Hi, I've been struggling with this lately: given that caregivers are taught that patients who are sick and have limited mobility need to feel in control of their experience, and we are taught to be patient and indulging to what the patient needs, and to do things their way, etc, etc, also, since we know that bedridden patients are supposed to be turned or switched positions every two hours at least, here's my honest question: How much is too much? Right now, my dad has literally 4 or us at his beck and call. 4. His wife and his three kids since my younger brother and I are here temporarily. Lately, he's been sleeping more so that helps us, for his to be resting, but when he's awake it seems to me that he's been allowed to be too controlling. Since mom and older bro are his full time caregivers, I was not even aware how intense the situation had become. But since I've been here for a month, it's like sometimes every 30 minutes, or every hour, or every two hours he needs something. Is this normal? Is there any way that caregivers have of being able to get a balance with the patient? I mean, of course he can't do for himself, so we literally have to be like servants to him, but it seems every now and then, to me, like he abuses it a little. He'll have us doing several things that are important, like meds, and food, and adjusting him in the bed, which takes three people now, and then, when everybody is done and trying to get their own breakfast, he calls us back in for little things like, can i get a some ice in this juice, or can you take this dirty dish back (we're not neglecting him by leaving stacks of dirty dishes by any stretch of the imagination), or could you scratch my back, etc... and all those seem like legit needs too, but honestly, I didn't eat breakfast until noon time and then nearly burned the bacon because we had to keep going in there for each thing. When he's getting adjusted in bed, he'll keep insisting that there is a crease in the (very thin) pad he uses under him on the bed, and my brothers have to re-initiate the hour long shifting with pillows under everywhere, etc trying to roll him around while I try to find the tiny tiny almost imperceptible crease somewhere. Is this normal, caregivers? How do you cope? I know he can't do any of this for himself, but are all patients this seemingly demanding? I guess those of you whose loved ones have super limited mobility might be to whom I'm speaking most directly. People talk of elder abuse, but is there such a thing as an overly demanding patient? But whose demands are on the one hand reasonable since he can't do it for himself, but on the other hand they seem like they don't realize four people are waiting on him hand and foot, and sometimes he won't wait for someone to have or finish their meal because he's like, it really hurts, and I feel bad for him but I am also feeling like he could also be more flexible, except for that mandate to caregivers that they must give the patient control because they are so disempowered.
It was a useful experience, though, because it taught me that I will NOT do such 24/7 caregiving again for her.
I realize that her world is narrowing (and had really narrowed then until she recovered), but that is no excuse for her to maintain tight control over every little thing with the aid of her daughter-slave.
Sadly, no matter how many times I yell, nobody appears in the room and scratches that really itchy bit that I can't quite reach, there, no right a bit, yeah there ooch ah yeah oo that's better...
Distinguish between his rights, needs, wants and whims; ensure that there are enough people - family or outside - to supply the care required; and from there set up boundaries accordingly. In control of his situation does not mean in command of everybody else's time and free will.
P.S. You are still allowed to be nice to him! Scratch his back if it suits you :)
Has your dad been evaluated for cognitive decline/ dementia? Was he demanding and/or narcissistic before he became immobile?
CTTN55, yes, I am convinced also that I will absolutely prefer to be in assisted living where professionals do the intimate care, etc, rather than have a family member do it. I don't have kids though so nobody will have to go through what my brother is going through. I 'm not sure parents who expect this from their _children_ realize how psychologically disturbing it can be, especially I guess, opposite sex siblings. I think spouses of the sick forget that of course, for them, the intimate stuff is what they're used to from being a married couple. Mom just doesn't even have a thought for the fact that, um, no, I don't feel comfortable cleaning dad's catheter, or after a bowel movement, or applying butt paste, etc. Is it really too much to ask to be able to set those boundaries? I have, but it's been a struggle. You know what's funny? And by funny, I mean terrible irony? One of my aunts who was visiting said she was surprised that mom was able to do the bathroom care, since when we were babies, she couldn't stand to change our diapers and my dad had to do it. So of course I felt guilty. I just don't think its the same when it goes parent to child as it is backwards. They saw us as helpless babies who they made in the first place. We've only known them as adults for whose whim we exist. CTTN55 OMG, the JUST SO all the time! Thank you every one for your empathy and I apologize that my rants are so damn long. It really helps to hear from others going through these things. When I heard before "she takes care of her mom" or "she took care of her dad for x years till he passed" I never imagined the gory details.