Tuesday, October 18, 2016
Ok, so I can't call in sick any more cause I don't have a "job". My new job is taking the night shift and Saturdays and Sundays with Dad. In case you don't know, my dad is in late-stage Parkinson's Disease. Slow to sometimes no mobility. He needs help getting out of bed, getting dressed and into and out of his lift chair. He can't prepare meals, but at least he can feed himself. It takes almost 2 hours for him to eat a meal. He sits in his lift chair with a bib (from which he picks food and eats it) using a tray. About the only thing he can still do for himself is go to the bathroom, but he sometimes needs help getting onto and off of the toilet. He was never a big talker to begin with, but Parkinson's has made him mostly non-verbal. Lots of times you have to force him to make eye-contact with you in order for him to acknowledge what you are saying.
I am not complaining. This is much harder on him than on me. But the truth is, being the caregiver of a parent generally sucks ass. Yes, I have read all the motivational crap about this being a time to "bond" with said parent, especially since adulthood separates children and parents. It does, however, require the willingness of both parties to bridge that gap and TRY to make a relationship. When my dad first came to live with us, I sat on the couch next to him every..single..night for about 6 months. Watching the same shows over and over again (hmmm, reminds me of toddlerhood), commenting on said shows or even opening a different topic. I got zero response. It was like talking to a wall. I wracked my brain for the little extra things I could do for him. The things I do for people I love. Because I love them, not because I want kudos or reciprocation. Those things mattered less to him than my attempts at verbal communication,
Oh, did I mention yet that apathy goes hand-in-hand with a Parkinson's Disease diagnosis? Cause it does. Trying to help someone who could give a shit less about helping themselves is like banging your head against the wall. Why bother? I am a "fixer". And I can't fix this. It is not going to get better. In fact, it is going to get exponentially worse. There are plateaus in between the declines. A blessing? Somewhat, but they tend to lull you into a false sense of security of stabilization. There is no such thing as "stable" with Parkinson's. You fix one thing, and twelve other things go haywire. For instance, consequential reasoning is now gone. He can only walk with a walker (a rollator one). I can tell him all day long (and WHILE he is doing the thing), that if he leans over to pick something up off the floor, he will fall down. He still leans over. If I am not right there to stop him, he will fall. Sometimes, we have to call rescue for fall-assist. Because he is 130+ pounds of dead weight and I barely weigh 115. I have strained both wrists and pinched both sciatic nerves. Bumps, bruises, scrapes. Nothing compared to what he deals with every day, I know. I can only compare it to having a fully-grown toddler.
So, I still have Monday-Friday, 8:30am-5:00pm "to myself" when the daytime caregiver comes. Since I quit my job April 1, I have reworked my garden, cleaned out the garage and made 3 trips to Goodwill. I have completely re-done my kitchen and even repainted my kitchen table and chairs. I have cleaned out cabinets and closets. Done lots of beautification projects. Added a gazebo to my patio so I have a sanctuary. I have billions of reasons to be happy and content. My time off from caregiving is wonderful. But, somehow, it tends to make the time on-duty even more excruciating. A taste of freedom......Saturdays and Sunday have become exhausting. Getting him up, dressed and fed in the morning takes almost 2 hours. Then there is lunch. And dinner. And bedtime. Ah, bedtime, right? Nope. Parkinson's also comes with insomnia. Even when Dad can get to sleep, he doesn't stay asleep. Every time he wakes up, he wants to go to the bathroom. This is sometimes 5-6 times a night. He has a call button and I have the pager (receiver). I fucking hate the sound of that thing. Truly. He doesn't really have to pee. He is on dialysis now, so his kidneys make practically no output. He will sit in his lift chair ALL DAY LONG and never go to the bathroom. But, oh boy, at night??? Are you freaking kidding me?
I still have 2 teenagers, 2 cats, college and a household to maintain. I pay all the bills. I am responsible for household inventory control, management and procurement. Meal prep, serving and clean-up. Medication control, management and procurement and dispensing. Oh, and did I mention laundry? Someone said to me when I first got my dad, "Oh, you would be doing all those things anyway." Yeah, I would love for that person to come be me for a full 24 hours.
Sometimes, like right now writing this, I can't stand to hear myself.
I am not making fun of my Pops. But Parkinson's???? That is one real whackadoodle.