As my friend, do you mind if we sit and talk. Okay, do you mind if I just talk. Life has been kind of upside down lately and I just need to talk…Do you need to grab a drink? I know I do.
Gosh, where do I start? There is this whole other side of ALS that if you are not close to someone and this disease, you really don’t know. The fight against ALS is more than the Facebook posts about donating to the cause, taking bucket list trips or even ALS Month. The real fight against this disease starts when the front door closes. It starts in the home of the family dealing with this disease on a daily basis. The weapons used depend on where you are in the progression of this disease and even with the right weapon there is no guarantee the outcome of the battle.
The progression we are seeing is taking the Big He from moderate independence to more dependence on others. He actually requires someone to be with him at all times now. For him this means he has given up privacy. He now needs help with everyday tasks we take for granted like the morning routine which the Big He refers to as its time to Sh!t, Shower, and Shave. He also needs help with putting on his breathing mask, turning on his Bipap and even transferring from his wheelchair to the bed. We are not a well oiled machine at this time. Which means tempers and frustrations run high on both sides. There are many angry words followed later by the apologies and kisses. Something that has been hard for me to adjust to is the lack of independence that ALS has had on me the primary caregiver. I have become the Big He’s arms, legs and voice. Although, I have been talking for the Big He for 28 years so that’s not really a huge change. What is a change is trying to figure out what he is saying. His voice has changed and it’s hard to understand him sometimes. That frustrates the both of us. It makes me sad. I miss hearing his voice. I miss just hanging out and talking. Talking takes a tremendous amount of energy so he conserves it when he can. We now sit in comfortable silence.
For the past month or so I have felt like I am in crisis mode. The Big He had such problems with his breathing for several weeks that we had to figure out, the change in his strength and need for help when standing or transferring as well as just trying to figure out the other areas that we are seeing progression. I have not had a chance to work like I would like. I like what I do professionally and it has been my escape. As the Big He requires more help, my professional life has suffered. We recently hired our caregiver full time but I am learning this disease takes a village and while she is so helpful there are some things that the Big He feels more comfortable with me taking care of things. We know the loss of his personal privacy is coming and he will need other people to care for him for now he is just not there. This means my husband comes before career. While my heart knows this my head still has a hard time giving this part of my life up. I try to be hopeful but let’s be honest, this disease has no cure. I am still young and will need to work after the beast wins. This is just another side of ALS that absolutely sucks to think about much less talk about but is the reality of what is happening.
Another side of this disease is the impact it is having on the Little He. We cannot protect him from what is happening and what is coming. We are dealing with poor grades, lack of attention at school. While the mama in me gets super frustrated with his grades, I can’t help but be so incredibly proud of the man he is becoming. Tonight, the Big He took a drink and started to choke. Like scary choking. The Little He was studying and with a quick yell of his name and I am guessing look on my face, he knew what was happening and what needed to be done. He jumped up and had the suction machine going and cough assist turned on waiting for his Dad and I to get to it. He may not be able to remember to turn his damn homework in but he sure remembers how to use the necessary medical equipment his Dad needs. The Little He stayed next to his dad even after things were okay for the next 20-30 minutes.
This is what ALS looks like when the door closes at night. A 16 year old boy gets pulled from homework to handle emergency situations and care for his Dad. A wife helps her husband and ensures that all those things that he can no longer do himself are getting done. An incredible man that had an amazing career working for the State of Texas, a Veteran of the US Air Force, a man that was fiercely protective of his wife and child now needs help to do simple things that many take for granted.
There is something else I want to share with you about what happens when the door closes at night. The amazing love and strength that our family has as we battle this disease. The fact that while ALS has taken our dreams for the future we have adapted and created new dreams to achieve while we can.
I don’t know about you but my drink is empty. This caregiver doesn’t get to have seconds. I have a husband to care for and need to follow up with the boy to make sure he got his homework done. I can’t thank you enough for letting me just talk but I need to walk you to the door. Please say a prayer for strength not just for my family but the other families that are fighting this disease as the door closes tonight.
All my love,