I stared numbly at the words that my mind refused to comprehend. Missing man, thirty, found dead in the creek wearing only his underwear. He was just a kid. And suddenly I was filled with such a moment of fury and heartbreak that it took all that I had in me not to pick up the nearest item and throw it through the window. HE WAS JUST A KID!
People who make snap judgements will look at the grainy photo that went along with the article and make false and hurtful assumptions. Probably another junkie. One less drain on the system. He must have been doing something…and then dismiss it from their minds. In that moment I was filled with a rage that such people cast down opinions from the lofty heights of their moral smugness without knowing the first thing about the person or his story.
He was one of my residents several years ago. I remember how shocked I was that someone in his early twenties and physically healthy landed in an assisted living facility. His roommate was more than fifty years older than him and unwell. I thought that there must be a better place for him, more suited to his needs. A safe place where he can be around people his own age with similar challenges and make friends and have a better quality of life. I didn’t consider at the time that deep cuts to the mental health care budget robbed him and many others like him of a better option. There are no long term treatment centers for those living with mental disabilities. He never complained, though. Never once did I hear him say a negative thing about anyone or anything.
He had the mind of a child, but he also had the heart of a child. He was a big guy. To look at him, you wouldn’t think he was so gentle a spirit. You wouldn’t know that he was the first one to help a feisty old lady get down the hall in her wheelchair; just about the only person she would LET help her. You wouldn’t know that he’d give the shirt off his back to a friend. I used to worry about him being taken advantage of by some of my other residents until I realized how much he got from being able to help another. He was kind and he was lonely but he had a good sense of humor and the moments I could coax a smile from him reminded me why I was in this field.
And then one day he was gone. People move from facility to facility or back home to their family with little to no warning. I’ve gotten used to quick adjustments. Old residents move and new ones show up just as suddenly. I didn’t see him for a few years after that, but everyone who has ever been in my care has left an imprint in my life and every now and then I would wonder how he was getting along. Then one day last year, I saw for myself.
On sat nights, I volunteer at a behavioral health center. And there he was! In the support group! Now, the meeting I bring in is completely voluntary so I always feel hopeful when the clients in that short term center choose to come to it. I’m able to offer some numbers and resources that can get them on a path to wellness at least. I feel like I can bring them a little hope, but if I am being honest with myself, I could tell he was not looking so good. He was every bit as kind in that setting as he was when he was living at the facility… but his smile seemed haunted, his eyes looked sad and he appeared way too thin. After the meeting, I gave him a gigantic hug and told him to take care of himself. To talk to his case manager. That I loved him to pieces and that everybody missed him. He smiled and waved as he walked back to his unit. I wish I had taken five minutes to get him some phone numbers. He didn’t ask for any and maybe he wouldn’t have used them if I had, but I wish I tried.
That was the last time I saw him alive.
I want to tell him I’m sorry. I am so sorry that you died in such a way. You deserved so much better. I’m sorry that people failed you and had failed you most of your life. I’m sorry you weren’t protected the way you should have been or encouraged and given the opportunities that so many take for granted. I’m sorry I rushed out after that meeting rather than stay and talk with you for a few more minutes. I’m sorry that cuts to mental health funding and Goddamn politics played a part in the untimely death of such a good kid. I’m sorry there was no one to whom you could reach out and that you fell through the cracks of the systems designed to protect you time and time and time again. I hope part of you knew that you were not alone. I will not forget you, my friend.
The subject of death comes up often in this line of work. On this blog, Alice and May have visited it on more than one occasion. They have shared how they experienced losing residents they’ve known and cared for, and how they cope with the deep sense of personal loss. These experiences and feelings are echoed every single day in the hallways of LTC facilities and on social media. Death and loss are realities that all caregivers have to deal with at some point. For some, it becomes too much to bear and they leave the field.
Death is also at the heart of the negative public perception of nursing homes. The term itself, nursing home, evokes images of forsaken and forgotten souls, a place where we “stick” people when they are no longer of any use and we don’t want to be bothered with what’s left of them. That even facilities that offer good care and where the residents seem content, are still essentially gilded human warehouses, nice places to go and wait for the inevitable. Abandon hope all ye who enter here.
Those of us who work in direct care know that the reality is not quite that dreary. While we can be the staunchest critics of the nursing home industry – because of what we know about the very real problems – we also know that these places are and can be so much more than just human warehouses. We know that not everyone who enters them is prepared to simply submit and waste away. That sometimes people who have experienced severe neglect on the outside can actually rally after admission. Good medical care, proper diet, therapy, and a sense of community and belonging, can go a long way in restoring a sense of wellbeing and hope. That yes, even here, life goes on.
While good care is essential, it does not address the deeper question of a meaningful existence. Here, in the final stages of life, where comfort is often regarded as the highest value and the will to live runs on sheer momentum, the question arises – and I’m going to be blunt – why bother? Why bother to go on when you no longer feel productive or useful? Why bother when you feel as though you’ve become nothing but a burden? Why bother when you’ve lost so much that you hold so dear? And the toughest question of all: why bother when the end result is going to be the same no matter what you do?
Good caregivers do all they can to address the “why bothers?” Through our awareness of our elders as individuals and by engaging them emotionally, we assure them that if nothing else, they still matter because they matter to us. We can’t give them back everything and we can’t reach everyone, but there are opportunities to make a real difference and we morally obligated to make the most of them.
Still, there is that nagging reality always present in background, the sense of doom and meaninglessness associated with our mortality.
But we are not powerless. First, we have to reject the conventional view of aging: that the final stage of life is less meaningful than everything that comes before it. We need to embrace the idea that we can change, grow and develop right up to the end. And we must stop downgrading the intrinsic value of moments that are experienced during this stage of life. Even to the end, we can retain our capacity to be surprised or fascinated or enthralled, and to value the comic absurdity of life. And we can still lose ourselves in these moments and share them with those around us without reference to some ultimate meaning.
Second, we have to rebel against death itself. Not against its reality, but against its hold on us; against the idea that our fate to die must inform our actions and constrain how we experience life. We need not be held captive to the ego’s revulsion to nonexistence. By liberating ourselves from death’s grip on our being, we are giving ourselves permission to really live.
For our elders, it’s not enough that we tell them that life is still worth living. Instead, as caregivers we must discover what that means to them, in the most specific, practical terms. We must facilitate and share with them, when we can, those things they find meaningful. Each time we do this, we are joining them in their rebellion against death and boldly answer the question “why bother?” And we celebrate with them one more victory in life.
She was one of the more”challenging” residents. I met her eight years ago, when I first entered the weird wild world of Long Term Care as a housekeeper. Whatever preconceived notions I may have held about nursing homes and assisted living facilities were quickly smashed as I moved from room to room, mop in hand.
I had heard rumors about the lady in room 207. She was the only resident who was allowed a pet, a mean little dog that would snap at strangers and bark CONSTANTLY. I was surprised that this was allowed. The caregivers explained that she had worn the administrator down by sheer force of will. She refused to give up her dog and management refused to give up the money that came from her living there. They turned a blind eye until the dog snipped another resident and then, with very little warning, they kicked her and her little dog out.
Fast forward three years: one whistle blowing experience, two owners and three administrators later, I was back in that same facility, this time as a caregiver with much more knowledge and experience in how the system works…there she was! Back again, with all her feistiness but without her dog.
“I remember you!”, she snapped, almost spitting the words at me.
“I remember you too”. I looked through the ADL notes: Refused shower. Refused shower. Refused shower. Two weeks straight of shower refusals.
I had just started working that particular hall…it was the assignment that no one wanted. At first, I was intimidated. Having worked mainly on the memory care unit, the idea of working with the combination of physical and mental illnesses in this group was daunting. Still, I liked a challenge and seeing a familiar face made it more comfortable. I walked into her room, sat on the edge of her bed and asked her the first question that popped in my head,
“So why do you hate showers?” She looked up in surprise as if the question had never occurred to her. She thought about that for a moment.
“I don’t”, she mumbled. Ok. We’re getting somewhere.
“I just don’t like being told what to do.”…ahhhh. That I understood. So I explained about shower schedules. She could not care less. I cajoled and pleaded and attempted to redirect to no avail. Finally, I settled for bribery. I would buy her a Dr. Pepper. With that, she cheerfully followed me to the bathroom.
She was a force of nature; a fighter who had little use for most people. Over the years, the bond we formed early on over a Dr. Pepper deepened. I knew it was she who pulled the fire alarm during a rain shower, forcing us to evacuate the entire facility when she felt she didn’t get her coffee in a timely manner. I hid my amusement as I firmly explained that this was completely unacceptable, though I never reported her for it. I didn’t have the heart. The time she snuck an entire cup of soap and dumped it in the whirlpool causing a flood of bubbles that spread from the bathroom to the hallway, the times she would “borrow” sodas from her roommate causing veritable riots…she was legendary.
When I left the facility for a job in private care, saying goodbye to her was one of the most painful moments. I told her I loved her, promised to visit and told her to not terrify the new girls. Trust was so hard for her and I knew that she felt abandoned. She told me as much. I made certain to visit as often as I could, but life gets busy. Between my new job, writing, recovery and volunteering, my visits slowed down. There are only so many hours in a day and I kept telling myself I’d visit after New Orleans, after I settle back into work, tomorrow, next week…
I got the call from a friend last week. It was unexpected. She had been sliding downhill slowly but she went into the hospital and died suddenly.
Loss is a part of our job. It isn’t easy but without an acceptance of that fact, it would be impossible for me to continue in this field. My way of coping is to remember each and every one of my folks and the impact that they made on my life. I get attached and that is what works for me. Others set strong boundaries and they are equally effective in this field. There is no one way to cope with the more difficult aspects of our work. I have found it to be an intensely personal and subjective matter. There is no wrong way to find peace in grief. Still, this one hit me hard. I thought we would have more time.
I went to visit the facility shortly afterwards. I had made the decision that any time wasted feeling guilty would be much better spent visiting my former residents. I walked in and greeted everyone and it was like coming home. Residents and staff embraced me and as I walked the halls, I listened. Everyone had a story to share about my friend in room 207. They spoke of her spirit and her fight. Funny, touching stories that spoke to her courage and refusal to simply roll over and play dead. I was filled with a sudden peace and deep gratitude. She may be gone, but it was clear that in this facility her legend will never die.
Worst case scenarios. I’m surrounded by worst case scenarios all the time…I was sitting on my porch trying to get a handle on my emotions. I was in a slump. Financially strapped, but really that was nothing new. Single. No dog. Big coffee stain on my carpet. The thing is, all of that has been true for a while and it’s never bothered me before, so why the sudden case of the dark and twisties?
I sometimes forget that caregiving takes its toll. Thirty-six people who were in my care at one point have died. I’d go to visit only to find they have passed. I understand that death is the ultimate conclusion to life and it is part of the gig but that doesn’t make it easy. Every one of them left an impact on my life.
So much of caregiving involves making the most of what is lost. We help our clients live with losses we can’t imagine for ourselves. A woman has a massive stroke in the prime of her life, a young man is hit by a car crossing the street and suffers major brain damage, Huntington’s, Parkinson’s, Alzheimer’s, people living with addiction, people living with mental disorders, all of whom have had their entire lives redefined by a disorder of some kind or simply aging. I get to know these people. It’s impossible not to form relationships when we work so closely together. It’s the two of us for twelve hours. When I worked in facilities it was the same. Sure, there were more residents, but it was the same people every shift. As caregivers, we know these people in a way that no one else does and that means we feel their losses like no one else does.
On a daily basis in this field, we face our own mortality; our “what could be’s”, our own potential cataclysmic moments. Maybe it’s because my fortieth birthday is fast approaching, maybe it’s because private care allows more time and awareness for those thoughts to creep in, maybe it’s because I danced on the line of my own doom many moons ago, but I have been keenly aware of my own powerlessness lately. I am powerless over a stroke. Can’t fix it. Can’t take away her pain. I am powerless over the aging process and other people’s choices. I am also powerless over my own future potential cataclysmic moments.
As I sat on that porch, tightly wrapped in the cocoon of my unreasonable fear, it occurred to me that my client went to bed over the moon because she was able to get a hair appointment. This woman in chronic pain with very limited mobility on her left side is SUPER EXCITED because she is going to have her hair bleached to the right shade of blonde, a four hour experience that you couldn’t pay me to endure. She takes her hair very seriously. She always has. She still does. There is something so quietly courageous about that; those small acts in defiance of pain. It’s a refusal to be owned by the hand one is dealt. They learn how to play a new hand instead. They adapt. WE adapt. And slowly I regained my perspective. I even learned something new. I am not surrounded by “worse case scenarios”. I’m surrounded by people who defy the odds in a million ways every day; people who put one foot in front of the other, no matter what, and who teach me to do the same.
The longer I’m in this field, the more certain I am that my main job requirement is to improve the quality of life for those under my care. Yes, as caregivers, we are the eyes and ears for the doctors and nurses. It is true that many times we are the first to notice when those for whom we care are “off,” but often our hands are tied after reporting changes and passing along observations. It used to frustrate me to no end, that feeling of powerlessness; that feeling of being dismissed with a pat on the head, as if my concerns were not valid. It didn’t occur to me that perhaps my point of view was askew.
After so many years in this gig, death doesn’t bother me nearly as much as it once did. Oh I still mourn the losses, but I take great peace from remembering the moments; the real interactions and shared memories that make the caregiver/client relationship so unique. This is not a career for the squeamish and there is something quite beautiful about guiding and supporting another human being through the twilight. No, it’s not the inevitable setting of the sun that scares me. It is the horrible quality of life that our elderly and sick are often forced to experience at the end of their days.
Maybe it’s because this time, I was lucky enough to be a part of something different that this point was driven home. I was able to witness a woman surrounded by love and family who were willing to do whatever was necessary to keep her comfortable and active. I saw what that sort of support gave her in a very short time. I watched as she thrived in that environment and when she died, it was quickly, with her faculties intact, after spending a beautiful day with her family.
It was in stark contrast to my experiences in a facility. I think facilities can create a sort of Stockholm syndrome: You know it’s not a good environment in which to live or work, but you adapt because it’s what you know. You tell yourself there are worse places. At least it’s a job. At least you can be there for the residents. It’s not so bad. Deep down, you know it is though. It’s no way for anyone to live. At least in the facilities for which I’ve worked.
That got me thinking. When I strip our job description to the bare bones, the meat and potatoes, it comes down this simple task: improve the quality of life for those around us. Depending on the framework in which we are employed, this can be difficult. Simple and easy are not necessarily synonyms. It’s a simple concept, but at times it’s an incredibly daunting task. Especially when you consider the system in which we work. Still, for me, realizing that truth has brought me great peace. It simplifies it. I don’t have to fix, save, diagnose, manipulate, or perpetuate any negativity. My job is to make life as positive as possible and to preserve the dignity as much as possible for those in my care. There are many ways to accomplish this and I hope to explore those ideas in future posts.
Loud voices dragged me kicking and screaming from my sleep; the first solid night’s rest that I’d had in a month. A peaceful sleep is the one thing I’ve got left and they’re hell bent on robbing me of even that.
My muscles groaned as I rolled over to look at my clock. 7:00 AM. The day people were coming in. I wondered briefly who was on shift before deciding that it didn’t really matter.
“Same shit. Different day. That’s the story of my life these past three years, since I lost my wife. Since I lost my everything.” I thought as I closed my eyes, hoping for twenty more minutes of peace. No such luck.
“HEYYYYYYY BUDDY!!!! Good morning! Today is going to be AWESOME. You and I are going to hit the ground RUNNING. The world won’t know what HIT it! It’s time to rock and roll!”…Great. It’s the weird one. She must have had a triple espresso today. I squeezed my eyes shut as she opened the blinds, knowing damn well it wasn’t going to fool her.
“I know you’re awake, pal.” Sigh.
“It is too damn early for you,” I grumbled. She raised her eyebrow, made sure the door was closed and took out her phone.
“Maybe. But it’s NEVER too early for Hendrix,” she declared as the first strains of All Along the Watchtower filtered through my ears. Well, I couldn’t argue with her taste in music. I watched as she jumped up on the empty bed (They haven’t paired me with a nut job roommate yet, thank God for small favors) and began to dramatically sing along. Badly. You gotta admire her creativity.
“Get DOWN, you fool, before you get yourself fired. FINE. Give me twenty minutes to get my bearings and I’ll be up there for breakfast.”
“Deal!” She leaped down and out the door she went. I try to keep in mind that none of this is her fault. She’s one of the good ones. In another life, she could have been my daughter or my friend, but in this reality, she’s another person telling me what to do, even if she does think it’s for my own good.
I headed into my cramped bathroom, pulled on my robe and splashed water on my face, hoping to clear away the residual fog from last night’s medication cocktail. I remember when drugs used to be fun. If only they knew the life I used to live. Before I got married. Had kids. Got sick. Lost my wife. Lost my kids. Lost my health. Lost…well, just lost.
“When did you become an old man?” I asked my reflection. If I squinted my eyes and looked through the wrinkles, I could see remnants of the man I once was. A ghost from the past, hardly relevant in today’s world, where speed is what counts and the old and sick relics are left; carrion for the vultures. I shook my head and tried to shake that imagery as I headed out the door of my sanctuary into the noisy, overly bright hall.
“Get your walker!” There she was again, somehow able to see through the enormous stack of towels she was carrying as she ran down the hall.
“No running in the hall!” I retorted.
“Fair enough!” She stopped abruptly, tripping over her shoelaces and the stack of towels flew in every direction. I heard her curse under her breath and couldn’t stop myself from laughing. She’s a pain in the ass, but she does make the hall more entertaining.
“Maybe YOU should get a walker,” I told her. She looked at me ruefully.
“First point goes to you. Well played, sir,” she said as she picked up the towels. It’s a little game we have. Who can be the biggest smart ass. I usually win. With age comes wisdom.
“Ah come on, kid. Escort an old man to breakfast. Maybe a cup of that decaf crap you call coffee would do me some good.”
Breakfast. Rubbery, slightly cold eggs. Grits. Bacon, always underdone. Chaos and noise, everyone demanding everything. Nothing peaceful about it. After breakfast, more meds, then a shower. The same. Every day is the same Goddamn day. I just wanted to escape to my room. I want to lay down and not be bothered.
We are the invisible people. Congestive heart failure in room 102. Diabetic in 104. COPD, TED hose, two person transfer. We are known by our needs and diagnosis rather than our names and stories. Hello. My name is stage 3 lung cancer. My name is do not resuscitate. My name is dying.
I laid down and pulled the cheap, rough comforter up to my chin. You would think they would know that we old people are cold natured and offer thicker blankets. I debated pulling the call bell, but I wanted to be alone more than I wanted an extra blanket. I was in pain. Always in pain. I’d gotten used to it, like an old familiar friend that you never wanted in the first place but after a while, you can’t imagine life without.
I was awoken from my uneasy rest by a soft, persistent tapping on my door. Jesus, what do they want now?
“WHAT?!” I shouted. She walked in; the weird one, the annoyingly optimistic one.
“The new activity lady wants to know if you want to play bingo.”
“Do I strike you as a bingo player?” I snapped.
“No. But she insisted that I come and ask anyway. Besides, the winner gets a prize.”
“Trip to Vegas?”
“No, a lovely gardening hat with plastic flowers for the ladies and a t-shirt that reads gone fishin’ for the guys,” she paused, “…I didn’t say they were GOOD prizes.” Something must have cracked in me then. I started laughing. The ABSURDITY of it all; not just the prizes but the very idea that THIS was how I was going to spend the end of my days…in a loony bin being told when to eat and playing bingo for the most ridiculous prizes possible, being visited by my kids maybe one more time before I shuffle off to whatever comes next because it was “too hard” for them to see me like this…it was…it was OBSCENE. Suddenly, to my horror, my laughter turned to tears. I was WEEPING for Godsake. Tears and snot flowed freely down my face as I took deep sobbing breaths and tried to regain control.
The weird girl handed me a tissue and sat quietly on the empty bed next to me. She let me cry. At no point did she try to calm me or convince me that everything would be fine. She did not minimize my pain. She just sat there and waited. In that moment, I hated and loved her. I hated that she was witnessing my fear and weakness. I hated her for seeing my pain, but I loved her for those very same reasons too; for seeing me in a moment of raw, uncontrollable honesty.
“I just miss everything so much. I miss my wife. I miss my kids. I miss…myself. I go over it in my head, what could I have done differently. What could I have done better? I don’t want to die alone.” By then I was whispering, afraid that someone else would hear; afraid she would judge me…afraid. After a long moment of silence, she came over tentatively reached for my hand and said,
“I am so sorry that you’re hurting. I can’t imagine the strength it must take for you to face the day and I’m sorry that your kids are missing the opportunity to see how brave their dad really is. It’s a decision they will come to regret, I imagine. I can’t do much to erase your pain, but I will make you a promise: You will never be alone. I will walk with you step by step; the good days and the bad. You aren’t alone. You’re my friend, whether you like it or not.” She squeezed my hand gently and headed toward the door. There were call bells ringing and she had to go, but I knew she would be back. For the first time, I realized that I took a lot of comfort from that.
“Hey, kid…thanks”. She smiled back at me.
“Anytime. Besides, I can’t let you win the smart ass award. I’ve got some catching up to do!” she said as she left the room, quietly closing the door behind her.
“In your dreams, kid,” I thought, smiling to myself as I slowly drifted back to sleep.
After work, I’m hanging out with friends.
This thought keeps me moving all day; I’ve been counting time by the half hours since my shift started. I’m a whirlwind of activity, getting all my stuff done quickly…I’m not staying over late today, no sir!
It’s been smooth and fairly decent, normal routine and no drama. I’m even humming as I make a bed before lunch.
That is, of course, when I hear it: a high-pitched wail that sounds like a ghost out of a horror movie. I’m out of the room in an instant, charging around the corner until I come to the source of the noise. Mrs.___ is sitting in her room, call light clipped to her lap–she doesn’t seem to notice it though. Her head is thrown back and that awful ghost-wailing sound is coming from her mouth.
I’m by her side in another second. “What’s wrong?” I ask.
For a moment, it sounds like there might be words mixed in with the crying, but they aren’t strong enough to make out.
“Are you hurting?”
No verbal affirmative answer, but I take the continued wailing as a yes. I can’t see anything wrong with her–no skin tears, bruises or the like, so it must be internal pain. The best thing to do, I decide, is to get her in bed and inform the nurse.
I have a bit of trouble with the transfer as Mrs.___ doesn’t seem to have the strength to stand up properly. I should probably go get a mechanical lift, but I don’t. I want to get her in the bed NOW and all other concerns seem secondary.
This is how injuries happen, but I’m lucky this time. There’s no stiffness or tell-tale twinge in my back as I straighten up; somewhere in the back of my mind there’s a voice that sounds like my supervisor yelling out: “You’ve only got the one back, girl!”
The nurse comes and looks at Mrs.____. He sighs, shakes his head and leaves, only to return a few minutes later with a pain pill. There’s nothing else we can do, he says, but keep a close eye on her. He’ll call the hospital if she’s still doing this later and see about sending her out.
Throughout the rest of the shift, I come in periodically to check on her and hold her hand.
She’s crying still, every time; that ghost-wail follows me everywhere I go. No one, it seems, can get away from Mrs. ____’s pain.
By the time my relief clocks in, we’re all ragged. The on-coming aide winces as she steps on to the hall–you’d think by now the crying would be quieter, but it’s only more hoarse and raw-sounding.
“It’s over!” my partner says. “I can’t take this noise much longer.”
I nod wearily. There’s nothing like a resident noisily in pain to sap your energy.
The wailing continues until I clock out and leave the building…as I start my car and drive away, I just know that she is still crying in pain. I have plans and a good time with friends waiting for me…she’s stuck with the pain.
Sometimes I think the hardest part of the job is losing someone; sometimes I think it is the short-staffed/overworked part.
Today, the hardest part is the helplessness I feel. No matter how much I do, there are times when it will never be enough. Some things fall apart faster than I can put them back together.
I can’t make my residents all better…sometimes all I can do is hold their hand.
But eventually, I have to let go.