I know when people say they want to pray for me due to my situation, they say it with the best of intentions. My personal beliefs on religion and spirituality are erm…unique to say the least. Also kind of irrelevant. As a caregiver, I hear this so much, “sending prayers your way!” “sending positive vibes!” What do you say to that? “Oh boy! I can feel those vibes already!!” What I want to respond with is, please don’t pray for me, please help me. Please order me a pizza, please mow my lawn, please listen to me, please give me a hug, please tell me everything will be ok. I believe in the power of prayer, eh, sure. Ok. I grew up in the church, I don’t really practice it anymore but I remember something from the bible about faith without works is dead? Something along those lines? Maybe I’m wrong or maybe I’m taking it out of context but I think I need to just straight up say thank you for your thoughts and prayers. Your thinking of me, is wonderful but it doesn’t change nor help my situation right now in this very second, in this very moment. What I need is extra money, what I need is a maid to help clean the house because I feel so overwhelmed. What I need is a respite. What I need is a break from thinking about death, dying, medications, doctors appointments, and what-ifs. It’s always those what-ifs.
But let’s flip the coin!
Let’s say one of those wonderful people said “Chris! You brilliant little son of a turd! You’re absolutely right! I’m gonna pay for you to have an all inclusive stay on this wonderful Disney Cruise for four magical days of fun and I will stay with your dad so you can get the break that you need. I’m gonna clean the litter box, make sure he takes his meds, get that lawn mowed, clean the gutters, keep that whole house disinfected, you’ve got nothing to worry about! You just go have fun!!” Well, no. Wait a minute. No way. I can’t just up and leave. You don’t know his medication schedule. You don’t know what to look for if he’s feeling this way or that way or what to do if this happens or that happens or what if….what if. What if.
What’s the thing about it. That’s my problem, it’s the “what-ifs.” I have to remind myself that the “what-ifs” are so unlikely to happen that I am robbing myself of my own life. I am robbing myself of dating, I am robbing myself of going out and socializing, I am robbing myself of taking classes on campus, I am robbing myself of joy. I have made myself a prisoner of my own house because I am afraid that if I’m not around something bad might happen to my dad. In a way, it’s almost narcissistic. Like I am able to prevent something bad from happening. The fact of the matter is that my dad has a terminal illness and if it is his time to go, no matter what happens, whether I am there or not, it is his time. I am sure that maybe, just maybe, I could catch something early or see the signs of a major disaster, maybe call 911 and just maybe get him to the hospital, maybe they could add some time but realistically I am in a constant battle with the grim reaper and he will win. Maybe. Maybe and what if. So many maybes and what-ifs. Until then if I continue this battle, death itself is ultimately going to suck the life out of me and yet, my dad is still alive. The grim reaper might be hanging around but he hasn’t knocked on the door yet. The fact of the matter is that I am slowly dying mentally, emotionally and socially while my dad is alive and well…or as well as he can be with or without me being there all the time.
Realizing this, I decided to make a few changes. I’m taking a class at UCF on the main campus which is about a 45 minute drive from where I live. It’s a relatively difficult class which means it will probably force a lot of us to create study groups. I’m hoping that it will create some socialization for me. It’s been two years since my ex-fiancé and I broke up, almost to the day actually, and since then I haven’t really dated and I feel I’ve almost forgotten how to. My last date was a few weeks ago and was a complete failure but I have to keep telling myself that it was kind of like a practice run? She was nice, sweet, we had a lot in common but I only have so much to talk about: fishing, my dad, cancer, psychology, and…that’s really about it.
I suppose the moral of the story is, do not forget who you are. Keep doing your hobbies, keep doing the things you enjoy doing even if it means taking a little bit of time away from your patient/loved one. If they don’t understand or become upset, try and explain to them that it’s difficult for you to see them in the state they’re in and that it’s important for you to just get some fresh air. If it comes down to it, get counseling either individually or together. You cannot help your loved one if you are unable to help yourself.
Remember, you are never alone.