I began writing this a few days ago. I didn’t finish. I needed to.
So here it is …
Thursday, I busted my Girl out of hospital. It was a raid worthy of a crack military team. Okay, maybe not that worthy, but it was close.
She was in there because her blood sugars had been hovering at a staggering 30 mmol/l. In the American system that’s 540 mg/dl. In any system, that’s ridiculous.
The doctors immediately put her on an insulin drip and put her on a ward.
Now, let me paint you a picture. Hospitals are the places you go to get better. They are not the places you go to get comfortable. They are not places of peace. Now that I’ve got that out there, you’ll begin to understand where I’m coming from on this.
My Girl starts out in Observation. They need to get a grip on her blood sugars then transfer her to a ward. I wait with her for four hours. At 5:30 p.m. I reluctantly leave.
I return on Day Two to find her in a ward. She’s sharing a room with three others. All women. All over 80 years in age—a couple maybe over 90. I suspect my Girl is in this particular room because it offers her some company. Although not from the old dear opposite in Bed 1. She mostly sleeps. Every now and then she lets out a wail. It’s disconcerting. I want to nip across and comfort her. I’d probably make things worse.
I’m just getting settled, comforting my Girl, when a nurse sweeps in. The old dear diagonally opposite in Bed 2 informs the nurse she’s going home today. The nurse tells her gently that she’s not going home, that’s she’s staying in the hospital, and then sweeps out. Next to us, the third old dear in Bed 3 gets up and paddles off out of the room. The nurse sweeps back in. Bed 2 tells her she’s going home today and Bed 1 wails in pain. The nurse administers medication to Bed 1 and tells Bed 2 she’s not going home. Bed 3 paddles back into the room to advise the nurse of the horror she’s just discovered—the doors are locked and she can’t get out. The nurse gently guides her back to her bed, telling her not to worry and that she’ll check the door.
She prepares to sweep out again, and checks my girl’s blood sugars. They’re still raging. Bed 3 gets up and paddles off down the corridor again. The nurse tells me the doors are locked, even at visiting time because if they weren’t, they’d lose 75% of their patients within the first five minutes.
I sit with my Girl for a total of five hours. Over this time, the scene above is played out over and over. The Girl’s blood sugars persist in the late 30’s. By the end of the day, Bed 3 is still paddling around and around, Bed 1 is sleeping and wailing, Bed 2 can’t understand why she isn’t at home. I’m exhausted, my Girl is sleeping, so I leave.
On Day Three I catch the doctors doing their rounds. Amongst them is the liver specialist. He tells me nothing I don’t already know. He tells me the girl’s insulin-resistance is puzzling.
Really? I mean, Really?
I request the palliative team’s involvement and settle back to my vigil. My Girl is mostly sleeping and I have so much to catch up on back home. The washing has piled up, the floors need cleaning, the dog has forgotten who I am. I kiss my Girl and head home.
On Day Four I sit with my Girl for another five hours. I bring my own lunch but it’s costing me a fortune in parking. I request some kind of parking concession since I’m here feeding, washing, toileting my Girl. The nursing staff put in a request. They advise me it takes at least 24 hours.
On Day Five, I arrive at the hospital. I cannot say how sick I am of hospitals. I hit the door bell. As the doors swing open, I walk in passing Bed 3 who’s walking out. At the nurses’ station, I report another attempted escape. They dispatch two nurses to retrieve Bed 3 and catch her at the stairs. She’s gently guided back to the room.
When I get there, my Girl is gone.
My first reaction is panic. Then I realize they would have informed me if something dire had happened. I’m told she’s had a restless night and she’s been moved to another room.
There’s good news, and bad. My Girl’s blood sugars have dropped. I’m ecstatic! They’re down to a sensible 9.2.
But now her abdomen is distended from sitting in a bed all this time. She’s retaining water and she’s in pain. The doctors are doing tests. They’ll get to the bottom of it. That’s their job. They test her blood, her urine, her stools. They put her through an x-ray, a CT scan, an ultrasound. They’ve already put her through every test known to man, and I suspect they’ll put her through a car-wash next.
Now she looks even sicker than she was when she went in. Her face is puffy, her stomach swollen. I go home depressed and feeling as though I’ve let her down.
I lie in bed that night, worrying. All I can see is her face. She’s in pain, she’s unhappy. Then the thought hits me—she has to come home. I don’t care if I have to fight them. I’ll take all responsibility. My Girl doesn’t want to be in the hospital. She wants to be home with Boo Boo her bunny, and Lilly Lion, and Dead Cat. She wants to be in her room, in her bed with her toys and her Smurfs and her music. She needs to be at home with her mummy.
The next morning I call and speak to her nurse on duty. I tell her I’m coming to get my Girl. The nurse says she’ll have to tell the consultant. I tell her that’s fine, tell whoever, but I’m taking my girl home.
As soon as I’m dressed and ready, I storm in there. The door opens and I burst in, passing Bed 3 who’s on her way out. I inform the nurse that Bed 3 has escaped and demand to see the consultant. I’m told that the parking concession has arrived, but it’s can’t be applied retrospectively. I say I don’t care, I won’t need it. I’m taking my Girl home.
Then the consultant appears. I’m ready for a fight. I know my rights. I’m prepared to thump my fist on the desk and demand my Girl’s release. But the consultant is in the process of completing the discharge papers. She tells me she thinks it’s the right decision. The charge nurse appears, telling me she agrees. We order an ambulance, and pack the girl’s belongings.
She’s coming home. She’s coming home and I couldn’t be happier.
Yes, it’ll be tough. Yes, it’ll be terrifying. But it’s all about quality of life.
So here are a few rules I picked up along the way:
1. Do not ask the doctors if there’s anything else they can do. They’ll find something.
2. Sometimes, one more test is one test too many.
3. If you are the main caregiver for a terminally ill person, it doesn’t matter if you don’t have a title or initials around your name or a plaque on the wall, you probably know more than about your terminally ill loved one than anyone else.
4. There is no cure—there’s only comfort.
5. It really is about quality of life.
6. And finally, there is nothing more important than being surrounded by love, good intentions, and home.
In my next blog I’ll address caring for the terminally ill at home. It’s more incredible, more frightening, more fulfilling, and sometimes more hilarious than you could ever guess …