“Rock, Paper, Scissors" Chapter 70

I started this blog to share what ALS really looked like, and to prepare PALS/CALS with their journey.  WARNING no pictures this week, but you will thank me later.

When Laura and I were young with babies, we used the game rock, paper, scissors (RPS) to decide who would change their diaper. We didn’t really care to be honest, we were just having fun. We played the game for a lot of things: who’s going to feed the baby in the middle of the night, diapers, naps, etc. There was one time when our daughter thought she was Picasso and used her poop to draw all over her crib and wall. That time we did care about the outcome of RPS and I won. #winning

As our family grew older, we shared the story about our little Picasso. She would tell me, “don’t worry dad, when you get older, I will hire a nurse who looks just like me to change your diaper." Of course, she thought I would be old and senile when that happened, so I wouldn’t know it was not her. Jokes on her hahahaha, I am young and not senile.

As I wrote in chapter 28, when you become a caregiver, you become a master of many skills when taking care of your PALS. However, are you ready to deal with your loved one’s shit and no one to play RPS with? I mean this in the most literal way.

As I progress through ALS, I have found there are stages of shit care. Staying with the game theme, I will name the levels after RPS.

Stage Normal: I could still walk to the restroom, drop my pants, talk on the phone (come on don’t deny you bring your phone), and - like a big boy -still wipe my own ass. Since I started with Bulbar ALS, I couldn’t keep my mouth closed to hold my breath when pushing, so a plus is no more turning blue when having a hard time.

Stage Rock: I was now needing help walking and sitting down on the toilet. I could still wipe my ass and multi task with my phone. One other issue I started having was constipation. I was going once a week. The lack of enough water and the specific peg formula were primary reasons. If I had to pee, someone would stand behind me to make sure I didn’t fall.

One time, when I was walking to the bathroom and trying to undo my pants on the way, I lost my balance and fell. I was laying on the floor with my pants down to my knees, ass hanging out when Laura came running in to see what the loud crash was. I can only imagine how funny I looked lying there with Laura trying to figure out what just happened. Hahaha.

Stage Paper: As my body was getting weaker, I was no longer able to move to the toilet myself. I was also having moments when it would sneak up on me and we had to move fast. I would say I had to go and like a NASCAR pit crew they had me on the toilet in under 8 seconds. So to make things easier, we brought a toilet chair into the room I was in. I also turned in my “man card” (chapter 13) and needed someone to wipe my ass. I was able to hold myself up while sitting and still use the phone, but needed help with everything else. For me to pee, I used a urinal bottle day and night, but this required someone to wake-up at night and that was very taxing on everyone.

PRO TIP: Caregivers - when helping a man pee, don’t pinch the hose and be sure to have paper towels handy. You will thank me later.

At this point, we were also figuring out how to overcome the constipation issues, but quickly found out the meaning of the phrase, "never trust a fart."

Stage Scissors: I am no longer able to do anything for myself anymore. The days of multitasking pooping are gone. I need to be rolled in and rolled out with a pit stop in between to get cleaned up. The muscles used to push are gone so I have to rely on gravity. On the days gravity fails I need an enema. According to my home-care nurse you have to use the 3H’s, put in High, make it Hot and use a Hell of a lot. After years of putting bad guys in jail, I now understand what the new guy must feel like. I am also bringing back the tighty whitey look with my adult diapers. #adulting. See Stage Scissors? Never trust a fart.

We also found a solution for the peeing issues. We now use a condom catheter connected to a bag. This was a game changer. No more waking up at night and dealing with pinched hoses. I haven’t worn a condom for 29 years and now I wear one every day.

I hope this post helps you understand a little more about what a caregiver will have to do for their PALS. Hopefully there are are no more stages, because I don’t know what I would name them. I do know I am blessed to have Laura and my daughters to help me when I need to go, and now I laugh every time I hear them saying Rock, Paper, Scissors shoot.

Love and Blessings.