An Interlude: Why Does Any of this Matter to You or Yours?

Having tried to interest the CBC I-Team in this situation last fall, I was disappointed when they, with silence, responded in the same way that the 'Law for Public Good' section of Legal Aid had directly: 'we may see that you are right, but this is far too unique a situation.'
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While I can understand the media not getting why a travesty affecting one small dysfunctional family might apply to others, too, I must confess I am sick that a lawyer -- a well-trained intellectual with a sufficiently elastic mind -- could not see that when a serious condition such as the 'agreement of two practicing physicians in good standing' can be overlooked and by-passed by the part of the system that places seniors in care facilities (whether we call them hospitals or healthcare centres, respite homes, nursing homes, etc.), fundamental rights of citizens are at risk.

Part of the system is stacked with experts who are so used to being 'right' that they will not brook any challenges to their opinion.

"But your father has the Power of Attorney, so he has the legal right!", you cogently object.

To which I reply, as I have over and over again:

First, he is not in his right mind and full possession of his faculties. The very fact that he keeps on insisting that I have the Power of Attorney and am keeping Mom where she is proves this. Similarly, he refuses to speak with the lawyer, his lawyer, who drafted the document and who could explain this fact to him.

Second, then, SOGH tried unsuccessfully to force through their decision without him when he was still decompensated and in early recovery as a patient at the SOGH, but as soon as they realised how amenable he was to act against what he knows and can clearly ascertain are his wife's wishes -- an abrogation of the Preamble that governs the powers of the Power of Attorney document (or as I like to keep saying, hoping someone will listen, "not just there as pretty words to be passed over") which requires that all decisions made be for the benefit, in the best interest (and to the best extent possible) respecting the wishes of the Donor -- well as soon as they realised that, the SOGH orchestrators of this fiasco lied to him about the process, making use of a confused and deliberately misinformed old man to accomplish what they determined on their own was best.
       Why do I say they lied? Because they deliberately left my father with the impression that should he really see my mother languishing or suffering he could step back into the picture and resume care of her whereas we all know that is not possible and would be allowed because Homecare documented his abject failure and the hospital his subsequent decline, such that he would never be allowed to take care of his wife again. Making a decision under deliberately false information is not (drumroll) informed consent.
          In any case, the moment my father was decompensated (not even knowing how to speak for over an hour, his name or where he was for a few more, and to this day, not acknowledging how he really ended up there that evening), and this is recorded in the hospital records for SOGH Emergency Room for July 17, 2014, when the E.R. attending pronounced him decompensated, I became the Attorney for my mother. There is no script for reversal of that in the original document.

Third, and I shall be brief about this point for now: the Power of Attorney itself should never have been enacted.(There is quite a bit more to this which I may touch on in reviewing the past, but it will not help clarify things now.)  Why not? Because my mother was threatened by my father with divorce should she refuse to sign, a fact which I immediately attempted to communicate to their lawyer, only to be blocked by his secretary. Her loyalty and feelings aside, only her actions matter: she was bound to deliver the message and the law of Manitoba states that a Power of Attorney cannot be enacted under duress, which includes marital threats.

Fourth, moreover, even if we grant the validity of the document (which one should not), there is still within it the requirement that my mother be found mentally incompetent by two physicians in good standing in the Province of Manitoba. The hospital system not only ignores this, it has impeded my every effort to have my mother examined, although that is her right. They have gone so far as to state that she would have to request it herself, without anyone's help, something they know is all but impossible. In other words, they are actively discriminating against a disabled person, violation of a whole set of laws.
    Meanwhile, however, everyone seeks to keep my father happy and ensconced in his home, he who has failed 3 so-called Mini-Mental examinations since last summer and has had to have his driver's license cancelled because of his dangerous incapacity to concentrate and react appropriately, he who is on a drug meant to halt the progress of Alzheimer's or senile dementia for nearly a year with no observable positive results, he who is progressively and continually becoming a danger to himself and others.
    My mother on the other hand was last properly assessed by Dr. Eggertson 3 years ago and was found competent at that time (of course, acknowledging the significant difficulty of administering such tests to an aphasic such as my mother, who has some obvious cognitive impairment from her stroke as well as, probably, some from decline in aging).
      Why would the hospital system -- the SOGH nursing administrator and her attached social worker, the WRHA long-term care planner and lawyer for the WRHA counsel's office -- deliberately seek to validate the opinion of someone clearly not in possession of their proper faculties to make a decision for himself to make a decision for anyone else?
 
And now we get to the crux of this matter, because the answer, as more than one cynic has told me openly is this: 
Despite the large number of elderly 'clients' they have waiting, they cannot afford to let any 'escape' the 'program' if there is to be job security for the managerial/administrative level.

There will always be enough work for the front line as it were. We need more health care aides and nurses if anything. We need more well-designed beds/suites in care facilities in well-planned communities for different classifications of people (e.g. ones with special needs) who as they age have no one left to take care of them.

So why should this absurdity that my family is going through matter to you or yours?

Because it can just as easily happen to you.

Just don't pretend your P.O.A. document, etc. is more secure. Make certain that your wishes are set in stone lest some experts come by you when you are weak and vulnerable and decided that he/she knows better than you did, that the laws be damned, you will be going where he/she and his/her colleagues determine, you and any dissenters in your family be damned.

 

This statement, with its parallel conditions, should remind one of the aborted Golubchuk case some years past, where doctors wished to remove an elderly Orthodox Jewish man from life support against the family's and presumably his previously expressed wishes, using a quality of life and limit of resources rationale. Sadly, this matter was resolved with the gentleman's death and so no new law was created as the examination of what is right for the individual and for society was suspended on the legal technicality that the principal motivator of the case was no more.

Because it has happened to others before me and my mom.

In telling this story loudly and frequently to as many as I have been able over the past 10 months, I have already discovered, just randomly mind you, two more closely parallel cases. There must be more.

Ironically enough, the first encountered, a lady who used to work with my mom at Superstore, several years past practically had to kidnap her mother from SOGH and dare them to try reclaim her when the experts there at the time (including the same nursing administrator in our nightmares, apparently!) decided that the competing claims from within her family could be ignored until 'L' decided: 'SOGH be damned, Mom wants to come live with me, so Mom will come live with me.' Luckily for her and her mother, 'L'  had been gainfully employed for decades and had a house of her own. She could afford and decided to quit her job for several years to be a stay-at-home caregiver for the one who had first given her care and showed her love. After several happy, relatively healthy, and good years together, 'L' recounts that mother passed peacefully one day in her 'home', grateful for her daughter's loving care and the devotion 'L' had demonstrated fulfilling her mother's final wishes on care and accommodation.

As there is not supposed to be discrimination against the poor, and many poor folk gather for mutual aid, to rely on each other for support, companionship, assistance and even resources, and many poor folk too have disabilities or health issues, beyond a core assessment of the individuals' finances and ability to function healthily together, any arrangements made should be accessible and assessable but should not be forcing people in their right minds to live anywhere except where they might reasonably choose, given adequate means and the appropriate supports in place.

Yet even still, the other individual encountered, 'D' was willing to act as a care companion, in the jargon of the long-term-care lexicon, a category of worker, albeit a nearly non-existent option (one that should have been pursued and may yet have to be explored) that of  a 'permanent' live-in,

non-related friendly caregiver for a needy elderly person. Economic arrangements aside (as pay and rent vs. room and board, etc., these would necessarily require some negotiating), although 'D' was very attached to her elderly neighbour friend, whom she viewed like an auntie, and even though the auntie was warm to the idea, the biological family, which had some conflicting and some possibly suspicious motives, ultimately fought each other so well that since no one would credit the elderly lady to know what she wanted was the best option for her, a Public Trustee had to be appointed by the experts. So in the end, a bureaucratic stranger and not a concerned friend controlled another life.

 

 And everybody in management and administration did rejoice.

  

Because it is probably happening right now, today,

 and probably will happen again tomorrow.

 

Unless somebody in power does something now, do you doubt it?

When has a systematic abuse of power problem ever vanished on its own?

 

... to be continued in ... .... ...Part 3. Out of 'Oaks : One Step Forward?

What is happening (or rather, not): The Whole Long, Sordid Story, Part 2. Our Ordeal at Seven Oaks

Once ensconced there, originally admitted because of my father's inability to provide care and then to diagnose and treat her incontinence issues, the staff in charge quickly proceeded from suggesting, to advocating, to enforcing placement of my mother in an institution.

They did everything they could to ensure this would happen. They chose to ignore their concerns about his mental competency, given his erratic behaviour when visiting. They chose to ignore that he has never fully recovered from a decompensating seizure that he had while visiting my mother on July 17, 2014, going so far as to consult and meet with him on the disposition of his wife while he was still a patient, too. Can anyone say ironic?

In Manitoba, the law requires that even when my father trotted out his vaunted Power of Attorney document that my mother had granted him (under duress: and that is a whole 'nother tale for another time) in 2010, that my mother be assessed by 2 physicians (not nurses) who agreed independently that she was mentally incompetent (this still has not happened) and therefore subject to the decisions others, like a P.O.A., might make for her. Then again, the genius of the ladies who were trying to force my mom into an institution was such that they kept referring to nebulous spousal privileges that my father had in their eyes, ones that ignore the Charter and would even reverse the Persons Decision and make women mere objects to be tossed aside by their husbands at will.

As more proof of their malfeasance, after first claiming that my mother had been assessed by a doctor on SOGH staff, they then reversed their story and said she had been assessed by one nurse. Her doctor of record at SOGH had never entered any such examination; record of it only appeared weeks after the nurse administrator for my mother's ward claimed it existed (but she could not find it in my mother's chart or binder). On my mother's behalf, I requested that her neurologist of record, Dr. David Eggertson, the only physician who has ever yet conducted a review of my mother's mental competency, come to do a new assessment. He was willing to do this but was turned away by the hospital with the excuse that it would not be professional of him to be involved since it had been 3 years since he had seen my mother (because my father had been neglecting to make or keep appointments made, despite their importance in her health care planning) and since they had not requested him.

Subsequently, they came up with a genius new category in law: "mentally incompetent for discharge planning." In this newly created scheme, there was no room for anything such as adults disagreeing. If you didn't agree with them, see the world as they did, didn't express your wishes within their allowed limits, why then of course you were mentally incompetent. So the mere fact that my mother still would prefer that my father change his mind and allow me to take care of both of them in some kind of home-like setting (even though she knows in her heart of hearts that is not an option because of him), the mere fact that that is what she would most like 'proves' she is mentally incompetent. In my discussions with an investigative member of the Office of the Public Trustee and Guardian, this new category of incompetence was labelled "complete nonsense" and "not law", the officer adding that she would be glad to disabuse the hospital of this delusion if she were appointed to the case.

Meanwhile, back at the castle, patients in my mother's room started to inform me of the gossip that the staff were engaging in, all negative about me, even proceeding so far as to tell patients not to talk with me and disciplining one lady who repeated for me in fair detail a particularly nasty interaction the Social Worker of record had with my mother, wherein she traumatised my mother, a patient in recovery in their care (she was still shaking when I visited in the evening) telling my mother her two choices were to stay in the hospital or to go home alone (which, of course, was not true, as I could have cared for Mom at home as they all well knew). My 'spy' (so she reported she was called by one staffer over this incident) was told it was against WRHA policy for her (!) to have repeated what she heard their staff say (not about my mother, who as a patient has such privacy expectations, but about me as a family member!); staff then relocated this quite ill lady to another room. I only learned about any of this because, as a person of conscience, despite her own health concerns, she had me tracked down so that I could meet with her briefly to hear from her directly what had been said.

Other patients, including one Mr. Pollack, who was a very sharp individual with little respect for the nurse administrator or how the ward was being run, informed me of each time they subjected my mother to one of their little meetings in my absence, which they constantly contrived. The words that he used wryly still come to mind: "charade" and "farce".

Although the nurse administrator, her social worker henchwoman and eventually the patient relations officer they inducted into their machination (who had no medical training!) demonstrated absolute ignorance in communicating with a fluid or expressive aphasic patient like my mother (let alone any sensitivity or finesse), they continued to harass here even when she tried to end discussions by saying clearly enough so that other patients could hear and understand her repeating: "Go away!"

They deliberately overlooked easily accessible standard guidelines we had been taught by my mother's speech language therapist, Ms. Alison Baird (of Speechworks), herself a consultant to other WRHA hospitals (who also could have been a resource to them), and refused moreover even to avail themselves of input from the SOGH post-stroke speech language pathologist on staff. At least once every two weeks, in 'response' to my protestations of their manipulations, they continued to badger and barrage my mother in ways where they could claim they could not understand what she was indicating, or where they would try to trick her into answering the only question they wanted her to speak to: would she like to live with me and have me take care of her (as she had implored me to promise decades ago) or would she rather be in some kind of care home? (Other options were not ever raised.) Every patient in the room with my mother had heard her vigorously deny that she had ever said "no" to living with me in any of these so-called discussions. I informed my mother many times, too, that if she had changed her mind, it would not offend me and she clearly and vehemently said "no" to that! Her mind was clear, despite the staff's attempts to make it seem clouded.

Nonetheless, when I became too much of a nuisance by advocating too strongly for my mother, and brought forward the Healthcare Directive that she had signed months before her admission, a document the courts have, when more recent, routinely recognised as superseding an older Power of Attorney document when it comes to health care decision-making, instead of halting their program, the nurse administrator in charge decided it would be easier to get rid of me by filing a false accusation. Reporting on a conversation we had 6 days after it took place, on the very day when she knew I was bringing the required certified copies of the Healthcare Directive in which my mother had named me her proxy and decision-maker, making all of their machinations both illegal and moot (they had shut me out of all "family" consultations despite WRHA policy to include all relevant perspectives), she 'remembered' that I had threatened her with a gun. Or maybe. She wasn't sure.

So she filed a complaint, not with the police, as you or I might if some stranger threatened us, but with the hospital and WRHA. Using a system that is meant to govern disputes between staff members and allow the WRHA to exercise discipline over staff, she filed a fraudulent accusation knowing that if the truth ever came to light she would receive a slap on the wrist compared to the damage I could countersue her for in civil court had she attempted the same lie with the police and courts. As an innocent person slandered, I was and am incensed. I appealed to the hospital administrator. I complained to the WRHA Patient Relations Office. I demanded a lie-detector examination be conducted. After weeks of waiting while they reviewed the situation, I was told I had no rights. The hospital would do what it wanted. If my mother's condition worsened, I would be allowed to visit. Otherwise, I am banned from Seven Oaks by the decision of a lawyer, not a judge, on the WRHA staff, whose only interest is in supporting the institution, not finding the truth.

Digression: So I ask you, gentle reader, as I stated in several of my communications with these 'people', would it make any sense to threaten the one person I knew could have me banned when my principal concern was ensuring my mother's daily happiness and well-being and when I was well aware that my mother looked forward to seeing me daily and that the staff were ignoring her? Moreover, as I was told by the Patient Relations Officer, the nurse administrator had first contacted the police and they told her she should file a complaint with them. Only after 6 days of considering the blow-back to her, she filed a charge instead with the WRHA where she can never be punished for having lied. And this is not suspect? When one of my former high school charges threatened 'to return to his locker and come back and blow my head off' -- which I knew was just adolescent bravado despite this being post-Columbine, but which I was still required to report immediately to my supervising Vice Principal -- that boy wasn't removed 6 days, later but within 60 minutes!

With me banned from the hospital, my father and brother (who has long been antagonistic towards my mother because of her understanding of my illness and support, not to make light of our long and mutual brotherly hatred) signed the papers to have my mother institutionalised. They then left for Toronto, leaving my mother with no daily visitors or support.

My father and I were allowed (that is to say, I was permitted on hospital grounds for the express purpose) to pick her up on her birthday, September 11th. The beaten-down, haggard and woeful woman wheeled down to meet me was barely the mother I had last seen less than 2 months before. When this annal continue in Part 3, we will start here.

In August, I had already learned of her being ill (more on this in a moment) from another elderly female patient, who answered my mother's phone because the staff, suspecting it was me, would not assist her. This was one of their favourite games, suggested by the nurse administrator despite the promise of her boss, the Acting CMO of the SOGH that I would be allowed to call any time, and that I would be allowed to visit if my mother's health took a downturn.

Almost every night, however, the only way I could speak with my mother was to call for the Facilities Manager (the after-hours de facto director on site) who would have to go in person most times to answer the phone him- or herself, whenever they could within the course of their real and more pressing crisis-solving duties. The nurse administrator should have been reprimanded formally for causing this alone, yet nothing was done. The Facilities Managers and I eventually settled on them calling me for my mom. That just meant that I had to sit by the phone, usually for hours each night, sometimes never receiving a call from them at all (if they were too busy or my mother were asleep by the time they came to her room).

Worse though, all but 2 of the Facilities Managers on rotation during that summer were completely complicit with the nurse administrator in lying both to me and to the Acting CMO, about my mother's declining health.

When the elderly lady answered the phone in August, she, of course, knew nothing of the real situation -- that I had been barred from visiting -- so she greeted me with a good old-fashioned berating suitable for a negligent son such as she assumed I was. It was only when she mentioned that my mom, "poor thing", looked like she had welts and "boils" all over, that I recognised how awful this hospital and its staff could be.

My mother has an auto-immune disease called bullous pemphigoid (as an aside, and weirdly enough, I just discovered this increasing less rare ailment was mentioned in passing in the very first episode of the 1990's TV medical standard, E.R.). Because the hospital had relied on my incompetent father to provide them with a list of my mother's medications at the time of admission, and because they, under direction of the malfeasant nurse administrator, steadfastly refused to allow me to review any of the information on my mother that they had, they had discontinued a critical medication and through this negligence (in both the moral/ethical and legal senses) had unnecessarily caused her illness to flare up and even worse exposed her to a risk of cancer (since the medication she requires is one that must be tapered off, never just stopped). Moreover, they knew something was wrong, as they had been trying to treat what to them was an undiagnosed condition, with Polysporin and corticosteroid creams.

(How do I know something that specific, you ask? Well, not every nurse/health care aide was afraid of the wrath of the nurse administrator, who had ordered them not to speak with me at all: yet another violation of the Acting CMO's guarantee, for which she should have been disciplined, since all family members are entitled to such general information as the state of a loved one's health.

It took me 2 days and some clever telephone calling to get through the deliberate barrier of the SOGH switchboard before I could reach a day-staffer who I was fairly certain would speak with me, but more importantly, would listen and act on the information I was calling to provide. I will probably never know how she entered it into my mom's chart/binder, but by the end of the day, mom's specialist had called me to let  me know SOGH had contacted her and they were already following her prescribed course of treatment. I was so relieved that Mom was getting the remedy required to relieve her pain and suffering that I scarcely minded the ongoing lie 3 of the Facility Managers kept up that nothing at all was wrong Mom ('And who told you that?' -- imagine it demanded with menacing melodrama) and that 'of course I would be informed if there were any changes that would permit me to visit.'

Need we ask if death would have been one?

They were so efficient at covering up their incompetence and malpractice that even when my father remembered about the missed medication, the nurse administrator and her underlings pretended to him that they had been administering it all along, despite my protestations and my mother's, and despite the irrefutable evidence that the hospital's own original, undoctored (pardon the awful pun) drug dispensing logs would furnish not to forget either the testimony that would be provided by the only conscientious doctor involved in this debacle, my mother's very professional and renowned dermatologist/immunologist. God bless her for all she has done for Mom!

... to be continued


 [images, notes and links to be added]

What is happening (or rather, not): The Whole, Long, Sordid Story, Part 1. Ending Up at Seven Oaks

So why am I writing about my mother's predicament now?

Because after over a year of fighting against institutional arrogance, professional indifference, and bureaucratic inertia, I am now at my wit's end and I have no idea how to move forward when the Powers that Be can break all the rules that are out there (even the ones they wrote to govern themselves) and there is literally no court of appeal.

How does one act as the voice for someone who is 'voiceless' when one is silenced constantly by those who refuse to hear?!



Moving beyond philosophical angst and unanswerable questions, I shall try to provide the cogent summary of how my mother came to be in her present situation.

Last year, that is, in early June, 2014, my father was still trying to provide care for my mother in their home, that is their apartment, in West Kildonan. My mother was having increasingly more health problems, getting up at nights to go to the washroom and falling, requiring my father to try to lift her or to call for the emergency service that the Winnipeg Fire Department offers to assist seniors. Fairly often, as Dad confessed, he would not wake up when Mom had fallen and he would not hear whatever cries or calls she might make: he would simply find her on the floor (apparently, frequently, the cold bathroom tile), either prostate or if she had the strength, sitting up.

At the same time, she was suffering from increased stress from the changes to the homecare staff to whom she had become so attached that were forced upon everyone by the delightful bureaucrats 'managing' the homecare service for Manitoba Health.

Digression: Although Mom thought of the ladies who aided her daily, and especially the wonderful lady who was providing 'respite' for Dad, as friends, she was still receiving help from competent aides who could understand her situation and needs and with whom she could try to communicate. Like many homecare clients, we have heard (and substantiated) the stories of monoglot Anglophone staff being assigned to take care of little old ladies in the North End who only spoke and speak Polish or Ukrainian (one such lady went to great efforts to find the number of her former homecare aide to call the aide to ask if she had done something to offend her and if she apologised, if the aide would come back).

Also at the same time as the falls and the depression over the loss of her familiar, friendly "Team Ollie" faces, Mom was experiencing increased problems with incontinence. I suspected some kind of bladder infection. At the very least, I told father, it needed to be ruled out. I told mother that it was possible to treat very easily with medication once any infection was ruled out or cured. I could not get my father to do anything.

Homecare, as I was told later, was doing a wonderful job of documenting my father's increasing difficulties or -- as I was told verbatim by one Homecare manager -- "his failures to provide adequate care" for my mother for 6 months prior to the night, when just after 10 p.m., Mom had another fall and Dad decided that that was it. No discussion. No call to his son in Winnipeg to come help. Just a call to have her taken by ambulance to the closest medical centre, Seven Oaks General Hospital.

... to be continued

How did this happen? On the beginning of the end of a life ...

To begin honestly, this story, my mother's story, really should be written by her.

Unfortunately, that is not possible any more.

Despite her love of language from her earliest childhood -- when she proudly carried home 7 books each week from the Carnegie-endowed St. John's Library in the North End of Winnipeg -- despite decades working in jobs as diverse as cashier, interviewer and college instructor -- where the central element was always her beloved ability to communicate--, despite years rejoicing in talking and writing to (and for: one cannot forget her poetic celebrations of) friends and family as much as she could, despite all this my mother has lost her 'voice'.

On August 26, 2008, as I was literally heading out the door for my second day of work in a new location, I heard my mother yell "Wait. Wait." By the time, I got to my parents' bedroom, she was already down on the floor and trying to raise herself up, with a look of fear and confusion on her face mirrored by my father, who did not understand that my mother was having a stroke.




The black holes with lightening bolts represent the major points of the triple infarction CVA my mother suffered:
 (L to R) substantial damage to Broca's area; complete (?) annihilation of the Speech Motor Cortex; and,
 minor damage to the cognitive array towards the back of the brain.

Although I realise in retrospect (to be fair to myself, I realised at the time, but I was otherwise occupied) I should have been blogging about our experience as a family from this point in the past as things happened. Weirdly enough, though, while one is living through a disaster, it is surprisingly difficult to find time to jot down one's thoughts and feelings. Keeping up with the daily demands and crises takes up most of one's energy -- especially if one is not well to begin with (and I will get to my own health problems and how this has factored in) -- and finding some quiet time just to sleep or to veg out and not angst, or cry, or panic seems all that one can do.

Nevertheless, it would have been valuable in so many different ways to have created and preserved a proper historical account of our experience. It might even have helped prevent the predicament my poor mother finds herself in now.

That predicament, however, is the real subject of this blog, so I will provide the necessary background in the future, but right now, I am going to jump several years forward in this story and explain, hopefully cogently if still passionately, what all this is about.