Let me back up a bit, give you the backstory.
Then let me tell you why, after all the hoopla, I did nothing.
My Girl isn’t so good. You probably know that by now. But lately she’s really been ramping down. So when I was offered a week’s respite by the hospice, even though we weren’t due, I grabbed it. I have no idea how long this will go on. Whatever date that sunset has stamped on it, I have to keep going.
At ten-thirty yesterday morning, I jump in the car, pick up a few groceries on the way, then drive straight to the hospice to fetch my Girl. She’s been there a whole week. It feels like a year. It also feels like ten minutes. This has been a long, tiring journey. For both of us. I can’t wait to see her. I’ve also been dreading it because I’m back in full-care-mode. But that’s all okay.
Until I walk into the room, that is.
She’s lying there with her hair in the pretty pink clips I got her. But she’s not my Girl. Her cheeks are hollow, her hair is sparse. It’s as though someone has sneaked in while I wasn’t there, and stolen my beautiful Girl. All I have left is a hollowed-out shell. I’m shaken.
The nurse doesn’t seem to notice the iced-over expression on my face. Instead of making a scene, I swallow back the tears, stiffen my upper lip, and say nothing.
All my Girl’s bags are packed, her meds are ready and she’s set to come home. The nurse tells me she’s been eating well, she’s been chatting, although they did notice that when they showered her first thing, clumps of her hair were falling out.
I don’t need her to tell me that clumps of hair are falling out. I can see her scalp through the strands.
When I fold back the covers, her stomach is distended again. “Yes,” the nurse tells me, “she seems to be bloating up again.”
“Maybe she’s been overeating,” I tell her pointedly. “If it’s there, she’ll just keep eating.”
The nurse doesn’t seem to have spotted the tension in my voice. She happily goes on to tell me that, no, she didn’t have big meals, but her blood sugars are soaring, and that could be due to the infection in her shoulder from the syringe pump needle.
“A shoulder infection?”
That’s right. She now has a very nasty infection from the needle site.
“Oh! Right. Of course. Why didn’t I expect that?”
The nurse doesn’t seem to notice the stinging sarcasm that’s leeched into my tone. I’m obviously too nice. (Maybe I could use anger management lessons, the ones where I manage to get angry so people know about it.)
“The shoulder looks really nasty,” the nurse tells me as she pops the meds into the bag, “but the doctors are hoping the antibiotics we’ve been treating the urinary tract infection will help clear it up.
“Oh, you’re hoping? Well, that’s good.”
Okay, so let me get this straight—I sent you my beautiful Girl who was chatty and sweet, with manageable bloods sugars, perfect skin, and a headful of silky soft hair, and after a week with you, she has a shoulder infection which, from what you’ve described, I might not want to check out while I’m sober, she has a UTI, and her bloods are screamingly high. Oh, yes, I almost forgot—and her hair’s falling out.
Yep, that’s about the size of it.
I pack her up, keep my gob shut tight. I have to go home, plan and execute the perfect response. Someone will hear about this. And they will hear in bold, anger-managed terms.
When I get her home, the wound on her shoulder is oozing. I still don’t look at it. What’s the point? I’m giving her antibiotics. I can’t do anything else. With the help of one of my *Ladies-of-the-Morning, I get my Girl into bed—ensuring there’s no pressure on the shoulder—I change her diaper, and give her a drink.
Next I call the first of my “outraged and indignant” supporters. I tell him the tale. I go into detail about the UTI, the shoulder, the hollowed-out cheeks, the blood sugars. I tell him I’m outraged. I suspect he guessed.
“Bloody hell!” he says. “What did they do to her? How could they send her home that way?”
I knew it! I knew I was right to be outraged and indignant. But I’ve still got a seed of doubt fluttering about in my brain. The remaining members of my “outraged supporters” are absent, so I call my counsellor. I tell her. I get into detail on the UTI, the shoulder, the…oh, you know, the whole lot. I elaborate on my outrage, then burst into tears. Because I can.
There’s a moment’s silence on the line. I don’t feel a bout of outraged indignation coming my way. I’m beginning to think she’s not on my side, that she’s siding with the hospice. Instead, she tells me the truth.
My girl is not getting better. She’s not going to get better. She will get worse.
My girl’s immune system is so weak, that anything, anything can be the difference between her life and her death. An unthinking visitor with a simple sniffle could kill her. People who are dying lose the ability to fight the slightest health issues we take for granted. For the terminally ill at end-of-life, we have to accept some facts:
There is no fix.
Bed-sores don’t heal.
Wound sites from operations get worse.
Hair falls out.
Infections happen no matter where the patient is—home, hospital, wherever.
Sometimes, not getting better is the best you get.
We live in a society where we expect medication to fix things, make illness go away. We watch movies where families sit around watching on as the loved one slips comfortably away with a simpering smile on her lips. Don’t believe me? Watch My Sister’s Keeper, then ask a hospice nurse to tell you how close to reality that is.
Reality is a loved one who dies long after everything has been stripped away. Reality is being an on-the-job-trained carer managing bowel movements, and open wounds that ooze pus and blood alternately. Reality is the loved one passing away in that very moment the loving and constantly-attendant carer nips out to the toilet, only to return to find their loved one, deceased and covered in vomit or blood or feces, and that’s the image they’re left with, along with the cleanup.
We’re not a society that learns about the reality of death. We don’t like to know. For the staff of a hospice, it’s real, and all of the above happens. They go to extreme lengths to retain a patient’s dignity, to keep them comfortable, to allow them to pass without pain. Doesn’t always happen. But hospice staff don’t sign on for the money and the perks.
Turns out that while my Girl was in the hospice, that infection was spotted the instant it arose. They checked it four-hourly, had two doctors attend to it, they changed the site of the needle, checked her blood sugars, fed her, showered her, kept her dignity.
Yes, I was right to be outraged. It’s my job.
But sometimes my job simply isn’t enough.
*Please note that while I’m privileged to have care workers who come in the mornings, they are euphemistically referred to in our house as our Ladies-of-the-Morning. Conversely, the night-watch are our Ladies-of-the-Night. Not to be confused with the “other” Ladies-of-the-Night. Just in case you…wondered.
**Also note, the headful of silky hair was probably less than a headful…Okay, was definitley way less than. Emotive language in use here.