We began our journey in a rush, quickly learning about ALS as fast as we could, but not as fast as the progression itself. Just when we thought we would master one aspect of caregiving and one phase of loss due to ALS, another progression would happen leaving Dad grappling with the loss of another limb while mourning the loss of the previous one. Meanwhile we were stuck picking up the pieces and trying to keep Dad together reevaluate our underestimation of the speed and manner in which this disease functions and spreads along with preconceived notions about the use of comfort medicine and update our methods of caregiving.
Sure, the neurologists and medical staff at the ALS clinic let us know all of these things in advance. But how many people who know nothing about ALS, are expecting to be paralyzed in a wheelchair in three months and then bedridden a few months after that? Dad certainly didn't think he would, being only able to soak in to the reality that he was dealing with at each point of progression. The terrible thing about ALS is that sometimes, often times, those moments of progression can come all at once, in a multifaceted assault on the patient.
Dad lost mobility quickly.
I held his hand the entire way, witnessing the tri-monthly progressions; from cane to walker, to wheelchair to hospital bed, astounded at the speed and cruelty of this disease. Still sorting out the emotional aspect of each individual progression, I stood by Dad's side, absorbing some of the brunt of that ALS reigned down on us both, him as the patient and me as the caregiver. Both Mom and I were trying to make sense of it all while simultaneously trying to explain it to Dad and help him survive it.
That's when I realized, that it was critically important for me to just be there for Dad, to be strong for him. Whether he knew it or not, or liked it or not, he was going to need me more than he ever needed me before. There was no time for me to dwell in the pathos of ALS. I had to get it together emotionally in order to be there for him and not just in the spiritual sense. 'Being there' for for a loved one stricken with ALS literally means being there physically for them: being their eyes, ears, arms, legs, 24 hours a day, 7 days per week.
Dad and his personality type was going to use every ounce of strength that I could muster.
Two years, from the diagnosis now and my body is physically broken. Aches and pains, sciatica, insomnia and fatigue all are my new bed mates because of the strain, and dare I say burden, of caregiving. Yes, there are skilled nursing facilities. Nevertheless, the man of the house was not entertaining the thought of going to a nursing facility. He was absolute in his decision to go home and be cared for by us... with the help of hospice, once it got to that point. Very quickly he did reach that point.
It was this time, that he anguished the most–bedridden, paralyzed and robbed of his freedom of movement. It was at this stage of ALS that a peculiar phenomenon was developing. We didn't pay close attention to it, but as it magnified in intensity we became increasingly aware that something was awry neurologically. It is known that, with ALS, the patient retains nearly all mental capacity and cognition and reason, etcetera and so it was that we were set in our mind that he was fully capable mentally aside from the effects of his ALS caused paralysis. What we as his caregivers didn't yet consider was the condition of emotional liability (sometimes known as emotional incontinence) but better known as pseudo bulbar effect.
Hells bells.
Just when we thought things couldn't get any worse, outbursts, slurs and bad words at the slightest infraction or nuance of mood was hurled at Mom and I. Dad would hurl insults to Mom and I all day, impossible after a full day of back-breaking caregiving. It makes the physical and emotional burden of caregiving nearly impossible. The psychic pain one feels to see a loved one speak to you like this with all the vile language of hell coming forth in a pseudo-bulbar outburst. I imagine it may be frustration penned up is when he isn't clearly understood because his voice has been garbled by both ALS and the tracheostomy. If the trache balloon is deflated (in the open position) he can speak but the voice is garbled and unintelligible. Conversely when the trache balloon is inflated (what we call, the closed position) preventing both saliva from going into his lungs and similarly preventing air from reaching the vocal cords he can't use the power of voice. In this latter instance, we communicate by facial expression, lip synch or low tech alphabet board. In either case, it must be terribly frustrating for him emotionally and psychologically and to add on top of that pseudo-bulbar effect is just one of those things that makes this one of the cruelest diseases that any man, but particularly my father, who was a wonderful man, undergo. Luckily he has us to help him through his suffering and pain.
After conversations with his neurologist, who just so happens to the the chief neurologist and director of the ALS center at a reputable hospital in our area, there was some semblance of hope, of course it came in the form of a pill. There is a new drug called Neudexta which studies prove to be effective in treating "pseudo bulbar effect" in ALS patients.
From what I read, and what the doctor told me, it looks promising.
Some friends and family that have seen Dad's outbursts merely associate it to him being overly emotional, not taking into account the phemotional torrent that is affected by ALS disease. For some, like my Dad, they blurt out cuss words or expletives while others cry or laugh uncontrollably. I would have preferred the latter but we are stuck with the former of the two emotionally liabilities.
Sadly, the affect of this branch of emotional liability has spiraled from the patient onto us, his caregivers. It has cumulatively added to the weight and burden of everything else going on with ALS and has worn mom and I down.
I'm falling asleep as I write this, having slept only two hours today from attending to Dad overnight and then woke up early to take mom to work. While she's working I've got to subsequently attend to dad for the entire day until she gets back, and since she's tired from having worked a full day shift, I continue watching Dad until it's time for bed. Some days my day pushes a 18 hour day with the remaining few hours left for me to sleep.
I have a prestigious degree from our state's flagship university and yet cannot get out there to work and use it but nevertheless, I am grateful for the opportunity and high calling to serve my father in his time of need. Meanwhile, I remain poor and dependent on the kindness of the good hearted to help me support my Dad.
There is no respite for the caregiver when you are poor and a beloved parent falls ill.
Saturday, June 25, 2011
Monday, May 16, 2011
Dr. Stephen Hawking Denies God & Heaven
After learning today, that he has publicly denied God and any notion of an afterlife however, I feel a bit less inclined to keep him on elevated hero status. Dad 's battle with ALS has been unimaginably hard, given our economic circumstances. The disease easily devoured our lower middle class resources within the first and second year. Without the unlimited resources (surely that the famous Dr. Hawking has to sustain his bodily functions) we have been reduced to relying on small miracles from God to get us through each day. It's been our faith in the notion of God that's been getting my Dad, my Mom and I and my siblings through this living hell called ALS.
I feel that, as a public figure and someone who is a living icon for ALS patients, Dr. Hawking should've emphasized that it was only his personal opinion the God doesn't exist, instead of trying to lay out a scientific case for it.
Dr Hawking declared,
"I regard the brain as a computer which will stop working when its components fail. There is no heaven or afterlife for broken down computers; that is a fairy story for people afraid of the dark."
Dr. Hawking, making a comparison between computers and the human brain sees the relationship between brain and body as purely mechanical. He fails to make a juxtaposition, choosing rather a simple comparison that ignores the complex disjuncture between the human brain and the computer. The brain is far more complex than any computer that has ever been developed and the human spirit, perhaps because it is not quantifiable in scientific terms was ignored by Dr. Hawking.
When Dr. Hawking makes his way fearlessly into the "dark"and comes face to face with God, I hope that he'll be able to explain his theory of a Godless, heavenless universe. Despite this though, I think he's a brilliant scientist and respect his work and contributions to science and the world, and his fortitude to keep thinking and working.
See the story here:
Saturday, January 1, 2011
Introduction
I should have wrote about this long ago. Perhaps I was hopeful that a cure was available, or that ALS was going to be a walk in the park. Instead we were hit head-on with the full brunt of this beast called ALS. Since Dad's diagnosis and immediate onset, ALS progressed rapidly, ravaging my Dad's physiology and psyche. This of course spiraled into emergent healthcare crises, transforming me at once from a flourishing academic with the joie-de-vivre– into his around-the-clock nurse, caregiver, medical insurance billing specialist, durable medical equipment coordinator and companion–all of which has consumed my free time, my academic studies, my mind, my body and spirit.
"Amytropic Lateral Sclerosis."
I will never forget that name or the fact that I had never heard of this disease before. We all drew a complete blank when the doctor gave the diagnosis, frozen with naive smiles on our faces because we didn’t know what else to do, or how to react. Mom’s face painfully irritated me. I wanted to protect her from the hurt; her girlish innocence captured in the awkward smile of not knowing what do to or how to interpret the physician’s look of seriousness and sorrow. Our naive smiles, half innocent and half crying inside from reading the doctor’s nonverbals. For some reason our awkward half smiles at the diagnosis of ALS made me feel naive, and we would soon come to know how naive we were. In the aftermath of the ALS rapid progression, the heavy burden of Dad's caregiving on mom and I would devastate us in such a way that only another family with limited resources grappling directly with ALS and the intense caregiving would understand.
“It’s a neurological degenerative disease where the motor neurons in the brain cease to send signals to the muscles wherein the nerves are damaged and the muscles begin to wither. It affects all the muscles, resulting in quadrapelgia, paralysis, loss of breathing and eventual death…”
the neurologist said scientifically. She continued,
“Normal lifespan is generally two to five years since the onset of the disease…I’m so sorry”
Professionally composed, she pivoted on her high heels and walked out the door and let us absorb the initial shock of the diagnosis while she set up additional meetings with supportive medical professionals and therapists to lay out a plan of action.
We all sat in deafening silence.
That was about two years ago.
Since then, Dad has progressed to the late stage ALS and Mom and I now have the high honor of being the primary caregivers for Dad.
Prior to being transformed by ALS, Dad was quite the independent jet setter, galavanting the world with treasured vacations he saved up for, including humanitarian and medical missions to disaster sites around the world. All of that, now cut short, with the devastating reality of rapid onset Lou Gherig's Disease.
Since then, Dad has progressed to the late stage ALS and Mom and I now have the high honor of being the primary caregivers for Dad.
Prior to being transformed by ALS, Dad was quite the independent jet setter, galavanting the world with treasured vacations he saved up for, including humanitarian and medical missions to disaster sites around the world. All of that, now cut short, with the devastating reality of rapid onset Lou Gherig's Disease.
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