Why don't people tell you this stuff?

You know, the past month or so has been pretty awful. And long. And stressful. I haven't struggled to find joy like this, since the early days after my husband left us. As a Christian, I know it is there for the taking, but it has been increasingly more and more elusive. I haven't struggled to feel peace - God's peace has remained a constant, but I'm not used to being so in the dark. I don't question where God is, but I am being reminded why faith is important and what that really means. Sometimes faith alone is the only way forward.

My mom has terminal cancer and she has been dealing with that for about a year and a half. She is of the belief that if you don't know the facts, it isn't really happening and so she is not one to ask questions of her dr's. I am the COMPLETE opposite, so it has been a big struggle for me to just follow along on the journey and really not know what is happening or how bad things really are or have an approximate time line. There are dynamics in the family situation that complicate things greatly and that is hard too. I suppose, ultimately, it is being totally out of control that is the hardest. It is not really my fight.

People are going to die. For some it will be long and drawn out. For some it will be quick. It could be painful or painless. So many ways for the end to come. Here's the thing... it's hard to get people to talk about it. You know when you're pregnant (well, you don't all know what I mean, but bear with me.) and your friends all tell you how wonderful it is, how you'll forget all about the birth because the love you have for your new little bundle of joy will just somehow drug your brain and erase your short term memory? (That is a big fat lie, by the way!) People are more than happy to tell you all the fun, warm fuzzy kind of things, but people are not lining up to talk about bleeding nipples, burning pain when you pee, sleep deprivation that makes you insane, or the amount of fluids and smells you are going to have to adjust to. The same is true about end of life issues.

I went in to the process of dying with many misplaced notions and beliefs. For example, sickness and the knowledge that she is going to die at some point has not mellowed my mother out or made her nicer. In fact, I would say the opposite is true. She is demanding, impatient and sometimes just plain mean. She is also in pain, scared and out of control - I get the correlation. Being a caregiver for an ailing parent is remarkably similar to being the parent of a colicky baby. It is frustrating, exhausting, sad, scary, overwhelming and plain miserable. At least with a baby, you know it will end and something new will start. With an ailing parent, the end is the end. For me, that means there is guilt. Why can't I be a joyful, calm and peaceful caregiver? What do I do with the resentment I feel for the amount of time that is being taken from my life? I love my mom, but sometimes the "like" is harder to come by.

Before we become a parent, we have time to adjust to it (at least several months), but we get thrown into being a caregiver for a dying or sick parent, often without much warning. And, I think, that even when we get some warning, we ignore it, because who wants to think about being sick and dying? Toss in a parent who doesn't want to deal with any of it and doesn't have their wishes sorted out and the stress seems insurmountable. Nobody warned me about the strength of emotions that I would be feeling. Or how many of those emotions are negative. Somebody has to start talking. I picked up a couple of books to read, but so far I haven't read something that has really made me feel any better.

I can imagine that it's hard to be the sick or dying parent, being cared for by your child - and I appreciate that - but we all know we are going to die and we need to be responsible as adults and have things prepared for the day that our kids have to take over things. There would be so much less stress if things were in order and there were no secrets.

I think that just like we have books we read before we become parents (think of What to Expect When You're Expecting), we should have books to read for the end of life as well. I want to be warned about the amount of bodily fluids I need to be prepared for (just as many as with a baby, and then some), or that I am going to need to deal with diapers, dirty clothes, smells, sounds and nakedness that I don't need to see. When we look at our naked little babies, we smell them, cuddle them, marvel at their pudgy little legs, laugh when they fart and applaud when they burp. Let me tell you now, with a sick/dying parent, it is all the complete opposite. I was not prepared the first time I saw my mom looking like a complete skeleton. It is tough and we aren't even at the end yet.

I am fortunate in that I have friends that will listen to me complain, vent, freak out, etc. but there are many people who don't talk about it at all. I see those people come to visit their sick/dying family members in the hospital and I wonder how they do it. I have peeps to call when a dr pisses me off or my mother pisses me off, for that matter. And I have people who are praying just for me. I know there are lots of people who are praying for my mom, but it means so much to know that there are people who are out there just for me. So, to all my people, thank you.

And, if you're reading this, please get your affairs in order while you can and it's not a big, heavy subject. Let the end of your life be for spending time with the people you love and not a big stress mess.