1234whocares-blog - Tumblr blog

1234whocares-blog · 6 years ago

Text

I hate to start off being overly dramatic, but I am a bit ashamed to admit that each morning, as I walk up the driveway to my job, I have to take a deep breath and let it out.

Slowly.

I need that tiny moment of time to acclimatise myself for what's ahead of me for the day. What's inside. But I always manage to continue up the driveway, and punch in the security code, pass through the rear one-way security doors, and make my way up the narrow stairway to the main lobby. Maybe partly because of that deep breath.

From the sound of it, you might guess that I work in a prison. I know people who have worked in prisons, so I have an idea of how hard and mentally exhausting it must be. However, most of the day, they have nice shiny security systems with cameras and bars between them and the people they work with and for. They can, and are under orders to be professional and still do their jobs.

I can't be professional. I need to have my instincts way out there, antennae twitching for all and any signals. It can be very exhausting, but it's how I worked with the near dead and the dying before this job, and I managed to survive. I can't keep distance and do the job, or at least the only way I know how to do it. So I need that first deep breath, and another before I get into the rest of the building.

There's another code to punch in to enter the nurses' office where the staff keys are kept in a lock box. As the jargon goes, this building was not `purpose built'. It was expanded gradually over the years with differing styles of security and proof of that is in the motley variety of keys on each ring.

If I find a set of keys with all of the attachments I'll need for the day, I take it as a good start for the morning. I need a master key for the main doors and the residents' rooms. Magnetic swipe card for the several security doors dividing different areas. The elevator requires a key for all floors and then there's another key for records and storage cupboards, some of which contain the keys to other locked areas.

As usual, there's no pen to use to sign the logbook. I find one in my ever-present satchel; ever present because it's always strapped to my side. Nothing can be left unwatched here, so any of the stuff that I can't lock away, has to stay with me and can never be put down.

If you believe that Hell is subjective; that it is specific to each individual, then I work in what is probably many people's idea of Hell. Because this is where we send the lost souls.

It probably seems as though I'm looking for sympathy. But I'm well aware that I don't live in hell, I just work there. I get paid quite well to do a job that I take pride in doing well, and I get to go home to a very happy private life each day.

Almost all of us have been in old age residences; most have been to old age homes. But I work in what we call a special needs psychiatric nursing home.

These are not the average oldsters who are placed in a nice residential complex or even a regular nursing home because someone in the family wanted their house or was afraid they'd set fire to the kitchen making tea. We have the one in 10,000 people who have won the lottery of early onset dementia, with a side order of violence. Almost all of our residents have been ejected for a variety of causes from the standard homes. We also take the people who have been in several institutions all of their lives and finally qualify, by being over fifty, to be dumped into a psychiatric nursing home until they die. We have the hard cases that legally cannot be simply doped or restrained. Each represents a pain-filled tragedy or years of angst and self-punishment for friends and family members, few of whom ever visit.

Like many standard homes today, the residence is rundown with overworked staff. Yet it's not a cheap place. Most residents or a government subsidy, are paying at least £1500 a week, or almost $12000 US a month. For the rest of their lives. However long or short that might be.

The building was not designed for its present clients, or `service users' as we are forced to call them. I hate that name.

In this home, there's always a crisis, often several. A third of our people are life-threateningly underweight. Most are paranoid, many are violent. They don't want to be here and many hate, truly hate, the staff and try to injure them while they do their jobs.

Many of the staff return those feelings. Most are too burned out, almost as medicated as the patients with anti-depressants, to do anything but push and prod the residents to where they `should be'. Unless there are visitors or inspectors.

Even as I come up the stairs each morning, I can usually hear some sort of fracas. There's always moaning or cursing or shouting in the main room beyond the doors.

Maybe Al is half naked and chewing on the clothes he stripped off. Maybe Bob has reached into his pants and now has handfuls of faeces to spread about. Or simply Carol is screaming `BASTARD!!', kicking and biting as the staff tries to remove her from the room. So I ease in by the TV room first, rather than face the chaos that is the main dining room right away. I have to open and close the door carefully, because often there are residents waiting for it to open and make a break for it. The few people who are capable of recognising me give me a hello and a wave, some beckon but this early in the day I usually just wave back and ask them to wait until I get caught up with the latest reports. Maybe someone has died, maybe my schedule for the day is in crisis. Sometimes there is someone lying on the floor. Since my arm was dislocated, I'm not able to raise them up on my own, and it is policy to let them remain until you can get assistance.

Anyway, even if there was a hoist right beside them, occasionally the nurse in charge of the floor has left them there because she's decided picking them up is a reward; sprawling on the often urine stained carpet supposedly being an attention getting device. I generally ignore that judgement and go look for a friendly carer. Either way, I often start work by stepping over a human being lying on the ground and go to whomever is in charge on the floor just to check that they really do know that Diana, or Ethel or Fiona is lying on the floor.

They always do. My concern is seen as a lack of professionalism or discipline. And it is.

We exchange info over the constant chant of all homes with dementia, `Please, I want to go home!" Usually echoed in the minds of all the staff. There are also shouts of "I want my Daddy" and "Fuck Off!" "Kill'em!" from various chairs as I go to the locked file cabinet and grab my diaries and files and check to see what's been added to my notes over the weekend. To read if any patient's notes have been expanded and if the corresponding paperwork is filled in properly.

Ten years ago, paperwork was a few minutes a day for a carer or a nurse. Now it amounts to over an hour each shift. An hour that is no longer spent learning about or treating a patient. Also, there are increased numbers of residents per carer and a more disabled, aging population requires more assistance, in bathing, toileting, feeding. Sometimes two staff might be required for each, where once the majority of residents in homes required no assistance at all. Then deduct the time spent on those with deadly infections like MRSA; as they require special handling, gloves aprons, and you have the formula to create our overcrowded, overworked homes. With no time for caring. Or therapy or anything other than basic observation. That’s what we do now in most homes. We don’t care. We observe. We assess.

The main room doubles as the dining room, and due to flexible feeding schedules, there are always few people just being served breakfast whenever I come in. The dining room seats about 50, with massive windows all along one side and peeling green paint along the other three. There are three fans cooling a 20th of the total space and it boils in the summer and freezes in the winter. There are usually about 20 residents and five or more staff in there at any time in the morning. About a quarter of the residents are unable to feed themselves. Perhaps another half dozen are depressed and are refusing food. So the staff are usually busy attempting to feed recalcitrant people at one table or another while others are doing their paperwork or watching one or more of the violent residents.

If there's no immediate crisis, I can often find a friendly staffer and mention the person on the floor. There's usually a sigh and rolling of the eyes before we go to raise them up. For a variety of reasons I get along with some of the residents better than the rest of the staff, if they give me a few moments to prepare them, we can avoid the usual screaming and clawing as we place them back in a chair. Who knows for how long.

Some of the staff are on One-on-One. That simply means that they sit with the more disruptive residents and try to keep them out of trouble. Only a few of the residents can be been placed on One on One at a time. Though all of them could desperately use the attention, this alert is only for `service users' who for that day have been listed as a clear threat to others or themselves on a continuing, minute-by-minute basis. That doesn't reduce the violence. Fights amongst the regulars still develop, and whoever is free and nearby usually moves in to take one or more of the more violent types out of the potential conflict. How violent? Most of the staff have bruises and scratches, as do almost all of the residents. A resident died six months ago from a violent shove.

In my first month, I nearly lost an eye from a very quick 90 year old. Sounds like a contradiction, but some of the starving exist on the nervous energy that a hummingbird would envy. I had volunteered to try to feed Georgia after the failure of another carer, and I have had some success as a `feeder', especially with the depressed at other homes. My offer was quickly accepted as Georgia has rotting pus oozing from the wound on her head and the smell is so bad that some carers working near her wear masks. Georgia is expected to die soon but she is still defying her family and carers' expectations. I had managed to get most of a weight-building drink down, while singing and cajoling, when I must have missed a signal and she lashed out with nails that had been too long uncut. The scar, from my eyelid down my cheek was ignored as simply another battle wound, like the scratches I'd gotten that same day on my arms. (Carol gives Indian burns like nobody's business.) Nowadays, I'm pretty scar free. I have none of the regular baggage of forcing the residents into places they do not want to be, I am generally associated with good things, not bad, and I do have some ability at making contact. Unfortunately, as my wife is the first to say, that ability is only with the vulnerable and crazy as I'm crap at social skills amongst regular people.

This isn't why the home exhausts me. I have held hands with people about to die. I have seen quite a lot of misery in my years in various homes. It's simply that these people, regardless of the skills I try to bring to the job, will always be lost. Any therapeutic tool I find will always be inadequate as long as the daily stresses and this wretched environment remain the same. I can provide a few moments, a few hours of stimulation. I can occasionally, when I'm really lucky or at my best, find a key that might lead to some possible improvement in their quality of life. But generally, as soon as I turn away, and I have to turn away so very many times each day, they are once again trapped inside minds that seem to be dedicated at torturing them with their greatest fears. Surrounded by others more or less frightening than themselves. Encased in a building that management refuses to improve, despite all my arguments and pleadings.

There is a line from the film Hospital where George C. Scott cries out in rage and frustration, "We cure nothing! We heal nothing!"

In today's nursing home, the emphasis is on the paperwork plus whatever the fad of the day is. There is little treatment or diagnosis. Paperwork and questionnaires are not about defining the patient's specific mental states to work out treatment; it is to find out how to `care' and how to keep the resident from harming themselves or the staff. To do `risk assessments' for whatever the fad is. Two years ago it was falls. Last year, starvation. This year it appears to be access to religion. Are we doing enough to ensure that not only are the present religions of the residents being met, (I have Methodist, Catholic, Anglican and Baptist ministers coming in) but the government wants to ensure that we are facilitating their opportunities to convert to Islam or Scientology.

All training of the staff is not about learning about the diseases, mental or physical, or to find ways to make these people's lives better. It is `cover your ass' training. Two hours for fire safety and food handling. Anywhere from two to six hours total for moving and handling despite requiring proficiency with over a dozen mechanical devices, and other minimum government required certifications. So that if there is a mistake made (ie, someone dies) in the basics by a staff member, the home can point at some certificate and say, `well, it's not our liability that he/she died/fell/starved/was attacked. The staff member was certified in moving/handling/food/dementia/.'

When the inspectors come, do they roust each room or talk to even a fifth of the residents? You're kidding. I once worked in banks and their surprise audits meant a sudden swarming of inspectors barging in the doors en masse. They would blow through the doors like an invading army and stopped every activity including checking the computer lines. But then, money is important, right?

For the mentally ill, we're a little better mannered. In two of the homes I've been in, the manager gave me more than three days notice that a `surprise inspection' was about to occur. And that was simply a warning to make sure my paperwork was in order.

That's what services to the elderly come down to. Is the paperwork in order? Someone is dangerously underweight? Well, all her intake and output (as it is wondrously called) is immediately monitored and recorded. To the point that a whole section of the NVQ (National Care Standards Certification) was devoted (and that's the word) to how to weigh out shit and measure piss volume. So after the person dies from starvation, the home has the paperwork to show that they were following the problem and charting it. Was the cause dealt with? Well, not really. People want to die, what can we do?

Well, see, there's this little thing called treatment, therapy, but even $12,000 a month doesn't pay for that.

This after a century of advances in defining mental states. We may agree that putting a pillow over their faces is not right, but is the present system is hardly more merciful.

So after that rant, we get back to me. I'm very lucky in that I am an outsider. I'm not a nurse, administrator, or carer. I'm the fun and games man. Though after being certified in various forms of therapy and completing a diploma in Care and a level 3 NVQ, I get to be called an Activity Therapist. I am expected to provide at least 20 hours of activities with a therapeutic basis, and 10 hours of directed therapy, all of which I design or research on my own, each week. I am not supervised and am considered a Head of Department with two part-time assistants. I read as much as I can about dementia, and I do a good job. I have managed to diagnose several of the residents and find alternate ways to `deal' with them. There are good days and I am able to go to bed every night knowing I helped someone. That is what keeps most of us in these jobs and it is something most people in offices or factories cannot claim.

The worst thing is that most of the success I’ve had, is due to spotting one or several `keys' to the patient. But this requires the right information and appropriate training. And time to observe and implement. The massive three and four inch files on each of them rarely include pertinent information on their pasts or professions, much less who they were before they came here. Despite all the well-meaning training to stop this conduct, they are treated almost like newborn children, who hardly existed before they came here. Called `little man' and slapped on the hand when they grab at the wrong things.

They are not children. Childhood is the discovery, the exploration of all the newness. My people may seem to be blank slates occasionally, but they have come to this moment, this place, by a long, personal and usually painfully circuitous, journey.

I look across right now at Linda, a woman in her 60's, a former teacher with a Bachelor of Arts. She is quietly crying out from her table in a monotone, `Don't leave us. Please don't leave us… ' No one pays attention. Holly sits at the same table, thrusting a spoon down into a place just a few inches from her bowl. She grins wildly and then stirs the air for a moment. Possibly realising her actions, her smile cracks and she begins to cry. Around them both, people shuffle about aimlessly, occasionally yelling, calling out to people who aren't there. When there is contact, when one of the wanderers touches someone in a chair, there is often a violent response.

One of my notes indicates that Mandy may not be up to going out today, so I decide I better go check on her.

To get to her I have to leave the main room, and weave around and through several of the regular wanderers. These are the ones who have been exiled to sway and collide up and down the narrow corridor for hours. For many, this is how they spend half the day, because with staff shortages, it's easier to force them from the rooms and shove them into an enclosed hallway. Maybe they were bothering other residents; either harassing the quiet or inciting the potentially violent.

Wanderers are people who for a variety of reasons cannot stay still. The main requirement that our training demands is that we NOT call them wanderers. Wandering is a classic dementia symptom, at the least a displacement activity indicative of stress, and extremely important to decipher and analyse as it is an indicator of the type of dementia. It can be a key to treatment and diagnosis. Not one of our residents has been classified in order to use this information properly. Nor is anything done to note if a reduction of stress might limit their wandering. In fact, their wandering about in enclosed corridors obviously increases their stress.

So we’re actually harming them each and every day.

Instead, carers and nurses spend almost all their shifts trying to convince or force them to sit, or eat, or not to strip off clothes, especially at mealtimes. Or when there are visitors or please God, No! inspectors. Wanderers stagger about trying to find somewhere, anywhere that is not `here'. Some try doors and handles, rattling them with growing frustration. Others nervously skitter from room to room, settling like birds in one chair for a moment before returning to the same spot they'd occupied moments before. Some just seem to aimlessly glide about. They might stop you for a meaningless garbled bit of conversation, usually which implies they need assistance in getting to some place that does not exist, and it tests the carers' commitment or schedule to try to pretend to exchange words with them.

As I step through another security door, I find I am surrounded by four or five wanderers, all vying for my attention or trying to get past me. I always make a point of greeting each and not surprisingly, I usually get just as normal a response. I have been doing some music therapy with Al, so I give him a smile and sing a few bars from his favorite singer, Jim Reeves. It gets me a rare grin and he increases his moaning, but in a happier tone. Al is a moaner AND a wanderer. He spends at least 10 hours each day bumping into walls banging about aimlessly in the corridors moaning "wooooo. Woooooo." He turns the lights off in the corridor, possibly because of the greater effect. He's only missing the chains and possibly a Tudor collar. I have to wonder if decades after his death he'll still be there, or at least his moans.

I am still heading for Mandy's room when Ivan stops me. He stands about 5'10 and is stocky, muscular. He glares at me without saying a word. When he has spoken, perhaps twice in the last two months, he usually says "coffee." Ivan gives me the glare for about one minute before he loses the contest by blinking and moves on to someone else.

Ivan picks on the other wanderers. Or should I say, picks them off. He waits until one of the more vulnerable ones passes by and then he brutally shoves them. Six months before he managed to break the pelvis of a resident, who later died from complications.

Strangely enough, the place wasn't sued into the ground. Or as one of the staff put it, "Fortunately, the family was very understanding. They considered the death, ‘an end to her suffering, a blessing.’

Lately he's been picking on Janet as she moves from room to room looking for her handbag while crying in a monotone, "Help us. Would you help us." He's gotten to her three times in the last month and at the Heads of Staff meeting the manager complained, "To listen to Janet you'd think he'd done it a hundred times!" Possibly it felt like that for Janet, as Ivan was successful enough in the three tries that she's just now losing the yellow bruising under her eyes from the broken nose, though the gash over her eye is still bandaged. The manager is probably upset because Janet can be a bit of a pain with her whines of boredom whereas Ivan is completely silent and so far has never attacked staff.

As I turn away from Ivan, someone grabs my shirt and I flinch before I can turn around and look into their eyes. Once I have their eyes with mine, I'm usually safe. This time it's only Katie. Talking with Katie is like dealing with someone on stage doing a monologue from a play you can't see. Or like a character from Our Town. She'll be re-enacting an event of some important day in 1930 when suddenly she'll pivot and address someone offstage. "Get the car going, won't you? Pam? Pam! Are you coming or aren't you?" Then she'll reach down and pick up invisible objects as carefully as the best mime.

My first day here, Katie spent over 30 minutes threatening and cajoling me into getting into what she knew was a car. Unfortunately it was actually a foot-high bird feeder. I tried my best but I could neither get my head inside the thing nor explain why I was being so disobedient when it was clear we weren't going to get to wherever she needed to go if I wouldn't get into the car.

Though I'd been assigned Katie by the manager, no one had mentioned that she liked to smash windows. Later on that day, when some other poor sod was minding her, she managed to get a hold of the yellow hazard sandwich boards that mark wet floors, and swung it with what must have been a satisfying vigour, smashing a small pane in the corridor before she could be stopped. This week she grabbed a small end table and managed two heavy swings into the plate glass doors. Though the entire building seemed to shake, she was unsuccessful. I felt a little disappointed for her.

I finally get into Mandy's room. In her little space, the only personal possessions are the photographs. They show a bright-eyed woman, charismatic even, with family, travelling, taking in the world with a visceral enjoyment that beams through the frames.

The woman I know is flat, mousy. Even her hair straggles sadly down her cheeks and what few words she speaks are unsure, uncertain. She is only a bit older than I am, and she usually sits at a table alone, while the madness crashes about her. The chaos of the dining room once frightened her, now it just exhausts what little energy she still has. She is not well today, and I have to balance her psychological need to get out with the risk to her physical health. Maybe if I replan whom I take with us, perhaps a few less challenging people, we can afford to give her more attention? I have to do something with her, because I’ve already been forced to reduce her timeline therapy this week. This is a type of memory exercise I devised that has been very effective but we reached the stage where I needed her husband to come in and he wasn’t available. Possibly because it was so successful, that the memories it was evoking were too painful for him.

Two years before, she had been categorised as having Early Onset Alzheimer's and had not seen a doctor since then. I went through her files carefully before asking the head psychiatric nurse why there was nothing about Obsessive Compulsive Disorder on her file. She blinked and a light dawned. "Of course!" she actually shouted. And I wasn't being particularly brilliant. I mean, the woman separates and stacks her cookies according to size each teatime. I'd noticed Mandy being dragged across a cobbled street when she wouldn't move from her eyes-downcast position. What they hadn't noticed was that she was trying to only walk on the red bricks and had run out of them. A short chat and she was convinced the black ones would have to do and she was striding along happily. There are many ways of using OCD to actually motivate patients to improve their quality of life, but in the madhouse that is the health care system, with one of the most famous and obvious syndromes around, no one had caught on.

No one had the time.

Most of these people should be in units specific to their needs. But that would require giving up valuable room space. So regardless of the fact that all dementia is different, like a snowflake, they are grouped together.

We are caretakers, only a few steps away from Victorian Bedlam. There are no attempts at healing, we are letting these people die. If I discuss recent papers, categorise my people according to their behaviour patterns, experienced psychiatric nurses meet me with blank stares or resentment. If I suggest I'd like to attend a conference on dementia, or workshops on anything that might make my job more productive, I am actively discouraged, and certainly not offered financial assistance to go. To be fair, I was also discouraged in attending a conference on the new Mental Incapacity Act, something that will affect this home rather directly, so it's not a negative attitude towards the residents that causes this. It's the product and the promotion of apathy and general ignorance.

And that’s what really exhausts me. I know, and the staff knows what this place needs. We can accept that there isn’t enough staff and that there is never enough time to do the jobs we were trained for. But the residents need security, not just the staff. They need separate quarters and files kept that are relevant to treatment, not simply maintenance. The staff needs specific training so they can imagine a future either here or elsewhere that isn’t so meaningless. They need to be consulted by the management because they do know what should be done.

Meanwhile, I am a success at my job by most objective assessments. We’ve created a real library, a proper crafts program, a miniputt golf course, a greenhouse, all costing the home not a penny. There are competitions, trips, more volunteers in the home.

When I arrived, less than eight residents were regularly involved in any activity.

Now over fifty of them are active in something every day or week, even if it is only passive therapy or being taken out for a roll about town. The exercise programs are especially effective and visitors, inspectors and prospective clients are always brought to me as a show of how the place is better than the other home down the road. The administrators also like me because I have sorted out the paperwork and I scrounge and budget. The managers like the promotion in the newspapers and through my newsletters and the increased visitor traffic I encourage, along with the veneer of therapy I provide. The visitors like being involved, consulted and credit me with the fact that they are once more creating happy memories of the resident, something they thought would never happen. The carers like that I will work with some of the hard cases that they cannot and I am trained and certified to do most of their jobs when they need help. The nurses like that my volunteers and my activities reduce their workloads.

All things I have done elsewhere and there is no sense of accomplishment. There is no sense that things will be better. Perhaps this is the Golden Age of elderly. Most of the people in residences are able to pay the fees through the sale of their homes which increased in value over 100 times during their ownership. That won’t happen again. And once the boomers are no longer paying taxes but drawing on their pensions, will we all be in bunkbeds, barns with a television at the end of the room? Rotated on a spit to reduce bedsores?

So I will continue to be congratulated for providing basic therapeutic activity for a few hours each week. A few hours a week out of the one hundred and sixty eight. A tiny, tiny fraction of their weekly toll. Their time of wandering. Their time lost.

Because we heal nothing. We cure nothing. And like all the rest of them, I want to go home.

0 notes