Parents: How To Be There

(Below, I use the word “child” instead of “patient”, since I’m talking mostly to parents here. But feel free to substitute your own word when reading.)
I like to compare myself to a cat. I don’t really like them (sorry, Di), but I compare myself to them because I match their longevity. By my count, I’m on life number seven. So I can have two more near-death experiences before The Last One.
As such, I tend to think about The End more than most people, especially most people my age. I’ve planned my funeral, for pete’s sake. I am fully aware than I am probably not going to die in my bed when I’m 85. I’m OK with that.
When people write about death and dying, I take an interest. Usually, it’s to see how I’d react in their situation. Unlike a lot of people, who are really just guessing, I’ve been there, and can imagine pretty clearly how I would (or how I have reacted).
The things I read are 99.9% by observers, not the patient. They’re written by nurses, doctors, caretakes, parents, what have you. Not the patient, because usually the patient’s dead. And normally I read them and then…move on.
But one blogger I read regularly recently wrote a column on death and dying and some of it touched nerves with me. So I thought that the patient’s point of view might be edifying one some points.

• When you are the patient, and you need support during a procedure, you should get it. Period. Now, I’m older, and I’m verbal. I can tell my parents to leave if I don’t want them watching something, or if I know it will upset them (like when I have to have IVs put in—they don’t want to watch me being poked fifty billion times. So I send them to the cafeteria, or whatever). But if I’m scared, (yes, I’m twenty-seven, and there are still scary procedures) I want one of them with me. Period. Full stop. Is this selfish? Maybe. But at the end of it, in the most primal way, I’m their kid, they’re my parents. As a child, I want my parent/s there. (If I had a spouse, maybe it would be him. Not sure.) I’ve always had at least one parent with me when I needed one, and sometimes I’ve had both. To not be with your child when s/he is in pain, and possibly could die, is beyond me. To me, being with your child trumps any feelings you might have about grossness. If your child is begging you to stay, you stay. Period. I can’t imagine asking my parents to stay, knowing I needed them to stay, and having them leave because they couldn’t watch the procedure being performed.
My dad has come from their house, in the middle of the night, to be with me when an emergency chest tube was put in. I was heavily sedated. I thought he was there, but I wasn’t really sure. He didn’t need to be there, and I’m pretty sure the procedure is gross to watch. But he was. My mom went with me when I needed to have fluid sucked out of my chest wall with a big needle. I’m sure that wasn’t high on her list of fun things to do with your child, but she did it. She’s changed the dressing on a second-degree burn, which, let me tell you, was not pretty. As a parent, you do plenty of things you really don’t want to do, but need done. The same applies here. Child asks, you stay.
• Really tough procedures, like trachs, g-tubes, ports, etc., that are permanent—yeah, these suck at the outset. They’re hard. In fact, trachs repell me so much that I’ve told my parents, repeatedly, that I do not ever want one unless there is absolutely noother way to keep me breathing. I’ve never had one, so my avoidance is purely based on gut-level revulsion. But if that’s what it takes to stay alive, well, we do it. I mean, that’s the name of the game—survival. I really, really, really did not want a port before I got one. I kicked and screamed (rhetorically). I didn’t want some permanent thing in me that everyone could see. (Now, almost no one can, unless they’re looking.) But it is a godsend. It makes my life 1,000 times easier, knowing that IV access isright there. Survival, in my book, is the key. Is it awful sometimes? Yes. But really, you do what you have to do. As a parent, you have to make this new apparatus as normal a part of the child’s life as possible. You cannot be repelled by it. You cannot say things like, “I hate this thing.” Your child can. But you are the child’s first societal application—if you are OK with it, that can go a long way in helping your child accept it. (When your child is older, then naturally you’re not going to be as protective.) You have to treat your child’s life as if it is normal. And it is normal—for your family. Failure to accept that makes life much harder than it has to be.
• As per the above: what about quality of life? Obviously, that’s important. But when it comes to living, then the cards, for me, tend to fall there. A good example is my hearing. It’s pretty important to me, as a singer. But before transplant, I was put on strong IV antibiotics that, we knew, damaged hearing. I knew that my hearing was already somewhat damaged when we started this drug course. I wasn’t happy about damaging it further. But we did the drugs anyway, because I would rather be alive and have the Bionic Ear than be dead with perfect hearing. Now, I wouldn’t want to be trached, permanently, if I couldn’t talk. That would really kill me, emotionally. My voice is a huge part of who I am. My entire quality of life would be shot if I was attached to a respirator all the time. But you know, I say that now. I don’t know if that’s permanent. I might have a husband and kids, and that would radically change my thinking. But right now, as a single twenty-seven year old, that’s what I feel. The thing here is that it’s subjective. My base instinct is always to preserve my life.
• At the end—the very end—I know what I want, and that is to have my death be in line with Church teachings. I’ve left it up to my parents, and of course they may consult the excellent priests we know for advice, should they require it. But this, too, goes back to point one—I trust my parents implicitly. I know they know me well enough to do right by me, if I can’t decide for myself. And for all parents/caregivers, this, I think, is where you ultimately want to be: in a place where your child trusts you to do what is right for her, and that she knows you will be there with her, no matter what option you’ve chosen. Parents, if your child is approaching this area, and they’re old enough (and able) to verbalize what they want, have a conversation about it. Your kid is probably scared enough, thinking about this, so be as supportive as you can, and try to discuss options, etc., with level heads. It’s hard. But it’s easier to talk about it before than to try to piece it together during or after.