I posted this in the "whine" thread earlier....but I think it might be deserving of it's own thread, for those who want to complain or contemplate the issue, and also to share tips on how they got their parents to accept outside help. This seems to come up a LOT, all over the forum. This is what I wrote (slightly edited):
Why is it that so many aging parents don't see how exhausted and stressed out their caregiver children are? Why can't they see how much work this is? Or do they just not care?
I mean, just reading around in different threads - it's not just dysfunctional families, it's ALL kinds of families.
Like, why DO parents insist that their kids should and must be able to do the work of several paid workers? EVEN WHEN THEY HAVE THE MONEY TO PAY?
Why do they get so upset and resistant about allowing paid - or even volunteer - help come in to actually HELP their children?
Why do they insist that their kids be totally available to them, sometimes 24 hours a day, without allowing anyone from outside the family to spell them off?
What was all that "I don't want to be a burden" b.s. for, anyway?
My mom was like this even before her mind started going downhill. So it's not just dementia. It started with me driving 350 km every 2-3 weeks because she refused to hire someone to rake the lawn. (But she'd pay my gas and feed me that weekend....which all cost a lot more than hiring someone!)
I am really grateful for home support. I could NOT do this without them. But it was worse than pulling teeth to get my mom to accept even a minimal amount in the beginning. She still gripes about them coming in, even though they are 10x more patient with her than I am.
If it's payback for raising us, well.....it's not like our parents never got babysitters, or put us in daycare, or sent us to summer camp/granny's house so THEY could hold down a job and/or get a break.
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! :-)
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.
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!!!
Sorry Dorianne, I'm going to suggest we abandon this thread, I think it has pretty much run its course anyway.
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.
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.
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?
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.
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.
Calling you on your inappropriate behaviour does not constitute "bullying" either.
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.
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
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....
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.
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.