February 08, 2016

The Savage

I feel I need to write this, yes, in the middle of it all. During the night we took turns, inserting a finger into my son's mouth and pulling his lower jaw forward, allowing him to breathe. Yes, without doing this he would have died. Suffocating. Slowly or quickly, I didn't know, but the natural thing to do was to fight for him, when he couldn't fight for himself.

The why and how of his deteriorating health, and the repeated incidents over the last few weeks of status epilepticus and no longer being able to breathe on his own, seems almost irrelevant. My mind still races though, even as I write this and he lies next to me on his side to allow his lungs to drain better, to try and understand the possibilities, the causality. And we've made decisions based on how we interpret that information. We've decided that if this happens again we will most likely take him in for an emergency tracheotomy. Because even when there is no air coming into his lungs, you can see him making the effort to breath. He's not ready yet to leave this plane of existence.

I slept for three hours on the couch at his mother's, while she held his jaw. My daughter suggested a position for him to lie in to force his airway open with enough success that the need to manually help him to breathe became less frequent. The seizures, which started in the evening and have continued through this morning have been reduced with massive sedation. His lungs have filled up again, despite the constant treatment and all these things have blended into a fireball of destruction.

The good times have been there, I have pictures to prove it for when my memory fails me, and I assumed they should give us the strength needed now, but in a somewhat bitterly farcical sense, those moments stand in stark contrast and offer little help.

To be honest, it's eating at our resolve, or perhaps to put it into a more positive light, we are simply recognizing that this is the natural course of things in my son's fragile and savage life.

January 16, 2016

raw update: nothing is the same

It's difficult to know what my son is experiencing right now. Every aspect of his condition has worsened dramatically over the last month. The last week has been hell. While we bombard him with multiple pain medications, it's true that he suffers much less pain.
Using opiates is not a new idea but one I've always vetoed until recently, relying instead on standard pain meds and cannabis. None of which significantly impacted his severe pain. The fentanyl does that, with reasonable consistency and efficacy. But there is a price which we are all paying as Segev's condition continues to deteriorate.
The return of double pneumonia, (which had been already been treated mid december) is exacerbated by the drying and cough suppressant effect of the opiate. Less coughing means the excessive production of phlegm remains in his lungs, lowering oxygen levels despite supplementation 24/7. His seizures are through the roof. This morning he once again entered status epilepticus (a life threatening condition where the seizures simply won't stop) and I resorted to sedating him with subcutaneous injections of Midolam (used as general anesthesia in surgery). It barely did the trick even after repeated use. 
We've been fighting to raise his oxygen levels since yesterday afternoon, with little to show for it. He has GI bleeding which is being treated. Only one lung functions and it too is becoming tired. But yes, he has much less pain. 
Sleep comes in fits and starts as I launch myself from bed every twenty minutes or so, awakened by the sound of the oxygen alarm or the sound of him seizing. His upper airway is collapsing and he stops breathing every so often until I pull his lower jaw forward to allow air into his lungs. Even then his oxygen saturation remains low. His ability to regulate his body temperature began failing a few months ago. His skin is burning hot but the core temperature is steady. He's drenched in sweat most of the time despite fever medication thrice daily. His bladder doesn't empty and I resort to manual pressure but this only helps when he is conscious. The last time he smiled was ten days ago, maybe more.

January 5th

For the past 18 years I've only worked two days a week, the rest caring for Segev. I feel crushed under the strain of providing care and pain management to my patients while suffering further from my own health issues, once again nearly collapsing to the floor from both physical exhaustion and chaotic emotional state...

How, under an even more complicated regimen...  

We discuss the options; a tracheotomy to help with the increasing upper airway constriction. The downside is his slim chance of surviving surgery and the inevitability of being on a ventilator if he does. The ventilator might help him, giving his body a reprieve from the effort of breathing, since over the last two weeks he is mostly dependent on 'abdominal breathing'. Imagine that every breath you took, every single one, was as difficult as sucking mashed potatoes through a straw. Now add all the other problems. But a ventilator (if we were ever to get out of the hospital) in my son's unstable condition, presents its own difficulties and drawbacks. Whether infection or him possibly ripping it out of his throat during a violent myoclonic seizure, to the technical issues of making adjustments to the ventilator itself when the conditions inside of his lungs, where the altered biomechanics and severe infection will have you chasing your tail every minute of each day, appears an even darker path.

... all options have always been openly discussed and decisions are formed in consensus, each adding their own perspective and concerns, while our beautiful little man sits in his chair, oblivious, each slow breath counted.

I admit to myself that I am less capable. Segev's brother and sister are rallying, as always, and I simply could not do without them. By myself, stumbling dizzy from bed to grab the suction catheter or grasp his flailing arms as he seizes, continuing throughout the night with interpulmonary percussive ventilation, nebulizer inhalation, respiratory physiotherapy and administering sedation that further suppresses his breathing gives diminishing returns. And now we find ourselves in a maelstrom of confusion. The complexity, the interactions. Because you simply cannot know.

From the corner of my eye I can see my kids struggling under it all and I think to myself, will the good also be remembered? Will this give them tools few have, or break off pieces never to be found again? What I do know is, I am grateful and we cannot navigate any better than we have done.

The focus now is to make the best decisions, or more precisely, to live with the consequences.

January 09, 2016


Once again we find ourselves in the midst of a true crisis. The kind where you simply don't know if things will sort themselves out.

There are many different kinds of seizures, but the ones you fear the most are the brutal myoclonic tonic ones that ragdoll your kid with such a violence, that your heart breaks looking at it. When this happens despite all the medications, the CBD and the Cannabis, despite all the careful chest physio, despite the Fentanyl and analgesics, as though the hand of God grabbed your child by the scruff of his neck and went to town with a vengeance.

After one, your so glad it's over, you forgive everything and bask in the calm. But when it comes again and again, and again you become frantic. You give more THC but it is without effect. Then come the extra doses of Clonazepam. And again. And again. Still with no effect. You try Diastat. Finally, emotionally raw, shaking, you see some improvement. The seizures have stopped, after hours of hurt.

Now the differential diagnosis: is it a side effect of the opiates? Too much CBD? Pressure on the spinal nerves overloading his system yet again. These are important since a decision has to be made, what to do to stop the cycle.
It's time to move on to the next problem; 18 hours have passed and he hasn't passed any urine. You palpate and feel his distended bladder pressing against his abdomen. You press and massage, trying to wake him so that he can be aware of the pressure and maybe, just maybe he'll be able to relax the sphincter and pee.

It's two thirty in the morning and you've been working to stimulate his bladder for two and a half hours. But he won't react, even to pain stimulus. Oblivious, he lies on the couch bathed in sweat, your hands probing, cajoling, telling him ten thousand times, 'Segev you need to pee'.
Everyone is called, his sister and mother come over, to help and also make sure I'm thinking clearly. Everyone agrees this is all the result of a severe pneumonia. You bring him, with your own twisted and sprained back, to the bath chair and dowse him with warm and cool water. Still nothing. It's three thirty in the morning and finally he pees, nearly twenty four hours since the last time.

A sigh of relief. You continue the nebulizer therapy, the Inter Percussive Ventilation and the chest physio throughout. His oxygen saturation finally stabilizes. At four you climb into bed, the monitor beeping softly next to you and you fall asleep looking at your son's labored breathing an arm's span away.

Then at six O'clock the seizures start again. More diastat, more clonazepam. But you know it won't be enough. The seizures are no longer seperated by an hour or even a few minutes. He's spewing phlegm with each forced breath. The seizures, massive myoclonic-tonics, turn his lips blue despite the oxygen. They are continuous now, he can't catch his breath.
A phone call to the hospice physician means help is en route. Segev enters 'silent status', he's still seizing but you can't see it unless you know what signs to look for. Another hour before the doctor, out jogging when you caught him, will arrive.

Subcutaneous midazolam is injected and we wait. Another dose and another 8 minute wait to let it seep into his blood stream. Segev's eyes are moving a little less randomly, he is coming out of status. Antibiotics are administered. Hopefully the antibiotics will work. The twitching won't stop until his lungs start to clear over the course of a few days.The seizures, the worst we've seen in many years, should follow suit.

January 07, 2016

I, the aging caregiver: Introduction

Aging is a relative process. Being vain enough to think that I have aged well, until I look in the mirror, has long ago been replaced by the realization that the accumulated mileage is no longer covered by warranty. Coming up on eighteen years of caregiving for my son, it hasn’t always been easy, heck, it’s never been easy. If not for his smile and the twinkle in his eye when I sing to to him, (well cackle like a hyena is a more apt description, but he loves it!), I wouldn’t have been able to give one hundred percent. 

Of course, what was one hundred percent a few years ago is pitiful when compared to today. It’s not much of a paradox, the fact that the more you give, the less you have to give. You need to pace yourself for the long run, but to begin with you cannot know how long that will be and so you give it your all, hoping the long run will teach you to balance your own needs in face of your child’s. I never found that balance, and yet in part because of that, my son is still here. 

You’re not supposed to have regrets, so they say, and while hindsight is useful as it can teach us about the future, I wish it could have been different. Now, that doesn’t matter anymore. Now each day the wear and tear on my body tells me, you gave it your all. I find solace in that, where a few short years ago, I couldn’t. The only thing that mattered was making sure my son was comfortable for the next few hours and those few hours would build up to form an unbroken chain until we reached that mythical goal where he felt comfortable, happy, protected for most of the time. 

This life though, with a fragile child who was given no chance to live, is not a story of continuity. Not a race to the finish line in a sports car. More like a leisurely drive through the country side in a broken down jalopy and you have no real idea of where you are headed. You learn one thing for certain: if you put it in your mind to reach a specific destination, you will never arrive there.

It appears you can strategize, and you should, but you can’t plan. You react to situations and your ability to preempt will bring momentary triumphs, but any preconceptions about how your life with your children will unfold, is soon exposed for the fallacy it is. 

You readjust, you compensate and as far as the outside world is concerned, you put a smile on your face. You accept. You may balk at this idea; the world should know that your child is suffering, but no one is interested in that. They want results, they want positivity. Sometimes you care what they think and on occasion you think, ‘to hell with them’. You have to be true to yourself and to your mission, to provide loving care, a stable environment, that safety for your child to get the most out of a short and hurtful life. In short, you offer them protection. That becomes your meaning. Your child’s meaning lies within showing you what purity is. What the basic element of a profound life is, that unconditional love. How far you take it, is entirely up to you. 

Obviously, the more you go to extreme lengths the more you’ll feel it, as time carries on. You learn to find joy, continually, repeatedly in simple things exactly like when a baby smiles for the first time, coos for the first time, giggles for the first time. You find the ability to remain surprised, the ability to remain in awe and bask in happiness each time something good happens. You become a little bit like your child, discovering that happiness afresh, each and every day, as though time has wrapped you in a cocoon, a stateless mind where time doesn’t exist.

December 28, 2015

I, The Aging caregiver: prelude

What's it like to get old?

 'I know, I know' .
They pass you in the street, preoccupied and muttering.
Unkempt, you see and think, 'They should get their life together.'
But they don't roam the streets, or ask for a tuppence,
they are kept in their homes for the most part.
They are prisoners of their own desires,
to see their children live.
Not down the street playing, being boisterous.
Not in school with grades to make them proud.

They worry about their children, but doesn't everyone?
Machines that make their child's life complete,
defeat but a mere morsel,
when it is death that you must cheat.

Those parents, in their little homes, their little worlds,
their little children cut to the quick.

They sing songs their children cannot understand
beneath the fog of copious drugs that numb, that heal and that sicken.

They don't ask for much, these strange parents with their
strange children whom you never see.
'There must be something wrong with them' and you hurry past
their livingroom window. You see their shattered remains.
You move along because it might be contagious.
The sorrow, anguish, dashed hopes, crushed dreams, creaking bones.
The wear and tear of the caregiving parent. You can hear them scream
inside their heads, 'Good morning' they say, as you pass them.
Didn't you hear the scream?

I'd lock them up, if I heard their screams. Get a grip I'd say. You're not
the only one.
They seem stark, distant, those strange parents. Life goes on, you know.

And they know, that life goes on. Without, they are strong, vigilant while
they caress their child and wipe his brow.
How much sweat in an ounce of pain? How much
pain in an ounce of sanity?

They caress their child and a smile lights up that face, and death
smiles patiently. Life goes on. 'Make the best of it', your encouragement is
endearing, as life goes on.

One day is not the next, there is only one day. There is only one moment,
everything lies within that one moment, even if it lasts for years.
One long instance of life, hovering, quivering. Brought to your knees,
perhaps by tears, but also thanks, because life goes on. You wish for that end, that moment of joy, when it all pays off. The caring, the giving, the sacrifice. The weariness ends when you know the secret, that their life makes amends, the sweetness vivifies, the pureness of that child of theirs, those strange parents.

December 05, 2015

On my news feed I came across an article titled, "I love my disabled sons, but raising them can be unbearable". I stopped reading after coming across this sentence, in the very first paragraph: "Yet I can imagine only too easily how Tania Clarence did the unthinkable and killed her children - because the pressure of caring for them is like being buried alive."

Eventually, out of interest but also from respect (knowing so well the difficulties families face raising severely disabled children) I read the entire article.  Opinions may not matter, but discussion does, even if it is inside our own heads where, rarely, change happens and a different perspective is gleaned. Perspective, though is not much more than a fancy word for opinion. I looked for a place to comment, a few sentences to convey my concern as parent of a catastrophically disabled child, but there was none.

I wanted to say, "Thank you for writing this thought provoking piece and for making many of the struggles, common to families such as yours more visible. First time coming across your article though, I stopped reading after, 'Yet I can imagine only too easily how Tania Clarence did the unthinkable and killed her children - because the pressure of caring for them is like being buried alive'. I'm not quite certain how you can 'easily imagine' the 'unthinkable' but that has nothing to do with my actual concern over the sentence as a whole and what it signifies.
Parents of severely disabled children have a rough time of it, one that can easily devolve to 'catastrophic' in terms of quality of life. Very little or next to no assistance is what marks the lives of such families in many countries, even developed western nations. I've been living that life for nearly 18 years with my son, whom I care for continually at home and who is catastrophically disabled with a life-limiting condition. Each day is a struggle which will not cease even during night, even if all the morning will have to show for it, is that it was his final night on this earth. It doesn't end, until it does.  
The author aptly ascribes to this life the sense of being buried alive. Indeed, I know this to be true and have felt the very life force drain from me as endless intense care were squeezed from me like water from a desert stone. But not once did I think, 'Well, I'm being buried alive, I'd better kill my children', as is suggested by Henrietta Spink as a reasonable thing to contemplate. I would die before I would ever consider proactively taking the life of my child, as Tania Clarence (or Robert Latimer) did. Context in such a situation is critical. We must understand the circumstances and it was her own circumstances and the situation of Mrs Clarence that spurred Mrs. Spink to write her article.
The personal ethics of a parent faced with the prospect of raising a severely disabled child will stem from their mindset, as it creaks and breaks under the strain. When you add in the fatigued mind of someone who suffers from chronic sleep deprivation and seeks but finds little support, be it from family, friends or government assistance you have a recipe for disaster. While we are changed by our parenting experience, though bullied into growth as extreme caregivers, pressure does not always a diamond make. Surely, without the stress and fatigue, the financial hardship (having lived at the poverty line for nearly 18 years now, I know) different decisions would be made?

What prompted Mrs. Spink, with so many years of experience in every aspect of caring for not one, but two, severely disabled children to say that it is 'easy' to imagine killing her children, still baffles me. I understand that having these thoughts are troubling. I get that having these thoughts is not anything like actually doing it. I also get that Tania Clarence's state of mind was such that she believed she was doing her three kids a favor by murdering them. It doesn't matter that she was ill-informed though, since her children, suffering from SMA type 2, could easily have gone on for several years without great suffering. It is equally possible that they would have suffered, (although the likelihood that all three children would go through the exact same experience is not overwhelming) the thought that, after having gone through a horrible experience and watching your child die, that you had two more such experiences already unfolding, your future suffering mapped out in front of you, could certainly offer insight into the state of mind of Tania Clarence. 

The quote, "every day Tania knew she was watching them move slowly and inexorably towards certain death" sums this up nicely. Except that the first thing you do when you have understood that your child is going to have a severely shortened lifespan is accept the fact, then work forward from there. No one stays stuck in the denial stage for years, do they? The daily difficulties of maintaining a semblance of family life in the face of death simply forces you beyond that first impulse to deny, unless you aren't actually caring for your ill or disabled child at all.  More questions remain than can be answered. Perhaps the husband and wife discussed the issue, even planned it, with the husband conveniently away on business. Perhaps he didn't have the stomach for it and so his wife decided to take matters into her own hands, smothering her children to death and then making a half-hearted attempt at suicide.
Eventually Mrs Clarence, who was financially secure, was found incompetent to stand trial and put into a psychiatric hospital. After a relatively short time she was allowed day-leave. Thousands of parents rallied around her to offer their support. She was 'brave', 'decimated', 'overwhelmed', 'courageous' and so on and so forth. Personally I didn't read a single comment or article that tried to kick her while she was down. A pity. Almost all comments were of course from individuals who had little idea of what her life was like as a caregiver. There are so many details surrounding this event (round the clock nurses, previous depression, support, antagonistic social services) that knowing her circumstances is difficult in the extreme. And state of mind is what most people seem to think it comes down to. That and the resulting, personal, decision some make in deciding the fate of their children. I don't feel sorry for Mrs Clarence since, after all has been said and done, she may have robbed herself of a future with her children (and as some twisted people have suggested, is punishment enough) but she robbed her children of any say in the matter. As they would grow older and understand more (which was the prognosis) they could convey, in ways that parents know, whether their lives had become more about suffering than about living. She robbed her children of any hope. And while it may seem to some that the word hope is sorely misplaced when discussing the inevitable death of a child, you could not be more wrong. It is exactly hope that lifts up countless parents to collect themselves after they have fallen and take another step towards the future. We grant these parents the right to hope, we wish them well, wish for them to have the strength not to implode, but if they do, we will all rush in and help, right? In theory at least. But what about the children? No voice for them at all? Because they are too young to understand? Only a mother should decide? How about erring on the side of caution?
This requires parents to be educated in navigating the trenches of extreme parenthood. But that manual has not been written yet. It is being pieced together by parents and caregivers exchanging information and support, on the Web for example in countless support groups and charities. But there is very little trickle-up effect to government and local councils are often hamstrung by government agencies.
And yet different parents, in nearly identical situations, will react differently. Is this because of their upbringing? Is it because it is impossible to quantify the actual differences in support some parents get? Some are simply stronger than others? All true. Mix and match as you please, season with whatever further convolutions you are partial to.

Despite opening her article with such a loaded sentence it is after all, just her opinion. It's not that she is deciding public policy for all such families in her district, so she really does not need to defend her position. She calls it as she sees it. Even if we cannot though, to the satisfaction of everyone, equate the circumstances of one family to another we can look at the conspicuous absence of a large number of families making the same devastating decision. We hear little or nothing in the media about the large numbers of families with severely disabled children, the absolute majority of such families, where the same decisions that led Latimer and Clarence to decide to kill their children are for them, not viable realities.  The simple fact is that they choose to live, as terrible as it might be, until nature takes its course, or they find that there is no other alternative. Mrs. Clarence's children still had quite a way to go before this was the case. It seems to me a basic human right not to have to worry if your parents are going to kill you. With an ill or non-verbal child, do we suddenly take away that right?

Spink ends her article with, "There are days when I don’t know if I have the strength to carry on. And that, more than anything, is why my heart goes out to the poor, beleaguered Clarence family."
Is this pity, presented here as a defense of Clarence? Pity is always the first thing a parent of a disabled child says, is not what they want. Is there a place for pity? Or should we struggle on, beleaguered, broken, because what else can we do? Certainly, contemplating whether you have the strength to continue or not, is a luxury afforded to few. If it is empathy, then it comes from the author's personal acknowledgement that she feels or has felt close to the brink. The brink of what? The only option is killing someone? Alright, I can accept that for some that is the only option they see. But then Spink opened with that acknowledgement, didn't she?
Her solution, the one that Spink maintains is understandable, i.e. conscionable, is not the norm. It is not the first thing a parent thinks about when considering the future of their catastrophically disabled child and I feel it is misplaced in an article which means to discuss the urgent necessities and traumatic nature of raising severely disabled children.

November 25, 2015

His life, his intention, his meaning.

"There is a friend who has lost his daughter. She was fifteen. In the afternoon, in the quiet of his study, (where have all the terribly comforting noises and effort of care-giving gone? The rustle of plastic when opening a new syringe wrapper. The pop of a medicine container, the cling of stirring that medicine in a glass. The distrust in life, the pride at her commitment to renew herself each day) he broke down in tears. How could he live his life, doing justice to all the sacrifices, to honor her short but exquisite life? How could he go on without the meaning that caring for her brought? He realized then, that her sacrifices were not in vain, since she lived a beautiful life. A very difficult one, but filled with laughter, drama and the mundane. Like any other. ‘God I loved her’, he thought. But then the obvious struck him, that he loves her and carries not only those experiences inside of him, but her essence. Yes, she is gone, but her meaning isn’t. His very bones breathe her existence. Despite the appearance of limitation and suffering, he chooses the positive in life, because that’s how they lived it.
His life, his intention, his meaning."

excerpt from 'Before the god of the fields', an upcoming novel.