This morning, it was the whining of one of the dogs that woke me. It was time to wake up and start the day, at least for them. Before I could let the puppers out, the Big He needed to be suctioned. Once the Big He was taken care of, the dogs were let out and a big cup of coffee in one of my favorite mugs, my Red Hidden Heroes, was made. Walking back to the bedroom my eyes are immediately fixed on the Big He to ensure he wasn’t in any distress, which thankfully he wasn’t. He was just reading the morning news and checking on his investments. This is how our first 15 minutes of our morning starts, hopefully. As I wait for caregiver B to arrive, my mind starts spinning with the things that need to happen today which started with a call to our VA nurse case manager to follow up on a concern I have regarding obtaining physical therapy. Once B arrives, we remove pillows that support the Big He, switch ventilators, remove the feeding tube, move the communication device, grab the motorized ceiling Hoyer and move him to the shower chair so he can use the bathroom. Once done, we reverse what we just did to get him back to bed and in a comfortable position.

At this point, B starts the rest of the morning routine like breathing treatments, crushing meds, getting food and water loaded into the feeding pump, and trache care. I will typically go check on the Little He, grab another cup of coffee and stand in the middle of the kitchen and try to figure out what is next. This is where I struggle. There is NEVER a lack of things to do but still most days I cannot do what needs to be done. The Big He is physically paralyzed and I am mentally paralyzed. Fear. Anxiety. Depression. They all play a part. It’s worse if I have had little sleep or if the Big He is having a hard time. My mental and emotional health is on a never-ending roller coaster ride. I try and hold it together for the Big He and the Little He but there are days. Days that I am only functional enough to do caregiving duties, but I am of little real use to them or myself. There are days that I choose to just sit on the couch over taking a shower. There are days I can’t find the energy to call or text someone back. Some days I look around the house and see the mess but I honestly don’t care. Then my mind races to the fact I should care or the thought of how I should have the house clean just in case…just in case we need EMS to come in or what if he dies and a host of people will be flooding the house. Of course, those thoughts are quickly replaced with “Fuck it”. So I go back to staring at the blank TV, watching the dogs just be dogs, or mindlessly watching TikTok until I am called to help the Big He out. My energy is reserved for the Big He. That is what being a caregiver to someone that needs total care is your life melts from one crisis to another, one breathing treatment to another, one load of laundry to another until you realize that there are days that you live your life on the struggle bus and you come to accept it because that is what being a caregiver to someone that needs total care is about.