Loss and Longing

HIS NAME WAS HENRY. As I sat with him in the bustling dining room of the long term care home where he lived, his eyes shone with quiet dignity, belying the slight tremor in his hands as he lifted the Styrofoam coffee cup to his lips. All around us, other residents were wheeled to their tables, workers rushed around, and the atmosphere clamoured with barely controlled chaos.

Amid the dining room din, Henry, 74 years old, mind clouded by dementia, slowly told me his life story. Most of his memories rose effortlessly to the surface. I could easily picture the vibrant young man he once had been. Where he was now dressed in a well-worn cardigan and hastily arranged bib, he had once proudly donned a policeman’s uniform and badge.

Henry’s story is a sad one, and, unfortunately, typical of many residents living in Ontario’s fractured long term care system.

“I was dropped off here by my family because I can no longer take care of myself,” he said, his voice thickening with emotion. “I don’t see them much anymore. I’m bored, lonely, and confused. I don’t know what to do or where to go. I have no one to talk to. What kind of life is that? The day I lose all my faculties, I’d rather die than live another day here.”

Henry is just one of a number of seniors I got to know while interning with CLAC last summer. As part of a research project developed with the Grimsby Member Centre and CLAC’s Ontario healthcare coordinator, I was tasked with shadowing personal support workers (PSWs) for a number of weeks. My efforts were focussed on determining how much time PSWs have to spend one-on-one with residents, observing best practices among them, and gauging systemic issues within the long term care system.

The project involved shadowing 12 PSWs at 4 different long term care homes in southern Ontario for a total of 100 hours. As a foreigner to the long term care world, I was shocked to witness the severity of the needs faced by both residents and their caregivers.

Like most people, I knew little to nothing about the day-to-day pressures PSWs face in their work, and how they directly affect the seniors in their care. It was an eye-opening, emotional experience—and one I’ll never forget.

AS I SHADOWED THE PSWS, during every shift I saw them scrambling from one crisis to another, desperately trying to complete their tasks and meet the residents’ needs. It didn’t take long for me to realize that what they faced was a near impossible task given the resources at their disposal.

Often, only two or three PSWs were responsible for over 30 residents. They dripped with sweat, rushing around the floor, attempting to attend to the needs of each resident while performing their everyday tasks of waking, bathing, toileting, and feeding residents.

The sound of call bells ring constantly in the homes, taking a toll on PSWs’ nerves. They often have to take time out to redirect wandering individuals and sometimes even have to break up physical and verbal fights between residents.

On top of all their duties, they are required to document everything. The lengthy documentation requirements take time away from them to provide much-needed hands-on care to residents.

Compounding the problem, they often are working alone. In every home I visited, I saw PSWs dealing with the consequences of working short due to the high rates of employee absenteeism, turnover, and medical and stress leave that are so common in long term care. Working short leads to a vicious cycle of constant stress, crushing workload burdens, and breakdown, which in turn leads to more staff being absent.

It is one thing to read about working short, but it’s quite another to experience what it means first-hand on the floor of a long term care home.

PSWs and residents both suffer from employee shortages. It often causes staff to take their stress out on each other, creating very negative workplace morale. Unnecessary walls quickly form between coworkers, who should act as each others’ allies and carry each others’ loads, but sometimes are at odds with each other as they deal with overwhelming and competing demands.

PSWs are also seeing a marked increase in behavioural issues of residents as an increasing number of residents entering homes already have advanced stages of dementia. I saw how quickly and dramatically behavioural changes can happen in some residents. It makes attending to their needs so incredibly difficult for PSWs.

I witnessed this rapid behavioural change with residents on a number of occasions. But one resident in particular stands out in my mind.

Mary was a sweet, positive resident who came up to me on the floor and initiated small talk. After chatting pleasantly for a time, the PSW I was shadowing approached her to take her to the spa room for her bath.

When it dawned on Mary that it was bath time, her personality changed instantly. She started wailing, flinging her arms, and resisting.

I have never seen someone’s personality shift so rapidly in my life. For 10 minutes straight, Mary screamed and cursed at the PSW: “Go to hell! I hate you so much!”

The incident left me rattled. But the PSW remained calm and collected throughout Mary’s outburst. I couldn’t believe how unfazed she seemed, how professional she remained, despite Mary’s extreme resistance and hostility.

Afterward, she explained to me that this was normal, everyday behaviour for Mary, and that there was no other way to get her bathed. The training she had received as a PSW for an incident of this nature is to withdraw and reapproach at a later time. But this rarely works because residents who don’t want to be bathed put up a big fuss every time. And if residents don’t receive two baths per week, the home will be cited by the Ministry of Health and Long-Term Care.

I learned quickly that Mary was not an exception. During every single shift I shadowed, I witnessed multiple instances of resident resistance and abuse—physical, verbal, and emotional assault of staff.

I saw residents bite and kick PSWs and pull hard on their hair. Most residents don’t know what they’re doing, but that doesn’t change the fact that if anyone else did these things, it would be a criminal act, and the police would be called. In long term care homes, it’s become normalized.

WHAT AMAZED ME THE MOST during my weeks shadowing PSWs was their grit and resiliency. After a full day of work, I was often teary and emotional, deeply troubled by the scenes I had witnessed, and physically exhausted. I felt like I had just run a 10-kilometre race. All I wanted to do was go home and curl up on the couch to recover.

But this is not possible for many PSWs who have families and other responsibilities that require their attention when they get home.

To get through it, PSWs have to constantly force themselves to mentally block out the sounds of shrill screams and crying, and the steady ringing of call bells they hear all day. They have to always keep their emotions in check—even when they’re being followed by residents asking them every five minutes, “When can I escape this prison and go home?”

I asked PSWs how they dealt with the mental stresses of the job. They told me, “You get used to it. You learn to avoid overthinking things and keep your focus on getting the job done.”

But the workload has steadily become more intense for PSWs over the last decade or so as resident needs continue to increase, the documentation burden imposed by the government increases, and fewer staff are available for front-line care. And the consequences are directly filtering down to the residents because PSWs have less and less time to provide anything but minimal hands-on care.

As a result, PSWs feel conflicted about the quality of care they’re able to give. Some have adapted their workplace routines to become task-focussed rather than resident-focussed to meet all the demands placed on them.

The task-focussed PSWs were often more effective in meeting government-mandated physical demands of residents. But they were often forced to sacrifice residents’ emotional needs.

In contrast, the resident-focussed PSWs, with the limited time they had, attempted to cater to each individual’s needs and took an extra minute or two to allow the individual to feel like a human being. But this often left them scrambling to finish all of their tasks.

The task-oriented PSWs treated all residents in the same manner, and gave little attention to individual needs or desires.

In speaking with them, they expressed feeling as though they had to standardize the amount of care they provided for any one task, such as approximately three minutes per brief change, to be able to finish all of their tasks. They felt restricted by the diminished time they had to give to each resident, and it causes them to feel constant guilt. It tears them apart.

So many PSWs I spoke with told me of their ever-present guilt. Many have been in their positions for years. They told me how difficult it was to maintain the excellent care they were accustomed to giving when they first started their careers.

Today, when residents tell them their stories, they’re simply unable to fully listen to their suffering. The pervasive guilt they feel because they don’t have the time to patiently listen to residents’ emotional needs builds daily and creates emotional distress for PSWs.

The guilt they feel is too much for them to bear without managerial and systemic changes and support. Eventually, some break down.

I witnessed a PSW have an emotional breakdown on the floor. She was so stressed out that she wouldn’t be able to finish all of her tasks on time. The demands of the day broke her.

ALONG WITH THE STRAIN ON PSWs, the long term care system is also breaking down an already vulnerable population. These elderly people deserve to spend their final years in comfort and dignity, and be treated as human beings, not as a process that needs to be checked off during a PSW’s shift.

The life of a resident is extremely structured and routine. I watched many residents stripped unceremoniously out of bed at 6:30 in the morning and then lined up outside the dining room, simply to sit in their chairs for two hours without being offered any food or even so much as a sip of water. There was no time.

I watched as PSWs whizzed about tending to more and more residents, getting them out of bed, lining them up. It was exhausting and numbing to watch.

At night, when we walked past residents’ rooms, many would try waving us in to assist them or tell us something. But we didn’t have time. There were too many other residents who the PSW needed to get ready for bed.

I vividly recall a resident who had been crying for over 10 minutes for her mother. Not a single PSW had time to stop and calm her down. It was impossible for me not to feel grief and distress at her suffering. Imagine how it affects PSWs who face it every day, every shift?

When a PSW took a few moments to chat to a resident one-on-one, what I saw was the most meaningful and valuable experience I learned from my time shadowing PSWs. I saw what a difference treating residents as human beings made to them—and why PSWs choose to do what they do every day.

Residents were so pleased to chat with us. It instantly put them in a better mood and made them more compliant with care.

I spent 10 minutes chatting with one resident who was incoherent. I couldn’t understand a word he said, but my interaction with him lifted his spirits. He took a liking to me, and after our chat, he decided to walk around the facility with me while I shadowed the PSW.

An hour later, the PSW asked him if he wanted to go to bed, expecting him to respond in a hostile and resistant manner. But he readily agreed. The PSW was shocked because he often put up a fight at bedtime. But since he and I had spent some quality time together, he was in a positive, more compliant mood.

Another woman chattered away at me in Russian. I just smiled and nodded to what she was saying.

At the end of the conversation, she grabbed both of my hands, looked me in the eyes, and said in English, “Thank you so much for talking to me. Your happiness and smile are so lovely and they make me so happy. I love you.”

One excellent PSW attending to a resident was providing morning care with a warm and positive attitude. I overheard the resident tell her, “Thank you so much for your help. In this place, I feel like a number, but I don’t feel like that with you. You make me feel special.”

Having noticed the light that shines in residents’ eyes following a conversation with them, and noticing the genuine gratitude they expressed toward me when I asked them how their day was going, I could see how deep residents’ emotional needs were—needs that are often not being met.

PSWs simply don’t have the time to attend to their emotional needs—and sometimes, not even their physical needs.

I noticed a nurse placing medication in front of a resident during dinner. She then walked back to her medication distribution cart to continue doling out medications to other residents. I observed the resident spilling on her bib and having difficulties taking the medication.

I told the PSW I was shadowing that this resident needed help taking her pills. If I hadn’t noticed that the resident was having problems, and hadn’t alerted the PSW, this resident wouldn’t have gotten her medication that day.

These incidents shouldn’t be taken lightly—they highlight the need for an increase in direct care on the floor. The residents clearly need more hands-on care on both a physical and emotional level.

Many residents who end up in long term care facilities are not happy to be there in the first place. I heard countless stories from PSWs of residents being dropped off at the facility and being told they would be returning home soon—only to stay there for their remaining days. Many never receive a visit from friends or family.

As a result, some residents develop severe anxiety issues, yet minimal resources exist to attend to these residents. It’s deeply distressing to see residents not being treated or cared for to the extent they should be—as human beings—and knowing that none of their loved ones are coming to visit them.

Residents experience a variety of different emotions. Some have painful or remorseful pasts. Some are sad because of the passing away of a loved one. Others are angry that they can no longer live independently, while others may have suffered from anxiety throughout their lives, and continue to suffer from it to this day.

But one constant common feeling to most of them is boredom. For many, the main events of their day are sleeping and eating.

WHAT WOULD CARE LOOK LIKE if greater resources were made available for PSWs to be able to provide resident-focussed care in long term care homes? How much better would the outcomes be for residents and those who care for them?

The answers are obvious. And yet the long term care system continues to be underfunded in Ontario and other provinces. It’s only going to get worse as our population ages and fewer people are willing to take on a career as a PSW.

Everyone—but especially those in positions of authority who mandate policies and procedures—should shadow a PSW to gain a broader perspective and more valid understanding of what long term care looks like in real life. They should experience first-hand the desperate need of residents and PSWs so they can advocate for changes and heal Ontario’s broken long term care system.

The experience I had as a summer intern shadowing PSWs will stay with me forever. I not only gained a more well-rounded perspective on the deep-seated flaws of the current system, but I gained a whole new level of appreciation for PSWs and the incredibly hard work they do.

I encourage everyone to thank a PSW for the significant role they play in our aging society in caring for our elderly. These are our parents and grandparents.

I listened to them tell me stories of loss and longing, of their children and grandchildren, the places they worked, the businesses they owned, the places they travelled to, and the things they have done in their lives.

But so many are forgotten, not only by their own families, but by a system that cannot cope. It breaks my heart to see the way in which our current system has failed them and those who care for them.

It’s our duty as members of society to advocate for those who no longer have a voice to advocate for themselves, who raised and nurtured us, and push for changes to make long term care truly resident-focussed.

CLAC represents 8,000 healthcare workers in Ontario, many of whom provide care to residents in Ontario’s long term care homes. Based on input from CLAC’s long term care working group, CLAC made a submission, “Patients First: A Plan to Combat Pressures in Ontario’s Long Term Care System,” to the Ontario Ministry of Health and Long-Term Care in February 2017, with follow up submissions in February 2018 and January 2019.

Patients First

In response to 15 questions posed by the ministry about capacity, infrastructure, and quality of care, CLAC members shared their experiences, perspectives, and recommendations. Their 46 recommendations, if implemented, would increase access, choice, and quality of care. Members called on government to implement funding for four hours of care per day immediately.

In alignment with CLAC’s patients-first focus, the working group recommended that best practices be identified and adopted as a means to improve quality of care throughout the long term care system. One recommendation asks the ministry to identify facilities that have high quality of care and are performing well, and provide support for the implementation of quality-of-care best practices.

Some homes do better than others at maintaining a full staff complement, organizing the work so that staff do not work so frantically and are able to care for patients according to the care plan every day and every shift. These homes need to be identified, and the ministry needs to determine what makes them effective and what support is required to see all homes operate in a similar fashion.

CLAC will continue to put forward constructive and practical solutions that will improve and sustain the long term care system. Residents, families, and workers deserve nothing less than a well-funded and well-functioning system that provides all seniors with the dignity and respect they deserve.