Dear Christie: A Letter to a New Caregiver
Dear Christie,
It’s 10 p.m., Dec. 26th, 2018. You just got this crazy phone call from Mom. She told you that her disease — which you still don’t know the name of — has a “cure.”
You knew she was getting sicker fast, but you didn’t know how bad it already was. You’ll realize it tomorrow when she texts you from the ICU at the University of California, San Francisco. She’ll casually tell you about her fancy private plane ride in the middle of the night. You’re going to want to throw up, but she’s keeping it cool, so you will too. You’re both faking it, but that’s OK.
Here’s my advice for these first few days and weeks, which you already know because you’re going to do it anyway … Keep your hands busy. Keep your heart open. Keep your head high.
You’re going to fight through a lot of scary and horrible moments in the coming months, but I promise you will survive them all. More importantly, mom will too. I know that you believe that about 99% of the time right now, but I also know how much the doubt will scare you when you let it. I wish I could give you that extra 1%, but have faith.
Refuse to entertain the demons; it’s self-preservation, which you need. You can and will sort through all the deep, dark stuff later. Right now, you need to be a badass. You’ll learn how to be that for Mom, and for Dad. You’ll carry that attitude on for yourself when this is over.
Being a badass doesn’t mean that you should ignore the hard feelings — they’re valid and important. You’ll let them come out sometimes. Much later — like, my present day — you will learn the importance of feeling bad. I’m feeling things now that I should’ve felt a year ago. I don’t take it personally though; you had a lot on your plate.
You’ll do a good job of getting through this. Honestly, I’m impressed. You will grow up fast and have to step up in a big way. Mom needs that, which will make it easy. Dad needs it too, but he won’t say so. Go easy on him. He has a lot going on in his world that you can’t understand. It will frustrate you when he doesn’t cope in the same way that you do. And sometimes you guys will be exhausted, and a bit too hungry, and you won’t be able to find a parking spot, and you’ll want to scream. Don’t scream at each other. You’re the dynamic duo and you need each other.
When you feel like you’re carrying a lot, lean into your support system and let them help with the load. Jen will show up for you at the exact moment you’re about to fall apart. Your best friend will get you through it. You will sit together in her car and have a conversation you’ll never forget. She’ll be there on the day when Mom makes a turn for the better, and you will celebrate by drinking ciders in a hot tub in your underwear. Enjoy that night. Have one for me.
You’ll learn to ask for help, and when you do, you’ll be given it in many ways, and from lots of unexpected places. People you don’t even know will be praying for your family. You’ll actually feel it. Nurses, physical therapists, respiratory therapists, and doctors will blow your mind with their compassion. They’ll cry with you and hug you even if they just met you. You’ll reach out to Kathleen — that girl from “The Rising Tide Society” who you interacted with for five seconds online — and you’ll become fast friends. She will change your life.
I wish I could tell you how much stronger you become because of this. You wouldn’t believe what you accomplish because of the strength you develop as a caregiver. You definitely wouldn’t believe that you have over 50 published columns, or that you own a business. You’ll just have to take my word.
Before you get there, though, you will have to do a lot of hard things. The physical work of caring for Mom after her transplant will be rewarding. You will get to help her as she helped you as a child — helping her dress, bathe, and get around. You’ll celebrate her progress with mobility and strength, and become an expert at sorting pills. You’ll catch her when she’s collapsing on the sidewalk outside of the ER. This and the week that follows will contain some of the worst days for everyone. Mom won’t remember much of it, which is not a bad thing.
Just do your best. I know you will.
I am proud of you, and I love you.
Sincerely,
Your Future Self
***
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Holly W Patient
I love you, too. ❤
Kathleen Rainwater
Awesome
Brenda Harding
My mom’s journey is different. She’s 92 years old and a firecracker. She’s ignored this disease until she couldn’t. She’s been diagnosed for 4 1/2 years. I’m now seeing a big decline and now I have retired to step up my assistance for my mom. I need to find out what questions I should be asking her physicians, as well as help my siblings understand the next steps. Your letter is a great starting point. I appreciate reading on this website to stay in the here and now and not go down the would have, could have, should have path. I’m so appreciative of all the resources here, and information. Thank you.
Christie Patient
Hi Brenda,
I am so glad to hear that this letter is helpful for you. My heart is with you as you bravely walk this path with your mom. Support and love is everything. If you ever need to talk to people who get it, our forums are good place to connect, or you can reach out to me here :)
Christie