Yesterday my father wrote an article in defense of Israel against the latest onslaught of media lampooning. Not many of us ever take the trouble to write but that’s not quite what makes his article special. Nor is the fact that Zac, is 90 years old and he wrote it on the eve of a dangerous pre-operative procedure. Though of course, his ability to focus under such stressful circumstances is impressive.
What makes his article most special is the fact that he wrote it at all; that he could research and write such a learned piece of work after the terrifying illness that knocked him for a loop for more than six months in the last year and from which it has taken him a further six months to fully recover. It means he is able once again to think clearly; to concentrate, analyze, remember, bring facts together, and work up a cogent argument to support his case. Only a few months ago his thought processes had become so deeply fragmented as to herald the onset of irreversible dementia.
His illness was a freak; caused – it appears - by poor medical treatment: a passive physician, an inability to see a developing pattern, a helpless response to symptoms until they’d spun so far out of control that my father, a courteous and mild-mannered gentleman, became a danger to me, to himself and to others. An unnecessary illness; it is all the more frightening because it could happen to someone you love. Indeed, it could happen to you.
Zac has lived with serious calcification of his aortic valve for some 10 years. At 84, he was referred for valve replacement, a procedure that is not without its dangers. During the workup to surgery his specialist, called me. “As you know,” he said, “this is a very serious procedure and although we do have successes even with a man your father’s age, there is still a significant risk.” He then began to weigh the risks against the potential benefits. He asked about my father’s quality of life. “How does he manage with everyday tasks? In what way does his heart condition limit him? Is he able to walk… to get about… to take care of his basic needs?” Well, apart from some heavy breathing when he walked up a slope, my father was fit, exercising daily and living independently. At the other end of the line, I could picture Dr. G. scratching his head as he said, “I tell you,I would delay surgery for the time being. When your father tells you he’s had enough; that he can’t live like this; that he can’t breathe when he walks and that his life isn’t worth living – when he feels surgery is his best option, call me again.”
It so happened that at the time, I was researching the benefits of exercising in water on a treadmill. My reading impressed me with the wonderful benefits of water, especially for people with mobility handicaps and heart illness. Whereas on land, one has to work hard against the force of gravity, in the water one is buoyant and able to make a wider range of movements with similar aerobic effect. The buoyancy also reduces the stress on the heart.
At first Zac was reluctant to swim; he hated the cold water and he hated getting wet. But when we found a temperature controlled pool, he agreed, finding that the exercise did indeed give him a sense of well-being. Gradually Zac increased his swimming time, averaging nearly an hour 4-5 times a week and becoming even more fit and strong. At his annual heart check, his cardiologist would smile in wonder: the calcification remained, but Zac was fit and active. We hoped we might delay the surgery for ever.
Then, ominously, the situation changed. Dad’s regular blood tests began to show a drop in his sodium level. With each blood test and follow up, I would ask his doctor what we should do and he’d say, “– just let’s watch the situation”. Once,when my father was hospitalized because he didn’t feel well, the discharge report made a special note about his low sodium level. But despite my asking about this repeatedly, his doctor took no action.
One day Zac told me he could no longer feel his legs. “It feels strange,” he said, “like I’m not in my body. Like it doesn’t belong to me.” Though puzzled, he didn’t want to see a doctor because the sensation came and went and it was probably unimportant. But a few days later, I found him looking distinctly disheveled, hunched in his lazeeboy chair, his cat on his lap and his eyes glassy. “What’s up?” I asked.
At his distant reply I broke out in a cold sweat.
He said, “I’m nothing.”
I laughed nervously, “What do you mean, ‘nothing’ Dad? Don’t you feel well?”
“I’m not sick and I’m not well. I’m nothing. I don’t exist.”
“Of course you exist,” I protested, smiling and wondering, “Where’s this going?” “Here you are, right in front of me. How can you not exist?”
“I don’t exist. You don’t exist either. We’re nothing.”
“You mean like you felt the other day, when you couldn’t feel your legs?”
“There was no other day, it never happened. We don’t exist; we’re not even having this conversation.”
“Of course we are,” I respond firmly. “I’m here and we are talking – look at me! What do you see?”
“…something that appears to be a person …but really isn’t.”
“So what am I?”
“Nothing – you don’t exist.”
“But that’s nonsense – I exist. I know I exist. Don’t you know me?”
“You seem a nice enough person but I don’t know you and you’re not there. We’re not here and we’re not having this conversation. Nothing exists.”
The conversation was circular. Whatever I said, Zac countered by saying there was nothing, there was no world, no apartment, no chair, no table, no cat, no parking lot - no nothing. I could not prove to him that we existed and my father was sure we didn’t.
This was the sudden onset of a period of intense and changing delusions and mood swings. Sometimes he was vacant, absent, slow and weak. At other times he grew manic and super-energetic. Once he decided that he was not hard of hearing, though he’d been wearing an aide for years. Nor did he need glasses – he could read everything perfectly well without them (and indeed, suddenly he could!) He wanted to tell all the people he knew that they didn’t really need glasses, that all their visual and hearing aides were part of a grotesque hoax to get them to spend money. He wanted to sue the technician at the Institute in New York where he’d bought his hearing aide some 10 years previously, because it was an expensive article that he really didn’t need.
His doctor came to see him and tried to persuade him that what he believed was erroneous but my father’s world had already discredited him. The Dr. prescribed medications; Zac refused to take them. He prescribed blood tests but Zac would not go to the laboratory. When a nurse was sent to take bloods at his home, he refused to allow the woman to enter his flat. He threw out all his medications including blood pressure, thyroid and cholesterol and the only way I managed to get some into him was to dissolve those deemed essential, in his tea in the hope that he wouldn’t notice that it tasted strange. Fortunately, from about that time, he also seemed to lose his sense of taste and smell.
I could fill a book with descriptions of the delusions that dominated my father’s mind. For weeks he believed he was dying – sometimes he was sure he was already dead. He was not hungry and would not eat or drink. He also stopped washing himself and refused to allow anyone to clean his home. He began emptying his flat, throwing his possessions away; he threw away everything moveable: furniture, pots and pans, linen, towels, clothes, his printer, his personal documents, files, papers – every book on his shelves. Daily, I’d go to the garbage room to salvage what I could and then I’d take his possessions to my own home, filling my cupboards with them. Many things simply disappeared, including his identity documents, credit cards and telephone – we are still paying the price for things he lost or threw away and even now, whenever he can’t find something, he calls me in a panic, saying, “I think my illness has returned. I seem to be throwing my things away!”
When he hadn’t washed for too long, I insisted that he shower himself and said I would not leave until he did. Sitting on his bed and speaking in a low drone, he said he would. I went to the lounge and paged through the newspaper. Five minutes passed… ten. When I went to check on him, I found him sitting where he’d been left, on his bed. “I thought you said you’d wash!” I said. He said he had. “How can you say that, Daddy? You haven’t washed,” I pulled him by the hand. “Come, you have to shower!”
He complied with whatever I said but did nothing. I couldn’t work out what was going on. I said, “I’m going to stand here all day but you are going to shower. Come!” He followed me passively into the bathroom. “Okay,” I said, “Now I’ll wait outside.” When I didn’t hear the water running, I peeped through the door – my father was standing where I’d put him, doing nothing. I tried to take off his shirt but he said he would do it himself. He never did it. Finally, when I saw him standing fully clothed with the shower in his hand and no water coming out, I realized that he didn’t know what he was doing. He understood my words but they had no meaning for him. He seemed unable to carry out an independent act – not because he was paralyzed but because… how was I to explain it? Finally I called in a male nurse to shower him and watched him endure the humiliation of being washed and dried by a stranger. Even within his delusional state, Zac was aware enough to feel ashamed.
In between these experiences, he endured a revolving nightmare of hospitalizations. On several occasions he was so weak I thought he might die and I called an ambulance. At such times he’d at first be pathetically compliant, seeming to understand that he was ill and needed medical help. But usually by the time he would get to the emergency room and after being poked and prodded by a succession of harassed interns his mood would change and he’d forget that he’d come to the hospital because he wasn’t feeling well, and with growing agitation, demand to be taken home.
The intake room at the hospital is a muddle of systems that best serve its own interests not those of the sick people who come in pain or fever or fear. The medical personnel and procedures are as impersonal as they are repetitive; patients are kept hanging around for hours, while the staff rush about looking frantic with very little cause. I have never encountered any of the excitement or drama that one sees on tv programs about the ER – instead, during the long hours of the night the emergency rooms are filled with people suffering from chest pains, a suspected stroke, a broken ankle, heat exhaustion – all basic text-book stuff. There are never more than 10 patients – certainly nothing to cause the chaos that is endemic. You’d have thought that the staff would have welcomed the opportunity to get involved in something out of the ordinary.
A nurse takes a history and this is repeated by a procession of self important people dressed in greens and whites; porters, interns, doctors and specialists – half the time one doesn’t even know. If one is unlucky to be there during a ‘shift’ change, the whole procedure is repeated. One hangs around, while the Princes and Princesses of the ER socialize with one another, exchanging “howzits” with enthusiastic hugs, coffee and the inevitable birthday cake. Or they sit staring at their computers, ignoring worried family members, or treating them as an intrusion, a nuisance. Oy v’avoy for the unassertive patient or relative who stands aside afraid to antagonize – for, like Amos in the musical, Chigago, he is simply made of ”Cellophane, Cellophane… you can look right through me, walk right by me, and never know I'm there!”
Bounced along by preoccupied medical staff my tension would mount with my father’s growing restlessness. I learned to read the signs and knew the onset of a panic attack. Timorously I would venture to call – someone, anyone – to sedate him. “Please listen to me,” I would say, trying to catch a kindly eye, “My father’s not well mentally, he’s getting agitated. Soon you won’t be able to manage him unless you give him a sedative – like soon – like NOW!” Only to be told, “I’m not your father’s doctor” … or “we’re waiting for the psychiatrist“… or “don’t stand here please”, or “the doctor will come to you!” But knowing it was essential to act immediately, I’d beg them: “Please, call someone; please give him something to tranquilize him!”
Within a short time, my father would be yelling that he was going home, that nobody knew what they were doing, that there was nothing wrong with him. He would be pushing nurses aside, standing up without his clothes and threatening to pull the fluid infusion from his veins. Though nearly ninety, he could draw on a reserve of almost superhuman energy and strength, thrusting aside all who would speak, reason, touch, or dare to inject him. One night he grew so wild that two guards could not stop him from holding up the hospital elevator and refusing to come out or let them enter for nearly two hours. On another occasion he ripped a blood infusion tube from his arm, spraying everyone and everything nearby with the sticky red ooze meant to save his life.
In the manic phases of his illness, Zac believed he possessed incredible powers to do and know things that nobody else could know. He discovered the secret to living eternally and came to the conclusion that no one need ever die except through the ignorance and incompetent handling of the doctors. He wrote letters to the newspaper telling people what they should do to live forever, unaware that his letters made no sense. He decided that money was completely unnecessary for the good life; one needed nothing, everyone earned too much, one could never spend the money one earned (no matter how little). He spoke to a down-and-out man sitting on a bench at a shopping center and asked me to give the man 500 dollars. When I said I didn’t have that kind of money with me, he flew into a rage. From morning till night, he schemed and poured his energy into solving the problems of the world – they all seemed terribly easy and uncomplicated – he alone knew how.
Although he was repeatedly taken into hospital and discharged, nobody there did anything particularly helpful. He was prescribed antipsychotic medication but it was slow to work – and even slower because he had to be tricked into taking it. By now we knew the problem was due to the low sodium and that Zac was additionally, severely anemic. A course of iron infusions was prescribed but in the meantime he had to be re-hospitalized and the hospital staff refused to carry out the treatment authorized by his family doctor. They insisted that it was their right to make their own assessment of his needs – thus delaying the iron infusions until his discharge without treatment - some ten days later. His sodium was frighteningly low – 120 - a level so dangerous it could lead to death. No one: not his doctor, his advisors, the hospital doctors, seemed to know what to do and all the while my father’s life leeched out of him.
With his heart problems and the incredible stress on his body, I was terrified he’d have a heart attack. With all this running amok, pushing, shoving and shouting – how did he not? In a panic, I called his cardiologist and told him what had been happening. Finally here was sanity. He said: “Immediately stop giving him diuretics and limit his fluid intake. He’s not to drink more than a liter a day!”
For some years Dad had been prescribed diuretics to prevent the build up of fluids in his system – and it had worked. Then something must have changed the fragile balance. Perhaps it was that with the hot summer weather, he was drinking more and passing more water than usual. Perhaps he was taking more diuretics than he should have. I had no idea because prior to his breakdown he’d been looking after his own medication. Whatever – something had tipped the balance causing the sodium and other electrolytes to flow out and leave his system depleted.
The solution and treatment was finally very simple: from the moment we stopped the diuretics and limited his intake of liquids, he began to recover. The psychiatrist I consulted warned me that in a man of his age, it was unlikely that he’d ever fully regain his usual level of cognitive function and for months he shuffled around like a wounded dog.
In between hospitalizations, I consulted a geriatric neurologist, a geriatric psychiatrist, municipal social worker, social workers at a home for the aged – all without his approval or cooperation. All were well meaning; all tried to be helpful within the framework of their professional competence. But since there was no coordination or teamwork among them, I remained on my own. His doctor did try to get him seen by a psycho-geriatrician, but it took 3 months to get the appointment. I have no doubt that had we been seen sooner, much of our ordeal we endured could have been avoided.
My description only skims the surface of our nightmare. People who know the story, said I must write about the incompetence and even abuse of the medical response but until now, I have been too shattered emotionally to tackle such an assignment. Even now, I ask myself what my message is, what I want you, my reader to take from my story? Certainly, my aim is not to rub my poor father’s nose into the period of his shenanigans, when like Dante, he found himself lost in dark woods , for he has never before suffered from any kind of mental aberration. Nor is my purpose to indulge a penchant for drama – though you’ll agree that the story has its dramatic moments. Was this a freak circumstance to which my unfortunate father fell victim or could it happen to others? And what of the very serious gaps in our medical and welfare systems that cannot cope with a seemingly simple condition and which left me – a lone caregiver to an aging father – utterly without help and support surrounded by a plethora of experts?
For me there are many issues that demand to be addressed, like…
• The poor medical care given by well-meaning physicians. We have a story of how passivity wrapped in kindness can lead to untold misery and suffering. My father’s family doctor should have been responsive to his deteriorating sodium levels. It was not good enough for him to patronize him with false niceties, jollying him along because he is an old man. His doctor should have been more alert, more genuinely concerned, more competent.
• The poor intervention model followed at our hospitals. We need to think about a system in which harassed medical personnel relate to symptoms rather than patients, work in shifts and take no ownership for what happens when they’ve done their stint. It is about their lack of teamwork, it is about their lack of respect for the family of the patient, it is about their deluding themselves that they are princes and princesses of the universe, not to be disturbed, not to be approached, not to be bothered – and certainly not to be advised by the family who might even have important insights to share.
• It’s about the irresponsibility of a ‘ward’ system in which a patient is admitted, kept under observation, then discharged because he seems okay - without any real understanding of his illness or without anyone being curious enough to explore why he keeps returning after a few days, to one ward or another.
• It’s about the rigid division between the family and community health medical personnel who care for and know the patient and the hospital staff - two teams that have nothing to do with each other; make no effort to speak with each other, exchange information or develop a holistic in-patient and after-care treatment strategy.
• It’s about the abusive bouncing of a patient between the medical and psychiatric care systems, with nobody being prepared to take ultimate responsibility. One unforgettable night, Zac was taken in to hospital, violently psychotic. Anyone could see that he was deranged. The consulting psychiatrist sent him to the local mental hospital, where he was kept for about 12 hours, whereupon it was decided that after all, his illness was physiologically based and he belonged in the general hospital. Having been returned there, the doctors in the ward decided they had no more answers – and besides, they needed the bed! Against my desperate protests – whatdoyaknow! - they once again they released him for me to deal with as best I could.
• Finally, it is about the ethics of refusing to force essential intervention on a patient who is frankly delusional and unable to make sound decisions about his medical care, but who will not cooperate with the treatment he is given.
The certification of a patient as incompetent is a complex and agonizing procedure. In my father’s case the doctors in the hospital refused to administer sedatives to calm him because he had not been declared incompetent. The consulting psychiatrist refused to certify him because he was able to answer a few simple questions in a lucid manner. The neurological geriatrician found that there was no organic brain damage and his delusions were therefore out of his field of expertise. The social workers advised that the only way to get him declared incompetent was to call the police when he was violent and make a complaint against him. The lawyer I consulted explained that even if I had a certificate of incompetence (and was given power of decision making over my father’s health), this was not an all-or nothing situation. In the actual circumstance, it might not even hold water. My father’s general practitioner did write a medical report attesting to his mental incompetence but it was not enough – it had to come from a psychiatrist. The psychiatrist at the mental hospital insisted that the mental symptoms were the result of a physiological illness and would come right once his illness was managed. And I, afraid, distressed and coping on my own, was left feeling guilty, unloving and ashamed of even contemplating declaring my beloved father incompetent and removing his basic rights.
It is easier to talk about doing such things, than to do them.
Every so often one reads of family tragedies in the newspaper. A father kills his wife and suffocates his children. A sibling murders a disturbed brother. A son kills his parents – and everyone exclaims and tut-tuts and wonders why the problems were not picked up sooner, why the authorities did not intervene, why the social and medical service system did nothing effective to help. There was a point in time when my father’s psychosis got so bad that he became violent. When I reached out to the medical and social services, no help was forthcoming. Everyone in this situation responded with the same kindly ineptitude. The municipal social worker may well have hit the nail on the head when she said to me – “If it happens again, all you can do is call the police and lodge a complaint. If he is a danger to himself and to others, they will take control and have him declared incompetent. At that point you will no longer have a problem finding someone to take responsibility.” Presuming…” I wanted to add – “presuming I’m alive to tell the tale.”
Can an elderly man who has been lost in a dark wood ever find his way back? I have an email from him. He has finished writing an article and wants me to help him put it up on his blog – for some reason he can’t get it into the right category. I glance at what he’s written. He challenges the Prime Minister of a foreign country who has criticized Israel’s record of human rights. He points out how in India, the caste system has disenfranchised millions of so-called ‘untouchables’, quoting numbers and instances and points of law. Where’s the outcry, for their human rights, he demands. I tell him I’ll put the article up for him; I’m quite delighted to do so. Indeed, my father Zac, has returned.
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