CAREGIVING FOR A.L.S.

Having had to come to Japan specifically to care for a feisty mother-in-law diagnosed with A.L.S. last August, it has been quite an experience.  My wife had to come first, back in October, leaving me to place everything we owned into storage to prepare for coming here in February.  I was originally thinking that I’d be coming in and out for lack of a visa, but we pulled off a visa at the beginning of May.  I’ve been here since May 10th.   In the past year, my wife and I had been separated for almost 6 months, which was extremely stressful for the both of us, but mostly for her.  When I say feisty mother-in-law, frankly I’m just being polite.   To put it lightly, I’m an emotional support human.  I have a vest and everything, but I jest.

courtesy of Dr Frank Gaillard http://radiopaedia.org/uploads/radio/0001/2754/ALS_Coronal.jpg
courtesy of Dr Frank Gaillard, under license GFDL 1.3 under Creative Commons Share and Share alike 3.0

What is A.L.S.??  Amyotrophic Lateral Sclerosis, which is also known as M.N.D. (Motor Neuron Disease), is one of the meanest diseases out there that I know of aside from Ebola, it kills the motor neurons that control voluntary muscles. It can start with stiffness of muscles, muscle twitching, and as the muscles begin to incrementally whither or shrink, the sufferer begins to become increasingly weaker.  It can also start with a gradual decreasing of one’s ability to swallow, speak, or breathe, in which case, as I’m told, it may progress even quicker than those who’s symptoms started with a deterioration of muscle strength.  Roughly half of the folks will develop difficulties thinking and behavioral issues, and more than half experience actual physical pain.  Eventually, most sufferers will lose the ability to walk, use their hands, speak, swallow, and breathe.  The average survival from onset is two to four years, and though she was diagnosed in August of 2018, she visited us the previous November of 2017 and we had noticed that she was talking slower.  We just chalked it up to old age.  But as it turned out, we were wrong.

Baseball card of Lou Gehrig of the New York Yankees, #92 Goudey Gum Company source - Public Domain
Baseball card of Lou Gehrig of the New York Yankees,
Goudey Gum Company  –  source – Public Domain

I recall, once upon a time not all that long ago, A.L.S. was most commonly known as Lou Gehrig’s Disease.  So when the self promoting A.L.S. Ice Bucket Challenge hit the Internet, I had no idea what it even was.  But being that the man nicknamed the Iron Horse, who was a Triple Crown winner once, an American League MVP twice, on the winning team of the World Series six times, made All Star seven consecutive times, not to mention that he was the first Hall of Fame MLB player ever to have his uniform number retired by a team, and was voted the greatest baseball player of all time in 1969, even though he died in 1941 of a disease so rare that it was named after him, I imagine that most young people wouldn’t even know who he was.  Which is probably why it was called the A.L.S. Ice Bucket Challenge and not the Lou Gehrig’s Disease Ice Bucket Challenge.  But as usual, I digress…

ALS ice bucket challeng
ALS Ice Bucket Challenge – source Wikimedia Commons – Creative Commons 2.0 Generic License

As it stands, there is no known cure for A.L.S..  The very best thing they’ve got is a medication known as Riluzole, which at most will extend an individual’s life by about 3 to 4 months.  This is the same medicine that Mrs S has been administering to her mother since we got here, and another one for her behavior, which has been extensively volatile.  Although, she’s grown considerably weak, she attempted a violent outburst against Mrs S over a trivial matter.  These are things you might have to emotionally prepare yourself for if you’re ever in the unfortunate position of having to provide constant care for someone suffering from A.L.S.  Weakness was expected, and we already know her to be more than a little cantankerous, but it’s gone 7th level curmudgeon at this point.  I don’t know where to start or where to begin with this one because all I can really do, since it’s not actually my mother, is continue to behave like an emotional support dog.  Really, I’m like a human Labradoodle.

courtesy of Johlum, wikimedia commons licensed for public domain
courtesy of Johlum, wikimedia commons
licensed for public domain

I’m here for Mrs S, so I just smile and clean up after her after her every meal.  Being that her ability to swallow is severely limited and she is such a curmudgeon, her food at all three meals is limited.  Although the doctor stated clearly, “no liquids of any kind,” she’s fresh out of f**ks to give and demands a soup at every meal.  So naturally she dribbles and drools it all over the bib that Mrs S made for her, same goes for the tea she demands.  We’re not in the argumentative spirit, so she gets what she wants and we just have to listen to the coughing, gagging, and hacking.  She gets tube fed directly into her stomach twice a day in between the 3 meals of which Mrs S is sure to chop up finely and serve with a special tofu and other kind of gooey stuff that helps the other solid food go down easier.  We do our best to keep her as comfortable as humanly possible and sincerely hope that if you too find yourself in the position of having to care for a family member or friend with ALS, that you remember that the best you can do is to simply do your best to keep them as comfortable as possible.

Again, though there is no known cure for Amyotrophic Lateral Sclerosis, there are organizations working on finding a cure.  We believe that anything is possible and if you believe like we believe, then you can perhaps offer a donation to the ALS Association.

MORE TO COME…

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