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

No, Subduedjoy - you're just egging on an obvious troll who seeks derailment of the thread, who only posts in this thread because he/she gets a reaction. We are all now informed that there are alternative treatments for dementia, thank you. But this is not a thread that focuses on dementia.  If you are interested in continuing that discussion, please start a new thread.

One reason parents have trouble accepting outside help is that they have dementia. They are confused. They have trouble making decisions. They seek comfort. They want to be with their kids. So one way to help them is to help reduce their dementia. As I stated before, I'm using diet and supplements for my dementia. I'll post more on this when I have some time.

The old fellow who died on Mt St Helen's popped into my mind just now, was he a wise old man who chose his own end or just a stubborn old fool?

It was the deceit about it that made me clench my teeth, CW. I don't know who she thought she was kidding, or if it was just herself.

To me on the phone: "I was a little bit sick this [Friday] morning, I'm better now".

On the following Monday, Heaven bless the woman, her locum GP became concerned that mother hadn't attended an emergency appointment and on her own initiative called at mother's house on her way home after work.

Where she found that mother's description, in translation, should have been: "I am vomiting blood, and by the way perhaps I ought to have mentioned that I have been passing black stools for nearly a week."

Denial... I think that is a big one, just totally pretending that there isn't a problem so why the fuss?

I do wish my mother was still here. I wish I'd been quicker and more organised about conserving her remaining health. If I'd understood at the beginning what I knew by the end about her complex co-morbidities, I might have been able to wring another year or two out of her increasingly sick, frail, 1924 model frame.

I'm not so sure she'd have thanked me.

To return to topic, did she expect me to do the caregiving work? She'd have said no, she didn't expect it, didn't want it. But nobody else would have been able or willing to get past her barriers - privacy, denial, self-effacement, apathy, fatalism - and get it done.

Cantdance. you are certainly correct about the ways in which the world has changed. But what you said about your LO, who finds that there is no way that anyone can do "enough" for her--you say that this is an attitude that existed BEFORE she developed dementia. Dementia doesn't make you a nicer, more understanding person; sometimes it does the opposite, but I've not heard of it turning about a narcissistic person's sense of entitlement into one of gratitude!

What on earth has any of this to do with trying to get our parents to accept we need some help looking after them?

What you're doing is deliberately derailing this thread.  I'm talking to you, soccer100 and Subduedjoy.  It's really rude and kind of narcissistic at this point.

Please stay on topic, you guys. Or start your own thread.

Soccer100, I understand you.

I have an autoimmune digestive disease. When I was young, I got a lot of ear and sinus infections. Doctors said that antibiotics were perfectly safe, so my mom gave them to me. Later I got boils, and I was again prescribed antibiotics. I took them daily for some 15 years because my dermatologists (doctors) always told me that they were perfectly safe. They said I could take them forever. I started getting gastrointestinal issues after the fifth year of taking the antibiotics, but my doctors never took me off them. Then I got an autoimmune digestive disease (inflammatory bowel disease), and I found out that one cause of inflammatory bowel disease (IBD) is frequent antibiotic use, especially frequent antibiotic use in childhood. When I was first diagnosed with IBD, my dermatologist said that we could try a topical antibiotic instead. She kept telling me that a topical antibiotic should be safe. I replied, "No." That was the last time I saw a dermatologist. As for the IBD, my gastrointologists (GI doctors) told me that Prednisone (a steroid) did not cause osteoporosis. That was in early 2005. Now that there are other medications, I'm told that I should take the other medications (immunomodulators and biologics) because Prednisone often causes osteoporosis. But these other medications can cause life-threatening viruses and cancer. My GIs have told me that these side effects are only in rare cases. However, I did some research, and I found out that these medications are studied for only up to five years, but we are supposed to take them for life. I plan to live longer than five years, so I stopped taking them. Some of the side effects I have gotten from these medications are swollen lymph nodes and convulsions. Plus my inflammation spread to extra-intestinal areas after being on them, and I still have some low-grade inflammation in my kidneys. I also got osteopenia after having been on Prednisone.

In regard to drugs for Alzheimer's, even the Alzheimer's Association admits that medications to treat Alzheimer's do not cure Alzheimer’s or stop it from progressing:

“Although current medications cannot cure Alzheimer’s or stop it from progressing, they may help lessen symptoms, such as memory loss and confusion, for a limited time.”

https://www.alz.org/alzheimers_disease_standard_prescriptions.asp

To tell you the truth, it's all marketing. People, including doctors, are brainwashed by marketing. I'm sick of it. I know longer listen to propaganda.

soccer, are you an anti-vaxxer too, by any chance?

I have no doubt that soccer's parent did just fine without all the meds because my mother is also fine (well, more or less) without all the meds. Of course she isn't getting any "natural" or holistic remedies either, so I think it is a quirk of fate.

Sue, when the medical staff methods don't work, do you keep doing things there way or "think" outside the box.

Subdue,joy, when I said in a post, it was a privilege caring for my dad, I was wondering which complainers can understand what that meant. When they are gone, you will wish they were here, unless you're geared to self.

soccer100...you really love to generalized don't you?
I'm sorry you personally had such bad experiences with doctors but your personal experiences are not universal. I'm happy the holistic treatments helped your father but demonizing other forms of treatment like pharmaceuticals (and the members here who rely on them to treat their loved ones) is very narrow-minded. What worked for your father might not work for everyone; like you say everybody is different!

Rofl - !

Soccer, does the expression "heartsink patient" mean anything to you?

SubDuejoy, even my canine has an holistic vet who will use conventional and holistic but, prefers holistic. She has cardio and liver supplements where she performs the way when much younger. People can't accept when something doesn't work, keep doing it because this is what we know and will be sued if we think otherwise i.e. medical staff. I had that experience with geriatrics doc when I told her to give my dad ginko instead of their blood thinner, which was too much mg's when I told her that. She said, we can't because if something happens they are liable. I said, if he has a bad reaction to thinner, you'll still be trouble. She put her had down after that. Entire staff was at the front desk when I announced that...dead silence all had.

Sue, are you the type who puts their trust in public officials, local, state and federal.

Some thoughts about the "take care of me when I'm old" mentality. I did read some of this thread but not all, so please forgive if my thoughts here are redundant.

The idea of caring for one's elders is cultural to some extent. Some cultures wouldn't dream of leaving their elders in the care of "strangers." In the U.S. in first half of the 20th century , many, many people grew up on farms, where children were eagerly welcomed for their potential as co-workers on the farm and "someone to care for us in our old age." There was no such thing as social security benefits until 1935, and even then as we all know SS didn't cover everything, nor does it now. People on farms got no retirement other than what they voluntarily socked away "for a rainy day." Women on farms had their work cut out for them, so they seldom sought work away from home. Many lived through the great depression of the 30's. Their mindset, therefore, is that children and/or grandchildren will care for them, even if they themselves are better off than their offspring! Despite pensions, 401K's, savings, etc., they want and expect their loved ones to quit jobs to administer their day-to-day care, taking them into their homes, or coming to live with them, etc.

The world has changed! Women are working out of the home and their income is needed for mortgages, car payments, and childrens' college tuitions. Our children take longer to leave the nest, if they leave at all! And here's Grandma and Grandma expecting to be brought into the equation, when we are already old ourselves with responsibilities galore and our own health issues.

It's very difficult for them to understand a dynamic where their own money, Medicare, or Medicaid can implement their care in senior living facilities where their kids aren't involved in all their day-to-day needs. My LO in memory care is miserable, even though she and Dad put enough away during their "working years" to pay for others (in the form of memory care) to pay for her care until death. Even in her demented state she'll acknowledge that we, her children have our own lives, our own children and health to consider; however, nothing we do is enough, even though we act as her advocate, manage her estate, take her to Dr. appointments, take her for outings, visit her at memory care to keep her company, in a nut shell "live out" our love in a multitude of ways, it's never enough. And this attitude prevailed even before the dementia! Strange, too, that mom took no part in caring for her parents, other that an occasional phone call or rare visit. She enjoyed her retirement with no responsibility to anyone other than herself. 

Sue, you were not their to experience what happened. After conveying my thoughts to every doc, they would give examples of other patients they had/have. I told them, they are not him. Anatomically and physiologically we are the same, but there are differences. Also, I told them, when you go home your day is done, I'm here for him. They would say, so what do I want to do and I could see there ignorant facial response with dead silence and they never bothered him again. No meds were given except, what I allowed because of his condition after on the meds. It does not take a doc to know what they know fully. My sister learned the hard way under their so called care and she concurs which was shocking because her life is docs and pills. Another person I and all who know her spiraled downhill from meds.

Subduejoy, When my dad was at the third hospital, I told the geriatrics doc my story and she was the only one to understand and agreed to keep him off those quack meds, but other meds she wanted him on that I refused. Example, he was barely eating "never on his own" and she began giving 325 mg according to the med. books. Common sense, stomach needs food. Aspirin will cause ulcers without plenty of food for amt. of mg's given. When I gave dad holistics, he perform well. Not over night from the damage caused by meds. The geriatrics saw him improve the way I told her and she agreed in the first week. When a person does not respond to their treatments and that's what they stick to, you have to intervene. Friends and family trusted conventional methods and it let them down. People are raised, when you are ill, seek conventional assistance and they will take care of you. Those quack meds sedate the individual. They dampen the condition, not cure it. Only the body can cure itself the way God intended. People forget all docs are "PRACTICING MEDICINE" and they assume the human body functions the same wholeheartedly. Before you had conventional meds, there was holistic..long story. Sorry for not reducing my thoughts Subduejoy.

SueC, your experiences with your mom, I've had the experience and much more. Before the meds, he was not bed ridden, never sundown downed. Was able to function without assistance. All started from the first med that made him aggressive and combative and I told the head nurse and she concurred. After that, he was their lab rat. Again, every doc I spoke to could not give me an answer that he was functioning before the meds. I had his own doctor admit in the house, my dad was functioning before the ER because his doc saw him hours before at his office. After the hospitals, when I brought him home, he was on blood pressure med 10 mg. In the hospital about 8. The quack was surprised dad never had quack meds. His doc saw his condition after the hospitals and in poor health.. The second visit he was amazed of his improvement. Again, I am not proudful. Was not raised that way. All who know me, knows I will give the shirt off my back before attending to my needs. The credit for my dad's improvement was from a higher up using me.

Soccer 100, my FIL knows who we are, but he was having trouble recognizing family from his past. He's doing much better now. He used to carry around a notepad and write everything down. He would refer to his notes, and if he hadn't written it down, then he didn't know it. He's not writing events down anymore because he's remembering them. He's still having trouble making decisions and figuring out how things work though.

Pharmaceutical companies are in the business of making money. Drugs that suppress symptoms and that do not cure the problem make the most money because patients have to take them forever. Competition from functional doctors who are trying to find the root causes of diseases will help push conventional doctors to try to find better solutions. Many times it's difficult to know what a drug will do. I've gotten some bad side effects from medicines, but then medicines have also saved my life. I have found that I need to do my own research and weigh the benefits with the risks.

Yes, studies are showing that many prescription drugs can reduce cognitive function. Moreover, the elderly are often prescribed multiple drugs at the same time, and drug interactions can worsen side effects.

I think you and me are on the same page. I've seen some shockingly horrible healthcare during my hospital stays 1  to 2 1/2 years ago. I found out very quickly that it's very important to have someone I trust to oversee my healthcare if I can't communicate.

I know (between the lines) what my mom meant when she spoke of inheritance. They more work we could do , would mean more for us. After 4 years of this. My parents always said everything is equal. 50/50. But when one child does most of the care it's not equal. The real gift is using the money for their care. This posting really took off.

Perhaps you are right, Barb, but it did seem to me like the stages of kidney disease were being discussed. Deb, can you enlighten us?

(Edit:  I had just PMed Shane, to see if she could give some better information, when I saw your post, Barb!  So my apologies to Shane if I've brought you to this thread for no reason!)

(Edit one more time:  Just checked back - in the last posts between debdaughter and I, we were discussing the stages of renal failure.)

Dori, I think Deb is talking Alzheimer Stages, not renal.

debdaughter - That doesn't really make sense. Stage 4 is having kidney function at 15% and above. Stage 5 is 14% or less kidney function. I may be wrong, but it's my understanding that they don't generally even start dialysis until a person is at 15% or less. My mom started dialysis when she was at 10% kidney function - well into stage 5 - at the recommendation of the nephrologist. She's been on it for nearly 6 years. As for getting a life expectancy diagnosis - it's not usually done because there's no way of knowing how a patient will respond to dialysis, or how long they will live on it. In my mom's case, she is declining, so I made an educated guess about her prognosis, confirming it with the nephrologist, who was also making an educated guess based on mom's decline - but she could have more time, or less. Renal failure is not like a cancer diagnosis.

It sounds to me like your father decided not to pursue treatment, or else his kidney function was already so extremely low (and it would have had to have been pretty extreme - well past the beginning of stage 5) that treatment was not recommended. Or perhaps his other health issues would have negated his response to treatment. In any case, if dialysis was not happening, then his diet would probably not have been discussed.....without dialysis, he was dying, so it was probably assumed he should eat whatever he wanted and be happy. (Renal diet is NOT fun; quality of life does matter.) I sincerely doubt it would have made much difference if he followed a renal diet or a regular "healthy" one anyway. You may be overthinking this a bit.

Well, my BFF and I just employed the "IT'S FOR ME" trick with both our moms, in kind of a roundabout way.

So my mom refused to get a wheelchair for a long time. Let me push her around in her walker for months - awkward! And painful. Finally the occupational therapist came in and said the home support workers should have a wheelchair on site. So we got one on loan from Red Cross. Told mom it was because of the workers' health and safety rules (which is true), but I've started using it for mom too - wayyyyyy nicer on my back!

Except now there are TWO giant wheelie devices taking up space in this little apartment, instead of one! One of them needs to leave the apartment.

Meanwhile, BFF has been complaining for months that her mom has been refusing to get a walker, even though she won't walk anywhere - even to the bus stop - in case she needs to sit down because her back hurts. This has really complicated BFF's life, plus her mom isn't getting any exercise anymore.

The walker has a seat and is sturdy, lightweight, and foldable. We haven't had it quite a year. I said, "Why don't we tell our moms that we'd like to make a 'loaner' arrangement? Your mom can help ME out by trying it out for awhile before she decides to buy one, which gets the durned thing out of here. But my mom won't think she's wheelchair-bound forever if the walker is on 'loan.'"

I can't believe our moms both agreed to it, within seconds of each of us asking them if they were interested. My mom just said, "When's she coming?" BFF's mom just asked if it was adjustable.

Wheeeee!!!

Lesson #1 in Getting Moms to Accept Help: tell them they're doing you a favour. Lol!

Dorianne, when I finally got to have the conversation with dad's doc they told me he right at the line between stage 4 and 5, basically past the point of dialysis and certainly not transplant, not at his age, for sure; however, even with that, nothing was ever said about either hospice or palliative - or how long he might have to live
but re your moms kidnapping stuff, I'd put that more in the category of delusions rather than the hallucinations I'm talking about; from what understand, friend's mil thought she had actual physical things going on with her that bothered her so bad she was actually basically self-harming; that's the type thing I'm talking about and when I say don't want to worry you, that's what I'm talking about
the other thing nothing was ever said about any of this, so nothing was ever said about his diet; I was just glad he was being fed good but now I'm wondering if possibly he was being fed wrong contributing to everything, especially since he already had the blood disorder, but we'd better not go there now, especially since with everything that's happened since that I don't think I've gone into here, but if grandson ever got the least idea that gf had anything to do with him going sooner than could enough I fear would not be good thing. Again, there was just so much miscommunication

Soccer,
You obviously are the ONLY doctor, nurse, c/g, chef, transporter, psychiatrist and therapist that's worth a damn for your dad. Everyone else can't hold a candle to your care.

Please continue your fantastic care because that's the only way your dad is ever going to do well. The rest of the medical community can drop dead. All your dad needs is you!

They ought to ban all geriatric medication, as it is a tool of the devil. It makes the elders do crazy things and become people they aren't. All the drug companies should go out of business. We don't need them.

How proud you must be to handle his every need. How gratifying your life must be. Gosh, I wish all of us had the talent you do to keep our elderly loved ones/parents, safe, clean, calm and cooperative.

I, on the other hand, am a no good daughter for putting my 95 year old mother in Memory Care where she is medicated with those "demon" drugs to cooperate.
I should be beaten for not allowing her in my home anymore after she hit me, threw things at me, spit at me, spit her meds out all over the table, didn't sleep all night (neither did we), urinated and deficated on her bedroom floor (my home), yelled at the top of her lungs every night at 2 am (we were near eviction from the landlord). I need to use your tried and true techniques for keeping an end stage Alzheimer's parent relaxed. Oh, I'd need to know how to do this from work, as I have to work 3 days a week. She would not let her son in law (my husband) near her.

You've got it down, Soccer. My hat is off to you.                                                                       ;)

Subduedjoy, sad thing one pathetic thing about modern science is doctors are ignorant and proud. They believe synthetic meds actually work. After the meds caused my dad not wishing to wear clothes or diapers. Imagine getting imagine the task when releasing # 1 and #2. Not one staff member had the skills. Took my ingenuity. Medical staff stuck to the medical book with their methods until I gave them common sense which all lacked...pissed me off....at three hospitals. I would get a blank stare from all of them.