@suppiskey2surv sorry for the delay in responding but it's been an up and down weekend. Everything you said resonates and you are not being selfish. You are being human. I've had both experiences: I've felt like I was a ghost and like the staff didn't even realize I was there and I've also had the very attentive and caring staff. When you experience the former it can be quite alienating. I felt like you were in possession of my thumbs and typing exactly what I was thinking when you mentioned that people don't understand fully how much we do. There are just some experiences that cannot be explained in words-things that cannot be fully undersood unless you've experienced then first hand and caregiving is one of those things. I too have seen my own health decline while caring for my loved ones. A coworker said, "Well, no offense to everyone else but you need to put yourself first. " I could've gotten angry at that statement but I realized that it wasn't that he didn't understand, it was that he COULDNT understand. He doesn't know what it's like to have to help my wife into bed because even a simple act like that of getting into bed takes her breath away. He doesn't understand she's just that dependent on me. He doesn't understand that I have to cook the "regular" meals for the rest of the family and cook another low potassium one for her, then wash everyone's dishes to boot. He doesn't understand that while washing dishes I have one ear on the master bedroom because, like last night, i hear her throwing up in the master bathroom sink, and i have to rush to her aid. Putting myself first means people don't eat. He doesn't understand any of that, but more importantly, he CAN'T understand that so i don't blame him for it or get mad. I just responded and said, "I hear you it's just a little more complicated than that" and I left it at that.
You are so spot on when you say we're busy trying to hold our lives together. Thats 100% what it's all about-putting one foot in front of the other, trying to get through each day while at the same time putting on the face, trying to remain positive when there is no obvious reason to be and constantly trying to tell yourself, "you've got this" and digging deep down for the strength to give negativity the middle finger because out loved ones need us and the need us to be their rock. And when we feel like we're reaching the end of our road wanting to throw our hands up, that's where people like and others in this group help. When I need to let out the figurative scream I now have a safe space to share with people that I know won't look at me as a whiner or complainer. I have a space with people that truly get it and understand that I'm not looking for pity and I'm not looking for sympathy. I just need to get it out in a healthy way so I can focus my energy on helping the people who depend on me.
Please know that in this space you are heard, your feelings are valid, they matter, and they are justified. If you're not sure whether or not they are, then lean on us and we'll remind you that you're doing the job of two people-pretty amazing when you think about it, and couldn't think of a more honorable reason for it.