I usually post here about reading and writing, which is my passion, but today I'd like to address care-giving. I've been a principal caregiver at two separate periods in my life. Recently, someone I love very much has been forced into a similar role. Her struggle inspired me to look back on what I learned and (maybe) draw some conclusions.
Care-giving is hard. That sounds like a no-brainer, but until you've done it, you can't imagine the myriad ways that "hardness" manifests itself.
Physical: I will learn to handle whatever I must, everything from changing a colostomy bag to cutting your toenails. All the physical "rules" that adults cling to will be broken. I will help you shower. I will feed you like I fed my babies, a spoonful at a time. I will wait outside the bathroom and do whatever you need help with. I will, somehow, learn to get a person the same height and weight as I am from bed to wheelchair and back without breaking either of us.
Emotional: I will (try to) understand that your moods swing from hope to despair, from anger to gratitude. When you lash out at me, I will know it's not me you're angry at. When the doctor gives you the next bit of bad news, I will be strong for you. (I'll cry by myself, later, alone). When your friends visit for too long and gush about how well you're doing, I won't scream and order them out.
Clerical: I will learn your bookkeeping system, pay your bills, write down the kind of cereal you like, and chart how your home is run, so that things are as you want them. I won't mention that checks don't need to be recorded in three different places, (though it will be hard not to).
Personal: I will put my life on the back burner. If I continue to work or volunteer or even socialize, my thoughts will be on you when I'm away. I will make myself responsible for giving you every bit of happiness you can find in your remaining days, because those days are numbered.
Intellectual: I will learn everything I can about your condition. I will count your pills and tend your wounds and monitor the machinery that helps keep you going, despite my ignorance and even fear of it. (Is it possible I might overdose you with that morphine pump?) I will scour the internet for genuine information on what's best for you. I will protect your from scammers who offer false hopes to the afflicted and the dying. At the same time, if it's fairly harmless stuff, I will listen as you tell me about the cure some doctor in Haiti has discovered. I might even help you investigate it, because I know that you need to believe something will take away your death sentence. The last thing before I sleep and the first thing when I wake will be plans to make your life better.
Conclusions: Care-giving can bring growth and satisfaction, but that often doesn't manifest itself until it's over. In the day-to-day actions, we become manic and focused on the next moment. We do what we must, but we seldom reflect on what the overall result will be. That's because the overall result is often bad. For me, those horrible times are over (for now). They forced me to do things I would never have dreamed I could do, both good and bad. They also created in me an urge to reach out to others in the role, to offer to listen, to give a short respite, to express both empathy and sympathy for their daily struggles. There's nothing like talking to a person who's been where you are to convince you that you will get through this.
Care-giving leaves us doubting ourselves. "Was I patient enough?" Probably not. Possibly yes. There's no standard to measure what you might have done against what you did. Your response, no matter how flawed, was the only thing you could do AT THAT MOMENT. Don't look back and second-guess yourself. Love yourself for doing what you could for someone you loved.
Though each situation is unique, those who've been there can help. I found this booklet helpful, though it's possibly a bit outdated (2015)