Being a caregiver isn’t for the faint of heart. This morning at 4 am, I’m thinking of the final scene in the Bette Davis movie, Jezebel. Henry Fonda (Preston - “Pres”) has come down with the yellow fever and is being shipped off to the island where all yellow fever victims are sent to die so they don’t contaminate the rest of the healthy population. Bette Davis (Julie) pleads with Henry Fonda’s wife (Amy) to allow her to be the one that goes to the island with Henry.
Julie: Amy. Of course, it's your right to go. You're his wife. But are you fit to go? Loving him isn't enough. If you gave him all your strength, would it be enough?
Amy: I'll make him live, or die with him.
Julie: Amy. Amy, do you know the Creole word for fever powder? For food and water? How to talk to a sullen, overworked black boy...and make him fear you and help you? Pres' life and yours will hang
on things just like that,...and you'll both surely die.
Amy: Then it'll have to be that way.
Julie: It's not a question of proving your love by laying down your life. Nothing so easy. Have you the knowledge and the strength...to fight for his life and for your own as one will have to fight? Amy, it's no longer you or me.
Amy: What do you mean?
Julie: I'll make him live. I will. Whatever you might do, I can do more...because I know how to fight
better than you. Amy, if you knew the horror of that place. It isn't a hospital. It's a desolate island haunted by death. They'll put Pres in an open shed with a hundred others.You must be there with him day and night, watching every breath he draws. You must bathe him, keep him clean...
...give him drugs, fight for his food and water. You must keep the living from him, and the dead.
Be there by him, with your body between him and death. Amy, I...
Amy: Where is he?
Julie: Upstairs. End of the hall.
Amy: I'm not afraid.
Julie: No, you're not afraid. You're the bravest woman I ever saw. I even believe you have the courage to save him...by giving me the right to go in your place. You're not afraid to die. I boldly ask a greater sacrifice in Pres' name, his life.
Amy: And for yourself?
Julie: I'm asking for the chance to prove I can be brave and strong and unselfish. Help me, Amy.
Help me make myself clean again, as you are clean. Let me prove myself worthy of the love I bear him.
Amy: Julie, tell me, something that only you can tell me...does Pres still love you? He himself might not know, but you would.
Julie: Amy, you must let me go with him.
Amy: Tell me.
Julie: What does it matter who he loves? It's his life that matters.
Amy: Tell me.
Julie: We both know. Pres loves his wife. Who else would he love? Not me, surely. I've done too much against him. You see, I never knew how to be gentle and brave as you are. Had there been any love in his heart for me...I'd have taken him from you. I tried and failed...because he loves only you.
Amy: I'm grateful to you for telling me, but I had to know. God protect you and Pres.
When this all started at the Mayo over two years ago I went to a “caregiver class.” It was 90 minutes, I think. It basically told you to wash your hands and buckle up because you’ll see changes in your patient that the doctor won’t see. As you’re around them 24/7, you’ll see a change in mood, diet, bowel movements, etc. The idea is to catch everything as early as possible. If something is going wrong, it’s easier and better to fix it right away. So you have to be, on what I call, “high alert.”
Here’s the thing, when it’s someone you love, you’re always on high alert. Looking for the signs, signs you only learned to look for two years ago in a 90 minute class that you’re trying desperately to remember. Sure, they give you the big binder that will become your bible but it only contains when to take them to the hospital. A fever of 101, constitutes a trip to the hospital. It’s a number, it’s easy. But there’s so much more that’s not a number that isn’t easy.
What about when the doctor says she wants something scheduled but you don’t see it in the “patient app?” You know he needs to have that liter of hydration, the lasix medication administered and the catheter cleaned but it’s not showing up on the schedule on the app and the time for the alleged appointment is getting closer and closer. Finally, you go. There are no orders, the check-in person calls the lead nurse on duty. Thankfully she knows of the orders but doesn’t have them. She’ll try to get them and disappears. You’re left with the check-in woman, who you can tell is so flustered by the new software and the line of people in front of her that she’ll never remember to call, “Kelly” the nurse who knew of the orders but disappeared. Even that becomes second nature. You have to learn Kelly’s name so when she doesn’t come back or there’s a shift change, you know who said she knew about the orders. You have to get your patient to a seat while you stand in the check-in woman’s line of vision for forty-five minutes so you’re “top of mind.” You have to know when to get back into the line, by instinct, I guess, to see if the orders are in the system and finally, when they are, you have to put on your “nice enough” charms to make sure she’ll process them.
Knowing how to read a room is the most important thing. Being organized is the second and knowing when your anger will work for or against your beloved, your patient, is the single most important thing you can learn. You have to get these people, who see hundreds of people all day, to like you, like the person you’re caring for and more importantly, they have to see your worry so they understand your urgency and that you’ll be unrelenting in getting what you need from them. They also need you to show you understand their frustrations. It’s a dance, really. But make no mistake about it, you have to have your hand firmly in the small of the back of whoever your partner is at the moment to lead the conversation. Like the man leads the woman in ballroom dancing. A firm hand with subtle nuances to guide them, left but not too left, and then back to the right. Life is all choreography. You can chose to be the dancer or the choreographer but when you’re a caregiver, you must be the choreographer.
And then there’s the patient. As you try to maneuver through all of this in their name, you have to understand that you represent them so you can’t be yourself, you’ve got to be the version of yourself, working on behalf of someone else. You can’t yell at everyone, even when you feel the lava in your chest about to spew out of your mouth, because it could get the patient’s name further down the list. A small thing to the check-in person, a huge thing to the person you’re caring for, remember, always remember, you’re the caregiver. Their care depends on you.
Knowledge is important too. If you sit in a class where they tell you that it’s okay to take the generic form of a medication but that the difference in generics by different manufacturers is important to note, you better know it when the pharmacist gives you a generic by a different manufacturer. You also need to know when you see the pharmacist telling you that this is NOT different than the one you’ve been putting in his pill cases for two weeks now, that she’s not going to budge. So, you back down. You say, “Oh, I might be wrong. Let me go back and check. Thank you for the education.” You go back to the hotel, see you’re right and then plan your strategy to go to another pharmacist tomorrow with both meds in hand before you administer the new medication. You could have stayed there and argued. You weren’t getting anywhere and it was wasting the time for the people behind you and yours being away from your patient but you could have done it. Especially when it was the end of a very long day of fighting for appointments by phone, in person and finally standing for forty-five minutes but you also need to, as the old Kenny Rogers song goes, “know when to hold ‘em, know when to fold ‘em.”
I don’t know how I know how to do all of this and I look around at other patients and their caregivers and have no idea how they’re managing through this maze. But I’ve also learned that they have to find their own way, like I found mine. What I DO know is that I can do more...because I know how to fight better than you. Amy, if you knew the horror of that place. It isn't a hospital. It's a desolate island haunted by death. They'll put Pres in an open shed with a hundred others.You must be there with him day and night, watching every breath he draws. You must bathe him, keep him clean...give him drugs, fight for his food and water. You must keep the living from him, and the dead. Be there by him, with your body between him and death. Amy, I...I’m even better than you probably were, Julie (Bette Davis) because I take every job I do seriously but none so serious as this one, being my beloved’s caregiver.