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.
