Field Notes from a Medicare Disaster: Sixteen

The day he came home is a blur. Yet I have one strong recollection--like an overhead shot taken from a room above Providence's main door-- of me standing outside at the curb in the brisk morning air as they loaded him on a gurney into a medical transport van. There is a bright red jacket in this image yet I am not certain whether he wore it or I did. This obliteration of boundaries happens all the time when one has been part of a couple for more than 50 years. His body becomes yours, his memories are events that happened to you, and vice versa. I think I was elated but maybe that emotion was his. It's more in keeping with his nature. It's more likely I was anxious.

They bumped him in a transfer chair up the front steps to the house and into the front hall. They also brought home his wheelchair while I brought the metal walker I'd purchased for him at Providence in our car. They helped him get to the stairlift and he rode it up to the second floor. It was hard for him to get settled on its chair, hard to put his feet in the right place on the fold down platform, hard to learn how to use the controller that sends the chair up or down, hard to change the chair's orientation, to make the seat-belt work. It was even harder to remember how to turn the damn thing on after we inadvertently turned it off. With each mistake, I panicked. What if I couldn't get the stairlift going again? He'd be stranded. I probably phoned the company that installed it five times over the next three days. Yet the stairlift worked well, it was me who kept screwing up. And the bathroom was fine too, all the handholds were exactly where they needed to be, there was plenty of room for a big man using a walker.

He'd been away for two and a half months. In the US, if he'd been ill in hospital that long without sufficient insurance we'd be bankrupt. Give thanks for where you had the good sense to be born, I wanted to shout. Dad, you were right but also wrong.

 My guy seemed pleased to be home.

The first night, I didn't sleep much, listening in case he needed help. And he did.

The next morning, the first of a series of personal support workers arrived at about 8 in the morning, sent by the Local Integrated Health Network's contracted supplier of home care. A worker was supposed to come every morning for the next week to help get him up and dressed. He was entitled to one hour of care (which in real time as opposed to care time is no more than 45 minutes because 15 minutes of each hour is travel time). During that week, my guy would also be assessed by senior coordinators who would determine his actual allotment of publicly-funded care and the duration of same. It didn't matter what some doctor or hospital physiotherapist had to say about his needs, the LIHN makes its own decisions. He was in no condition to be left alone in the house, yet in that first schedule no time was allotted for me to go out for simple things like groceries.

The city is divided into regions each served by a single contracted supplier of public home care--they employ RNs, practical nurses, physiotherapists, occupational therapists, personal support workers. They are supervised by the district LIHN's care coordinators. You'd better get on well with them unless you have sufficient funds to hire private care. (The cost of private help is about $100 for a minimum of four hours. Personal service workers do not get paid $25 an hour, though they clearly deserve it. Their cut of the private take is just a tad higher than minimum wage.) I'd had a few run ins with the care coordinators of the home care supplier in my mother's district. There were many, many failures to arrive on time, and failures to assist her private caregiver as required by their own determination of her needs. I'd become used to dealing with that sort of trouble: I had learned to keep asking for the supervisor, and then the supervisor of the supervisor, going all the way up the food chain until I got to the CEO. This is not easy. Staff members don't want to attract the attention of the CEO when a complaint is involved. Yet CEO's of organizations delivering publicly funded home care generally like to keep their clients happy, and are determined to prevent them from running to the LIHN or the Ministry of Health to complain. Journalists are good at getting through the bureaucratic spread-the-responsibility-so-no-one has-to-fix-anything evasive maneuvers that result. So it's those not so good at raising a ruckus who suffer when things go wrong. As they did, and right from the start.

The LIHN's assessment personnel had been to see my guy after his previous hospitalizations, had ordered physiotherapy for a few weeks after the last concussion.  They had been notified by Providence to reopen his files and had made appointments with me to come to see him again. I remembered the occupational therapist very well, a cheerful, bright woman very determined to work the system as hard as possible to get her clients as much help as possible. The LIHN's overall care coordinator was not so cheerful, more soulful, but very able and equally determined to help as best she could. The level of help we would get would depend on their professional judgement leavened by the available budget, a budget which has barely moved over the last ten years in spite of a 40% growth in demand for help in the last five years. That budget had already been stretched to the break point by late spring because 2017/2018 was a bad flu season. Did he need physio? I thought that was obvious. At Providence they thought it was obvious too. Our doctor asked for it.  Yet the LIHN could refuse it. Did he need a specially measured walker, a specially designed wheelchair? Did he need a wheelchair at all? The wheelchair became a matter of  contention. If he was able to walk a little and wasn't sitting in it all day, why did he need one specially designed to fit his body? The need to use it outside didn't matter. He could have an ordinary wheelchair for that. The one he'd been sent home with was really expensive.

In my area, public home care is provided by a non profit affiliated with a downtown teaching hospital. In the daily forty-five minute period actually allotted to him, the personal support worker assigned to him by that organization was expected to help him get out of bed, get to the bathroom and to the shower bench where he would wash, shave, and dress, then help him get to wherever he was having his breakfast. They were also tasked to make the bed, carry down the dirty laundry or any garbage.  I only repeat what their orders said: I know because I was given a copy.

But that's not what happened.

The first morning a tiny woman knocked on the door. She was late yet actually on time, as is explained on the non profit's voice message system when you call in to find out where the hell your worker is. On time means 15 minutes on either side of the appointed hour.  I had to give her a short lecture on my guy's condition, because she knew nothing about him when she arrived, and to explain what she could expect given his unnamed disorder, how to use the new shower without getting soaked herself, where his clothes were, and his shaving equipment. She had arrived without plastic shoe protectors so I had to tell her to take her shoes off to use the shower. She didn't like that. She looked at my guy with something akin to fear. She said she did not shave people: she said she was not allowed to. So after I showered him, with her looking on, I shaved him too. She helped him get dressed, took a poor stab at the bed-making which I decided then and there I would do myself, left the laundry and the garbage disposal to me, and went on to her next client. I got on the phone and explained to the supplier's care coordinator that we were going to need a man or woman big enough to help my guy, that the small woman they had sent had quite obviously been afraid, and perhaps did not have the necessary skills to deal with a big man with movement issues on a damp floor.

The young care coordinator, a woman who spoke extremely quickly on her voice mail message, as if seriously pressed for time yet also sad and tired, said there weren't many men available, that would be a problem.

I explained that they'd have to dig up someone big enough somewhere, or there would be an accident. I explained I had ended up doing most of the showering. And the shaving.

The next day, they sent a man.  Again, I had to explain my guy's condition, had to explain about his slow movements, had to make sure the worker learned how to use the shower without getting soaked himself. This worker also said he was not allowed to shave anyone. So I did it. And I made the bed, and took down the laundry, and the garbage, and brought up the breakfast.

The next day again someone new arrived--a woman. Once again, I had to train her in my guy's issues, to make sure he got safely into the shower, to make sure she learned how to use it without getting soaked. Again, this person said she was not allowed to shave him. So I did it.

By the fourth day I was beginning to wonder why they sent anyone at all since I was either doing the work or supervising it.  While they stood behind him watching him struggle to the bathroom, I was making the bed, fishing out his clothes, then running to the shower whenever the worker called for help. Which was frequent.

On the fifth day, no one came. When I called in, I was told the worker, yet another new one, was going to be late, very late, more than an hour late. I told the care coordinator to tell that worker not to bother, I wasn't going to leave him lying in bed that long. That was the morning I discovered that I could do everything that needed doing, including showering him myself and that he preferred that I do it. And why wouldn't he? Four mornings in a row he'd had to stand stark naked in front of total strangers as they washed him. My guy is not shy. But many people are. (If it had been me, I would have said I don't care how dangerous it is I'm going to shower myself, you wait outside.) There was no time for him to get to know these people, unlike at Providence where the same small group of nurses helped him every day. I wondered: how upset would a person with Alzheimer's or some other form of dementia become when faced every day with strangers yanking them out of bed and pulling their clothes off?

And yet, looked at from the worker's point of view, they had more to complain about. Every new client was a steep learning curve. The fact that they managed to address each person's needs at all was a testament to their adaptability.  Almost all were new immigrants, most with very different styles of life in their former countries. In this job, they were poorly paid members of the precariat. They were under constant stress to get on to the next client waiting in the queue.  They had to arrive on time, leave on time, get to the next household on time and a lot of them did it for 10 hours a day, six days a week, if their employer asked them to. This would be barely manageable even if all the clients were mobile and didn't hold them up. One slow poke would blow the whole schedule. Toronto traffic is so bad that getting from one point to another on time is more than difficult. In small communities up north, the geographic range covered by personal service workers can be very large. My guy is a terrible challenge to this system. A movement disorder means he can be extremely slow getting from bed to shower and out again. Rushing will end in disaster. Forty-five minutes is not time enough to get it all done. If my guy was having a slow morning, and he has plenty of slow mornings, though they tried to conceal it most workers became agitated, keeping careful eye on their watches, which bothered him. Being a nice guy, he tried to send them on their way early, even if they weren't done.

That morning, I was tempted to tell the LIHN to forget sending workers, we'll manage ourselves. Yet I didn't. After only a week of being on call 24 hours a day, I knew I would buckle under the strain without help. Not only was I doing most of the work of caring for him, I was doing all the meals, the clean ups, the laundry, helping with his business, doing my own.  And somehow I had to get out of the house to get food.

So I kept my mouth shut.

The two senior care coordinators came separately to see him. They had both assessed my guy before. They were amazed that his parkinsonian syndrome diagnosis had been chucked out, that he was no longer on any medication, that without the Sinamet he was actually improving. This never happens to my clients, cried the occupational therapist, this is thrilling!  The other coordinator was so happy to see him doing better without medication that she promised to speak to the lead physiotherapist and beg him to send help. But she also warned me. She said: you know the people they'll send are fresh out of school and won't have much experience with neurodegenerative disorders, but I'll try to get it done. And she did. She also ordered 10 hours a week of care for the next five months, including three hours on Friday afternoons so I could do grocery shopping. But none of that dealt with the real problem, the never-ending turnover of workers, the daily need to train a new person.

The film crew arrived and shot their film ( he performed almost as well as he used to when he was an on-camera public affairs TV reporter/director years ago). By then, the junior care coordinator had sent in a new personal support worker each day for eight straight days. After the film crew went home, I got on the phone and raised hell.






I know what you're thinking: how dare you complain about a publicly funded system that cares for a person in hospital, and then, after the patient is sent home, provides trained people with real skills to come to the door to make sure that patient is properly washed, dressed, fed and any wounds attended to. It is a testament to this society's determination to take care of everybody that we have such a system at all.

But even the most well-meaning systems can break down, especially when starved of funds year after year, as the home care system has been.  And because it is starved, people who might have managed well at home if they'd been attended to sufficiently, end up back in an acute care hospital or in longterm care both of which cost a hell of a lot more. The home care system was invented to take the pressure off both, not to be part of a revolving door problem in which sick people are sent home from hospital too early and either end up right back on a ward, or permanently warehoused in long term care places so understaffed that someone like Wettlaufer can go undetected for years.

When I picked up the phone to complain, it wasn't just about helping him, it was about saving me. I had finally understood that if this pace kept up, and I got sick from overwork and lack of sleep, we would be in a disastrous situation.

I forced myself up the hierarchy of the home care provider, starting with the junior care coordinator who got the brunt of my rage, a blast sufficient to make her cry which made me ashamed. I was passed to a supervisor, and from there to another, and with each handover I kept saying: are you the CEO? No? That's who I must speak with. Finally I got a call back from a young man. He asked what I was calling about. I said: are you the CEO? No, he said, he was the CEO's assistant. I want to speak to the CEO not to you, I said. I need to speak to the person responsible for this system. I am a journalist and this experience has been so bad that I am going to have to write about it.

Lo and behold--the CEO herself called me back the next day.

After I explained what we'd been dealing with---eight straight days of new faces, eight straight days of me training each caregiver, eight days of no phone calls when the caregiver was going to be late, but with me having to call in to find out if someone was coming, eight days of carrying down the laundry, the garbage, making the bed, supervising the showering and doing the shaving-- I said I had had enough. I said this was a completely incompetent way to manage a home care system and I wasn't going to stand for it. And I was going to write about it.

She apologized. She told me stories of what happened when her own mother needed care, how she herself, for many years an RN, had been helpless to get the help she knew her mother needed. She sent me documents demonstrating plateaued funding in the face of the growth of demand, lobbyist papers arguing for more investment in home care, as opposed to hospital care. One pointed out that there might be a strike of personal care workers in Ontario this fall-- because personal support workers are getting unionized and a first collective agreement is being negotiated. Inevitably, and appropriately, labour costs were going to go up.

She promised that her organization would try to do better, starting with a meeting of  coordinators at our house. An RN would come along with them.

When they arrived, they trooped up to my guy's office.  At first they were defensive as I told them what had been going on. They weren't happy to hear it. When I told them I didn't blame them, I just wanted to know how it could be fixed, they promised changes would be made, that my guy would be assigned the same workers who would be instructed to call when they were going to be late or early, who would be instructed to provide the services required.  He would not have to face strangers every morning anymore, and I would not need to instruct on a daily basis.

I said fine, but I'm still going to write about this.

I could see they were actually pleased by that. Why? Because they don't like being unable to deliver, they don't like having to say no to the provision of care they believe will prevent their clients from relapsing,  they don't like having to ration what they know is essential. They wanted someone on the outside to shake the politicians' cages, to get things moving, to raise Cain, to get more money from the public purse spent where it's really needed, not wasted on some shiny atrium with a shiny donor plaque on a shiny new hospital filled to the brim with patients but chronically understaffed. The medical system is a human endeavor.  Machines are well and good, but without sufficient humans to manage and deliver care, they are useless.The people who provide care deserve to be properly paid and to work reasonable hours. They should not have to struggle through terrible schedules in order to make a living.

In the end, I found myself thinking the only reason this system works at all is because of the determination of the individual caregivers who try to make a go of it no matter what.

Unfortunately, and yet predictably (my Dad did predict it and he was not alone) no matter what is what we've got.