Tag Archives: cancer

What Young Grievers Want You To Know

The best tactic of any villain is to isolate you from those you care about–just ask any fictional protagonist’s best friend.

Grief is the ultimate villain. It knows exactly how to make you most vulnerable, inflicting a lethal combination of loneliness, irritability, and self-doubt. It touches everyone eventually, and we know it’s a part of the deal we make when we love someone, but somehow, we still underestimate it.

We don’t understand it. Society doesn’t really accept it. So, the grieving are often left in the clutches of the villain’s most powerful tool: shame.

I’m tired of allowing grief to be the unknown enemy. I am reaching out to you, fellow grievers, because I want to know what your life looks like after loss. I am most interested in hearing from the younger crowd, like myself, because I think we have a particular challenge that is rarely discussed outside of counseling offices and support groups.

Being young, we’re supposed to be in our prime, full of the energy and passion for life that gets us through the grueling early years of our career and helps us grow, explore, and fall in love. Our friends and peers are mostly doing that. Are we? Grief changed so much for me, and I don’t think I’m the only one who wishes they had a bit of that pre-loss optimism back. I’m probably not the only one who feels like the world expects from me a totally different story than the one I have to share.

I would like to feature guest bloggers on these themes. If you’ve lost someone close to you, and you have something you’d like to share, please reach out to me. What do you want people to know about your grief? Where did you find support, and where did you wish you had more? How has life changed for you? What do you know now that you didn’t before?

I’ll start with my own post on the topic, but I hope to have more perspectives to share. Everyone has a unique experience and process, and I want to hear about yours.

If you’re interested in sharing, please write to:
elenamcoe@gmail.com

Things My Dad Gave Me

I grew up essentially a daddy’s girl. I didn’t always love fishing, but I found myself wandering half asleep through a tackle shop at 4 AM more than once because it was something I was doing with my dad. I didn’t ever really get into science fiction, but I read through a lot of the Xanth series because my dad loved them. My dad was the one who sang me Eidelweiss when he tucked me in and taught me the German ‘mein hoot’ song that I loved. My dad was the one who usually made my lunches and drove me to school. My dad was the one who taught me how to keep track of units when I was doing pre-pre algebra in fifth grade. My dad was the one who took me camping and read stories around campfires while I acted them out. My dad was the one who bought me candy bars when he went to get gas–Crunch bar or Hershey’s Cookies N Cream, please. My dad was the one who took me out to see movies on Saturday afternoons. My dad was the one who knew what the weather was doing and whether we needed to go into the basement during tornado warnings. My dad was the one who read me The Hobbit and The OZ series. He was the person responsible for my understanding the difference between kinds of fish and different ways to catch them. He was the reason I was proud to be smart and careful with my money. He is also the reason I can take off in a car and never be afraid of being too far away from the familiar. My dad was smart, capable, thorough, and in my young mind, never wrong.

From my dad, I learned how to be logical, responsible, practical, and prepared. My dad grilled more guilt into me than any Catholic institution I’ve ever been a part of could have. Integrity. Honesty. My dad was the one I remember scolding me when I was three and had drawn on the couch in green marker and lied about it. If there was one thing I knew about my dad, it was that he never lied.

In high school, I naturally grew apart from my parents, as most teenagers do. But there was something else going on. I knew my parents were unhappy, but they never talked about it. Instead, they isolated themselves from one another, and I chose to isolate myself from them. After all, if your parents are avoiding their feelings, why would you expect your feelings to be validated? Things got even more distant when I went to school and learned that my dad had been drinking consistently for my whole life without my knowledge. I couldn’t believe it. I was incredibly upset to know that something so big had been kept a secret from me for so long. I was even more upset at the damage this new information did to my image of my dad. Since my family was still pretty much not talking about it, I kept to my old game plan: avoid dealing with parents at all costs. Two years later, my parents divorced, and I was thankful to be far away from the whole thing. But of course, the result: I had become pretty distant from them both.

That being said, I feel like I never really got to have an adult relationship with my dad. I never got a chance to have ‘real’ conversations with him the way I imagine fathers and their grown daughters do. While I was taking care of him, the stress and unresolved feelings made those conversations near impossible for me to initiate, and he certainly didn’t bring them up either.

Compound this strange, abrupt end of a relationship with the challenge of suddenly having to sort through and get rid of a life-time supply of photos, books, clothes, and all sorts of stuff my dad had accumulated, and suddenly I’m confronting the fact that I didn’t really know my father that well at all.

In finding old marriage and divorce decrees, aged brochures from vacations, a couple old college essays and awards, family heirlooms, and millions of pictures, I have been given a look into my dad’s past that I never had before. I have been reminded of the things I sort of knew about my dad’s life, but didn’t take seriously because I was just a kid. The idea that my dad lost his parents when he was about my age, and that we never once really talked about it, is one of those heavy, darkly ironic truths that haunts me.

I’m lucky to get to know my dad through relics, but I’ll always be sad that he can’t tell me himself how all those experiences made him feel. I’m disappointed I never asked. Never really paid attention. Never really got the chance to.

I think sometimes we forget that life isn’t like the movies. If our only concept of what happens when people die is what we see in film, we might expect that great life-altering deathbed conversation that seems so integral to literature and movie plots. Well, I’m here to tell you that this beautiful moment doesn’t always happen. I don’t know that I can speak to its regularity in general, but I can say for sure that it is not a given.

So, I guess if I have any advice to you, it’s to start listening. Start paying more attention, start asking more questions. Because the future is incredibly uncertain, and if you want to know someone–and I mean really know them–now is the time, while they are here to tell you.

Adulting: Exhaustion

Well, it’s been a while since I posted anything, and I feel a little out of touch. The last few weeks have been insanely busy, and I am partly to blame. Since my dad passed, I had a friend visit for a week, then the next day, my mom and sister flew into town to help me frantically pull together my dad’s memorial service at my house, and then within two days of them leaving, I had my first day of work as a legal assistant. Then the next week was full of work, running to and from my attorney’s office, going dancing (that was a plus), and finally enjoying not having someone visiting my house. But then, the next weekend, I had a group of people over to work on some preparations for a retreat, and the next day was the Superbowl (Go hawks!), and then I worked a full week again before doing another crazy weekend helping with retreat things. As for this weekend, I had a garage sale yesterday, and my friend from high school is in town. Plus, I’m supposed to have this woman come by to buy a piece of my furniture today, and tomorrow I’m having a property assessor come out to give me an approximate value of my dad’s antiques.

Basically, I am exhausted.

In college, being an RA and involved in lots of things, you would think I would have experienced this before. Except now, I realize that there really is another level of exhaustion that runs deeper. Now, I can look back and see that everything I was doing then was either required or something I wanted to do. Of course I was busy, but I wasn’t really stressed; I liked being busy. Even when I ‘complained’ about being busy, I always got a slight thrill out of the fact that I was doing so many things that mattered to me. I was exhausted but also exhilarated.

In my current life, that’s not the case. For the first time, even when I find things I want to do, people I want to see, ways I want to contribute or help, the actual thought of doing them does not excite me. It actually kind of makes me anxious. Dancing? Drinks? Dinner? Yes, I’d love to, except that I also need to call the credit card company and talk to the bank and take the trash out and post more items for sale on Craigslist, and maybe I should sleep tonight so I can wake up before work tomorrow to call that company whose headquarters are on the east coast, and when was the last time I checked the mail? I think the worst part about these tasks isn’t just having them to do. I’ve had more stuff to do at other times in my life–quantitatively. What’s hard about them is that I have never done anything like this before, so every step I take is hesitant and requires a lot of back-tracking, researching, question-asking, and repetitive phone calls to tons of different people. Then there’s the issue of why I’m doing any of it at all–losing my dad. Being reminded of that reality is definitely one of the most emotionally and physically difficult parts of these to-do’s.

All of this makes it a near impossible task to say no to the only pieces of my life that are really ‘mine.’ I spend far too many hours doing things that I wish I didn’t have to do, so I reason that I should definitely be able to take this night to go dancing. I should definitely have that friend over. I should definitely go to that party. But what I’ve started to see is that my level of exhaustion ends up making those things less revitalizing, less fun, and much less positive pieces of my life. Instead I end up doing ‘fun’ things out of some weird obligation to myself and just feel utterly drained.

All of this is basically to say that I’m sorry if I haven’t been excited to see/talk to you–anyone. Writing on this blog is kind of that way too. At least here I can process some of what’s going on, but ultimately I remember that I have to close this window and make another to-do list for tomorrow and for Tuesday afternoon, after work and before my appointment with H&R Block…

Updates

Especially for those of you following who are my dad’s friends, you should know he isn’t doing well.

The last few days have been rough, and today is pretty scary. The hospice nurse yesterday told us that she thought he was ‘really close,’ and she qualified it as a month.

Now, I have learned in the last few months to take all timelines and close calls with a grain of salt. I’ve spent minimum of four nights thinking it was my dad’s last. But, each time it really could be, and I think it’s only fair to give everyone warning.

My mom is here right now, and that’s been immensely helpful. Last night we went out briefly and came back to find my dad had had trouble making it to the toilet and back, and there was evidence on the floor, his bed, and down his legs. We had him take a shower while we washed and changed the sheets and cleaned the floor. Afterwards, though, he was awake enough to talk to us a little, and he decided not to take the morphine continuously like the nurse had recommended.

Today, he says he isn’t in pain, but he is not capable of doing much of anything. He isn’t quite asleep, but he also isn’t able to talk or act awake. It’s unnerving, especially because we’ve reached the point where I don’t think there’s anything I can do for him at all. I can’t take away pain that isn’t there. I can suggest that he takes pills or eats or wears his oxygen, but the nurse yesterday pretty much told us that we should really only do what he wants to do. In theory, that would mean what makes him most comfortable. But It also can mean doing nothing. Which I find very odd.

I also think it’s interesting that nurses keep telling me that some things are more ‘for the families’ comfort’ than for the patients. Like feeding him and checking his oxygen, for instance. I guess it makes sense, and I know I’m not the only one who has a hard time letting go of these small things that I can do. But I think what scares me the most ight now is that my dad doesn’t know where he is in the process of dying. I’m afraid he’ll pass away and have thought til the very end that he had a lot more time. I’m afraid for him that there may have been things he wanted to do or say that he won’t get a chance to do.

Rough Seas Ahead

In the interest of sharing enough to be useful to anyone else who might someday be in my position, I’m going to give a little bit more of a health and lifestyle update on my dad.

Before we went into the hospital this last time (December 22), my dad was doing okay… He typically has a lot of upper neck and back pain that he categorizes as a dull consistent level 3 (on a scale from 1-10). We’d been using oxygen primarily during the day if his oxygen levels dipped below 90, and I’d been struggling to get him to eat and drink enough. But overall, he was able to move around and function on his own, and his pain was mostly managed with a regular dosage of acetaminophen (Tylenol). Oh, and the biggest thing–I’ve been successfully draining my dad’s chest catheter every night. I don’t even get woozy or anything. We usually get between 500 mL and 1 L, with the occasional day where we stop at 300 mL due to pain.

On that Friday, we got signed up with hospice, which meant our other therapy services ended. Our hospice nurse instructed us to try using oxygen essentially 24/7 and start on a small, regular dose of oxycodone for the back pain. Sunday, we started on that regimen, and my dad was very, very out of it. He ended up on the toilet, completely unable to stand or move without major assistance. We called our nurses, but they didn’t help much because no one was able to come to our area that day. My dad’s friend, Gene, came over and got my dad into his bed, but later on, my dad and I decided we should go to the ER. Being too weak to stand, my dad opted to call 911 to take him there, which was a bizarre experience all around. But once we got there, my dad was put on a bi-pap machine that helped get the excess CO2 out of his system, and they gave him lots of fluids (thank god). It’s been decided that oxydocone isn’t a good medication for my dad because it slows down breathing, and that’s pretty much exactly what we want to avoid.

I already mentioned that we left the hospital on Christmas eve and came home. The next couple days went pretty well. My dad’s feet swelling had gone down while he was in the hospital, and his energy level and appetite was better than I’d seen it in weeks. I was actually really surprised, and I started kind of wondering whether being on hospice was the best option. (Of course, don’t even get me started about the logistics of how we had to officially go off hospice to be in the hospital, then sign back up two days after we got home…)

But, following with the usual pattern, the good days didn’t last too long. Yesterday morning, I woke up and found my mom (who’s visiting this week) on the phone with the nurse and my dad in a lot of pain. Apparently, this was a new kind of pain, one located more in his lower chest on the left (and later the right) side. My mom had given him some of the morphine from the comfort kit in our fridge after being advised by the hospice nurse, and they were deciding about giving him another dose.

The whole day was tough for him, alternating between pain and super-sleepiness and constipation. We did our best, but hydration and nutrition were lost causes. By the end of the day, things seemed a bit better, but this morning the same problem reared its head again.

Essentially, it’s a day-by-day process. I go to sleep each night completely unsure what will meet me when I wake up. Sometimes I think we might have another year of this. Sometimes it seems like we may only have a few weeks. Starting to use the morphine feels like a big deal to me. It feels more real, more immediate… More like cancer.

Somehow I think I always assumed this would be a progressive decline, as if each day would be either the same or slightly worse than the last. But obviously that isn’t how it works, and the unpredictability is definitely one of the hardest parts. Unfortunately, no one can tell us what’s coming, and no one can tell us how long we have. I guess that’s all the more reason to embrace the good days when we have them.

On a related note, there’s no way I can get any other job right now, which is disappointing, but not completely unexpected. I also can’t make any commitments in stone–a very hard thing for me. I love planning, and I seriously value my word. If I say I can do something or be there, I will. So right now, I can’t make any promises. I can’t say anything for sure. It’s a test in patience, but it’s also testing a lot of what I used to value. It’s certainly the hardest test I’ve ever taken.

Meeting Goals

My dad signed onto a hospice program today, which is designed for people who have a short prognosis of 6 months or less. Technically, people go on and off hospice, so it’s not like you have to die in six months to qualify. But, there is something bizarre about having that strange assumed deadline. The good thing about hospice is that it focuses on comfort, which means less appointments, less newness, and hopefully for me, less pressure. I think one of the hardest things about the nurses who were visiting the last few weeks was that every time they offered suggestions or told us what we ought to be doing, I felt guilty. I felt like I just wasn’t doing enough. I still feel that way, on some level, and I have a sickening feeling that it will always be there no matter what I do. But at least with hospice, the ultimate goal seems to match a little more with what my dad’s capable of.

That’s of course where it gets a little complicated, though. Because I want to say that the goals match with my dad’s goals, but that may not be 100% true. My dad still wants to prolong his life (understandably), and I don’t think he’d categorize his primary goal as comfort. If someone told him he could suffer a bit more for a few weeks but then he’d live longer, he’d jump at the chance. The problem is that no one is saying that.

The doctors aren’t recommending chemotherapy or a heart surgery, and so far we’ve yet to hear any other treatment options that might be viable. Personally, I can’t see any treatment being useful until we can figure out this massive swallowing issue. (Or, if he’d agree to a feeding tube, which has yet to happen.) But, I think my dad is in a slightly more optimistic place as far as that goes. Which we could say is a good thing, mostly.

However, in realistic terms, I’m having a hard time seeing my dad actually living out the goals he claims to have. It’s like he says he wants to fight, but he still resists doing the exercises recommended for him, and it’s still a huge battle to get him to even attempt to eat or drink more. And don’t even get me started about weaning himself off of whiskey.

It’s like those people who say they want to be artists or runners or better cooks or what have you, and yet they never actually do it. They live under the premise that they have these goals, but they don’t practice their art. They don’t take a class to learn the skill. They don’t work at it, even when there are all sorts of ways to make tiny steps of progress.

Granted, getting healthy is a lot harder and a lot different than learning to cook. But I know my dad. And I know that old habits die hard. I don’t think it’s possible to do what he wants to do, and I don’t know what exactly to do about that.

But I guess for now, hospice is a step in the right direction.

I Understand Why Deer Freeze in Headlights

Most of the time, people use the expression ‘deer in the headlights’ to indicate someone being completely dumbfounded, confused, stuck. But have you ever stopped and thought about why deer get caught in that state? Why don’t the deer leap away from the oncoming vehicle? I think sometimes we even laugh about it. What kind of creature is dumb enough to be so easily incapacitated to a point of being unable to save their own life?

Well, tonight I was walking along the road near my house (don’t worry, there was a sidewalk, and I was never in any danger) and I began to understand what it must be like to be a deer frozen in front of an oncoming car. In the utter darkness, your eyes adjust, and you can see your surroundings just fine. I could tell where the sidewalk was, where my feet were, whether or not there were bushes or fences beside me. But as soon as a car approached, the headlights would flood my sight. For a full ten seconds, I could not see anything but bright yellow spots surrounded by complete blackness. No matter where I looked–even straight down at my feet–all I could see was black or bright. Talk about tunnel vision. I had to trust that I remembered where the sidewalk was and that I wasn’t going to fall off if I kept taking steps forward.

It was pretty disorienting, and I could see how easily this unique blindness could feel like the whole world had suddenly fallen away. If you can’t see anything outside of the bright light, how do you know there’s anywhere to jump? Surrounded by nothingness, it seems like you have no choice but to stay where you are, stay overwhelmed by the last thing that you know for sure exists–that light.

I think we’re all deer in the headlights sometimes. We get so overwhelmed by something that we literally can’t even see anything outside of it. Someone might tell us to leap out of the way. We might have an inkling that the sidewalk is still beneath our feet. But sometimes those little hints aren’t enough to convince us to move. Sometimes we find the beauty in the light and can’t let it go, even if we know it might kill us.