the full mask for at least 24 hours.
Secondly, she was still experiencing the mysterious leg pain. Every so often, completely out of the blue, Mom would suddenly cry out, her body convulsing as a spasm swept through her.
Sometimes the pain was so great that she would try to get out of bed to escape it, adding a whole extra layer of worry since she couldn't even stand up without someone helping her.
And what was increasingly frustrating was that no one knew what was causing the pain. Medication helped, but the doctors were reluctant to give it to her on a regular basis until they understood what the underlying issue was.
So then the pain would come back, and one of us would rush out to the nurse’s station to ask for more painkiller, which they would give, but then wouldn’t give again in time to prevent the next spasm.
A vicious cycle, with Mom caught smack in the middle.
Finally, when we just couldn’t bear to see her in so much pain any longer, we asked for the hospital’s Palliative Care team to come assess her - a decision that was, at the time, brutally difficult to make.
Looking back, I guess it probably shouldn’t have been so hard. Mom was clearly in distress, and suffering from not just one, but two serious illnesses - congestive heart failure and late-stage lung disease. Both had been totally under control before she fell, but seemed to be worsening since she’d been admitted to the hospital.
Plus, her regular doctors were stymied, and Mom herself was exhausted, not just from the pain but from the whole dismal hospital experience as well.
Oh, and have I mentioned yet that she also had a fully torn rotator cuff and 2 fractured ribs from a previous fall?
And let's not forget the 12 stitches still in her head.
So, yes, wow...calling in Palliative Care was definitely, without question, the right thing to do.
Except that it didn’t feel like the right thing at all. Even with everything that was wrong with our mother, it honestly felt more like we were throwing in the towel. Admitting defeat.
Which, of course, I knew was not the case at all. I knew, from my years of being a hospice volunteer, that receiving palliative care did not mean it was the end. In fact, once someone's pain has been brought under control it can actually extend their life.
But somehow, even knowing all this, it still felt like we were giving up. Like we were letting the pain win.
And if the pain was winning, then we were losing.
Losing Mom.
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The Palliative Care doctor who came to assess Mom was lovely. Tall and attractive, with a soothing voice and manner that immediately put us all at ease.
She asked Mom to describe the leg pain as best she could, and listened attentively as Mom, though maybe the teeniest bit annoyed to have to explain it again, tried to tell her what it felt like.
So now here's where things get a bit delicate (awkward), and I'm not sure if including this part in the story is the right thing to do. It's pretty (very) private, and feels a little (a lot) like an invasion of my mom's privacy, especially since she's not here to say it's okay.
But the thing is, over the course of the following weeks, Mom would keep saying to us, 'I hope what I'm going through will help somebody else someday'.
Of course, she might have just meant her overall dying experience, and not something as specific and personal as this.
However, in the hope that maybe somebody, somewhere, might read this and be as relieved as we were to find out that the pain Mom was experiencing was an actual known medical condition, I am going to plow forward, awkward as it may be.
I have to laugh a little, because growing up my mom was not exactly the best at talking about S.E.X., at least with me. When I got my period for the first time, she handed me a giant box of pads and a garter belt, and said 'Well, Peg, now you can have babies."
So you can imagine my surprise when I heard that very same mother reveal to the perfectly nice, but total stranger of a doctor, that the pain she was having felt ''you know, like when you want sex, and don't get it.'
Wait, what? I looked at the doctor in confusion, about to interrupt my mom who, up until this moment, had only ever complained of pain in her legs.
But the doctor was nodding in understanding, explaining that what Mom was suffering from was something called Restless Genital Syndrome. Similar to Restless Leg Syndrome, it starts with a strong, unpleasant urge to move, and, in some cases, can be quite painful, especially if you can’t move.
And despite what the name might infer, it seems the condition has nothing to do with sex. In fact, it actually occurs most often in the absence of sexual desire.
(Believe me, my inner teenager heaved a deep sigh of relief when she heard the doctor say that.)
So it turned out that, according to Mom, this was something she had been dealing with over the years, but it didn't happen often, and when it did she just had to move around to make it stop. The doctor wasn't totally sure what might have exacerbated it over the past few days, but she thought maybe the loss of blood Mom experienced when she fell had something to do with it.
Anyway, as unusual as it was, we were all just really happy to have a diagnosis, and a doctor willing to prescribe on-going pain medication to keep Mom more comfortable.
Looking back now, it's amazing how getting Mom's pain under control was as important for us as it was for her. We felt so much more optimistic, and that made it easier to focus on getting her back on her feet, and off the full oxygen mask.
Because then maybe, just maybe, we could focus on getting her home.
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 are the links to the others I've written so far. Thanks!