She had a collection of clocks. Dozens of them, haphazardly placed among her other bric-a-brac. Each one was set to a different time. They were her moments. Her most momentous moments, forever frozen on the featureless faces of the unassuming time pieces. Her greatest pain and purest joys forever memorialized, never to be robbed by something as insignificant as second hand rotating repeatedly; endlessly around the same set of numbers.
She refuses to see life in phases; minutes to slip away or for which to be accounted and set aside for mundane tasks that will soon be forgotten. Her frozen clocks scream of a life that refuses to be empty and thoughtless, regardless of age. That clock holds the moment her that her love arrived. That one tells the tale of great loss and brokenness that she did not think she would survive. Each one holding a story; a defining moment of a life full of love and pain and meaning. The best moments gave her faith and hope and the most challenging and painful defined her character as they taught her. She holds every moment encapsulated in those still, quiet clocks with equal importance. For how does one appreciate joy without acknowledging pain? How does one not become embittered by pain without holding onto joy and humor?
The longer she walks in this world, the more vital those clocks become to her. In the chaos and noise, they are her truths. No one can rob her of her experience, not even time. As her wrinkles deepen and the world changes around her, she finds peace in wisdom. It may have taken her a lifetime, but she knows what matters and shares her experiences; her clock moments with others. In doing so, she is both teacher and student and remains full of curiosity despite her age. After all, as long as she still has breath, there is room for more stopped clocks. For her, that is a life well lived.
For a caregiver, there is nothing like a good hall partner to make the shift go right. Reliable coworkers that you get along with can help you maintain your sanity even on the most challenging days. They can make the difference between looking forward to coming into work or dreading it. During my 25 years as a caregiver in the veterans’ home, I had many such hall partners. One that stands out for me is my old buddy Russ.
While we worked well together, Russ and I had completely different personalities. Russ was loud, gregarious, and not afraid to speak his mind – to anyone. He was a big guy, with long hair and sported more than a few tattoos and body piercings. I was always more reserved, careful with my words, and more deliberate in my actions. And I was far more conventional in my appearance. However, he did talk me into getting a couple of small tattoos, one of which he did himself as a budding tattoo artist.
On the unit we complemented each other well. We were each assigned permanent groups, but we knew each other’s residents as well as we knew our own. When one of us had the day off, we knew the other would be watching out for our respective residents. “Take care of my boys tomorrow,” Russ would remind me before a day off.
We also knew each other’s routine and work habits. Russ was always around when I needed help. I always pretty much knew where he was and I didn’t have to spend a lot of time running around the unit looking for someone to spot me on a Hoyer lift or assist with a two-person transfer. And I did the same for him. I just kind of knew when to show up in one of his rooms. In fact, Russ referred to this as my “Jedi Wall Trick,” this uncanny ability to suddenly, but quietly appear – as if I walked out of the wall. It actually kind of freaked him out a little; he would grin and shake his head, and ask me to stop doing that.
We each took different approaches to our residents. Russ was more forward, sometimes a little too forward, and I would have to steer some of his interactions in a more appropriate direction. The same level of familiarity with certain residents in a care situation might not be as acceptable in a more public setting. At the same time, Russ had a knack of bringing residents out their shell and could reach them in ways that didn’t come natural to me. He showed me that being authentic, especially when laced with humor can help break down social barriers and actually strengthen the bond between resident and caregiver.
Due to the nature of the beast, caregivers in an institutional setting often have to work with a looming sense of turmoil and even fear. We may like the work and enjoy our residents, but sometimes we’re not so crazy about our place of employment nor the system under which we work. In this kind of atmosphere, we learn to rely on each other to keep it real. And more than anything, Russ helped to keep it real.
In my next post, I’ll talk about my current work partner. She’s a few feet shorter and a couple hundred pounds lighter than Russ, but just as valued.
As a caregiver, I cut my teeth on first shift memory care. For years that was my world. Fast paced, short staffed and unpredictable, first shift was nonstop action. I remember thinking it was ridiculous that there was a pay differential for third shift. After all, there work load was so much lighter than ours. It just didn’t seem fair. I thought along the same lines about private care. One client? How hard could it be? Why were they paid so much more than those of us in facilities? Their job was a cake walk in comparison. Of course, at the time I had no experience with private care or third shift but it seemed like common sense to me. I was wrong.
Contempt prior to investigation. My thinking at the time can best be described by that simple concept. And we are all guilty of that from time to time; Viewing people, events, and moments solely through the lens of our individual perception without the benefit of direct knowledge. If the past few years have taught me anything, it is that the remedy for such thinking is actual experience.
Private care was not easy street. In many ways, it was much more challenging for me than working in a facility. Sure, I occasionally lamented the pace and amount of work we had to accomplish on first shift in my facility, but truth be told, that is when I’m at my best. It was harder for me to pull back and refocus my energy than I expected. The hours were long and it was difficult for me to set work boundaries without the guidance of an agency. It could be very lonely and at times I felt very isolated. The flow of the shift was entirely based on other people’s moods and level of pain. There were also amazing aspects of private care. I loved the family. All of them. I loved the freedom of working independently and having the time to really get to know my client. I loved being involved in bringing holidays back into the house and making her laugh. I loved the deeper connections I was able to forge because my focus wasn’t split eight ways to Sunday. That also made it very hard to leave when a new opportunity arose. My two year journey into private care has enriched my experience in this field and added skills, abilities and insight into my work that I would not have gained had I not taken that path for a little while.
Though I’ve only just begun my jaunt into third shift, I’ve already made some realizations. I understand why they offer a shift differential now. It’s true that the work load is much lighter but that is all I was right about. When I worked first shift, I ran hard. I bled for the job, but when I clocked out for the day I was able to leave work at work. For the most part, anyway. Not so on third. So much of my time in the day is spent trying to effectively work sleep into my schedule so I can be awake and alert through my shift that even when I’m not at work, I’m thinking about work. Or thinking about sleep. And everything else has to be worked in between those two things. The extra money isn’t about what happens on the clock. It’s about the willingness to rearrange life off the clock in order to work when the worlds asleep. It’s about the toll that takes on your mind and body. Sad to say, I would not have connected the dots on that had I never taken this position.
So I am very glad my experience in this field has evolved and hope it will continue to do so. These experiences will remind me not to engage in the “shift wars”. We do not need to tear each other down, ESPECIALLY without having the first clue as to what it’s like from first hand experience. I consider it a lesson well learned.
Old People’s Home
– W.H. Aulden
All are limitory, but each has her own
nuance of damage. The elite can dress and decent themselves,
are ambulant with a single stick, adroit
to read a book all through, or play the slow movements of
easy sonatas. (Yet, perhaps their very
carnal freedom is their spirit’s bane: intelligent
of what has happened and why, they are obnoxious
to a glum beyond tears.) Then come those on wheels, the average
majority, who endure T.V. and, led by
lenient therapists, do community-singing, then
the loners, muttering in Limbo, and last
the terminally incompetent, as improvident,
unspeakable, impeccable as the plants
they parody. (Plants may sweat profusely but never
sully themselves.) One tie, though, unites them: all
appeared when the world, though much was awry there, was more
spacious, more comely to look at, it’s Old Ones
with an audience and secular station. Then a child,
in dismay with Mamma, could refuge with Gran
to be revalued and told a story. As of now,
we all know what to expect, but their generation
is the first to fade like this, not at home but assigned
to a numbered frequent ward, stowed out of conscience
as unpopular luggage.
As I ride the subway
to spend half-an-hour with one, I revisage
who she was in the pomp and sumpture of her hey-day,
when week-end visits were a presumptive joy,
not a good work. Am I cold to wish for a speedy
painless dormition, pray, as I know she prays,
that God or Nature will abrupt her earthly function?
The poem that Lynn shared in her post a couple of weeks ago inspired me to start looking at poetry again. This one in particular really spoke to me today. The lines of this poem match up with the faces in my head. I think that’s why I like it so much. It puts into words something that I’ve never been sure how to verbalize- how do I help people who’ve lost so much? Each line brings to mind a resident to match it.
Mrs. E- a stroke took her sight, and old age took her strength. Every time I help her with a shower, she apologizes for taking up so much of my time. Mrs. A doesn’t like my help- her mind is going, but while she still has her body she wants me to know it. Whenever I forget, she’s quick to remind me, “I can do it.”
A resident whose name I can’t remember anymore. “Would you like to go to Happy Hour?” A blank stare at the wall- no. “Would you like to watch some TV then?” An eye roll and a shrug- yes. I turn the TV on, and change it to the channel she asks for. I’d like to stay and cheer her up. But I have two call lights going off, and a shower to give before dinner. The stare has been transferred from the wall to the TV.
Mrs. F. I like to think that she and I have a bond- she might be losing most of her function, but her sense of humor is still intact. After dinner she leaves to round the building in her wheelchair, and I let her go. It’s better than keeping her cooped up on the hall with nothing to do.
The geri-chair group on the Skilled unit. After dinner, we group them around the TV until we can put them to bed. Mrs. W sits and watches the TV, and next to her Mrs. K mutters nonsense, the same phrases repeated over and over.
Sometimes I find myself forgetting that they used to be different. I’ve only known them like this, and in a way, I guess that makes it easier? I don’t have to remember, to look at their faces and see what used to be. But if I pay attention, I can see glimpses that still shine through.
Mr. J used to be a farmer and every once in a while he’ll tell me he can’t go to bed because he needs to check on the cows. Mrs. F isn’t the person she used to be, but she absolutely lights up every Thursday evening when her grandson visits. It’s the longest I’ve ever seen her sit in one place without getting bored.
Mrs. V used to let me practice my Spanish with her, before she stopped walking down to the dining room. Mrs. M likes to chat about crime shows. Mr. B likes to discuss logic and human nature.
They’re still there. Behind the eyes of each of my residents sits a person trying to hold onto what’s left of their life. I find it hard to deal with, and I get to go home at the end of the shift. They don’t. If I’m burnt out, I can’t imagine how they must feel.
My favorite quote comes from the book Unwind by Neal Shusterman. The book itself has nothing to do with long term care, but this one quote has always stuck with me- “Love the ones you can. Pray for the rest.” I’m trying to make this my work philosophy. Each day, I am given a group of people to care for, and for that day, they are mine to love. I can’t do everything. I can’t make legs work or memories come back or pain go away. But I can smile. I can listen. I can look and actually SEE. I might not be able to do everything, I can do SOMETHING. And then I can go home and pray about the rest of it.
The other day I was in a resident’s room getting ready to administer a nebulizer treatment. Her TV was turned to the Game Show Channel with “Family Feud” going on. My fellow care givers can attest “Family Feud” is a staple in the LTC environment with Turner Classic Movies a close second. You can’t walk down a hall without hearing at least 3 different versions of “Family Feud” blaring out of multiple residents’ rooms.
It was the beginning of the show where the host, Steve Harvey, has each of the family members introduce themselves before they provide an answer to the question he is asking. I wasn’t paying much attention to the show as I am busy getting the treatment ready and assessing my resident’s shortness of breath. I am vaguely aware of Steve Harvey talking to the first three family members. I didn’t hear their names, what they did or the answers to the question. The fourth family member made me stop and look at the TV screen. I half heard Steve Harvey ask her, “What do you do for a living?” It is difficult to explain the fullness of what happened next.
She said, “I am a CNA at a long term care facility.” It wasn’t the words she spoke as much as her tone of voice that made me whip my head around to look at her. I see and hear so many CNAs when asked what their occupation is a sort of apology tends to follow. “I’m a CNA but I plan on (insert a perceived better career choice here)…” or “I work as a CNA while I figure out what I want to do.” The body language that accompanies those statements relays uncertainty, self-consciousness, and/or humility.
This woman on that game show was different. Those brief seconds she was on the TV screen showed a confident woman who was proud of her career choice, proud to be a CNA. Everything about her body language supported the self-assured tone of voice in which she spoke those words. “I am a CNA at a long term care facility.” End of sentence. The words “courageous”, “bold”, “empowering”, and “confident” all ran through my brain in those few precious seconds. She offered no apologies or explanations. She stood tall, looked Mr. Harvey in the eye and declared her right to be proud of herself, of her career and those in her care. I am proud of her, too.
CNAs, be proud of your career choice. Do not ever, not even once, apologize in any way for working as a CNA. Stop feeling like you have to rationalize being a CNA with sentences like “I’m a CNA but…” You don’t have to do that. Part of changing the LTC environment and other health care settings involves how we speak about ourselves and each other. Talk about your job with pride, with confidence. What CNAs do is challenging, emotionally rewarding and taxing, sometimes all in the same day. Not everyone can do the work. It takes a special kind of talent and perseverance to be a CNA for 2 years, 5 years, 15 years. The more each of you declare with confidence and pride in your voice, “I am a CNA” the more empowered you will become. The more empowered you are, the more others will want to hear what you have to say. Be bold; declare with confidence your career choice just like that wonderful woman on a popular game show did. Be confident in yourself. Be proud to be a CNA. I am proud of you, too.
In his recent post Yang brought our attention to PHI’s campaign to educate the public about caregiver issues, and gave us a link to their introductory video. In that video PHI posed these questions:
1. How can we ensure caregivers get the training they need?
2. How can we keep care affordable to families?
3. What data is needed to help policyholders take action?
While these are important questions, if you ask caregivers themselves why some are leaving the field and others wouldn’t think of entering it, they’ll no doubt raise a different set of issues. At nearly every conference or webinar I attend I ask about staff-to-resident ratios and caregiver wages. Usually there is no reply, as if I were speaking from some parallel universe and couldn’t be heard. If there is a reply it’s on the lines of “Yes, we know. But it’s complicated. These things take time. You can’t expect things to change overnight.”
Yes, there is a shortage of caregivers. And yes, good care isn’t affordable. In fact good care can’t be bought. By that I mean whatever you might be paying, either for in-home care ($20/ hour? $40?) or for care in a long-term care home of some sort ($6,000-10,000/ month), the more care the person needs as health declines, the wider the gap between the person’s needs and the quality of care the person actually receives.
Everyone is selling solutions like workshops and videos and toolkits and new business models to long-term care administrators or home healthcare systems’ owners. Some groups are advocating on a state or even national level and some gains have been won. But from the outcomes I’d say that a lot of the effort is wheel-spinning. (An increase in the NYC minimum wage for home care workers to $15/hour by 2021??) Today’s aides have rare luck if they earn $15 an hour and have a regular 40-hour work week. An aide may have six to ten residents/patients to care for, and many of those will suffer from dementia and/or be unable to walk alone safely or even support themselves standing. (Yes, I know I’m a broken record…) Do you know what it’s like to try to wash, toilet, transfer these residents several times a shift, and keep them from falling the rest of the time? (If not, go back and read CNA Edge.) This is before we even begin to provide enrichment a la ‘person-centered care.’
I want the whole healthcare industry – including those championing reform — to acknowledge what the biggest issues are for caregivers: our obscenely low wages and our outrageously onerous, even unsafe, working conditions. These organizations don’t yet tackle caregivers’ most urgent needs: a living wage, safe work conditions, and a work environment that supports person entered care. We need to ask them, What are you doing about these issues and what can we CNAs do to support you in this?
When Malcolm X called for a change in Americans’ attitudes on race and was told that such changes (culture change, if you will) take generations, he reminded us of this: At the beginning of World War II Germany became our enemy and Russia became our ally. But when the war ended we, America, saw Germany as our ally and Russia as our enemy. That attitude-change didn’t take even one generation. The healthcare industry needs an attitude adjustment. It is not okay for long-term care operators or owners of home healthcare agencies to charge exorbitant fees to clients and return a too-small fraction of these fees as wages to their direct-care workers, while management and professional staff and consultants are handsomely compensated. It is not okay to hire employees unless you train them in the skills they need to work with the elderly frail, starting with English language skills. It’s not okay for the industry to tolerate poor work ethics: last-minute callouts; texting while on duty; and most of all, failure to interact with residents in a way that says to them “I love being with you. Thank you for letting me be part of your life.”
There are thousands of followers of CNA Edge. As Yang exhorted us, we need to support PHI in their effort to educate the public about caregiver issues. Let’s ensure that when they frames their 60 Issues, they don’t airbrush our issues out of the picture they’re drawing.
Empathy is at the heart of caregiving. While the ability to understand and share the feelings of others has an intuitive element, a natural byproduct of genuine compassion, this awareness can be developed and enhanced through thought and imagination. Simply put, we can use what we know about another person to put ourselves in their shoes.
As I read through Dr. Eleanor Feldman Barbera’s nursing home primer, The Savvy Resident’s Guide, I found myself doing exactly that: imagining what it would be like to be an elder about to enter a nursing home. The book, subtitled Everything You Want to Know About Your Nursing Home Stay, But Were Afraid to Ask touches on all the basic topics, including what to expect when you first arrive, working with staff, managing medications, your relationship with medical and social work staff, dietary issues, rehab, activities, money issues and lodging complaints.
Throughout the book, “Dr. El” offers practical advice on everything from the best way to request assistance from care staff to techniques that help you stay motivated during rehab sessions to the best way to talk to your doctor. Dr. El keeps the tone light, often illustrating her points with personal interactions from her own experience. A common theme running through each chapter is that as a resident you are not powerless and that, in fact, there is a great deal that you can do to improve the quality of your experience in a nursing home. The book is an easy read, literally an easy read, with its large print format.
There is very little in The Savvy Resident’s Guide that could be considered new information for experienced caregivers. But in a way, for us at least, that’s the point. These issues are so woven into the fabric of our work experience that they become second nature to us and sometimes we lose sight of the fact that what might be obvious to us might not be as clear to someone else. A guide such as this, geared for new residents and their families, can help us become more aware of the basic kinds of information new residents need to help them cope with what can often be an overwhelming psychological adjustment.
In another way, as Dr. El invites us to in the foreword, the book helps us step into the new resident’s shoes because it reminds us of when we as caregivers were new to the system. The whirl of faces and personalities, the jargon, the strange cultural norms and customs of the facility and care unit, were all things we had to adjust to. Now, with a little imagination, we can put ourselves in the place someone who might not be feeling well to start, who perhaps has gone through a sustain period of loss and now has to adjust to this strange new world. Our empathy can begin even before the resident enters the front door.
Dr. Eleanor Feldman Barbera is an accomplished speaker and consultant with 20 years’ experience as psychologist in long-term care. Her blog, My Better Nursing Home can be read here. Dr. El is also a regular contributor to McKnight’s LTC News. The Savvy Resident’s Guide is available on Amazon as a paperback or as Kindle book here.
For those who might not have seen the ‘goddess’ of dementia care (imho) Teepa Snow in action yet: Teepa has a wonderful skit she performs in her training programs. At these programs the audience members are generally caregivers. Teepa will play the role of the caregiver while an audience member takes the role of the person with dementia. (Every caregiver becomes an expert in this role!)
Caregiver, smiling: “OK, Jeannie, time for bed. Let’s go to your room.”
Person with Dementia: “No.”
Caregiver: “C’mon, time for bed.”
Caregiver, now frowning: “Now Jeannie, it’s time for bed. You know you’re tired.”
PwD: “No, I’m not.”
Caregiver, in a louder voice: “Jeannie, it’s time for bed. Come with me. You need to go to bed.”
PwD: “No! I’m not going.”
Caregiver, louder still: “Yes, you are! It’s bedtime and I have to get you ready for bed!!”
PwD, now pushing and screaming: “There’s a stranger after me! He wants to rip my clothes off! Stop it! Somebody HELP me!! I want my Mother, where’s my Mother!! I want to go home!!”
Caregiver, louder than ever and totally exasperated: “You come with me right this minute! You are COMING WITH ME NOW!!
As Teepa asks at the end of her role-play: Which person seems to be the one with the cognitive problem? The one who seems to know what she wants (not to be put to bed yet), or the one who is hell-bent on getting the dementia-impaired resident to change her mind. The resident probably can’t change her mind at this point, especially not in response to a caregiver who repeatedly sends, in an ever louder and more frustrated voice, the same message: DESPITE YOUR WISHES, I’M GOING TO PUT YOU TO BED NOW. If anything, the caregiver’s rising frustration triggers the resident’s fight-or-flight instincts.
For CNAs, this is the question of the hour: What do I do when a resident won’t cooperate? Do I become more and more insistent, and in the process arouse further defiance in the resident? Maybe I worry “I need to rush. If I don’t get everyone ready for bed by the end of the shift, the unit manager will be furious with me.” (PS: Remind her of that person-centered care she’s trying to sell to families—and which the brand new CMS regulations confirm.) Do I gripe to my co-workers? Or do I try something new. We CNAs develop great ‘tricks of the trade.’ My secret weapon is music. Others try chocolate. Sometimes a short walk will help. Or we might initiate discussion of a favorite family photo. Trial-and-error is the name of the game. Creative redirection. The point, as Teepa Snow and Naomi Feil teach us, is to connect with the person. To empathize with the underlying emotion being expressed and validate that emotion. To engage the person in an experience they might enjoy before moving back to the ADL.
All this takes time. But taking time to engage a resident isn’t a frill. It’s an essential part — the best part, of being a CNA.
I became a CNA at an age at which most people are retired. By this time most CNAs have backs, knees, shoulders that are broken down or on their way to that. On my first day on the job, the CNA I was shadowing asked, “HOW old are you? You’re never going to be able to do this job.” Biologically speaking, I could have been a grandmother to some aides. But I was in better shape than many, in terms of weight and flexibility. Some aides arrived at work groaning, “My back is killing me!” “My knees are soooo bad today.”
In reality I could do everything a CNA needed to do. But there was one thing I couldn’t / wouldn’t do: move a two-person assist alone. At first the experienced aides helped me. But soon they expected me to care for these residents without help, as they did. There seems to be a machismo culture among aides: “I can do this on my own.” I was saved by the fact that our unit supervisor had posted a list of all residents who needed the assistance of two aides to be moved. When I needed help I asked for it and was given it. But other aides wouldn’t ask me or each other for help, except in the toughest cases.
Who is a two-person assist? A person doesn’t have to weigh much to be a dangerous dead weight when she needs to be moved. Even frail, thin persons become dead weight when they don’t have the bodily strength to stand or the cognitive capacity to follow instructions. The CDC, OSHA and other organizations have developed algorithmic guidelines which state in effect that unless a person is both fully weight-bearing and able to cooperate in the action (that is, able to understand what is needed and able and willing to do what is needed), then the resident needs two persons, sometimes more, and sometimes also requires mechanical equipment, to be lifted, repositioned, transferred. Fellow aides: How often is this the rule of thumb where you work? Given staffing levels, how many of you have time to stop to help others with residents who should, under the guidelines, have the assistance of at least two persons when they are moved? How many of your co-workers have time to help you?
Unfortunately, as far as I’ve been able to learn, failure to provide adequate staffing to ensure two-person assists for all non-weight-bearing residents isn’t an OSHA violation that has any penalty attached to it. This is a guideline and not a mandate. Thus LTC homes might not be as worried about compliance with these guidelines as they are about Medicare rules. But some states might have tighter rules. And guidelines do have some weight in policy-making in LTC homes.
Despite my facility’s two-person assist list and despite all the guidelines, many aides chugged right along, lifting residents without help. Both the resident and the aide are at risk of injury (or at least distress), but aides insist on flying solo. Sometimes we’re our own worst enemies. CNAs: Let’s call a truce with our aching bodies! It’s worth a try to work with our unit supervisors to develop a two-person-assist list, using it to transfer residents more safely and comfortably.
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.