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

Patricia, my mom has end stage renal failure. I know very well, as does she (as does every other kidney patient facing this, and their nephrologists), that she would have died exactly 5 years ago, if not for the medical and technological intervention of dialysis. It's very possible she would have died 10-15 years ago without the science of chemistry, as applied by laboratory monitoring of the chemical elements in her blood and continuous adjustments to her dietary and medicinal intake to control those chemical elements, which slowed down the rate at which her kidneys were failing.

When people's kidneys fail and there is no scientific intervention, they die. They absolutely will die, within days to a few weeks. That's the way kidney failure works, gods or no gods. 

Also, you might as well be invoking the will of "Luke Skywalker" or "Perseus" as invoking the will of "God" to some folks. Not everyone believes in "God," and will never see the Christian god as anything more than yet another fictional/mythological character in yet another fictional/mythological story. However, using your personal religious convictions in an attempt to scold and shame people is a form of trying to impose your religious beliefs on others, and I do take offense to that.

Patricia, my in laws had a very strong faith and belief in God. Both lived into their 90’s. In their last couple of years, each expressed how difficult life had become, just the simple act of breathing. And both expressed their belief that science was keeping people alive too long. You know nothing of what windy has done to help his parents...he’s far from selfish and cruel. I am a believer but do not want to live so long that my quality of life is nil.

Patricia, my dad was on a medication keeping him from having a stroke; however, he was tired of living and wanted to quit taking the medication; had planned to talk to his doctor at his next appointment the next month; however, dementia/medication? he didn't realize the doctor he was talking about wasn't associated with that medication; however, since it was supposed to be just the next month I was willing to wait and see how it was handled, then work on what to do; however, he didn't make it, he was found collapsed before that appointment, taken to ER, put in ICU, turned into a big fiasco leading to, to some extent like Windyridge's mom, years of more suffering because of medical intervention, but also leading to learning that the medication had been the cause of his collapse, that nobody had expected him to have been on it as long as he had been, because most people would have already died from something else, but not him; however, had we possibly been told that earlier, then maybe provision could have already been made for the situation; however, having said that, although the percentage of risk of stroke was considered to be small what would be the consequences? if he would just go from one, that would be wrong thing, but otoh, yes, what if that wouldn't be what would happen? a friend of ours going through that right now, so guess will see what happens with him

Smeshque,
I completely AGREE with you that Jesus was doing His Father's work. That's why I said, "...I know WHY He did it (left his family)..." and I'm not putting Him down for that. It's not what I "feel", it's an historical fact. He left. No one (except Mary and Joseph) knew that Jesus was the Messiah in His early years. He needed to preach God's word to the people to later complete what God had asked Him to do.

Yes, I believe Mary had more children also, as referenced by the gospels, saying "His brothers and sisters". I take that literally.
*However*, in 1964, the Catholic Church (through the Catholic schools) taught that Jesus' "brothers and sisters" meant we are all brothers and sisters in Christ. We were taught Mary was a virgin forever.
I know that is a hard concept to understand and, even though that's what I was taught, I believe she had more children with Joseph. If you don't believe me, consult another Catholic from that era. I was not the one who came up with the doctrine.

Who do you think I'm judging and showing intolerance to?
You are free to post whatever your opinions are. That's the great thing about this site. I am also free to state my opinion.

What I was trying to get across is that caregiving elderly parents isn't for everyone. Non caregivers should NOT be made to feel bad by other posters for not caring for their parents. We don't know their circumstances and we can't judge them.
What is wrong with that?
Wasn't Jesus all about NOT judging each other?

I shared a perspective based on faith. Am *I* being judged harshly? I stated the facts. NEVER did I say that what Jesus did was wrong nor immoral or evil. But, in the gospels, it says He left. No judgement on my part. Simply, He left to preach for a reason-our salvation.

Jesus was unconventional. He left to start His ministry, which was not a normal thing the first-born son did, leaving His parents behind. I don't find fault with what He did. I'm saying He left the caregiving of His parents to His brothers and sisters.

I hope I have explained myself better in this second post. As I am tolerant of all the posters on this site (however I express my opinion as all of us do), I hope you can be tolerant of me.

I'm sad if you were offended. If you question my faith, please know that Jesus has worked miracles in my life,(brought my husband back to life from the brink of death), and too many others to name. There is no way I would cast Him in a bad light. I have proclaimed His miracles to many. I'm not going to force you to believe what I do. I will respect your beliefs and I expect that you will respect mine and not force yours on me.

After all, we're in the same Christian family. 🙂

Duty

”I trust you will not find it necessary to use that word again. Were I not completely aware of my duty to my family and to my country, I would not have come back tonight... or indeed ever again!”

~ Princess Anne, film Roman Holiday

(hang in there Windy! You are awesome!)

Patricia, my mom has had years of more suffering because of medical intervention. I resent your assumption that everyone believes in god. I respect your right to believe anything you want but I don’t have to respect what you believe. You should respect the rights of others to not share your beliefs and refrain from your pious lectures.

I’m as cruel and selfish as the next guy I guess (note, GUY..You should check my profile ) but not enough that I haven’t provided for both my parents caregiving for several years.

You know nothing about me. This will be the end of our conversation.

Patricia1234: Science is keeping people living longer, longer than their bodies are meant to. That's a double-edged sword. That's reality. Furthermore, not everyone shares your belief in a god.

Hi all - had a busy couple of days, but I'll check in with this thread later on tonight. Got to grab a couple more hours of sleep right now! (Stupid menopause, always waking me up even when mom doesn't!)

Windyridge--What right do you have to say "People just live too damn long". Isn't that up to God, not you? He put us here and it's His decision how long we remain here. He may have you here for a very long time, then how would you feel if someone says that about you? Get a grip girl. Let go and let God be the judge. You don't know that she would have died at 70. She just may have had more suffering without medical intervention.

There have been some great answers to this question given about setting boundaries and protecting yourself in the face of "tantrums" and manipulation. I have worked with caregivers for many years and have picked up some strategies that I recommend.

In many dementing illnesses it is difficult for the patient to initiate and plan. That leads them to depend on what they know and what is most comfortable. "I know my kid, they are comfortable, I ask and they answer". They will keep pushing the ask button as long as it works. The child caregiver will have to be the one to recognize their own limits and stop answering the requests that they cannot do. I don't usually give the advice to tell the parent to hire help. Due to the underlying dementia issues they are unlikely able to initiate such a complicated task independently. If you want to extricate yourself from a caregiver duty do the leg work yourself to find a good replacement, and hire them. Make sure the replacement caregiver knows that any hiring and firing decisions are up to you and that if the parent "fires" them they are still expected to show back up the next day. Hopefully in cases of dementia the child already has financial PoA so they can pay for the care from the parent's account. You may need to be present the first few days to help direct the caregiver on tasks that need to be done and do a gradual pass off as your parent gets used to the change.

Sue, Jesus was about HIS fathers business, God. Mary did have more children as the bible teaches.

It seems so weird that those going around saying don't judge,be tolerant, are indeed those who judge and are intolerant.
Everyone has a perspective on these things. But it seems if they share a perspective based on their faith, then they are judged harshly.
But if another bases perspective on what they feel, then it must be true and accepted. That makes no sense.
Where has truth and common sense gone?

My Mom, with vascular dementia, is 94 and healthy as a horse. She had me early in life when she was 18. I am 75 and she expects me to take care of her. I've had 4 back surgeries and, so far, five of my major joints replaced. I walk with a cane. Mom doesn't see that. She has her dementia which, to her, makes me the "kid". I can hardly take care of my self, less her. Mom is in a memory care center which is good. But she still expects me to "see to her needs" and wonders out loud whatever would she do without me. Doesn't help....and I am the only daughter with a brother and his family living three days ride from us, so she asks me who will take care of me when I get old? Really????? When she realizes that I do have a daughter, she's happy to know that I will be taken care of. OMG,....I hope it never comes to that. It is what it is and because of the dementia, it'll never change. I really do try to back off just for my own sanity. She is well taken care of where she is right now. Mom has also said, tho, that if I put her in a nursing home, she would do something to herself. Well, the time is coming when that reality of a nursing home will be real as her monies are running out. Wish I had a crystal ball. Don't you?

A couple of things: When our elderly parents were our age, their own parents were probably dead. Traditions of caring for parents were not developed at a time when so many people lived to extreme old age, with extreme caring needs.
Next thing: 'I promise I will care for you and you will never have to go into a nursing home' is in the same category as 'I will love you forever' at the beginning of a love affair. It's about how you felt then in those circumstances. It doesn't always work out that way.

Wow, Sue....Preach on Sister!

Saw a bumper sticker couple years ago...

JESUS WOULD SLAP THE S%#T OUT OF YOU


Had to think about it a minute...

WWJD....ah...got it

Wow, I just finished reading all 105 answers.

I forgot who posted which comments but for the person who posted WWJD? (what would Jesus do?),
Do you realize that Jesus was the first (therefore oldest) son? What DID He do? Instead of staying at home and helping Joseph in his carpentry business as he got older, He took off! Flew the coop. Yeah, I know WHY He did it but no one understood that He was the Messiah when He left. As the oldest son, it was His duty to provide for His parents and inherit the business. He left that responsibility to his brothers and sisters. (Protestant version)
As I grew up in Catholicism, the way I was taught, His mother Mary did not have any more children (blessed Mary, *ever* virgin) so Christ was an only child. I guess the townspeople and other family members helped Joseph and Mary in their later years during Jesus' absence. In ancient Jewish culture, Jesus did NOT do what was expected of Him.

So don't use that trite quote unless you are SURE what He would do!

Honor your father and mother doesn't mean giving backbreaking care from one person. It means to do whatever is BEST for them (honor) and not disrespect them. Sometimes that has to be an AL, MC or NH.

Next,
For the person(s) who believe an inheritance is given for work that you've done for your folks... sorry, that would be getting paid for providing a service, as in a "job".
An inheritance has no expectation of work in exchange for the money or property being *given* to the receipient. It is a "gift" to the person receiving it. Anything else would be a business transaction... cash or property for services provided.

Lastly,
There is nothing
illegal nor immoral about taking care or not taking care of your parents. Some adult children had storybook childhoods, they love their parents and have no trouble taking care of them in their easily managed dementia.
Others lived less than ideal childhoods-some enduring horrific treatment. It is no wonder that these adult children can't care for their parents. They are physically, emotionally and mentally too fragile, too damaged and too scarred to cope. Their parents may be too far advanced in their dementia to be able to be cared for in a home setting. (My mother was.)

We have to let each adult child of needy parents judge whether or not this job is for them. Some might like to be their c/g but have to work full time to pay expenses. Others may have small children that need the parents' primary attention first. Some may be sick or physically unfit for the job. Some may be suffering mentally.
No one can say what another person should or must do. No one is at fault if they can't or won't live with and caregive their parents.

Nursing homes, Memory Cares and the like have only been around since women went to work. In the cultures where women don't work outside the home, they are expected to care for LO's. This is not the culture of the U.S. or other developed countries.
We women need to work to make ends meet. Many of us are the primary bread winner. This changed the whole dynamic for the elder care in this country. We need people to assist us while we are assisting our families by working.

There is no one right answer. Let's all be tolerant of each other's situations.

aaudrey,

I read your post and you made a general reply about parents without looking at the fact that some of us have a certain type of parent... narcissistic ones. You must not have had one of those because either I doubt you would have wrote what you wrote the way you wrote it, or you're one of those children of narcissistic parents who are in denial of how you were treated. I always had planned to help my mother out when I grew up. This feeling has changed because of how I had been put down for years and years, even though I was there for years and years. She is now 80 years old, and I have now grown tired of her mess. On top of that, she did not take care of her own mother when she became very old and lived alone after she had lost my aunt (my mother's younger sister) who used to live with her but had passed away. The most my mother's ever been over her house was when she inherited it. She thinks I don't realize how that went down just because I was younger but I was in my 20 so I observed everything. All I knew was this is my mother and nothing was wrong to me at the time, because I didn't know any better. And to answer your question about didn't your parents give up traveling and their freedom for you and such? Well my answer to that is N-O. Actually, my mother would be out all hours of the night and bring the party home whenever she felt like it. When I was 11, she asked me if it bothered me and when I did not answer because I was confused, she said because it didn't matter, as if I did not matter! Also, the noise would keep me and my sisters up where we had to go to school the next day. So, don't be so quick to judge adult children who want and deserve their own lives. It is our right, and not even your parents can nor should be the ones to decide if we get to have one. They certainly had theirs!

I think part of why mil's poa is so upset is I understand mil has no money for care, so what' poa supposed to do

subduedjoy - I'm so proud of you trying to take care of yourself; my mil did not and has already developed dementia at 77, doesn't even know she has a uti and POA is pretty upset

Joanne27,
A couple of weeks ago I was reading a post you answered that was from some lady that had a dementia mom, she was 70 something and she had cameras in her house. I looked up at who started the thread and it said BootShopGirl um....not my mom and not my post but MY name lol! AC fixed it but hello...how did that happen? Magic postings and un-postings. May everyone play nice this evening!

Dorianne and MountainMoose: "joanne - somebody must have reported it. :-("

Thank you both!! I would really like to know who's running the show around here. People condescend, harshly criticize, and do countless other nasty things to others here, especially when they are hurting and vulnerable, but when I try to call them out it gets deleted. Something is wrong with this picture. Thank you for your support. I don't have a copy of what I wrote but I wish I did. Bullies continue because they are not stopped. I have a lot of experience being bullied and I'm not interested in letting it happen to others, especially when they are at a disadvantage. So popular to kick others when they're down. Disgusting but popular.

Taking care of my MIL and seeing others take care of her was a wake-up call. People who have dementia and health issues are very vulnerable.

I used to think that I'd be fine living in a healthcare facility having strangers take care of me. Now that I have an autoimmune digestive disease and have seen the "care," I think differently. The processed junk food alone would kill me.

So, yeah, I do want my family to take care of me. However, I realize the burden that I would be putting on my family if they had to be solely responsible for my well-being. So they can hire others. They just need to manage them and fire the ones that aren't doing their jobs. Plus, I take care of my body and brain by eating very healthy, getting enough healthy fats, avoiding starchy and sugary foods, exercising, and taking supplements. Hopefully, I'll never get dementia and will be able to oversee my own care.

Oh my, this has been the best thread for me. Wish I could have a girls' day out with a handful of you!

1. "Don't want strangers in the house"....Ha! Everyone we meet is a stranger until we spend time together and get to know each other. That's how we become trusted friends. My mom had several in-home caregivers before she passed 7yrs ago. A couple of lazy ones who didn't last long and a couple of really good ones who were there up through her last day.

Ten yrs ago I was in the right place at the right time and was asked to care for an elderly woman with mild but increasing dementia in her home for 3yrs until she passed. After meeting with the daughter and her husband and coming up with a game plan, the daughter invited me over to her mom’s house for "tea and a chat” and introduced me as her "girlfriend" (although I wasn't but became one) who was going to be looking in on mom regularly and preparing lunch and dinner for her (which eventually turned into 24/7 live-in care). Her daughter's husband took photos of mom and daughter and me together, blew them up to 8x10s, framed them, labeled with our names, and placed them in a half dozen highly visible locations to help mom recognize me when I showed up. It worked for the most part, although I repeatedly had to remind her who I was (pointing to a photo and mentioning that I was her daughter's friend) and why I was there. She seemed to accept that quite readily. Maybe this would work for someone here......?

2. I've read every single response on this thread and been copying/pasting choice answers into a word processing doc in the chance that I'll want to send it to my ex for an education in caregiving.

At 73, he is 12yrs older than I with a heart condition under control with meds, lives independently in an apartment with an active social life, never re-married, mostly selfish and self-pleasing his entire adult life. We have a 31yr old daughter and only child who is a GEM of a sweetheart, kindhearted, smart, independent, single/never married. She told me that her dad said he was leaving all of his money and possessions to her when he passes. I fully expected that. She also said that he has asked her to move the 100 miles to be closer to him to help "take care" of him when he gets to that point. I did NOT expect that. That got my hackles up instantly.

How dare he put that on her. I'm pretty sure he is financially capable of moving himself into an ALF right now to prepare for the years ahead. My daughter has a decent relationship with her dad and makes it a point to get together with him on a regular basis. She and I have been talking about her moving closer to me (140 miles) within the next year because we miss each other terribly. It was just she and I together for 14yrs after her dad and I divorced, and we're very close. For him to place the possibility of that burden on her makes me livid knowing my experience with the sacrifice, alienation, depression, and exhaustion of the caregiver life. And my current caregiver scenario with my 90yr old dad is a "piece of cake" compared to most on this site! Someone mentioned the bribery of an inheritance involved in getting a child to care for mom or dad. I hope my ex would never think that way.

3. This website has made me realize how I have neglected planning for my own future. I have received very little income as my dad's full-time caregiver for the past 2+yrs (although he's generous to share funds as needed) and have nothing in savings after a second failed marriage of 9yrs before I arrived here. Barring unforeseen medical needs for my dad in the future, I'll be left with a small investment portfolio after he passes that I hope to leave untouched for as long as possible (Lord willing and my continued good health), so I'll need to find a job to pay for housing and bills. And I need to face the possibility that I may be a Medicaid candidate somewhere down the road. Yes, time and planning and inconvenience, but necessary. However, the future may produce an entirely different scenario.......we just don't know.......

My heartfelt thanks to all of you who share your wisdom and experience and encouragement here on AC.com.

My dad did pass out, but, thankfully, not until, or at least as far as we know; did he pass out when he fell or what caused him to fall initially off his back porch? that led to the VA social worker getting him an aide to at least have somebody checking on him every day; had it not been the exact day he did it then that the next day was his weekly check up who knows what would have happened? but it took the later fire to get him to want his grandson, who did, to move in with him, the one who needed to for all he'd done for him, but if things had gone on much longer he'd wouldn't have been able to continue but he is the one who didn't want dad to move into AL, which he was going to sell his house and do, but not sure how that would have worked if things had gone there the way they did at home, don't think he would have been able to stay there; in his state they operate on a social, not medical model, and if he'd been willing to sell his home earlier, we could - and he said later he would - have moved him down here closer to me

Dorianne: To answer your question correctly, no, my mother NEVER spoke up! She would have just kept going along as an epic fail at keeping house in another state from her 2 adult kids. We tried so many things-she was on a list to move to senior housing in her town-her name came up to the top of the list and she declined WITHOUT putting her name back on the list, we tried getting her to an AL in my state and she declined, she was legally blind, had CHF, A-Fib, arthritis, thyroid disease and such low blood pressure on the verge of passing out and still said "I'm so happy I stayed alone in my own home." I had to move in with her-a woman who called me Hitler and didn't defend me when a pedophile uncle abused me.

"And I have asked her why she wants me to do everything, and she denies there's anything to do... ...We do have home support now, and they are awesome..."

I used to be a team leader, and my team always outperformed my expectations. But healthcare workers are used to working for people who don't have management experience. They tend to try to get away with as much as possible. I've had healthcare workers come in and put the T.V. on for themselves. I've had healthcare workers try to be on their phones the whole time. I've had healthcare workers not exercise my MIL's limbs. And all of the healthcare workers I've had wanted to give my MIL Ensure or Boost--basically processed junk. It was convenient for them to do so. But then, you might have lucked out and gotten good help. It is possible.

Have you asked your mom what she doesn't like about the help? Is it the money? Is it the care? Or does she just prefer you?

Dorianne - re Carla's comment re her friend - that's exactly I think the situation with hub's aunt - they have one son (not their only child but that's another situation) she at least devoted her whole life to - and also never let him forget it - that uncle wanted to move next door to him - again - after he moved - away from next door to them - onto a farm they'd bought together, mortgaging their old place/house to do so and then helping him pay for his part - and he told them they needn't think if they needed it that he was going to stay home and take care of them; he was going to go places and do things with his family, I think, implying they didn't with him when he was growing up and he's stuck to his word

Dorianne - whine away - this is the place to do it. ;) I would like to say I have some pithy, unbelievably insightful thing to say, but the bottom line (I have EXACTLY the same situation with my mother) is "What was all that "I don't want to be a burden" b.s. for, anyway?" was really just our parents, in an earlier, more cognizant period of time, saying what they actually meant at that time. I say over and over to my husband that I really hope that when we say it to our kids, we really mean it, but I have a sad thought that if we live long enough, that memory will fade and if we're miserable in our old age in a home, or even AL (where my 95 year old mother is still fortunate enough to be), we'll put our kids through this as well. Not the best or most uplifting thought, but maybe it's better to see and try to say this stuff to our kids ahead of time, so if things turn around, they know we really tried. Other than that, know and acknowledge that you are doing the right, responsible things for your loved one, and that their reaction isn't something you can control. Hugs for all you do!

I was just thinking how hard it must be to be a home support worker.

You can't get angry or frustrated with a patient. You have to maintain your patience, if not your cheerfulness.

You have to do the sh** work - literally.

You are at more risk of abuse and violence when alone in a private residence with a patient.

You don't get paid very much.

Besides the families, you are the "front line" of watching patients decline and become sicker, more disabled....plus, you have to be that witness over and over and over again, with many different people, for all the years you are working in that field.

I was soooo disappointed at Christmas to find out we couldn't tip or give gifts to the workers. We sent a pile of Tim Horton's gift cards to the agency for them to distribute, but it's not the same as showing your appreciation directly.

MountainMoose - yup, this is where I was at last night. It was Friday night after a busy week, not only mom's dialysis days, but many calls and visits with the social worker, the occupational therapist, the area nurse, the home support office. I was leaning on mom's walker out of exhaustion by 11:30, trying to get her to get onto the seat. Nope, she was still watching the movie (it was over and the TV off)....she needed one more sip of tea, 5 more sips of tea....she needed one more Timbit out of the box, two more Timbits....she needed to check (now empty) the dish I put her meds in 3x....that was all before I got her off the couch! Nevermind the bathroom adventure and the getting into bed adventure. Then she fell at 3 AM and I ran in to pick her up, so I didn't get back to sleep till 5:30 in the morning....

Carla - people really don't have a clue what caregiving an elder is like till they do it. Maybe she was also a little envious that you still HAD your parents, and since she didn't know what it was like, she was a bit resentful, too?

Subduedjoy - I explained in a comment down on the 1st page that the lawn care stuff was 3-4 years ago now. My mom is a lot worse off now, but not in that house anymore. And I have asked her why she wants me to do everything, and she denies there's anything to do. When I list the things I do, she just becomes verbally abusive and unwilling to participate in a dialogue at all. We do have home support now, and they are awesome, by the way. I've gone out and come back at random times and they are always gently and cheerfully helping/serving mom, or even just sitting with her and chatting. When I am old, I will have no problems letting them help me.

Just wanted to say, to all those who posted right after this thread got started, that I'm sorry I didn't get to reply to everyone who addressed me directly.

This thread got swarmed much faster than I expected!  And I could only keep up with the reading! But I did read every comment.