ALSCaregiver.com

I knew it would happen eventually but I wasn’t as prepared as I thought I’d be.

Mom, our friend Margie and my brother Shawn went to Branson a few weeks ago.  While they were picking up tickets, Mom felt that she needed a breathing treatment.  By the time they got to the hotel they had to call an ambulance because she could barely breathe at all.  She didn’t go to the hospital that night, but Margie quickly ran and bought an adapter so the BiPap could be plugged into the cigarette lighter of the van (finally, it has a use).  When mom continued to have trouble, Margie decided that since we had an appointment with the ALS doctor in Little Rock on the 8th anyway, they might as well head on down, so she rocketed down the highway and checked mom in to UAMS.

I drove down to be there because the doctor decided to go ahead and put in a feeding tube before the option was off the table.  I got a hotel room for my brother and I to stay in and we started to get to know the parking lot staff.  The surgery was successful but mom didn’t feel right the next day.  Neither did we, so we talked the doctor into letting her stay another night.

That turned out to be a great idea because that night, all hell broke loose.  Mom started throwing up blood and the doctor asked me to come in and sign the Do Not Resucitate order.

If you’ve never had to handle something like that for a parent, I hope you never do.  It’s a right hand slap to the side of the head by reality.  Mom was moved to ICU and given blood while the doctors tried to figure out what we going on.  I had a friend drive down and take my brother home where his staff could keep an eye on him.

I was given the choice of allowing a scope that would go down mom’s throat and into the stomach.  I was told that when this happens after a feeding tube, 90% of the time the bleeding stops on its own.  If I agreed to the procedure, given mom’s breathing capacity they might have to put her on a ventilator.  That would be fine except ALS patients sometimes can’t come off a ventilator once they’re on and mom refuses to be put on one.  So I said no and thankfully, I was right.  The bleeding did eventually stop and we were moved back to a regular room a few days after going into ICU.

A couple days later we made it to Russellville and spent the night at the Hampton Inn, which was when my plantar fascitis came back with a vengeance.  I’ve learned now that just because your brain can turn off pain out of sheer force of will, it will eventually come back hard.  Luckily the flare up only lasted a couple days and I was back to my “waiting to fully heal” phase.

Mom was sore for several days after we got home but is doing better now.  She’s reached the point of being in more pain due to her immobility so we’re trying to keep her moving by our power as much as possible.

After this experience I’ve gotten over any denial I might have had.  After seeing her in so much pain, I now feel like I’d be doing her a huge favor when the time comes to let her go.  We’ve gotten signed up with Circle of Life Hospice, so when that time comes they’ll make sure she has no idea.  That makes her feel better.

You might not know what you’ll do when this kind of experience comes along, but you might be surprised at what you can accomplish.  Having this follow 12 weeks of being in a wheelchair myself has really made me understand more fully what my mom is going through.