August 28, 2016

STILL NOT TIME

STILL HERE, STILL HERE

From long ago, a serenity long lost.

I felt, as I woke Segev's brother and sister, that I was teetering on the brink of a precipice.  I thought that I had come close enough to my son's death enough times, to stand firmly on my own two feet. But I felt unsteady as in the midst of a severe storm, not buckling but oh so unpleasantly buffeted and pummeled. I thought, 'a few more hours' and that soon I would be consoling my eldest and middle child and they would be consoling me. So I woke them as they tried to find rest after they had helped during the night, assisting in emergency care for their brother who was barely able to take breaths and whose oxygen level, despite hours of constant chest compressions, ambo bag, IPV and suction, was hovering at 62%, having been stuck for some time as low as 50%.

August 17, 2016

So many miles we have crossed.

I am an old man now. Not in my mind, of course. But all the same, for eighteen years I have been fighting one crisis after another, each day. One more time to prove that life is here to stay for as long as the moment will carry. I breathe and so must he. There is no quitting, until the end overtakes us. And all that is, has been just and each moment has been weighed and those things, those moments, those accomplishments will never succumb to what is less. The endless nights of dawn, the turmoil, the anger and the lack of respite. If he can do, so can I. Perhaps less, certainly much less than once, humbled to know that less is forgetful and looking for pleasantries, groaning and no longer jumping from bed to treat, placate or save but to drag aching bones and confusion to the fray; but with a breath and a prayer, always, always into the fray.

June 09, 2016

Reflections

What does it mean to be an extreme caregiver to your child? Well in my case it has meant gaining 35 pounds, becoming too exhausted and injured to maintain a lifetime regimen of exercising and that I started smoking. Smokers, of course get no sympathy. I grew up in a household where both parents were heavy smokers but I didn’t start until I was 46 years old. That probably means something, but I’m not certain what.
Extreme caregiving has meant that my expression of creativity, writing, was put on hold for over 15 years, until it exploded from my unconscious with blogging about my son and life with him in 2010 and then publishing poetry in June 2013. After fifteen years of carrying my son and his wheelchair up two flights of chairs, my back was finished and now it’s difficult to even lean over my son and perform the physiotherapy which has helped him to survive.

May 26, 2016

Thoughts, after fifty years on this earth.




Forty four years ago I decided I would become a writer, because I wanted somehow to bring about resolution to conflicts that I witnessed people experiencing in their lives. That was my second choice, actually, my first was to become God, but I quickly realized that if I could think of that at age six (I wasn’t terribly concerned with actually how I would become God) then adults, infinitely smarter than myself and higher up on the pecking order, could do so and would be given preference.
But stories could be manipulated, changed, and so I vaguely envisioned rewriting people’s lives and conflicts and that they would then be able to see that things could be done differently and the outcome would be a more positive one.

May 05, 2016

The aging caregiver

There was a short conversation with the palliative physician who joined the team about six months ago. Going forward, after the catastrophe of attempting to control my son’s pain with a variety of opiates, putting him at death’s door yet again, he said he was running out of options. Fortunately I was able to increase his three other pain meds and add a fourth, which is helping Segev considerably.
But today is another such day where he is suffering signifcant pain. The last week has been another episode where he is vomiting frequently, his lungs are heavily congested, there is an increase in seizures and drops in oxygen saturation and a hard battle with an infected gastrostomy site, despite the constant methods of care. Today is another day where I need to decide whether I go to work or stay by his side.

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

January 5th
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.

January 09, 2016

UPDATE

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.

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. 

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.

December 05, 2015

Raising the unbearable


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.

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.

November 19, 2015

So loud

In a life such as that which my son, Segev, leads, it is often the silence which is the most telling. When seizures happen, which have once again become pressing, you see the issue right in front of you. Maybe there is something you can do, increase the oxygen, suction, support his flailing arms (even though they are tied into elastic bandages to minimize the damage), wipe away the tears. Then comes the quiet. How well will he recover? Is the next one on the way? Or more pertinent, what caused it this time; a build up of neurological tension from frequent, excessive pain? A blockage in his lung? Do I reposition him in his chair or move him to the couch where he can lie more prone?

September 22, 2015

Short and sweet





He is twitching again today. It starts and goes on for hours, eight, ten, twelve hours perhaps more. Even valium cannot subdue it and when he twitches, his hands always, feet and stomach regularly, he hardly reacts at all. Sometimes he will lazily open his eyes, in a way that you know he is still partially there with you, but expressionless, just like a nod of recognition you might give a coworker you pass in the street. None of his seizure meds help, nor the cbd, not the thc and he sweats constantly, his palms and feet turning cold in that way, though not from the air conditioner, merely cold and sweaty for their own accord.  Usually preceded by a massive clonic-tonic seizure, the kind where he turns red and then blue, despite oxygen piped through his nostrils in a steady twenty four hour stream of ‘wash-unk’s’ from the oxygenator’s electric pump. And an overabundance of phlegm clogging his delicate and nearly disembodied lungs, more than ever. Clearing his lungs enough so that twitching will stop. But the pressure on the lungs from his spine on one side and the diaphragm, lunging upward from the other, keeps the status quo, the memory of hope; I’ll give you a few days of this, and you take a few days of that, and together we will bludgeon consciousness, tit for tat.

July 22, 2015

A look back at January 1st, 2012

Miss her every day. The picture of my mother below was taken one and a half years before she passed. She had already lost the ability to speak half a year previously and could no longer walk. But she could still laugh and nothing was quite so important to her as bringing out joy and laughter. She laughed a great deal, despite a really tough early life. Despite her illness. Towards the end she was reduced into kindred, mirror images of my son; paralyzed and speechless, fed through a gastrostomy tube, pain on the outside. While inside the same strength and kindness continued unabated.