Burned out and useless.
It finally happened. I managed to evade it for quite a while but it did catch up with me. There’s many ways of saying it – ran out of gas, hit the wall, bottomed out or as the blog title states – burned out. The last couple of months have been exhausting with so many highs and lows and not a lot of time in between. Running from one situation to the next, never thinking, just doing. So when life, reality or whatever you want to call it, catches up with you, it can be nasty. That’s what I have been dealing with for the last three days now. Migraine headaches that just take me right down. I have great medication to numb some of the symptoms, but really my body is telling me to stop. Rather, my body is making me stop. Hopefully, three days in, I am on the other side of it now.
It is my fault and mine alone that I’ve got to this state. Certainly my husband or my sister-in-law haven’t gotten me here. In fact, both of them have told me to slow down, that I won’t do anyone any good if I don’t. Truer words, right? I suspect that this is the norm for a lot of caregivers; you try to be superhuman, but the crash, when it comes, makes you realize that all you’ve been is foolish. I have heard it from everyone, how important it is to make time for yourself. Somehow, just like being a parent, making that “time” is secondary to absolutely everything else. But it shouldn’t be – and it can’t be. Because if you don’t make the time and you keep pushing and pushing yourself, then you bottom out – like I have.
The thing is, the only expectations that I have to manage are actually my own, not anyone else’s, just mine. The expectations all along have been self-imposed. My husband is happy for any support that I can give him. He hasn’t criticized me, nor complained. It’s my own desire to be all things to all people that needs to be revised. So, after being fairly useless for three days, it became apparent that the necessary things still got done – we ate, slept and got by. There are some things that really can wait – they won’t go away – but in the grand scheme of things they are way down there. Looking after myself needs to move a little higher up on my priorities list.
I am feeling completely overwhelmed right now. This journey is a brutal one on an emotional level as well as a physical level particularly for my husband, but also for me. I know it’s not about me, but I am a big part of the equation. Eight hours ago he finished his chemo treatment and it takes it right out of him. I know this. He needs to rest and repair and I need to support him in that. However, it seems that with every day further into this treatment his frustration increases. There are so many things that he wants to do or that he wants done and there’s really only me. I feel like I have the weight of the world on my shoulders.
We need to get the garage cleaned out before the snow comes, we have to be able to park a car in there. The leaves are falling off the trees and he wants the yard raked. The gutters around the house need to be cleaned out otherwise they will be useless when the spring thaw comes. There is the matter of moving a couch out of our basement and doing a dump run – to do that we have to put the trailer on the car. Then do the dump run. We have to get the snowblower over to our daughter’s house. There was a building permit registered on our house years ago for work that we never did do, but we need to get the permit closed off – it likely means an inspection to see if we did change the footprint of the house – I need to schedule that. Why? Because now he thinks we probably should sell the house. It’s a side split and difficult for him to get around in. Sell the house? Yikes, that’s a nervous breakdown headed my way.
As always, there are the day to day things that I need to do. I’m it now, I do the cooking, shopping, cleaning, laundry, garbage, dog walking, nursing and caregiving as required. Yesterday I fixed a toilet – a first for me, but not that hard. And he continues to identify new things that he wants done. At this point I say “just add them to the list” and in my mind finish it off with “of things I’m not likely to do.” I’m feeling overwhelmed. It’s time to start saying “no” right up front if it is work that I can’t do or don’t want to do, and either jobbing it out or hiring someone. Makes for some unpleasant conversations but has to be done otherwise I will be completely useless because I’m overwhelmed.
Another night that I can’t sleep. I lay in bed listening to his breathing, sort of. He has sleep apnea and has lost so much weight on his face that his mask doesn’t fit properly anymore. So he hasn’t worn it for the last couple of nights. We have the bed inclined at the head to make his breathing easier. It’s an electric bed that we use now, provided to us courtesy of some friends. He has his feet up as well, elevated because of the swelling in his leg. Really I shouldn’t even be trying to sleep in the same bed – but he’s needy and wants me there. No easy task to find sleep when you are a side sleeper forced into the nook of the bed formed with both the head and feet up.
He’s restless tonight and having some fairly vivid dreams or hallucinations, not sure which. So far he’s told me to listen for the guitar riff coming up in the next song, he’s asked me to hold his guitar, and then later needed me to put his paint brush on the table. He’s a pretty busy guy considering he’s supposed to be getting some shut eye.
I feel like I have the weight of the world on my shoulders right now. It seems like there is a constant onslaught of things that need to be done over and above just getting through the day. The car broke down on Friday – right after we got out of Emergency. That was towed to the garage today and I will need to follow-up in the morning. I just discovered that in a recent thunderstorm one of our trees must have gotten struck, I need to get the hydro company out to look at it – it’s right beside a hydro line. We have a new furnace being installed on Monday morning (in less than 8 hours), I need to call the CPAP people about the mask, need to call Oncology about the rough week he had last week, there’s prescriptions to pick up, and more stuff that I can’t remember. There’s more because there’s always more. Life is unrelenting – it just keeps pushing forward and you do what you do to get by. So for now I’m going to have a little pity party for myself and likely feel guilty afterwards because, after all, I’m healthy and I’m sure anyone with cancer would love to change places with me and have to deal with the mundane issues that I am complaining about.
The biggest issue we face right now is managing the pain. Debilitating pain can make a bad situation appear absolutely intolerable and literally shatter hope. We have been told that using the drugs and following the schedule would be the most significant approach to managing the pain. It makes perfect sense, right? But there are so many drugs, some at 8 am, some at 1030 am, some at noon, again at 2, then 430, and on and on….. So although I dole out the meds, the patient is less than willing to take them all. I cajole, beg, plead, and he says “I’ll take them when I need them. I feel pretty good right now.” The thing is he feels good because they are in his system, not taking them on the schedule means he dips and the pain comes back and, in our case, we got to a crisis point, where nothing was really touching the pain.
Today, we had the visiting nurse in. I took a different approach. We had all of our conversation in the room with my husband. I asked the nurse to explain the dosage of certain drugs, the interactions – if any, the role of each drug, etc. At the end of the conversation I did a simple summary of what we had discussed. “So the intent of the schedule is to ensure that the pain medication is delivered in a constant flow. The schedule requires that he take the meds even if he feels reasonably good, correct? There are three different types of pain relievers he is taking, they all have different roles, correct? One is for nerve pain, one is for chronic pain and one is for break through pain, he needs to take all three on a regularly scheduled basis – correct?” We talked through all of this, the three of us, the nurse, me and my husband, and a variety of other things as well. We will take this journey together.
Gannets on the Rocks
I’m the caregiver, not the patient. I have the unpleasant task of observing the process from a powerless position. I have to make decisions that I hope are right, based on what I think I know, and on what I’m being told. It’s tough. My husband is a very social man. We have a large group of friends. They all want and need to see him. But it is exhausting. It has to be done, but really who is it for? It comes at a price. Everyone wants to help, we know this. Everyone needs to see him, to share their disbelief. You see one month ago he was absolutely fine, or so we thought. Today every breath is a challenge. Cancer in the lungs, cancer in the bones. A break in his spine and a fracture in his sternum. Makes breathing tough, coughing almost impossible. The pain is all consuming. And this is only the beginning. In a few hours we attend the hospital to put our hope in a group of complete strangers. My darling husband becomes another file, another case number, another statistic, just another sad story. This is a journey through hell I’m sure..