Friday, 17 August 2018

Field Notes from a Medicare Disaster: Epilogue

The Persistance of Memory, Salvador Dali

And so there we were, home at last, improving.

He still had no neurologist overseeing his care, but we were beginning to think that might be a benefit. I had kept track of the opinions of the neurologists he'd consulted. By the time my guy came home, he'd been seen by four--and that didn't include the neurosurgeon and the doctor on the neuro ward at Providence who isn't a neurologist but might as well be. By my count, the neurologists were evenly split as to whether or not he had a Parkinson's-like syndrome. Two were for, two were against.

To recap: the first neurologist, consulted about his weird gait and what neurologists call postural instability, had ruled out Parkinson's after examining him carefully and ordering a CT scan. He'd offered no diagnosis, just said we'll see what's what after a while. But as we waited for a while to come to pass, my guy fell at the cottage and suffered a serious concussion. The physicians who attended him at St. Michael's thought he'd fallen due to a drop in blood pressure after he sat in one place for too long, got up too fast, and boom, passed out, going down like a stone. The gait issues were not considered troubling. However, 18 months later, as these and other symptoms got worse, he was examined by a neurosurgeon at St. Mike's. On the basis of that CT scan and a physical exam, the neurosurgeon thought he might have normal pressure hydrocephalus but that could not be confirmed or ruled out without doing an MRI and possibly a spinal tap test. Two months later, another fall and another concussion brought him to the attention of the third neurologist, a neurology resident at St. Mike's. After doing the MRI, taking a careful history, doing a very thorough physical examination, and a Montreal Cognitive Assessment test, this charming young man said hey, you've got Parkinsonian syndrome! A senior neurologist (with little interest in Parkinson's, or us) concurred after my guy seemed to respond well to Sinamet which apparently meant that his brain was not producing enough dopamine. So: Sinamet was prescribed and my guy took ever increasing doses for almost two years during which he quickly, quickly declined. After a bout of flu/pneumonia, and a thoroughly miserable month at St. Mike's where no neurologist saw him because, according to the internal medicine resident, too many cooks spoil the broth, he spent another month at a rehab hospital called Providence. There he began to slough off the dire effects of the blood pressure drug given to him at St.Mike's for high blood pressure-- caused by the Sinamet. While he was still undergoing rehab at Providence, he was examined by a fourth neurologist at Michael Garron Hospital. Number four, contrary to number three and number two, said "I don't think you have Parkinson's or Parkinsonian syndrome. " He proposed taking the Sinamet away to see what might result. Without Sinamet, my guy immediately began to get better.

Just before the second Sinamet test, I had managed, by virtue of begging, to get my guy moved to the top of the waiting list for one of the best movement disorder neurologists in the country. Three weeks after he came home, off we went to see her.

The movement disorder clinic is located at Baycrest, which is a hospital, a rehab center, an assisted living facility, as well as a research organization. It is due north from where we live, not all the way to North Bay, but well on its way. To get there, I had to get my guy onto the small stairlift installed on a short flight of steps from the main floor to the side door which opens flush with our driveway. From there, I had to get him into a wheelchair and roll him to the curb so he, in his wheelchair, could be pushed into a special wheelchair taxi. Being a worrier, I'd made my guy practice getting on and off that short stairlift to make sure he could actually do it. It was a much tighter squeeze than the big stairlift custom-made to fit the staircase to our second floor. He had to back on to this one which seemed to set off waves of anxiety because he could not actually see the chair behind him and he had to trust me when I said keep going, you won't fall. I'd tested it myself and discovered I'd have to hold his feet on the foot platform as the chair descended on its slide, because he couldn't. And if he didn't, they would jam against the wall.

To get this whole operation under way, I rolled his empty wheelchair out the back door, bumped it down the back steps and pushed it along the driveway to the side door. Then I ran back up the back steps, through the back door, and helped him position himself on the stairlift chair. Then I ran out the back door again, down the back stairs and over to the side door so I could hold his feet in the right position as the stairlift carried him down to the landing. Once there, he had to stand up, and, using handholds, walk out the door to the wheelchair. Piece of cake, right?

The morning of the appointment, we got it done, but it took too long. We had to send the first wheelchair taxi away and call another after we'd made it to the curb. The whole business took us about twenty minutes. We were sure we'd be late for the appointment we'd been waiting for for so long. Would they kick us out?

We got to Baycrest only a few minutes late, found our way to the clinic, a nice, modern space with easy access for people in wheelchairs. It had a small gym and a few offices. We filled out the usual forms and waited until the neurology resident, a man in his thirties from Mexico, came to get us. He was very pleasant and friendly but with a very thick accent in English which made communication a little awkward: we had to prune our speech of idioms.

He said he would do the preliminary examination for his boss. It was thorough and identical to the one done by the neurologist at Michael Garron and the resident at St. Mike's. Then we unfurled the history, or at least I did because my guy was, by this point, so tired he was zoning out. The young neurology resident seemed to find it significant that my guy kept asking me to provide the facts instead of sharing them himself. He fixed on certain facts with the ferocity of a terrier. He did not appear to grasp that this was my guy's first day outside the house since his return from Providence, and was just beginning to recuperate from two years of the wrong medication.

He hauled out the Montreal Cognitive Assessment test. I could have done the test myself in my sleep, but I'm healthy. My guy was having trouble staying awake and he did not do well. He didn't appear to be able to think his way through the connect-the-letters puzzle (you must spot the pattern and then mimic it) and he had trouble remembering the list of words which he was instructed to learn and repeat five minutes later.  (I remembered them all from the last time he did this test: apparently they don't bother to vary the test details, assuming that those who are asked to take it probably have memory issues, so they won't be able to remember the answers if asked to take it again). My guy also did a bad job of drawing the clock face. It looked as if it was melting. However, in what should have been a clue to the young resident that this test was not terribly meaningful, when he was shown images of animals and objects and asked to name them, he said "dromedary" to identify the single-humped camel depicted on the sheet.The neurology resident didn't know what a" dromedary" is, so my guy explained. I added that he had produced and directed hundreds of nature television shows, reads general science publications ferociously, became a serial inventor for which he had just been nominated as a finalist for a prestigious international award. The resident didn't really want to know about this intellectual history (oh, high functioning, is all he said). He was only interested in now. Did he have hallucinations now, did he act out his dreams while sleeping now? Did he do the banking now? No, and no, and no, my guy said. I could see the resident's eyes go wide, as if to say: ah hah!  At the end of this examination I realized I was angry. Why? I knew what he was going to say before he said it.

"You're in serious trouble," he said to my guy, which made me want to kick him.

"I can tell you right now," he continued as he gathered up his notes with something like glee on his face, " you have Parkinsonian syndrome!"

That made it three neurologists in favor, to two against. But notably, two of the three in favor were young neurology residents and the third, the senior neurologist, apparently didn't know that eating dairy products interferes with the uptake of Sinamet which has been known for thirty years.

The resident disappeared to lay out his findings for his boss. We waited for forty minutes before we were called in. My guy was now not only tired but hungry.

The senior neurologist, his boss, was a charming and intelligent woman who asked interesting questions. She apologized for keeping us waiting and explained that they had been having quite a debate about her resident's diagnosis. She did her own physical. I told her I had questions as to why no one wanted to consider that his symptoms might be due to traumatic brain injury or deranged populations of gut bacteria. She told me to please hold my questions until she had asked all of hers, but to give her her due, she did come back to them after we recounted the history one more time. She acknowledged there is interesting work on the relationship between gut and brain. As to whether his symptoms were the result of traumatic brain injury, she thought it was possible but there is not much one can do for that. She was interested to hear of his improvement after the Sinamet was stopped. She was interested in the Montreal Cognitive Assessment test results, and wondered if we would mind going to see a colleague of hers who might be better able to figure out what was going on in that regard. She said she'd have her staff set up that appointment. She asked how much help we were getting from the LIHN and when I said 10 hours a week, she said she would try to get us more. (She did try, but failed.) She then had her assistant make a follow up appointment for November, many months away. We had thought we would work with her clinic's physiotherapists in the interim. We made an appointment for the following week but cancelled it when we realized how hard it was for my guy to get out of the house. Besides, the LIHN physiotherapist had agreed to come and do an assessment: when he arrived, he decided he would work with my guy himself rather than send in a junior. He came to the house for six sessions and was very helpful. We switched to a private physiotherapist after that, a man who had worked with my guy before he got the flu and agreed to come to the house.

When he came the first time and we told him what had been going on, he said: "I always knew he didn't have Parkinson's, or any syndrome like it, no way."

One of the nurses at Providence had said the same thing.

What did they see that the neurologists didn't?

Improvement continued, slowly, slowly. At first it was two steps forward, one back. Then bad days came every fourth day, then every fifth, sixth, seventh and so on. We were pretty sure this was due to daily physio exercises, careful diet, 12 hours sleep a night, vitamins, wild salmon oil, and no medications. My guy kept saying he felt as if he was healing.

In early May, a few weeks after our visit to Baycrest, we got a letter from the office of a neurologist at Sunnybrook Hospital. My guy was offered an appointment for mid July, 2019.

I phoned Baycrest and left a message for the movement disorder clinic's nurse. I said: July, 2019 is 16 months away. My guy is 75. Who knows if he'll even be with us then?

Another appointment letter soon followed, this time from the office of another neurologist at Baycrest, the same man, as it turns out, who is the friend of the friend of my cousin in Israel, the one who said he couldn't get his own patients moved to the top of the movement disorder clinic's wait list, you'll have to wait your turn. His office offered my guy an appointment in June, 2019, 15 months away.  I looked up his publications. He seems to be interested in the clock face portion of the cognitive assessment test. I frankly did not see how that could address my guy's movement problems and no one at the clinic called back to explain the connection.

But that made me wonder: did my guy's sense that he was healing include his capacity to draw clocks? I asked him to make one saying 2:30.  He drew a near perfect circle, put the numbers in the right places. The hands were drawn the same length, and the numbers were not laid out with the precision he always deployed before he became ill, but it was clearly a normal clock, not a Salvador Dali version like the last time. I asked him to do the finger articulation exercise the neurologists had asked him to do when they examined him. The left hand was fine, the right still slow, but he could make each finger move appropriately. I asked him to stick out his tongue to see if it quivered, a test done by the speech language pathologist when looking for problems associated with Parkinson's. No quiver. The last time I'd asked him to try it, it had quivered.

We got a call from Baycrest saying that someone had cancelled, my guy could have an appointment with the clock face neurologist in a week instead of having to wait until June, 2019.

I asked him if he wanted to go.

Forget it, he said.

Friday, 10 August 2018

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.

Friday, 3 August 2018

Field Notes from a Medicare Disaster: Fifteen

The lead physiotherapist didn't return from her ten day vacation until after the Sinamet withdrawal experiment began. By then, my guy was walking again. She was, to say the least, surprised. At first, he was only able to take a few steps while someone (me) scurried behind him with a wheelchair in case he lost his balance. Then, in a triumph of the will, he made it on his own two feet from his bedside to the hall, about twenty steps. I could hear his feet as they slid across the floor, I could see his knees buckle and wobble, and he was horribly slow, but he did it. A few days later, he was able to walk to the door and go a few meters down the hall. His gait was still awful, there were many freezing moments, but from time to time, to my amazement, his feet hit the ground heel first almost as they used to before his problems began.

This was spectacular improvement. The neurologist at Michael Garron and the doctor at Providence had been right. He didn't have Parkinson's or Parkinsonian syndrome.  He had something, but not that. He was back on the path to improvement through hard work. I was thrilled.

Yet every now and again I was also overcome by fury.

I was furious at myself. I couldn't believe I had been so blind to the obvious for so long. It was now clear that his rapid decline coincided with the introduction of Sinamet. Increasing the dosage to "help" him had only made him worse. It had gone from three pills a day to a minimum of five, more when required, in less than 18 months. The more I gave him, the more his decline picked up speed.

I cursed myself as an idiot. Why hadn't I connected the decline to the drug?

I was also furious at the charming young neurology resident, the one we had liked so much, who had clearly made a diagnostic error, yet somehow convinced the senior staff on the ward that he was right, and convinced the neurosurgeon to back off doing a spinal tap to test for normal pressure hydrocephalus. He had done this in spite of real images of my guy's brain which had led the neurosurgeon to suggest that test. By contrast, he had relied for his opinion on a combination of physical exam, a paper test, and intuition--in other words, not hard evidence, more like educated guesswork. Why had the senior neurologist in charge of my guy's care not been alarmed at the speed with which his condition worsened? On reflection, it seemed obvious that it wasn't just that his interest lay in epilepsy and not in parkinsonism. It was likely because leading minds at St. Mike's, his among them, had leaped to the wrong diagnosis and then felt a need to defend it. And so he failed to consider new information in any other light. My guy's need for more and more Sinamet to get less and less benefit was construed as par for the course.  Sinamet is not a cure and eventually fails to work.  So what if it failed to work quickly? He'd said the prognosis was " worse." This was what worse looked like.

And the fact is I too got stuck in the parkinsonian frame. Having been given a diagnosis, I shoved everything I knew about his medical history into that overly capacious narrative. It all fit.  Though my guy's gait symptoms appeared after he turned 70, which is considered late, those who get Parkinson's late do tend to decline more quickly. Several groups have shown that it may be an unhealthy balance among the microbial populations in the gut that causes Parkinson's. Mice can be made to exhibit parkinsonism by deliberately altering their microbial populations. Most people who develop Parkinson's, usually between the ages of 50 and 60, have had prior gut issues. My guy had had prior gut issues.  One Australian scientist is certain that Parkinson's is induced by an H. pylori infection, the same bacteria known to cause stomach ulcers, and that this can be cured with a complex course of antibiotics. My guy had never had an H. pylori infection, but he'd had all kinds of other ones having to do with his teeth, and another recent paper proposed that Parkinson's is the result of infection by an unknown pathogen which makes its way to the brain through the vagus nerve. Researchers at Aarhus University did a survey of all patients in Denmark who had had their vagus nerves severed between 1977 and 1995. (This procedure was once a relatively common treatment for stomach ulcers.)  Few who had their vagus nerves completely severed developed Parkinson's, though it is expected to occur in one person per thousand. Another large group of patients whose vagus nerves were only partially severed were much less protected from Parkinson's. (See:  Vagotomy and subsequent risk of Parkinson’s disease” by Elisabeth Svensson PhD, Erzsébet Horváth-Puhó PhD, Reimar W Thomsen PhD, Jens Christian Djurhuus DMSc, Lars Pedersen PhD, Per Borghammer DMSc and Henrik Toft Sørensen DMSc in Annals of Neurology. Published online June 2015 doi:10.1002/ana.24448.) It used to be considered unlikely that pathogens would find a path to the brain: the immune system was thought not to extend its reach beyond the blood brain barrier because that barrier was mostly sufficient to the task. But that view is changing under the pressure of new facts. As the cover story of the August 2018 issue of Scientific American shows, there is clear evidence that the brain and the immune system are completely intertwined, that pathogens do find their way to the brain where the immune system goes to work to take them out. Even my guy's migraines in middle life fit the parkinsonism grab bag, not that anyone asked him if he'd ever had them. In his forties, he was often laid low by migraines so severe he threw up. Over the last six years, several epidemiological studies have shown a strong association between mid life migraines and late onset parkinsonism. The first such study published in 2012 was done on an Icelandic population. My guy is of Icelandic heritage on his mother's side.

And yet. There was a simpler explanation for his symptoms. While medicine is more art than science, it is nevertheless useful to apply to diagnoses that great science rule of thumb called Occam's razor-- the simplest explanation is probably the best. He'd had his bell rung several times when playing hockey and football in his youth, and he had had two concussions in the last two years. Traumatic brain injuries could well have caused all the symptoms he displayed.

If my Dad had been around he would have been suspicious of the diagnosis from the start. He would have said get a second opinion from someone who has treated a lot more cases of Parkinson's than a young neurology resident. Of course in my Dad's day, that second opinion would have happened in the hospital. In his day, hospital patients' conditions were considered weekly by students and senior staff who walked the wards together in a process called rounds. About once a week, doctors and nurses and students would go from one patient to another, reviewing each file, talking to the patients and questioning each other as to diagnosis, treatment, and prognosis. Such debate allowed some mistakes to be caught and corrected. But nowadays, at least in Toronto, not all teaching hospitals have formal rounds, or so I was told at Providence. Why not? Too many patients, too little time.

Before we went to the appointment with the neurologist at Michael Garron who threw the diagnosis of parkinsonian syndrome out, I had asked a cousin in Israel to ask a Canadian/Israeli gerontologist friend of hers if he had any protectzia at Baycrest that could help my guy get in there faster.  Protectzia is a Hebrew word for exactly what it sounds like, a form of protection from the dead hand of bureaucracy. Israelis trade in personal contacts and favors to get to the head of the line.

Her friend asked a colleague/friend of his on staff at Baycrest (another neurologist) if he could help. But the word came back that the colleague/friend couldn't push his own patients to the top of that clinic's line either. We'd just have to wait like everybody else. This is both the upside and downside of being Canadian. We believe in fairness. We frown on queue jumpers. On the other hand, he'd been waiting for the clinic to let him in for almost two years.

So, in despair, I had decided to beg. I had called the clinic. A lovely, kind woman took my call. I explained what had happened since the referral was first sent, how my guy had had another fall and another concussion, how he had then been struck down in January by the flu, endured a near death experience in a major teaching hospital, was still, after more than a month in rehab, barely functional. We had been dealing with precipitous decline for almost two years with very little help. Please, can you help! I said.

The woman told me he was number 10 on the clinic waiting list, but she would try to move him up. In any case, he would probably get an appointment some time in June.

She called me back a week after the Sinamet was withdrawn. My guy could have an appointment at the end of April if I could find a way to get him there.

I had to tell her that everything was now in flux: the neurologist at Michael Garron had disputed the diagnosis and the Sinamet experiment had proven him right. We don't think he has it anymore, I said. We don't know what he's got. You guys do Parkinson's and parkinsonian syndrome. Can we still have the appointment?

I didn't hear that, she said. Just bring him in.

The stairlifts went in on time. The bathroom was finished the following day. I'd somehow gotten everything done.  He'll be so happy to know he can come home, I thought, as I drove out to Providence to give him the good news. He'll have good meals to eat, things to read, people to see, life will improve.

We're going to send you home tomorrow, the social worker said to him, after I told her we were good to go.

Don't think I'm ready, he said, to my shock.

Why not? I asked.

Just don't think I can do it, he said.

The doctor came in to see him later that afternoon.

Don't think I'm ready to go, my guy said to the doctor.

Sure you are, the doctor said, smiling.

No, my guy said. I don't think so.

But the film crew is coming, I said. They'll be here in a week. We've got to get you comfortable at home before that.

No, said my guy. They can shoot here.

Look, the doctor said. Everything's ready for you at home. You can do it. You'll be fine.

No, said my guy. I don't think so.

Desperation began to creep into the doctor's voice. Here's the way it is, he said. You can't stay here. Other people need this bed. Another patient is coming tomorrow.  If you don't go home, you'll have to be sent to long term care, and believe me, there won't be any good conversations to be had over there. Think about it.

That brought my guy up short. He'd grown used to nurses and doctors close at hand, ready for any eventuality. He'd grown used to the intimacy of this place, to the good conversations he had with his visitors and his roommates' visitors, with the nurses, the students, and especially with this doctor who he really liked. And perhaps he was more than a little worried about how I'd do as his permanently on call nurse. He had every right to worry about that. I was worried too. Yet his reluctance still surprised me. He'd never doubted his own ability to do anything before, or if he had, he'd hidden it well. I am the one who is the chicken. The worry wart. The one who plans ahead for any eventuality. He's the guy who always rolls with whatever flows .

Please, I said. Try.

Okay, he said. I'll try.

But he didn't look happy.

Friday, 27 July 2018

Field Notes from a Medicare Disaster: Fourteen

As the days and weeks went by, my guy made slow-- achingly slow-- progress. Context is everything:  he'd arrived at Providence unable to even turn himself in his bed, so it was great progress when he got to his feet in the gym (okay, yes there were two physios on either side of him, and he was holding on to a walker with white knuckles, but still).  It was also progress when, with the aid of what is called a saskapole, he was able to pull himself on and off his bed and into and out of a wheelchair using his own muscle power instead of the Hoyer (something he began to do not long after they stopped the laxatives he didn't need and the blood pressure drug that made him dizzy). When the saskapole was first put up in his room, at his insistence, but against the better judgement of his physiotherapist, he got cocky and tried to use it without a helper: he ended up sliding to the ground like a talent-free pole dancer while his roommate pressed the help button.

Gradually, he began to take over more of his own care, shaving himself, washing himself in the shower, achievements proudly reported by his nurses (he put on his socks today!) who were great cheerleaders. But there was no hiding where everyone at Providence thought he would get to in the long run: the occupational therapist wanted us to order a wheelchair designed just for him because that was his future. What else to expect with the diagnosis of a neurodegenerative disease?  There could only be regression. He would never be as able as he'd been before he got the flu when he'd climbed up and down the stairs several times a day, and did it more easily than walking. They wanted to teach him how to "walk" in a wheelchair using his heels and legs to pull himself along, rather than his arms. The lead physiotherapist had a theory that relying on his strong upper body was a mistake, that he should work hard to rebuild his legs. And this turned out to be the correct strategy, as you will see, though the results would surprise her. I measured the door openings at home to make sure the bathroom reno would permit a wheelchair or commode chair to roll in and out and ordered two stair-lifts, one to an outside door, one to the second floor, because, so far as the physiotherapist and the occupational therapist were concerned, there was no way in hell he'd be able to climb or descend our stairs again. It was suggested that we might need a saskapole by the bed and in the bathroom too.

In other words, as a friend of mine who died young from a medical error used to say: situation bleak.

And yet: as I ran around doing the things that needed doing I refused to dwell on bleak. The fact is I didn't really believe the diagnosis and so I didn't really believe the prognosis either. But truth is more than facts. The truth is I could not get my head around the notion that he would not improve. And neither could he. We have both spent our lives doggedly working at difficult problems until we conquered them or failed with honor. The belief in the inevitability of progress through hard work is a habit of mind rooted deep in both our childhoods. ("Just put your head down and bull your way through," my Dad used to say. "If at first you don't succeed, try, try and try again," his Mom used to say.) We could not just shake off our belief in that belief. and besides; he was improving daily, if only in tiny increments. There were good days and bad. First he had a good day followed by a bad. Then he had two good days followed by a bad. We thought he could do stairs again, that he would do stairs again if they would just let him try. But they didn't want him to try, not without big people standing by. We didn't see the virtue of building the legs and letting the arms go to rack and ruin: we asked if he could do weights. No, they didn't want him doing that either.

We were directed instead to practice using the wheelchair, and later, getting in and out of a stairlift.  Providence has a small stairlift set up on a short staircase in a big room on the basement level of the main building. He practiced getting out of the wheelchair, using a walker, and then getting himself on and off the stairlift. It went well. He smiled and waved like the Queen as he sailed up and down again.

One day, the wheelchair people brought in a snazzy one for him to try, much lighter than the generic wheelchair he'd been using, with cushioning designed specifically for him. I had to learn how to disassemble and reassemble it in order to get it in and out of a car. But at least I could lift it. Standard wheelchairs are very heavy. The company that would actually supply it, with a government subsidy of 85% of its cost if the Local Health Integration Network officials approved (not a forgone conclusion as I would discover), is also a listed supplier of other needs like handholds to screw into door frames, like commode chairs that can roll right into and out of a shower, like a saskapole. Each for a price. A hefty price. The wheelchair, even with the subsidy, had a really hefty price. People who have no money do the same thing with these devices that they do with prescriptions for medications they cannot afford: they don't order them. The medical aid business is growing almost as fast as funeral homes what with baby boomers learning first hand that aging is not for the faint of heart and that death, unlike taxes, actually is inevitable. (Taxes, as the rich know, can be avoided by means of incorporated shell companies in tax havens where the sun always shines.)

About two and a half weeks after he was admitted to Providence, the social worker on his floor made an appointment to discuss his discharge date. They wanted him out by the 23rd of March, one month after he was admitted. That discharge date had been on the weekly schedule set out on his bedside table as soon as he arrived, long before anyone knew what his rate of recovery might be. Apparently, they intended to stick to it come hell or high water. I explained that the bathroom reno might take more time, and he couldn't come home if he had no bathroom. Similarly, we had to wait for the stairlift which had not yet arrived from Britain. Also, I told her I wasn't sure how I was going to manage even with the finished bathroom and a stairlift. He needed help with everything from getting to the bathroom to dressing to getting to bed. While I could screw handholds to door frames so he could haul himself where he needed to go, there were no young nursing students available at our house to lend a hand when needed. I work, I explained. I cannot be a full-time nurse.

I wasn't to worry about that, she said, help would be made available through the Local Integrated Health Network. But not for more than 45 minutes a day if my mother's experience was any guide, I said. I  begged for at least another week past the original discharge date. I had no idea that begging was not necessary: I could have simply refused that date and refused any transfer to another facility, and they would have had to accommodate us, as the story below makes clear. I explained to the social worker that a film crew was coming to shoot a film on him at the end of the month, so would it okay if they shot it at Providence ?

They had never had such a request before, permission had to be sought, she said. The care coordinator seemed particularly pleased at the prospect.

In the meantime, roommate John was going home on weekends, although his blood pressure was being driven up by stress at home. We heard all about the problems of his life, just as he heard all about ours. One day I arrived to find his wife very upset. She was an admirable woman in many ways, not least because her fingernails were always perfect in spite of the hard work she did all day. She wore her hair in a ponytail and dressed in oversized sweatshirts as if in her own mind she was still a lithe teenager hanging out with friends after class. She was feisty. She was kind. She was smart. She was running herself into the ground trying to take care of everything and everyone she cared about. She said John was going to be moved to another room down the hall, a three bed room. He was unhappy about it. I was unhappy to hear it. He and my guy had each other's backs, for one thing. Our families enjoyed each other's company for another.

Why? I asked

A man with insurance entitling him to a two bed room is getting this bed, said his wife.

But we don't have insurance either, I said.

A rebellious/defeated look flashed across her face. It said, without words, that the haves are always treated better than the have-nots in our everyone-is-equal medicare system, and that she and John are have-nots. When John got back from physio he said that if he didn't like the new room, he'd just go home and not come back.

A few nights after John moved, my guy was awakened by a bedlam of grown men bellowing at each other.  Apparently John had come in late and turned on his bed light which disturbed the man in the bed next to him, a man who had been in that bed for no less than two years, a man who steadfastly refused to be discharged from Providence and gave new meaning to the word difficult. When I stuck my head in to see how John was doing the next day I found him in a dark and crowded space. He said he was doing fine. I said I'd heard he'd been in a fight. He grinned and said he liked a fight. Not good for the blood pressure, I said. Yeah sure, he said. Did I know the long wait for help between 4 and 11 p.m. was happening again? He couldn't understand why. The fix was so simple and wouldn't cost Providence a nickle. They just needed to bring on a second shift of nursing students between 4 and 11. Nursing students must do rotations in hospitals as part of their course work. There were more than enough students to go around.

Brilliant, I said, I'll go and suggest it to the care coordinator.

So I hunted down the care coordinator and gave her John's suggestion.

Great minds think alike, she said, we've just started to move on that. Would you like to be on a community advisory committee?

I don't live in this community, I said, and besides, it was John's idea. Why don't you invite him?

Her blank face made it clear she had no interest in John at all. I'll think about that, she said.

She may have thought, but so far as I know, she did not invite.

I arrived one morning to find the new roommate on John's former side of the room, a man in his early fifties. Call him Tom. He was sitting in a wheelchair beside his bed, staring at nothing. His TV was not turned on: it was broken and no one had come to fix it. He had no reading material. He had spectacular tats that run up and down both arms and across his chest, the kind seen on made members of the Russian Mafiya. As he was wearing basketball shorts and a sleeveless shirt they were on full display. I wanted to ask him about them and about his life in general but he'd had a stroke that was so bad he could not speak. He could barely swallow: the speech language pathology people kept bringing him jellied liquids instead of water to drink, though his lunch tray had had things on it that he shouldn't have had. When his meals came, he choked, and choked, and choked, sending me running down the hall repeatedly to find a nurse to clear his airway. As we would learn, he had been in this state for months, first at another rehab hospital, then at home. He'd spent most of the last year on a bed set up in the family room.

I didn't see any of his family for some days. I wondered, at first, if he had one.

Then his wife appeared one afternoon with his mother. Their problems made ours look small. First, they don't live in Toronto but in a smaller town east of the city. Tom's wife looked significantly older than her years. Short, spikey hair, makeup to hide exhausted eyes or at least to avert attention from them, a tad overweight, desk-bound overweight. As long as she was in the room she never stopped fussing over him: he hadn't shaved, hadn't had a shower, she determined these things asking him yes or no questions which he answered by affirmative or negative nods. She spoke in a loud voice, an irritated voice which I recognized because the same voice kept emerging from my own mouth whenever I came in and found my guy in bed, or his physio cancelled. She had found Tom in need of changing so she went charging down the hall looking for his nurse. I'd grown less angry about that sort of thing, mainly because it happened less frequently than when my guy was first admitted. But Tom was new to Providence and she'd been managing his care to her own high standard at home for almost a year in spite of the fact that she also had a full time job as an investigator. She'd had their family room wired with video cameras so she could check on him from her desk at work.

Her husband, she explained when she came back, had been an undercover cop for years, on a drugs and gangs beat, which is why he had those tats, and probably why he'd had the stroke, it was all those years of unbelievable stress, of living a lie every day and wondering when the people he was setting up to be arrested would figure that out and kill him.

His mother, a sweet woman with a June Cleaver face told me later, while Tom was off in the gym, that Tom had been athletic all his life, played every sport there is, and that after his stroke made it impossible for him to walk, let alone run, he'd just cried, and cried. You mean he felt defeated? I asked. I could see that some days he refused physio and just stared at the TV. Yet as the days went by, the physiotherapists helped him get better control of his body and the speech language pathologist taught him how to control his breathing so he could utter a few words.  Though his choking continued, the nurses taught him how to make it stop on his own.

As I watched his progress I began to think Providence was living up to its name.

 I arrived at Providence at 8:30 in the morning to take my guy to his appointment with the neurologist  at Michael Garron Hospital. His day nurse, a tiny woman who was fiercely attentive to her patients' needs, who did everything she could to make things go smoothly for them, had put him at the top of the shower list. Though I arrived early, he was ready to go.

I haven't said enough about the nurses at Providence, both male and female. There was a terrific male nurse who had been a doctor before he immigrated to Canada from Albania in order to better the lives of his children. He'd figured it was faster for him to get certified in Canada as an RN than to redo medical school and wait in line for a residency. So he had sacrificed himself, and yet he was not bitter. His children were doing very well at school, thank you. He made it his business to buck up the spirits of his patients whenever he could, especially the men who were so downhearted at the loss of their strength. When my guy pulled himself along in the wheelchair in the hall, he'd praise the smallest improvement. Then there was the tiny Philipina who had two children at home, but worked most days without stopping to sit down for lunch, worked until her skin took on a grey tinge from exhaustion, then went home and worked some more. And how about the woman from the Caribbean, tall, slim, who handled my guy without breaking a sweat, always with a kind word, always encouraging. And there were so many students who came, in their burgundy uniforms, from everywhere on earth, earnest young men from Pakistan, young women from Brazil, from Somalia, from Ethiopia, some wearing hijabs, some with their hair swinging free, all with that inner glow that comes from helping others, that comes from knowing you can. It's a noble calling, one of them said. I coudln't remember the last time anyone I knew used the word "noble" in conversation.

We went downstairs and out into the brisk morning air to wait for the wheelchair taxi which arrived exactly on time. The driver rolled him in his wheelchair through the van's back door, fastened his chair to the floor, and off we went.

The neurologist' s office was off a dark hall lined with patients filling all available chairs. The neurologist kept us waiting long past the appointment time, but I didn't worry because I had brought a Sinamet with me in case we had to wait past the time when he was supposed to take it.

The neurologist was a tall, lanky man in his middle forties. He made it clear right from the start that he would not be taking on my guy's case. I don't do Parkinson's, he said. But  perhaps we could tell him what had been going on?

We raced through the issues, explained that we'd had a problem with the neurologist assigned by St. Mike's, and gave him the whole story as quickly as we could.

Would you let me examine you, he asked.

That's why we're here, said my guy.

Carefully, slowly, he went through the same physical tests done by the neurological resident at St. Mike's which had produced a diagnosis of Parkinsonian syndrome.

"Well," he said. " I don't think it's Parkinson's or anything like it."

That's what the very first neurologist said, I said. He'd ruled it out. And the doctor at Providence said the same thing.  But if it isn't Parkinsonian syndrome, what is it?

"I have no idea," he said.

Well would you take me on, my guy asked. I like you.

No, he said.

Something made me wonder if he had tangled with our former neurologist, or had some fundamental disagreement with the way neurology is managed at St. Mike's

Would you care to comment on the fact that a resident made this diagnosis and the neurologist we were assigned is an epilepsy specialist?

No, he said.

Is this about medical politics? I asked.

I can't comment on that, he said.

Which was of course a non denial denial and in my world, the equivalent of a yes.

Well, what should we do? My guy asked.

I think we should do a test while you're at Providence with nurses and doctors to help you, where you're safe, he said.  I want to run an experiment.  Let's stop the Sinamet and see what happens. If you get worse, the original diagnosis might be correct.  If you don't, well....

You mean stop the pills right now?

That's right, he said.

Twenty four hours later I came to his room to find him sitting up in his chair with his ankle over his knee, the way he used to sit, but which he hadn't done for months and months. His voice was stronger, more his normal register. And there was something else, a brightness to him that I hadn't seen for a long time.

You're feeling better, I said.

Right, he said, with a grin.

When Daughter Number One came in she was astonished.

His voice, she said, the way he's sitting, the way he's talking, it's like Dad's back.