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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.

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Oh I can so relate. My mom actually asked me one day if I could take the bottle of water from her hand and put it down on the table for her each time she took a drink - total distance maybe 24 inches! I not only said no, but "how lazy are you going to get!" She got over it and managed her own damn bottle of water...
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Thank you for your answers and for sharing your personal information. Rainmom, I have thought about the FOMO aspect of being in the bedroom while we're out in the living room, but for about ten years or so, since his legs started giving out, dad's been an avid TV watcher and our family is not a warm "golden moments" type. Neither have we ever been a close "shared time" family, ever. It's like there is an expectation from our parents that, in their declining years, their kids will suddenly become totally different people than how they raised us. We're supposed to go from cold, intellectual, no emotion, total independence required from us as kids, to: the ultimate warm sacrificial martyr caretakers now that they need us to be. Frankly, it's not in my DNA. As it was not in theirs. Also, he was not this demanding pre loss of mobility bc he could do all these things himself, and he was even less demanding than a regular hubby bc my mom is not a traditional wife, so dad and I pretty much did the cooking when we moved back to the US where it's too expensive to get maid service. So, this is "new" to my dad, meaning since he got sick enough to need a wheel chair and gradually worsening from there. And as the situation gets worse, the demands get more frequent and numerous. Short-term, as CTTN55 mentioned, would not have felt like it was such a struggle, but when I query my older brother, he's like "oh, it's been this way all the time." Not ten years of complete paralysis, but gradually, it's been increasing. I guess the intense level of demands may have been the last year or two, with the worst of it since last December. But I've been here only a month and I already want to blow my brains out. And I love my dad (maybe not enough? I'm realizing?), and he was always my helper of dealing with my mom's crap and unhelpfulness all my life, so I do feel a sense of compassion and duty, but I guess if it were up to me, I would have gone a different route and gotten him in assisted living, or, depending on how much money is saved for this, a permanent full time nurse or CNA for this last stretch of the game, with visiting every day and maybe even trips home for the weekend or some such. Or if he and mom together had an assisted living apartment, they'd be together, and meeting other elders in the neighborhood, and not lonely. And they could have some of their stuff there, and we could still keep the house intact for them-for mom if she could move back after dad passed. It's become apparent to me that I would not be psychologically stout enough to do this type of caretaking for my dad. I'm so heartbroken to see him lying there naked and in pain, and dad and mom and my brother arguing, yelling over how to do the daily tasks that repeat each day. I feel shell shocked. Even though it's repetitive, each time it's like they're doing it for the first time bc mom forgets the steps. And she's the one who most refuses outside help! She cites both money and not wanting "strangers in the house" as reasons. I've convinced dad to hire a smidgen of help for my brother at night, two days a week. It hasn't happened yet but he's talked to both of the professional caretakers already. (Brother welcomes all the help we can give). It's not enough, still, in my opinion.
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.
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This is a really good question. I am remembering back to the 8 days/8 nights stint I had to do staying with my mother 24/7 because she somehow strained her back and neck. She was pretty helpless, and made ridiculous demands of me. Everything had to be done JUST SO. I was cleaning the toilet, and was ordered to use a particular rag in a pile of rags in the garage. I had to clean her glasses and hang the lens cleaning cloth JUST SO on a towel bar in her bathroom. The chair she used to put her clothes on (with help) had to be placed JUST SO in the bathroom. When I was taking her to the neurosurgeon (to consult regarding a cerebral aneurysm), I moved some stuff in her garage so she could get her walker around the car to get in. When we got back, I had to move that box of paper bags to EXACTLY to the inch to the position it was in previously. I resentfully complied with her microdemands to keep the peace. Even so, by the end of the week we were barely speaking.
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.
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The patient needs to be in control of his situation to the extent that a normally functioning person would be. Because of his disability he needs help to achieve normality.

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 :)
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Was your father this demanding when it was just your older brother and your mother? But I my guess as to what's going on would more or less be the same regardless of your reply. So - barring any cognative impairment- could it be that your dad just wants to be involved in what's going on? It just stuck me that if having you and your younger brother home is a bit of a novelty- that having his whole family together is reawakening his need to be head of the family - and being in a separate room from all of the goings on is making him feel anxious and/or left out. Perhaps you all are viewing him in a patient role and he is seeing himself in a leader role - but one that's now all distorted due to his illness. Even if he was doing this prior to your arrival, I imagine it's much of the same thing. He wants to know what's going on "out there", he wants to be included and viewed as leader of his pack. If your father was always an "in charge" kind of dad, I'd say my guess is probably pretty close to the mark. Sounds like bringing your dad out to be with you all is not possible. Is it possible for you all to go into him? Perhaps start the day with everyone eating breakfast together in his room? I know that probably sounds like a pain in the rear and logistically a mess - but if it would reassure him and thus cut down on the "plump my pillow" stuff, maybe it would be worth a try.
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My dad was the sweetest guy. Never asked anyone to cater to him but after a particularly difficult hospitalization all bets were off. It was just as you described. A job for everyone all the time. As many people as were there he could assign a task. We finally figured out it was anxiety. He kept taking nitro. Couldn't breath. Wanted someone to fan him. Everything my poor brother would try to have a meal, my dad would ask to be taken to the bathroom. In my dads case, he got past this phase and once he regained his strength, found out he could breath, didn't have a heart problem etc. He settled down. But it was exactly as you described for a few weeks. Very stressful for everyone. My dad lived another five years after that and I never saw him be so needy again. It never occurred to us to tell him no or that he would have to wait. We were all in shock I think at the condition he was in. We weren't worried about control. We knew he almost died and we wanted to take care of him. I'm not sure what we would have done if it had continued.
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So, how long do you think mom and brother are going to last, doing this?

Has your dad been evaluated for cognitive decline/ dementia? Was he demanding and/or narcissistic before he became immobile?
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