When caring for Mike became my sole responsibility there was a lot to learn still. We had spent over 2 years together while he still lived in the nursing home where he received care from them with their protocols. Once he lived here we were able to establish new protocols that were specific to his care. Turns out, some of those things specific to him are now helping me with Taylor.
I have an intuitive nature that helped me figure out how to help him in emergencies that we both were always grateful for. He could always tell what was going on with his body, which is unlike most paralyzed people due to ALS unique nature of letting you know exactly the hell you are now living in. Mike was such a huge supporter for me but more so when he moved in with me. As one family unit, he wanted to contribute to not just me, but my girls. When I would tell him what was worrying me about them (mostly Taylor) he would first and foremost ask if I had time to pray with him, if not, he did it without me. He would message me when he was done. My prayers were always quick little thoughts both good and bad and would be throughout the day. Mike's prayers were these long meditative sessions. I often didn't have time to pray with him but sometimes I would say... yes, but I'll need to duck out of this if I can tell I'm needed. He would message me when he was done and I would pop in and say "Amen".... he would enjoy that ending.... me too.
Some of the things that I started doing with him to help keep his airway clear worked great, some not so great. I could usually tell on my own what the outcome was, whether it had the desired outcome. But Mike could tell me how it FELT. That was a huge help for me when caring for Taylor. When Mike realized how much his input could help me help Taylor he started thinking more about what things could be similar between the two of them and how maybe he could help be a voice for her.
Both of my girls have been sick this month. Not quite hospital sick, but that is a small difference sometimes. One night I had been working with Taylor for about 3 hours (2am to 5am) trying to keep her airway clear and oxygen levels in the 90s. At 5am when I took a step back and tried to get myself out of reaction mode and into thinking mode, one word popped into my head....... cuff. I often get these little one word insights at just the right moment, so often that I no longer question them, I just do them. I knew what was now needed, I deflated her cuff and the change in pressure made her cough really big. Once she made her secretions mobile, I could get a LOT more out of her. Her oxygen numbers popped up to 98%!! That was a huge relief and a huge difference.
Once I sat down and started thinking about the past 3 hours it dawned on me why "cuff" came in my head. That was a trick Mike and I came up with together. When we used that method in a hospital setting, I would often get myself yelled at, but it worked. Mike knew that when we decided to do those things the consequences initially were on me but if we didn't say our sorries and show remorse, things got worse. That is always an issue with patients with chronic conditions. Mike knew what he needed but they would never do it, they wouldn't even put air in his cuff when you could hear it leaking...... crazy rules sometimes take away from actual patient care.
Once I knew that my intervention was actually Mike's intervention for her, I could breath better. He's still helping me.
Remember the songs that will randomly play that I associate with Mike...... well sitting in Chipotle the next day one of those songs played. Picture it..... Chipotle.... what kind of music do you hear while sitting in a Chipotle.... now imagine this song coming on...... Dance Me to the End of Love......
Such a good feeling.
