Keeping your composure as a support person is a vital piece of a successful transplant puzzle. Transplant centers require support people as criteria for a reason. And it’s not just to be a patient’s taxi driver.
Caregiver Cool
According to my mom, who was my caregiver, I am a good patient. Hooray! I tried hard to be a good patient, even though my mom might be a smidge biased.
One of the things that falls on the shoulders of the caregiver (and a TON falls on the shoulders of the caregiver) is keeping your composure as a support person when dealing with your patient and their care team.
For instance, people with liver disease usually face bouts of hepatic encephalopathy (HE). Disorientation from HE may be so severe that even the patient’s name eludes them. Other symptoms might include slurred speech or mood swings. To outside people, your loved one might look drunk and belligerent.
Why Keeping Your Composure Is So Important
The person you are caring for is also most likely afraid. They are facing death (without a transplant) and even facing huge risks with the surgical procedure itself. Because of nausea, headaches, and fluid retention (among other things), they don’t feel well. Frankly, they are sick and tired of being sick and tired.
Here’s where you come in. Your loved one may not be very nice to you sometimes (maybe because of a loss of brain function or maybe just out of sheer frustration). They may have emotional breakdowns; they may be up all night with incontinence issues.
Your loved one is going to rely heavily on you to help them keep it together. And frankly, the only way you can do that is if you keep it together.
Listen, I’m not suggesting that you are expected to always have your composure, but when your loved one is struggling with their meds, grappling with their mortality, or just plain being a pain in the patootie, that’s when you’ve got to take a deep breath and (as my daughter puts it) put on your patient face. Then later, go have time to yourself to scream into a pillow, cry, or do whatever you need to do to release some pressure.
What Keeping Your Composure Means
I remember a specific time when I was in the hospital and not doing well. Very confused, I kept asking my mom to help me sit up…even though I was already sitting up. The thought that I was dying (quite honestly, because that prospect was not that far off), was terrifying. I told my mom, “I don’t want to die.”
My mom, being the rock that she is, simply replied, “Well then don’t!” Simple as that. Those words empowered me that I just had to buckle down and keep fighting. Was this an easy night for her? Not even a little bit. Did I sense or know that at the time? Nope.
Keeping your composure isn’t only about not yelling back at your loved one when they’re being a jerk. It’s giving them the strength that they can get through this even when they believe they can’t. My dad never once accepted that I might die. It simply was not an option. And when he spoke with me, that’s the thinking I took on as well.
Keeping Your Composure But Taking Care of Yourself Too
Take care of yourself. Talk to a therapist (some resources for finding one are here) or a close friend or family member and share your frustrations. This experience is traumatic for you too. No one expects you to handle it all alone.
Please know, when you keep it together it helps us keep it together and we appreciate that very much. Even if we don’t say it. Your level head keeps us grounded and allows us to focus on making it through.
And if you don’t hear it from your loved one, I am grateful for you and what you are doing. Without you, this journey your loved one is going through would be near impossible. I applaud you.
Breathe deep, and put on your patient face. You’ve got this!
