Why do so many aging parents expect their children to do ALL the caregiving work?

CM and cwillie - I totally agree, the denial and deceit can be the worst part of it. Sometimes I feel like the parent of a 4-year old, looking back and forth from the new "mural" on the wall to the ink-covered child, thinking, "How dumb do you think I am?"

Dorianne; You're so right! What a great analogy...

The deception especially, hiding symptoms or injuries is such an insidious cycle. For me I found it makes me hyper critical of my dads' health. When I can't trust him to share that he's hurt himself or having new symptoms (very common in MS) I end up annoying him with questions. I'm still working on 'backing off' and not assuming every thud or cough is Something Serious.

Part of the reason he is so closed off is not wanting to worry me...but we talked it out. (I'm forever thankful I can still have conversations with him and that he is cognitively ok.) I explained it was MORE stressful trying to mother hen him, and that if it was something he wasn't comfortable sharing with me, we could call/visit his family doctor instead. He seemed to really appreciate my understanding that as his daughter it was uncomfortable to talk about some things. (Which honestly; I'm Not Keen To Hear Those Either Buddy! haha)

Linking my ramble back to the original topic; it's amazing the sorts of things parents will hide in the name of not causing worry/work for their kids...which sadly end up being more serious the longer they stay undiscovered.

BarbBrooklyn,

You're right: We shouldn't expect a parent with dementia to grow some gratitude, and I don't (though I might wish!) Mainly, I just wanted to share my personal experience regarding a parent who expects me to do "all," which seems to be pretty consistent, even among those with dementia.

Dorianne, sorry, we went out of town over the weekend to a working event, so not any time to chat around on computer, but, yes, you were right, I was talking about renal stages; he was never dx'd with Alzheimer's - "merely"? dementia; who's Shane? need to go back and look - let me see if I can relay this in a sensible manner - when he was admitted to the icu - well, I guess, really the next day, after we'd gotten him somewhat fairly settled down though still delusional while I was with him I heard the icu docs, probably especially the nephrologist - well, actually let me go back, they actually used the phrase "kidney failure" on my way up there, with me not knowing that phrase, like "heart failure", starts getting bandied about way before - say, less that 15% but I didn't know that so scared me to death - anyway next day overheard the nephrologist discussing it with the other icu doc as to whether his function had just dropped so therefore needed to be addressed or whether they felt it was his "normal"; well, since I heard them even though they didn't say anything to me, assuming they assuming I'd have no idea and they couldn't ask him, but I did know he'd just had a complete work-up the month before so couldn't we get his records; they were shocked - so a thumbs-up here for our/his VA anyway, not sure if they knew before, but know they'd dealt, not sure if that one or just VA in general and not had good success, why they didn't say anything, so not sure if typical or just had good rapport with them, but just called them right up and they had those records like ASAP, showing that, yes, just the month before everything had been fine, so this was definitely something that had just happened so therefore needed to be addressed but at that time we weren't talking anywhere close to 15% - wish knew what renal stage 4 goes to - but they were talking more like 50%, so maybe stage 3? certainly no talk of dialysis at that point; don't fully understand how relates to renal function but they put him on epigen? shots they said were a blood builder; it wasn't until almost a year later that the conversation was had saying about the borderline; however, that's when it was discovered that, although he was supposed to have been on the epigen for that year, he had not been, part of that mass of miscommunication, so maybe no wonder his function had dropped; when that was discovered and also that he'd not been given another shot for "another"? condition - or were they related? they at least agreed to have his iron? tested in order to see about starting, although the consensus seemed to by that point that it wouldn't do any good since it had been so long but they did try but it either didn't do any good or had side effects, not really sure if connected or not but does seem like not long after that is when he wound up in the er when they said it was his gall bladder and needed to be taken out, although why? with his kidney function being what it was, but honestly not really sure that conversation had been had; that might have been what led to it; however, while deciding to allow it, there was a shift change and the new doc didn't want to do it because of his heart function, even though later they said it was his best part, but I guess considering how bad they were then - or were they, was that later? - his kidneys were guess not really saying very much; anyway, he wouldn't do it, so then back somewhat to the same scenario as no dialysis for kidneys; what happens then? so he admitted him, sedated him - and, yes, we all know what that does - and hadn't thought about it, maybe that's what you do with kidney function with no dialysis - and put him on iv antibiotics - and, yes, I understand the abx issue but dad had hardly ever been on any his whole life - for a week
now having said all this, all this time my dad hardly knew any of this was even going on; he certainly wasn't making any of his own decisions at this point, so he didn't decide not to pursue treatment, although, as I think I mentioned - not entirely sure here but have - before all this happened, he certainly had said he had and was going to tell his doctor, though that wouldn't have been his nephrologist at that point, although by the time of the conversation with him with his kidney function having gotten that low, they certainly wouldn't recommend dialysis at that point, so now possibly the issue does become - cause what was he not wanting to continue to pursue treatment for? - his blood disorder that he had that he'd been on meds for - that I wish I knew how long their study had been for because he'd been on them for at least 7 yrs. at that point, actually maybe 8, but 7 at the point he made that statement but it was 8 before they told us nobody's supposed to be on them that long, so I'm thinking whatever I said about life expectancy wasn't particularly related to renal function but just in general, they just had not expected him to have lived long enough to have been on those meds that long and since they had turned him back over to his pcp they hadn't known he was until all this happened, but maybe that affected - later, when they did, and certainly entirely possible by that point, because there were many other things that had happened - his response to the dialysis - but I guess really, somewhat where I was coming from with this, is that it seems that while I was focusing on his blood disorder that was pretty obvious his meds had quit working anyway - his blood level was not being kept up by them any longer and the treatment plan was blood transfusions, which is a whole other issue - he was probably dying from his kidney function and we didn't even know, unless, had we known he was no longer getting the treatment he was getting in the hospital - again, that mass of miscommunication, so that maybe he would have been; however, having said all that, I'm not entirely sure how trying to keep him the right diet would have worked - both with him and with grandson trying, just not sure how would have gone - and didn't you say you had a hard time with your mom? or are having? have to back and look about that, too, just know at the time I/he/she was glad to be feeding him good and that he was enjoying eating - what other pleasure did he have anymore in life at that point? now if he knew it would help him get to that 100 mark....well, maybe, since he'd said it so much, but then again, like you said, but was all this over your mom and how the dialysis has been affecting her? and along the lines of not making much difference, the 2nd person believe I'd mentioned that was on dialysis has now passed away as well, so....

soccer, interesting you would use the auto mechanic analogy, since one of my sons is one - and, yes, a master one now - but one of the arguments he made to all the people who were just appalled that somebody as "brilliant" - their words, not mine - would want to be "just a mechanic", which, btw, they're called "technicians" now, when, as he told them, there are more computers in the cars now than in the rocket that took the 1st men to the moon; and since we happen to live in the "Rocket City" that actually did that, happen to know that even Von Braun, who I'm sure you've heard of, sought out the best mechanic around for his vehicle and he actually wasn't in the "Rocket City"; he drove out in the boonies to a little small surrounding town - so go figure, although, having said all that, I'd hardly call the doctors, nurses, etc. , at the hospital "apprentices", unless they were, which we had some in another situation but they were always working under someone who wasn't but having said that, yes, they are "practicing" medicine but I can't imagine how your dad was dealt with if he wouldn't keep his clothes on? but I do understand about the pulling the needles out, although I haven't really gotten into that here, I don't think, but he did get started on a long hard road - maybe my fault for allowing it but there were other reasons - of getting blood transfusions that he couldn't be left alone to have or he would do that splattering blood all over the room; now I also don't know if I mentioned his Haldol experience either, though I do know I did not know anything about how it affected him; I know they were giving it to him to sedate him, which, even though I know what's recommended about it and about the reason for it but that's not for when you've been admitted to icu with iv's for something totally other, so not sure if had it been doing that I would have had a problem with it but either it wasn't or he at least wasn't, not sure if had to give it to him or was just the option they were given - my take on the matter when I got there and he may have even been saying it was that he always took 2 otc sleeping pills before he went to bed and would normally then go right to sleep; I felt that if he could just have them - or possibly, based on some things that have been mentioned here, maybe even m&m's might have worked, just something, though I didn't think about that at the time - but that they couldn't do without authorization from the doctor, which - and I can understand this,too, and I didn't know this doctor and don't know how well they did - they didn't want to call him in the middle of the night, which it was by then, but I did stop the Haldol - won't go there - but it wasn't working, so then what? so they did call - at my insistence, with me there, not sure what would have happened otherwise and, thankfully, yes, he was glad, at least since I was there to tell them what had worked; otherwise, had they just done it without that I don't know - perfect example of "practicing"; I felt for them, they didn't know him, they didn't really know what to do - he authorized something, not really sure what, but now here's where I'm not really remembering, no, think their pharmacy was open, know I was somewhere where theirs wasn't all the time but they kept basics on the floor, so no really sure but we/somebody came up with something, he got his 2 pills and he was fine but, now, that's basically the only thing I did that with; I didn't question everything they did

soccer, my dad's hospital was just about the most relaxed I think I've ever seen - they didn't really have visiting hours and I was able to be with him all day every day and could probably have stayed overnight with him as well but they had a whole wing of nothing but beds on the same floor that were a lot more comfortable; they didn't have extra actual beds in the room and once we established that going to bed routine he pretty much was okay overnight so I didn't feel the need to stay and we both knew if they needed me I was just right there for them to come get me; how did your dad wind up in 3 hospitals? there was some talk with us of moving dad and the blood transfusions later thing could have been a reason but there were reasons not to as well, so we never did

oh, just an update on the situation I mentioned to Patricia with the person who had a stroke; the very thing dad wouldn't have wanted to happen, don't guess anybody would, although, ironically, even though not a stroke with dad, still wound up in same situation; didn't take this person out immediately, either, was put on life support - no, no DNR, never expected, maybe something should be done before any surgery? then didn't respond, so the big decision was brought up, not really sure who actually ended up doing, but was done today and is over, so...

MaryKathleen, I think I missed this back then or was busy and just let it go by, but understand where you coming from with hub, kinda been the same way, but maybe need to start paying more attention; latest is arthritis in his wrist? the one he uses for work to move that mouse around, although he's actually lefthanded; can he get one for that hand; doc said there is surgery, so, here we go again, but wanted to try Mobic - now this is the part that concerns, he didn't even remember anything about how it affects him, wondering if I should call his doc and see would they let me put it on his list of meds not to be given; he'd said he'd never take it again - it zombies him out; it's horrible but that he didn't even remember that? scares me

McAlvie,
Your mom sounds like mine. When she had her health and wasn't on oxygen and I tried to get her out of the house to dinner with my boyfriend and I. The excuses started the morning of the thought of an outing. I didn't sleep last night, I got diarrhea, I think my blood pressure is high, I need to rest and see how I'll feel around dinner. REALLY MOM? She was a loner her whole life. She stays home to be close to the smokes, now that smoking in public is socially unacceptable. Now the present day. Attached to oxygen 24/7 with emphysema/COPD while smoking and drinking wine coolers. Lies about changing her diapers and showering. Too lazy to change diapers, but has ability to walk to patio to smoke. When I flat out say MOM get in the shower you stink and I know you have not showered in weeks she replies....let me just rest a few minutes, after a cigarette. So frustrating! Now when it's time I demand go in shower and sit on chair. She stalls around still, but still we get it done. It's just why do they have to make it so difficult for us? Put up the fight, exert her energy and oxygen consumption.
Good Luck....PEACE, LOVE & HAPPINESS

Windyridge, my great-grandmother lived to be 96 and my grandmother lived to be 100

@Dorianne. Are you really interested in "Why do so many aging parents expect their children to do ALL the caregiving work?" and in how children can improve their relationship with their parents? Or do you just want to complain? Bullying people to not post is not the answer. You told me to stop reading what you write, so why are you reading mine?

MaryKathleen, didn't realize this was also your post when I was scrolling through last night - looking for Shane, but anyway - when I saw the one about painting your house - in the midst of everything else (which I know the one about your hub you addressed something I want to but not now) that was a real issue - dad had always taken care of his house, too, until he couldn't, but something that somewhat bothers he had taken the steps with his last house that it wouldn't need anything; had just put vinyl over all the parts that would have and it had always had stone on the other, but then...long story, Wal-mart came in across the road; they'd always lived right on the highway, had to cross to get their mail, although that got changed somewhat, part of the story, but anyway, they ended up moving, he didn't want to take on a mortgage at that age of their life, so wound up buying the cheapest house on the block, built for young couple as starter so nothing for end of life been done, so here we are with the worst sided house, eventually, yes, maybe, again, they outlived it? needing painting, but....now, in relation to original question, another long story, this grandson he ended up having move in with him to take care of him, part of that was the way they'd somewhat taken him in and given to him, so, yes, part of it was they felt he then owed it to them to return that, but...before that he wanted him to paint the house - for the same reason - but...one, he didn't feel he could - or so he said, was that the real reason, granted, dad had been a professional painter back in the day, but is everybody that paints their own house, or did he just not want to do it, pay back? well, maybe they should have expected more of that as things had gone along; anyway, guess for me I would have just done it, but another long story, but anyway, hub's not much of one, either, glad realized that with our own and bought prepainted, hardiplank for ours because I knew better, anyway hub not only didn't want to paint it, he wanted new siding put on that wouldn't have to be but, you know, it's only in writing this that I've realized he never mentioned what we have but only vinyl, which another long story, I'm just not comfortable, even if cheaper, but anyway, he certainly wasn't going to buy it, which is maybe understandable, not like dad didn't have it, but....and it was the last of his money, so anyway, long story short, nothing ever got done, so when he passed his house was considered uninsurable until it was done, which grandson still wasn't going to do, hub still wasn't going to do, he just wants it "sold", if you call it that and maybe you should, guess could ask why are you getting yours done, for you? or for later?

Subduedjoy...
Dorianne started this thread so it is her conversation to direct. If you don't want to participate in the discussion in a way that is helpful or relevant to Dorianne then I think you should start your own thread and invite comments there from people who think as you do, not continually attempt to take over this thread.

Sorry, Subduedjoy, but requesting that you move your off-topic discussion to a more appropriate thread does not in any way constitute "bullying."

Calling you on your inappropriate behaviour does not constitute "bullying" either.

Deb, my dad in three hospitals because their treatments failed him. Meds caused 180 degree in personality. His own doc saw him before meds destroyed him. I got him to admit, he was functioning before the hospital. He was not going to admit their faults till I spoke. Mechanic analogy, correct analogy

Subduejoy, don't bother with logic. Some here themselves. It's like talking to my gum flapping sister, rambling. Not capable of writing well. Too many words that are consolidable. Reading posts makes your head explode

Subdue, those who have time to post, have plenty of time to spare. You know them.

Soccer and Subdue: Why are you here?

I initially posted to try to answer the question: "Why do so many aging parents expect their children to do ALL the caregiving work?" I'm still here to try to answer this question and to give recommendations. But I seem to be reading a lot of complaints instead. Perhaps the original poster should have titled this topic: "What makes you feel so angry about your aging parents expecting you to do ALL the caregiving work?" I would have ignored the topic and gone elsewhere if she had. To answer the original question:

I think a lot of it has to do with mental cognition. People who are suffering from dementia often have trouble:

Making decisions.
Figuring things out.
Adjusting to new situations.
Not being taking advantage of.
Getting their needs taken care of.
Recognizing people.
…

Solutions:
Try to figure out what your parents' concerns are.
Give your parents time to adjust.
Introduce things slowly.
Listen to your parents.
Make sure your parents are eating a diet that benefits the brain. The brain is comprised mostly of fat. Good fats (e.g. coconut oil, avocado oil, fatty fish) are needed for the brain to function properly.
Introduce supplements that benefit cognition (e.g. curcumin, omega-3).
…

Please add on to these lists if you can.

I do plan to give more information about diet and supplements for the brain. However, I'm on vacation right now and have little time to post. I'll have to do it later. I will probably make a new topic for it.

Soccer100, is trying to tell others her experience so they won't have to go through what she went through. She's trying to help.

That is a good overview of the things elderly people may need help with, and a compassionate explanation of why they need help.

The question, however, is why a parent would expect this substantial input to be provided solely by their children, who may have neither the time nor the expertise to do the job.

Subduedjoy, why are you so obsessed with controlling me and my thread that you can't take your (probably interesting but completely off-topic) discussion to another thread? Are you that frightened no one will read it or participate?

Why you are so utterly desperate for attention that you continue to force your own personal/political agenda onto this thread?

How did you come to have zero respect for other people's boundaries?

Everyone else............

soccer100 is a TROLL.

soccer100 posts nowhere else on this forum but this thread.  Gosh, it's almost like he/she created his/her account just to f*** with us.  There is another troll on this forum who enjoys creating these sock puppet accounts for the purpose of trolling - perhaps it's even the same troll.   

soccer100 is only interested provoking a reaction, sowing discord, and encouraging others to drive the thread off-topic.

To repeat..........

soccer100 is a TROLL.

The only effective way to deal with internet trolls is to IGNORE them. If you respond to a troll, you are giving them exactly what they want, and they hang around even longer. 

PLEASE DO NOT FEED THE TROLLS.

@Countrymouse.

Why? Because the elderly have dementia. Their brains aren't functioning correctly. So everything becomes harder, not just for themselves but for their caregivers.

Other reasons could be:

* A lack of communication: I find that many issues are actually the result of miscommunication. We tend to think that others think like us or should think like us and make assumptions and act on these assumptions only to find out that these assumptions are wrong. For example, I know a man who knew a woman for a short period and thought he was in love. He told her that he loved her. When they were in the car he put on one of his CDs. A song came on that talked about having babies. The woman assumed he wanted to have a baby. That evening, she told him not to use condoms. He had put on the CD simply because he liked the music and mistakenly assumed she was taking birth control. She mistakenly assumed that his not using condoms meant that he did want to have a baby. She got pregnant, found out that he didn't want a baby, didn't want to get an abortion, had the baby, and sued him for child support. If only they had talked.

* A lack of understanding: I find that many people don't understand the other person's needs. We have all had different experiences. For example, my ex was extremely extroverted. He made the assumption that I was too. When he discovered that I wasn't, he tried to mode me into an extrovert. He felt that it was somehow better to be an extrovert than an introvert. Thus, in addition to miscommunication, he also had a lack of understanding. But I don't think he is a bad person. I made mistakes too. Another example is that I have ulcerative colitis. People who don't have it, especially people who aren't close to me and haven't seen me in a flareup, simply don't understand what it's like. As a result, they make erroneous conclusions. Soccer100 has experienced something that other people might not understand because they didn't go through what she went through.

These reasons might not be the reasons that your parents expect you to do ALL the caregiving. Some unpleasant reasons could be:

They hate you.
They want to see you suffer.

But somehow, I don't think these are the reasons.

Ooooo kaaay. 🙄
Sorry Dorianne, I'm going to suggest we abandon this thread, I think it has pretty much run its course anyway.

With due respect to Subduedjoy, many of our elderly parents don't actually have dementia. And some that do actually become nicer and less demanding over time.

There's nothing wrong with complaining (or, as we call it, venting). Sometimes it's good to commiserate with others facing the same issues. And sometimes there is helpful advice from someone who has had success dealing with the same problem. Even if not, it helps to hear from others facing the same issues with their elders.

My mother does not have dementia. What she does have is a lack of boundaries, especially with me and especially since I began taking care of her. For example, yesterday I was driving to her house and as I passed through town I called her and asked if she needed me to pick up anything from the local Walmart. She said "No, but you have to stop at the pharmacy - they called and have prescriptions ready for me."

First of all, the pharmacy is not a stop along the way, it's 10-15 minutes past her house so quite a bit out of my way. Second of all, they'd already told us that the one drug she really needed wouldn't be there until the following day, so there was no point making an extra trip there until the one she needed was available. But mostly it was the language "You have to stop". This type of sh!t burns me every time I hear it, and it's been over 7 years. Nothing is a request with her - it's all an expectation, almost a reflex in her mind. If she needs something, I have to do it. Aaaarrrgggghhhh!

So I told her to check if the drug she needed was here yet, otherwise I wasn't making a special trip since the pharmacy was way out of my way from the direction I was driving. Turns out, they had one thing ready and it wasn't what she wanted, so false alarm. Still, the attitude of expectation never fails to irk the he!! out of me. So while I can sometimes avoid complying, I am still left annoyed and frustrated by her attitude. I don't blame anyone for venting. Vent all you please!!!

According to the Alzheimer's Society, and if they don't have reliable figures then who does, 1 in 6 people over the age of 80 has dementia.

That's a lot of people.

But it also means that 5 out of 6 people over the age of 80 do not have dementia. They may have declining cognitive and sensory powers, failing physical health, increasing fatigue. But many still expect, and indeed have the right, to make their own decisions; and the corollary of that is that they are responsible for their choices.

My mother didn't like people. She was a very private person. The thought of making friends and building relationships and establishing herself in a communal environment, even the nicest, was her idea of Hades. She would have liked to stay in her familiar home - with its steep narrow stairs, four bedrooms and ruinous heating bills - supported by unseen and unheard servants. Failing that, because of her arthritis, congestive heart failure and consequent vascular dementia, she preferred to delegate her daily routine and life administration to her children - the only people whose presence she found tolerable.

Which gave us a choice: to accommodate her wishes, or not. I did, and I'm not sorry I did, mostly; but it cost me dear, for one thing, and for another I ought to have given more weight to the point that making this sacrifice did not cure my mother's dislike of being intruded on, even by me.

Had my children been younger; had I been employed rather than self-employed; had I had a husband I liked, or a partner who was less given to groundless optimism; perhaps then I would have made different choices. And I would not have apologised for them.

Agreed, cwillie. There's little point trying to carry on a conversation around stubborn obtuseness.  I'm done with this thread for sure.

CM - I appreciate your persistence, as always! Unfortunately, you can't make a narcissist see reason, and it looks like that may be what we're dealing with here.

Subduedjoy - Your narcissistic leanings and disrespect for boundaries make me suspect your kids have no idea yet what they are getting into. So, good luck with not ending up in a care home! Cheers! :-)

Dorianne, you are accomplainer...me, me me. You have no idea about pressure from your blogs. Neither does CWILLe. I do tell those who think things are difficult to look in the mirror. I speak the truth that you can't see. Like Subduejoy, said, maybe your parents don't like you...not in those words. Self justified people don't know how to accept constructive criticism because they are consumed in themselves. What I experienced would make your head spin. I wish my dad was here so, I could continue caring for him without complaining. My neighbor complained to me about poor him till, I gave him a small example what occurred at home, then he shut up.

50, I thought this was a blog about people with similar experiences, not complainers with time to post... not you. With my dad, there was no time to spare.

Carla, nothing wrong about venting...agreed. But in excess is pathetic. There may be relationship issues to cause some parents to be demanding.