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.
When Mama Rose asks Gypsy Rose Lee: “Just one thing I want to know. All the working and pushing and finagling, the scheming, the scrimping, all the lying in bed nights figuring how we’ll get to the next town, how we’ll all eat on a buck, how I’ll make an act out of nothing. Why did I do it? You say I fought my whole life. I fought all YOUR life. So tell me now, what did I do it for?
Gypsy: “I thought you did it for me, Mama.”
When I started to blog about my adventures as a spouse of someone who got a kidney transplant, I told myself that I could write it in such a way that it would still allow Michael to have his privacy. But after the recent post I realize, there’s no way to do that, really. You see, Michael hates all this “sharing” online to begin with and I thought that after writing and re-reading my journal posts that they wouldn’t be too intrusive to his privacy. Turns out, I was wrong. When I read today’s post again, I cringed for him, knowing how he’d feel if he saw these posts. Out of respect for him, for us, I think these are writings best kept as a journal of the events that have taken place for me and not to be shared with the world.
So although there is more written, it won’t be appearing online. If I find a way to tell how I feel without taking away Michael’s privacy, maybe I’ll post some more but for now it just feels like an invasion of privacy.
We both appreciate the support and love that has been afforded to us by everyone we know. We’ve still got a couple more weeks here in Arizona before we get to head back to Vegas. So thanks for the good thoughts, that’s all we need at the moment. He’s progressing nicely and we’re looking forward to getting home and welcoming this new phase of our life. Hope to see you in it!
I’ve also realized, like Rose comes to realize in Gypsy, “I guess I did it for me.” Gypsy: “Why Mama?” Rose: “Just wanted to be noticed, I guess.”
2:40 am the day (middle of the night, really) after the release from the hospital
So after three days in the hospital (sleeping on a chair by his bedside that didn’t fully extend so you had a lump in your back the entire time, you know, like the one in your throat), they said he could check out. New kidney, old spouse, new anxieties and the old hotel where we had stayed previously for our visits to Mayo Clinic, wondering when we would get the call to come and get Michael’s new kidney.
We weren’t prepared. I don’t think you can be, to be honest. Oh I’m sure some people have the “hospital bag” poised at the front door, waiting for the call but we were not that couple. Hell, we didn’t even have a real plan for someone to watch the cat (thank God for the kindness of current and past co-workers jumping in). That said, we were as prepared as we could be for us when the call came on a Thursday afternoon at 12:30 pm (October 4, 2018). I was at work. They had a kidney, it looked good but there were biopsies to do once the kidney arrived at 9 pm so they would call us around 10:30 pm. That bought us time to ready ourselves. While Michael got his head around the idea that he was getting a kidney, I was doing what I do best, running. A dash to Walmart to buy enough cat food for 14 cats for 14 years, even though we only had one cat. Filling 5 gallon water bottles that were empty, that we wouldn’t need on our trip, just because. Calling the hotel and finding my faith in humanity lifted when the operations manager offered to get us a room on the Mayo campus at an enormously reduced rate and asked, “Is there anything else I can do for you?” Throwing everything out of the refrigerator and cleaning it like a mad man (I clean when I get stressed - I should only be stressed more often, then the house might be cleaner!) The call came at 9 pm, we were on the road in the next 45 minutes. By 2 am we had arrived at Mayo Clinic. At 5 am they wheeled him into surgery and at 7:20 am on October 5, 2018, the doctor came out to say the surgery was uneventful and that he was glad Michael wasn’t “bleedy” - a good thing.
The next three days in the hospital, you’re living moment to moment. First there are the thousand tubes and machines he’s hooked up to. As he was taking his first steps around the hospital floor, I remarked to the physical therapist and nurse, who were holding all of these cords so he could shuffle along, “Wow, maybe someday he’ll get to be a real boy and not have these strings.” No response. Either they were too young to have seen Pinocchio or we were in the ward for those without a sense of humor. Everyday there was something new. Hell, every few hours there was something new. A new medication, a different dose, a different benchmark for his blood pressure, decisions to give him hemodialysis as he had a “sleepy kidney” (not uncommon in organ transplant, especially when the donor had been deceased). So much new that you don’t really have a lot of time to think about being stressed.
I found moments to get a shower or fill the refrigerator at the hotel for his arrival “home” while he was in treatment or sleeping. I sent texts, called his mother with updates, called my mother with updates and all the while I would get texts from friends that said, “Don’t forget about self care!” It was day three, this was hardly the time to ask Michael to wait on his next round of meds so I could go to the spa. People, designed only to annoy, it seemed.
I wrote a pithy and emotional post on Facebook. Michael despises social media but had authorized I could post something. Well, friends from a thousand years ago, who had no idea Michael even needed a kidney started posting. Some seemed passive aggressive to me, “Wow, can’t believe no one told me about this before seeing this post, I’m shocked. Please send him my best.” (You have to know the people. I could hear the tone coming through the iPad screen.) And yet, in the moments when I was in a bathroom or somewhere by myself, I re-read my post and the comments (old and new) over and over again. It made it real. And felt like support. Wasn’t this self-care?
If you’re dealing with someone going through this, just know it’s never a “good time” to send the text or call but go ahead and do it. It’s a distraction and allows me to roll my eyes at the people who just don’t fucking get it. “Everything ok?” Is the text equivalent to a booty call text, “You up?” I know you’re trying to be nonchalant but he just had his abdomen ripped open and someone’s organ placed inside so “Everything ok?” REALLY? “It’s a fucking sideshow and I feel like the one armed carny trying to sell tickets, while pasting the beard on the bearded lady without anyone noticing.” Yet, I simply answer, “Yup, can’t text, more later.” When I don’t answer at all, that’s self-care. Maybe not a spa, but feels good not to answer when I’ve always prided myself on having the answer or being able to find it for someone.
I fell asleep on the couch at around 9:30 pm and Michael woke me, telling me to go to bed. I slept until he came to bed around 2 am and then I was on high alert. He has these horrible hiccups, preventing him from sleeping (they last for hours) so I got him a Xanax (which he’s allowed to have, as needed) but when you discover you’ve doubled the dose of what he’s supposed to have and he has to be up for labs at 5:30 am, you stare at him for awhile to make sure he’s breathing and then, convinced you’ve killed him or hurt his recovery, you get up, start writing notes for the doctors for tomorrow’s visit and find yourself a blogger again (if only for yourself) as you listen for sounds of breathing from the other room. 30 minutes of sleeping sounds, 3 trips in to stare at him sleeping, 3:30 am, the fucking hiccups returned. ARGH!!!
I am fortunate that I’ve been a lot of “things” in my life. I often say I’ve reinvented myself more than anyone I know. That’s both professionally and personally however there has been one constant in my life for the past 30+ years, Michael.
Michael is a private person. Michael thinks the Internet is up to no good. Michael sees no reason for social media. Michael is a performer but only on stage, not online. The day I met Michael I said to myself, “I’m going to know this person the rest of my life.” I’d never had that experience before or since. Love at first sight? Maybe. Cosmic intervention? Maybe. The Lord doing his/her j-o-b? Maybe. All I know is I’m grateful for him in my life because he loves me as I am for who I am (even if that changes from moment to moment).
When I recently started (over six months now) working for a well-known charity, in a “get to know you” exercise, they asked, “Tell us something we don’t know about you.” I said, “I believe in my heart, I’m a writer.” (Confused but supportive looks.) My Mother believes she’s a writer, my aunt IS a writer, my niece is a writer so I guess it’s no big leap that I would think I was one too.
In 2006 I was chosen in a national contest to blog for Project Runway Season 3. My blogs appeared on the Bravo website every week and they encouraged me to start a blog. I did. I blogged for four or more years but it became more of a chore than a joy so I stopped.
Three years ago Michael was having extreme fatigue and they kept sending him for iron shots. He was anemic and they couldn’t figure it out. Finally the diagnosis came that he was in renal failure. The kidneys were in such bad shape they didn’t biopsy them to see what happened. They suspected years of undiagnosed high blood pressure (get yours checked) and thus began our journey. For more than six months he ignored it, then he fought even the idea of dialysis, then he accepted it but we also went to Mayo Clinic to get on their transplant list and finally, he began peritoneal dialysis in the home. It started as 6 hours a night, then 8 then eventually 12 ½ hours. Recently they determined that it wasn’t working, it wasn’t cleaning his blood. Every night, I would ready the machine, carefully wiping everything down with bleach solution to ensure it was sterile and safe for him. He would hook up, he would take thousands of pills, and while he initially felt better on the dialysis, we were coming to a new phase where his doctors told him, much to his horror, he was going to have to go on hemodialysis. We dreaded it. Physically and emotionally it was the one thing we didn’t want. Then, because things happen when they’re supposed to, the call came from Mayo and within 24 hours he had a kidney placed in his body and we were off on another journey. The journey of recovery for him, for me, for us.
As Michael is a private person, this is not meant to share intimate details of his journey but rather to document and assist me in figuring out my place in all of this, as the wife from the musical Ragtime sings, “I will be journeying here, my love. As you go.” What happens when what you’ve been hoping for, for over two years, happens? Why isn’t it all sunshine, happiness and delight? Who the hell are you going to be now if you aren’t the person whose spouse needs a kidney anymore?
So why share all of this? Because I’ve always been and will always be a performer. I try to hide it but I guess I’m not a very good actor. As my mother says, “The people, everyone, they love the show business.” And it’s true for me too. I still long for applause. To hear an audience laugh or cry. To move people with my life’s work, it’s choreography, if you will. And therefore, here’s my latest work that I’m directing. My thoughts, my words, out in the universe for those that choose to read them, journey with me and hopefully laugh, cry and buy the t-shirt along the way. Thank you for reading. (Curtain slowly rises.)