When stuff gets real

I knew the time would come when parts of my work life would bleed into my personal life. I cognitively knew the day was coming, but emotionally? I am so not prepared. Every day I can sit with patients and families, talking about death, talking about fears, talking about decline. So why is it, when faced with that same situation at home, I become a confused, tearful mess? Oh yeah, it’s because I’m human.

I can have empathy and sympathy for my fellow human beings. I can listen, support, encourage and challenge anyone who needs it. But I’m finding that now, I also need someone to do that for me. I need someone to help me navigate this dark path, looking for the eventual light. Simply, I need my own chaplain.

Now, I know I’m probably just overreacting at this point, with my mind pulled in a million directions at once, yet landing on no specific thing. I recognize that I want to get up and start doing, even though there is not much yet to do. Most of all, I know where all of this is leading, and I just want to fast forward through it all to the very end. I don’t want the suffering to happen. (Not suffering for me, but suffering for my loved one.)

This is when we are truly confronted with our beliefs about suffering and defeat. This is where we must decide how faithful we are to whatever greater power we believe in. This is where, in all practicality, the rubber meets the road. Will this faith carry me through or will I abandon it in a fit of anger and self-pity? Will I be able to reach out to my God with all of my rage, sadness, tears and questioning, or will I just turn away because, why would any god let something like this happen?

Over the past 24 hours, I have been praying…A LOT. My prayer is that God showers his favor on my loved one, however that favor may happen. Ask big, receive big. But I’m not naive enough to think that just because my loved one may still experience this decline and suffer, that God has not answered my prayers. God’s favor comes in many forms. My perception of suffering may be different from my loved one’s. Maybe the favor will be in that I will be more supportive and encouraging. Maybe the favor will be in this suffering being short-lived. In the end, I believe I know my loved one will be accepted into heaven – where there is no suffering at all. For now, I need to hold onto that faith. I need to trust that my God will see me through this to the light.

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Blissfully Unaware

How is it possible that the best part of my workday yesterday was with the patient whom, in many ways, is in the most unfortunate circumstances? But, I guess it’s all about perspective, and maybe her situation is not so unfortunate. After all, she is safe, cared for and seems to be happy.

See, I spent quite a bit of time with one of my patients in the memory care unit of a facility. She has Alzheimer’s Disease, and while otherwise healthy, cannot remember much of anything outside of a few things about her husband and son. She is relatively pleasant, generally has a smile for me, and is willing to engage in conversation…most of the time.

Yesterday was a wonderful adventure outside onto the patio, where the sun was shining and there was an abnormal spike in the temperature, causing it to be a lovely 78 degrees. There was a refreshing breeze as well, which made the totality of the opportunity too good to pass up. My patient no longer walks on her own, but she easily maneuvers in her wheelchair by “walking with her feet.” Sometimes, it was hard to keep up with her!

As I walked beside her, we talked about the sunshine, the breeze and the newly growing plants and flowers. All of these topics did not require any specific memories from her, so it was easy for her to respond to questions and to formulate opinions. Yes, that plant is beautiful. I love the fresh air. It is really bright out here. It is when I ventured into deeper topics that her conversational abilities shifted. She would begin sentences, but then not be able to finish. She would “cover” her lack of cognitive functioning with comments like, Oh, you know what that is.  Or, I never liked that because, you know… I didn’t press her to continue, but let the conversation flow where it did. She could not remember details of her life, such as if she ever rode a horse, or flown in a plane, or been on a boat. She could tell me the basic information required about how she was feeling, if she had to use the bathroom, or if her stomach hurt, but she could not offer anything deeper than the present here and now. More than that, she still did not recognize the pathway we were walking on, even though it was basically a circular one and we had made the trip around it no less than a half dozen times. When she asked, “Where does this path go?” I was struck that for the rest of us who have not lost any memory or cognitive functioning, we take so much for granted.

As I think about this visit, I am affected by all that it implies. There is so much we can lose in life, and so much we can also gain. What we each lose is different. For some, the loss is a limb, a breast, or the ability to walk. For others, the loss is a job, a home or even a child. Sadly, for many, loss is a combination of many things, including a limb, a job or a child. Which loss is the worst though? Obviously, any loss each of us suffers is the worst, because we are going through it. No one could possibly understand our personal loss, because that loss is not personal to them. One would think our empathy would increase for our fellow man in light of this knowledge, but somehow, our society has seen our empathy decrease, because we become selfish in the light of that loss. We refuse to see others and their understanding of what it is like to suffer a loss, and instead assume we ourselves need to be coddled and babied. No one could possibly understand, right?

Some say the loss happening with Alzheimer’s Disease is not the worst because, At least they are unaware of what is going on. On some level, that might be true.  But what happens when all cognitive abilities have ceased, and what is left is fear and uncertainty? Your limbs may be working, you can feed yourself, and you can still manage to go to the bathroom on your own, but you don’t recognize anyone, nothing is familiar and nothing makes sense? Would any of us want to be in that situation? Sometimes this notion of blissful unawareness is anything but blissful. And realistically, it is not a state of unawareness because we would be aware of one thing: fear. That’s not a state I want to be in for an extended period time.

Thankfully, my patient is not yet at that point. She still smiles, talks and can, for the most part, carry on a conversation. But I’m sure there are others in her residence who are not as lucky, and who are moving swiftly to the state of fear, losing all other abilities. My patient is my reminder that each of us lives in our own little bubble of the world, interacting with others minute by minute. I don’t want to continue to live in this bubble. I want to live in the larger world, seeing as much as I can and feeling as much as I can. And I want to recognize the differences between us as opportunities to come together and to get to know how we can be supportive of each other in our losses, whatever they may be. I don’t want to live my life blissfully unaware of those around me and their struggles. More often than not, seeing the struggles of another person brings perspective on how to get through the struggles in my own life. The bonus is, now I can be a comfort to someone who is coping with a loss of their own. So the best part of my day yesterday was realizing there is still hope for things to be better, one realization at a time.

A process is a process

Life’s lesson for today is simply this: Nothing is ever easy.

In my line of work, it stands to reason that things won’t be easy. The dying process is difficult, often messy, and something very few people look forward to. As someone supporting those in their final days, I am forever wondering how mine will play out. Not the faith part, nor the part where I end up in heaven, but the drudgery of dying. That is, assuming I do not die in a random accident of some sort or drop dead from a cardiac arrest, I imagine my decline will be typical that of millions of others: losing physical abilities, such as walking, toileting, eating, etc., and then eventually just becoming unresponsive and quietly taking my last breaths (with tons of pain medication on board of course!)

But amid all of that, there’s the practicality of it all. Where will I be when I die? What will my life’s circumstances be like at that time. Hell, we all think we’re going to be perfectly lucid, laughing and chatting it up with friends and family right before crawling into bed and falling into a peaceful sleep for all eternity. We’re all smoking something if we really believe that!

The dying process sucks!  It’s hard to do – both for the patient and for those who care about them. There should be dignity in death, just like there is dignity in beginning life. Yet, far too often, people die alone at home or in nursing homes, no family or friends visiting and only a random nurse checking on them every few hours. How many people are “discovered” to be dead, because no one had eyes on them at the time of their death?

I suppose it begs the question: If we (those of us who practice a faith) know where we are going to be in the end, does it matter the process of getting there? If our time in heaven is devoid of pain and suffering, do we remember the suffering we experienced on earth? And if we do remember it, isn’t that itself a form of suffering, which wouldn’t exist in heaven? Which means why or how could we possibly remember it?  Whoa, that’s a circle of chaos I don’t have the mental energy to contemplate at 9:30pm on a weeknight.

I can’t imagine we get to heaven any quicker if someone is by our bedside as we are dying and holding our hands as we breathe our last. So maybe the dying process isn’t so much for the person dying as it is for the people around them still living. For a good many of the people I have been with who are actively dying, they seem to be unaware of their surroundings and what is happening – even with their own behaviors. It is those around them who feel uncomfortable and talk about the person “suffering.” It really seems as if everyone else feels they are suffering, and the dying person is comfortable. That said, my lucid self has no desire to be actively dying, restless, in pain, and having difficulty breathing. (Again – more drugs please!)

I don’t know where I’m going with all of this. These are things I think about as I am spending time with my patients, specifically those who are actively dying and are not responsive. The dying process sucks, and our society seems to be trying to do everything it can to avoid it. (To which I laugh heartily because there hasn’t been anyone who’s avoided it yet!) I want to embrace it, whenever the process begins for me. I want to feel the emotions of knowing my loved ones will be left without me – the sadness and fear that brings, but I also want the overwhelming feeling of knowing I will be accepted into heaven and made whole again. That is the part that doesn’t suck, and that is the part that I try to show my patients every day.

Frustration and Outrage

You know what really grinds my gears? Wanting to go off about something, but knowing there’s no point because those on the receiving end of such outbursts will just not get it. Such was the case yesterday when, as I was driving from one patient to the next, I find myself behind a black SUV with temporary tags. This wasn’t a brand new vehicle, mind you, just one that seemed recently purchased as a used car. Nevertheless, I am behind said vehicle at a stop light, when all of a sudden, the passenger side window of the SUV rolls down and out flies a carryout bag and drink cup. Before I could stop myself, I’m screaming, “What the hell?!?”

The light changes and we continue on our way, me fuming, and the occupants of the SUV completely unaware of my rage. Now, I have to admit, there were more choice words shouted out in my car, as well as contemplation of widely known hand gestures, but I tempered myself before that literally got out of hand. As I zoomed around them in order to physically put them out of sight and hopefully out of mind, the trash-thrower-in-question just stared at me. We came to stop again, side-by-side at the next stop light, and thankfully, they then turned down another street.

I realized that, for the most part, my world is fairly simple. I choose to see my world as a positive one, where everyone is essentially good, until it is proven otherwise. I want to recognize the beauty God has created, despite the negativity constantly displayed both in person and on tv/movies/online. I guess that’s why I am so outraged when I see blatant stupidity rear it’s ugly head right in front of me. It causes me to ask myself: Am I in denial about the reality around me? Is the world actually a crappy place to be and I just choose to not see it? Do I have a right to be angry and outraged when I see something like this, or should I just resign myself to the fact that this is the world we live in and I need to get used to it?

So I’m interested in your thoughts. How do you choose to see the world – in a positive light with the occasional negative segment thrown in, or, that it’s all going down the drain and you’re just keeping your head down to get through it? When we ask ourselves these questions, I think it causes us to go deeper in search of our meaning on earth. What are we here to do? For those of us with a faith practice, what has God/our higher power placed us here to accomplish and/or be? I refuse to believe I am not supposed to see the good in others and to continue to try to make this world a better place using the gifts God has placed within me.

BUT…at present I do not have a frame of reference for what I am supposed to do when that goodness is challenged and the negativity appears. Biblical scripture tells us, “Whoever does not receive you, nor heed your words, as you go out of that house or that city, shake the dust off your feet,” (Matthew 10:14). These are words I do practice, but again, I question how I am supposed to feel in the wake leaving these situations. Is it right to be outraged? Should I shake my fist at the defiance of common decency and respect for what is right and good? More importantly, who am I to assume that I alone know what is right and good?

There is so much that is wrong with our world…from hunger, to disease, to terrorism, to abuse…the list goes on. I’ve often felt that, no matter how long we are on this earth, those things will continue and we will never eradicate them. Yet, I feel we must constantly try. I choose to fight for a better world, one that I can be proud of and one I know God had created for us. Sometimes my fight is in the form of doing for others and living up to my defining belief that “Whatever you did for the least of these, my brothers and sisters, you did for me,” (Matthew 25:40). And, sometimes it is in the form of outrage and venting on social media. Neither are perfect in their results, I know. But hell, if it all was perfect, I wouldn’t have anything to writer about, would I?

The Golden Ticket

I spent all day yesterday seeing patients, having conversation, listening to patients and families. But in the back of my mind throughout the day, I was thinking about my plans for the evening. Having children of high school age means personal time is spent ferrying them to their various activities and school obligations. With the springtime comes the spring musical the high school performs. This year, my son will participate in the musical, Sister Act. You know, the one about the nun who hides out in the convent to escape her mob boss boyfriend? If that doesn’t ring any bells, it’s the one based on the movie with Whoopie Goldberg, and she ends up transforming the nuns into a zippy choir. Anyway, that’s what our local high school has decided to present. I’m looking forward to see it, and my son is excited to be involved.

This weekend, though, both my niece an nephew are performing in their high school music, Willy Wonka, The Musical. Yes, it’s Willy Wonka and the Chocolate Factory come to stage, with all the bright colors and crazy Oompa Loompas. I was looking forward to seeing how it all came together, and I was not disappointed. There were a few technical glitches, as expected with a high school performance, but overall the kids did a wonderful job.

As I sat listening to song after song, watching my niece and nephew give it their all in the performance, I was struck by the innocence of it all. They were blissfully unaware of the difficulties life brings, the challenges they will face, and the eventuality of their own deaths. For them, their life is now, here, in the moment. They have no reason to worry about anything major, especially not while performing for an attentive audience.

Were we all like that at one time? And if we were, when did that feeling of blissful ignorance leave us? When did the day to day drudgery begin to overtake us and the weight of the world begin to matter? It seems, in my humble opinion, that we spend the first part of our lives just enjoying the beauty of the world and all God has provided for us. We spend our early and middle adulthood trying out best to keep our heads down and just get through each day without any crises. Then we come to the later years and we somehow come back full circle to a carefree “whatever happens, happens,” existence (notwithstanding the very end of life difficulties and actively dying). You know what I’m talking about…the zero filter comments that start with, “When I was your age…” and usually end with some derogatory comment about clothing that’s too tight or hair that’s too long, or attitude that isn’t respectful. Either that or the regular offering of opinions not asked for about things that are not their business. I’m sure we have all been on the receiving end of an older person’s “wisdom,” when they decide to tell you you’re not going to succeed at that job, or that new girlfriend is from the wrong side of the tracks. They don’t care what they say, because they have nothing to lose. They have lived their lives and nothing they say or do is going to turn back the clock and add years back to them.

So there I sit, listening to the Candy Man song, which asks, Who can make the sunrise, sprinkle it with dew, cover it in chocolate and a miracle or two, the Candy Man can. I see the bright young faces and dancing on the stage. I realize how wonderfully apropos this musical is for these kids. It’s all about sunrises, dew, chocolate and miracles – the best things life can give. And the Candy Man in our lives is the God who showers us with these blessings. How wonderful that we start our lives with carefree exuberance and at life’s end come back to another carefree existence. The true miracle though, is if we could learn how to make the middle just as enjoyable and carefree as the beginning and the end. That would be the veritable Golden Ticket Charlie Bucket found in the the musical. What a blessing that would be.

Final words and frosting

I bet there have been times when you’ve started your day thinking, Today’s going to be good, a nice, normal dayBut then before you know it, it’s gone sideways six ways from Sunday and you’re left shaking your head, wondering what the heck happened. Today was almost that kind of day for me. And I say almost, because in looking back on it, there wasn’t anything bad about it, it just wasn’t the day I was expecting. There were no hair pin curves or detours, but I found myself in somewhat uncharted territory. As days go, I was not expecting these types of conversations. But really, I am a chaplain, so why should I assume things will be normal?

Today I spent time with a patient who wanted to write her eulogy. Now, this isn’t really that uncommon, but more often than not hospice patients are not generally cognitively able to formulate something that coherent on their own. Or, they are cognitively able, but lack the physical energy to write things down or dictate their wishes. Most of us are probably familiar with a eulogy in the sense it is a pastor or close family member speaking at a funeral service. In my lifetime, I have not yet witnessed a eulogy that was actually written by the deceased person, so this was a first for me in getting to speak to the person whom the eulogy was about, and assist in putting their life down in words.

I didn’t know what I was in for, and boy was it ever interesting! Consider it – I mean, really stop and think about it – if you had to encompass your entire life into a 10-15 minutes speech, what would you say? What parts would you include? More importantly, would you be honest or would you fudge it a little to make your life seem better than it was? As I listened to my patient talk about various parts of her life, she would pepper her statements with “But I really don’t want that included,” or, “No one will understand that, so leave that out.” Yet, what she was saying was the very essence of who she is as a person and explained a lot about her. Again, it drew me to think about what I would say.

In the end, I had a bevy of information from which to construct a eulogy, and one I hope my patient is pleased with. I was struck the most by how, despite all the things she said and all of the things she decided she did not want to include, the overall theme of what she was trying to say was not one of self importance. Amidst the funny stories, quaint memories and milestones reached, I heard my patient saying loudly and clearly, My life was worth living. My patient is desperate to show others that living matters, and life is to be enjoyed.

All of this was, of course, contrasted by the next patient visit. This visit was unique in that the man was a hunter, and mounted on his wall were three extremely large deer heads. I was glad to hear he hadn’t named them, but sitting mere feet away from a 10 point, 6 point and 9 point buck, I was slightly thrown off. Believe it or not though, this was not the part of the visit that was the most intriguing. Now, I am used to walking into a different living room every few days, and when that happens, I am acutely aware of my surroundings (hence the immediate noticing of the deer heads). But I also have no idea what types of people I will be encountering when I see new patients.

So as I am introducing myself to my new patient and his family, his wife shouts from across the room, “So, what parish are you from?” I wasn’t startled by this, as it is a common question. My response is always the same, and I tell her that chaplains with our organizations are non-denominational, and do not emphasize one faith over another. She did not seem mollified by this answer, and instead narrowed her eyes as she watched me. The visit continued and as I sat next to my patient and attempted to get to know him, his wife continued with her cross examination of me.

For the next several minutes, I was interrogated about why I was not practicing her religion and faith. I explained to her my faith of choice (which is not something I had to offer, but chose to), and she shook her head saying, “Isn’t that kind of like having the cake without the frosting?” So if I understood her correctly, she’s telling me that my faith is fine (the cake), but it’s not the best because it falls short of the faith she practices (the cake AND frosting). O…K….moving on. Let’s just say I sort of cocked my head a bit in response, and then turned and began talking to my patient again. Oy vey. The rest of my conversation went extremely well, and the Mrs. decided she would leave the room, rather than stay and listen. Did I pass whatever test she had given me? I don’t think I’ll ever know. I do know that I learned a lot about hunting today – dear, moose and bear. I was willing to go wherever the patient wanted to go in his visit, and I was just glad it no longer involved someone else questioning my faith.

The day eventually came to a close and I was glad for it. As I sit here typing and casually watching Jurassic Park (my husband’s pick, not mine, but I enjoy the movie), I have been pausing to think again about what my eulogy will say. And after that last patient visit, have now pondered how my faith practice will impact that life review. What do I want to say, and what image of me do I want people to retain? Hopefully I will have many more years to consider it, but if I’ve learned anything in my work, it is that I should not count on there always being a tomorrow. Shalom.

Just a Little Off

So lately I have been feeling just…off. I go to work, see patients, talk with colleagues, come home and spend time with my family…yet I still feel like something is off. I just can’t put my finger on why I have this feeling. For the most part I feel a bit overwhelmed at my one job, and completely underwhelmed at my other job. I know it’s not the patients, because I never know from moment to moment what is going to happen with them. Conversations are generally always interesting and fruitful, at least from my perspective.

I think I feel the most “off” when I’m working at the underwhelming job. The other day I sat at my desk for the majority of the day feeling like I should be doing something more, but there was literally nothing more I could be doing. I enjoy the job, and it allows me to put my analytical and technical skills to use, but it’s not very challenging. When in training for this position, my predecessor had led me to believe there was more work than could realistically be completed in the time allowed, which caused her to often “donate” her time. Once I was ensconced in the job, I quickly realized that, while there was a lot of work to do from a certain perspective, the processes in place for completing said work were…antiquated. I quickly adjusted the work flow to be more efficient, and the result was that I now have A LOT more time on my hands. (In other words, I’ve cleaned everything in sight, reorganized drawers, reorganized bulletin boards…you get the picture.)

That said, this job is a much needed break from seeing patients and allows me to decompress a bit. But what is this “off” feeling? Do I have to constantly be challenged, or involved in something complex in order to feel useful and fulfilled? Or is the environment of said underwhelming job the culprit of this feeling? There is definitely office drama (remember the grouchy coworker?), and I tend to be the person everyone comes to with complaints, both about work and coworkers. Some days I feel like I should hang my Psychiatrist placard out like Lucy from the Peanuts cartoon.

As I sit here writing it out, the thought crosses my mind that, because God has shown me what I should be doing with my life and service to Him (chaplain), anything else will continue to be underwhelming. No matter how much I enjoy office stuff – and I have to admit, creating a spreadsheet or PowerPoint is something I find geekishly cool – my true calling is to be a support to patients, families and God’s children in general. Despite this “off” feeling, maybe I need to focus on the good I am doing overall. Maybe the down time I have in this underwhelming job is allowing me to focus more clearly on the overwhelming job, and giving me the rest I need in order to return to it. Maybe it’s not so much an “off” feeling as it is one of I miss what God is asking me to do. So I guess I will say a prayer tonight for wisdom. I know God doesn’t always answer questions clearly in claps of thunder or with neon signs, but if I don’t ask for it, why would I expect to get it? I hope all of you find a way to do the same. Ask big and receive big. Our God can certainly handle it.