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

Moving on....

I wrote to my brother today to tell him mom is on home palliative care now. I described the challenge of persuading her to accept home support as "like mud wrestling with grizzly bears."

I didn't even think it was funny at the time I wrote it. I was just thinking of what I could compare it too so that he'd understand how stubborn she's become, what would be the most difficult struggle you could have, and that's kind of the way it felt to me! Wild, untamed, unsafe, fighting for my life in a way....and wholly unexpected!

"[U]sing 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."

I totally agree, Dorianne. I take offense to it as well, and I reported the post based on it. I also totally agree with what Windy said. We need to be realistic here. Medical interventions, not acts of god, have extended lifespans for the severely impaired to the point where they can only be an extreme burden to their families and the larger societies. Society has failed to take any responsibility for the costs and burdens of these extended life spans. It falls on families, regardless of how estranged, encumbered, disabled, or otherwise ill-suited and ill-equipped the family members may be, to manage the care of seriously debilitated elders over a period of years or decades. People are stretched to the breaking point and beyond. I have spent the last 7 years helping to keep my mother alive and for what? She sits in a chair reading mystery novels and watching Judge Judy. My goal for my retirement was to move to a place where my retirement income would support a decent house with a yard, and become a foster parent. Nobody can honestly tell me that a loving God would prefer to have my mother sitting in a chair for years over having me out in the world taking in needy children. This talk about God's will is just sanctimonious drivel from those who don't know any more about God or his will than we do.

On the topic of God's will: last month a good friend died at age 60 (sudden heart attack). He worked full time in his own business, providing work for two employees (one with a disabled wife), as well as his own wife and dependent mother-in-law. He also volunteered in his community quite a bit helping others. At his memorial service, someone said our friend was "taken home" by god because he had "served his purpose" on earth and it was over. I am thinking, try telling that to the 5 or 6 people who now suffer in his absence on so many levels :( Nah, this life and death stuff is just random...really great people die too soon while others are kept alive, limping along due to technology and so-called "luck".

However you look at it, this is our history in longevity;

1900 world ave.=31 yrs
1950 world ave.= 48 yrs
2014 world ave.=71.5 yrs
according to Wikipedia.

It also matters *where* we live. Africa has the lowest life spans while Japan has the highest.

It would stand to reason that countries with the availability of fresh food and medical care would have higher rates of longevity than poorer countries that lack fresh available food and medical care. Civilized countries have longer life spans than non developed/third world countries.

I could surmise that the people in the impoverished countries would die a "natural" death, living only on what "nature" supplies and not having medical intervention.
We, in the first world nations have ample access to healthy abundant food and quality, cutting edge medical treatment.

It would extend our lives naturally by eating the food we grow but lives would be extended "artificially" (meaning not naturally occurring in nature) by having top of the line medical care. Sometimes we are taking pills to completely counteract what the body would "naturally" do. Then more pills to counteract the side effects of the first pill, and so on.

IF you have many years ahead of you, AND medical treatment improves the quality of your life-great.
But when we're at the end of life and the doctors are trying more and more treatments, when the body is ready to stop, it makes for a tough decision.

It is a personal choice as to when you say-Enough is Enough, and "let nature" take its course.

There is no one right answer. Each person (or their family) need to decide for themselves how much modern medical technology we want in our lives and at what cost. Sometimes preserving life at any cost is too high a price for the patient to pay.

Anyone may disagree with me. These are just *my* views.

Great perspective, SueC1957. Thanks to a new perspective of caring for Mom and perspectives on this site, last week I rewrote my DPOA for HC and included a passage that if I reach Stage 7 of dementia or Alzheimer's or last-stage cancer and expect to have less than six months left to live to stop all treatment other than treat the pain and make me comfortable. It's longer than this but this is the crux.

SueC,

Great information. I find it ironic that the one being cared for may get all the medical miracles, while the caretaker basically ends up medically neglected and ends up without those benefits.

Yes. People are living longer. People are also working longer and retiring later in life. Yes. Dementia is more common today. Most people are on the SAD diet, that is the standard American diet, and chronic diseases, including Alzheimer’s are on the rise. As a result, the elderly may be in pain, need to be taken care of for years, and may not even understand what's going on. They get upset. They don't appreciate. It's difficult. It's inconvenient. It's reality.

Yes. The elderly get confused and angry and forget. But if one of my parents fired a caregiver, I would still respect his/her decision. My FIL hired a caregiver for my MIL who would come during the day. There was one caregiver whom my MIL didn't like. She didn't trust her. I was okay with her, but I fired her anyway. After all, it's my MIL's caregiver, not mine, and it's important that my MIL trust her caregiver. The elderly are people too.

As for putting the elderly on hospice, my FIL put my MIL on hospice. It was unpleasant. She had a UTI and the doctors didn't want to give her an antibiotic because that would be considered care. The problem was that my MIL was in extreme pain because of the UTI, and the pain killers weren't working. I made sure she got that antibiotic. She died not many days after that, but at least she was in far less pain when she died.

And BTW, I don't have the best mom. When I was born, my mother lost a lot of blood, got a blood transfusion, got hepatitis from the blood transfusion, and ended up being in the hospital for the first two months of my life. My grandmother took care of me. My mother never really connected with me. She basically ignored me. My very presence seemed to bother her. I was neglected. Still, she's a person, there's value in helping others, and helping my mom sets a good example for my daughters. I used to be a securities analyst in my younger days. I find way more value in helping my family by being there for them instead of in going out and making money.

Dorianne, my dad also had, maybe not quite end stage - isn't that stage 5, which actually I thought was pretty much "the end", as in within days to few weeks - but maybe stage 4, the stage at which they normally would do dialysis, but we'd pretty much already decided we wouldn't go that route; however, having said that I've heard that death from kidney failure can be pretty horrible - do you know anything about that?

debdaughter - I've read that dying from kidney failure is relatively painless, unless you have other diseases, such as those that caused the kidney disease (i.e.: diabetes). In those cases the pain is thought to be from the other issues. It's supposed to be pretty manageable in hospice. At any rate, it was mom's independent choice to start dialysis. Her mind was fully functioning then, and I was not as involved as I am now - we lived in different towns.

debdaughter, I am not very knowledgeable at all about renal failure. I do know my hubby was very dehydrated and the doctor said if we hadn't gone to the hospital he would have been dead in 24 hours from renal failure because his kidneys were shutting down. He wasn't in any pain. What alerted me was, he was slurring his words. On his own he decided not to drink liquids because he was trying to stop diarrhea. This was before Alzheimers. I wasn't paying attention, never had monitored what he ate or drank. You know, a grown man.

You need bible reading to understand what God says about how siblings should be towards parents. My dad had dementia who relied on me before he had it. Love overpowers selfishness...me me me...makes me sick people about themselves. The work I did for my dad, you could not bear or grasp. All those I have spoken to, tried to compare themselves to my experiences till I put them in their place with a few experiences.

I'm starting to (inwardly) roll my eyes now at mom's protests to home support.

Another incident this morning where she tried to refuse home support's help getting cleaned and changed, when she needed to be cleaned and changed. And this is after I'd spent a good chunk of my day yesterday cleaning the poo out of her pajamas and bedding (yes, comforter too), , and cleaning poo from the bathroom, after she told home support she was fine and made a huge mess everywhere 5 minutes after they left. Today I lost almost an hour of my 4-hour respite block, one of only 2 I get all week, having to be here, arms folded, insisting she accept the help.

THIS is exactly what I'm talking about. It's not about whether we should or shouldn't look after our parents at home. That's a debate for another thread. It's about our parents' darned stubbornness in resisting the outside help that assists US, as caregivers IN the home, so that we don't end up having heart attacks trying to keep up on it all by ourselves!

I mean, I'm over it now. It's another day over, and another day where I'm still not going to rush to put her in a home. But tomorrow there will be some other battle. It's exhausting!

Honestly? As I get older, I'm even more glad I made the decision not to have children. I would hate to put them through any of this. And who knows what will be going through my brain by the time I can't do it all anymore? Maybe I would be just as stubborn and resistant.

soccer - I don't think you have read this thread. I keep repeating this.

This thread is NOT about whether people should or shouldn't look after their parents at home.

It's about why parents resist outside help that assists US as CAREGIVERS, and what we can do to get that help in place despite their resistance. 

Lots of us here, including me, are looking after a parent or 2 parents AT HOME, and are desperate to get assistance before WE crash and burn, ending up sick ourselves - because then, we won't be any help to our parents at all. 

And PLEASE, can people STOP telling other people to follow their religious belief system. It's one thing to say, "This is what I believe/follow/use as a guide." Some folks, like Sue1957, provide great examples of how to do this. But it's just narrow-minded and disrespectful to insist others "need to" or "should" follow their religious dictates, or to try to shame others using religious dictates they may not believe in or have interest in.

(Edit:  sorry to single you out, Sue, but it's because I have great respect for the way you are able to talk about your faith without imposing it on others.)

I don't pretend to be a learned student of the Bible - what with the job, the children and the parents I have not found the time - but I don't offhand remember that most of the siblings in it were what you'd call exemplars. Daggers drawn, more like, surely?

Anyhooooooo... Dorianne your thread has put me much in mind of the Lovely Liz, our best and longest-serving HCA. I don't know whether it was natural-born or her training, or both of course; but her approach was a model for professionals. Mother didn't want her there and within the bounds of chilly politeness made her feelings very clear.

Aides have their own guidelines to stick to; they can't lay hands on a caree who's actively refusing assistance, e.g. So on falls prevention - mother would totter off towards the bathroom in her usual hair-raising way, what I came to think of as the "Pinball" technique. Liz started out by asking if she wanted help - certainly not! - but moved rapidly on to discreet intervention. The walker would magically appear in front of mother so she'd have to take hold of it, and it was more trouble to move it out of the way than to use it. Liz wasn't "following" mother to the bathroom, she was just going that way, don't mind her. I'd already officiously taken the lock off the door - NUTS to dignity and autonomy, what about frail elder lying behind locked bathroom door, eh? - so Liz would stand outside and listen for trouble, then knock and enter if need be.

Mother still fumed. It's just that Liz never gave her anything substantial to object to.

The point is that *handling* hostility, rejection, discomfiture or whatever on the part of the client is part of the Good HCA's skill set. A comfortable working relationship has to be built, it isn't a given. Assuming a reasonable level of confidence in the aides' professional skills and experience (I grant that's not something you can always assume) I should leave them free to work on it.

CM - your post draws attention to what's probably part of the problem for me. Because home support is provided through our provincial health care (rather than through a private company we've hired), we take what we can get, and we almost never know what worker we're going to get on any given shift.  (Part of THAT problem is the pay is low and the work is challenging, so few people want to do the work....but there are more seniors needing services than ever, so the agency contracted to the province is just perpetually short on staff and/or over-burdened.) 

I will say most of them are pretty great in working with mom - but as you say, they have to ask mom before they touch/help her. That's where I end up having to step in and say, "Mom, you have to do X, Y, or Z." Because if I don't say it while home support is there, she will often resist the help on offer, or deny needing it. And I'm the one who'll end up helping her with it later. She thinks this is fine - since I don't use a cane at home, she pretty much forgets about my disability, and doesn't see my exhaustion, ever.

There are a couple of workers that we've had pretty regularly, even before the increase in services, and if I know they're here, I can pretty much go take a nap! So yes, they've been good at that relationship-building. (Today, Friday, is when our favourite lady should be coming in - yay!) But the others, especially the ones new to mom....it's not that they're not great, it's just that they don't get an opportunity for regular relationship-building.

If I had lots of money - as awesome as the workers provided are - I would definitely hire one or two workers privately just for the consistency, instead of doing it this way.

Thank you, Dorianne and MaryKathleen, I was basing my question on a friend's mil, whose dialysis was stopped because of her heart condition; don't believe pain was the issue, although she was a diabetic, as was my dil's mother, with either of them; it was more hallucinations that were so horrible, but nothing about that with either one of your lo's?

debdaughter - My mom thinks the phone company kidnaps her. And that the nurses and I are in on it. And she is always amazed that she got right back to town so fast when she leaves the building.

But it only lasts for a few hours after dialysis.

I think she thinks it's OK, though. She acts like we all planned a surprise party that acruelly surprised her.

Edit: also she thinks the phone company women are on strike and she supports them. She may be thinking of telephone operators like we used to have.

*actually not acruelly

Sorry, I was writing that on my cell phone in the ER!

I wake up everyday knowing it is going to be a bad day. I have ms that I pay zero attention to because I spend all of my time figuring out what to do for her, arrange things so I can avoid one,two,three hour long rages at me,others,the world, She's an 80 year old narcissist with copd. My sister, an rn who lives five miles away,has tried along with me to get a home health aide or cleaning lady in for a stress break. She agrees, then disagrees, then says to neighbors: no one will help me. As an example of how her mind works she had me start,stop,start,stop USA Today four times. She puts on such a : I'm a neglected southern belle act outside that only people who have witness her cruelty believe it. I am 58 now and have to take care of my ms. She will not acknowledge there's anything wrong with me even seeing neurologist report cause that takes attention away from her. I cannot drive so it's hard to get out. Point of all this: Impossible to get help in here! Help!😕

keepingup - Do you stay/live with your mom? If so - she can refuse personal care aides, but she can't refuse a housekeeper that you hire to help YOU. You have a right to hire someone to help you.

I have a disability thanks to a bad fall at work, and like you, mine is largely invisible, because I don't use a cane or a brace. I have to keep reminding my mom that home support is here to help ME, and I have to speak up about it every time she grumbles.

That might not help if your mom doesn't believe your diagnosis though. In that case, it might be one of those cases where you have to STOP caregiving her yourself and either get her into a care home or just walk away and let the chips fall. It's one thing for a fit, healthy adult to do this work - it's another thing altogether to try and cope with it while dealing with something as serious as MS. And you MUST look after yourself! Your mom has no right to demand you wreck yourself for her sake!

There's lots of advice from others on this forum about how to get resistant elderly parents into a care home. I strongly urge you to make that happen, even if it means dropping her off (or getting your sister to drop her off) at the ER with her medical insurance card in her pocket and telling them she has no one at home to care for her.

Anyone have dementia parent in the worst way caused by the hospital and their meds. Never sundowned till after the meds from the hospital which has occurred 3X a day and not a simple sundowning episode. To the person not understanding about religion. Religion provides wisdom that applies to our lives even when caring for parents.

dori - I said no. I did not make myself available. I continued to work full time into my 70's. I worked to provide for myself in retirement. Mother wanted me to move near her, and, basically, be her servant, even when she was well. I didn't do it. I kept my own home and my own life. I also made it clear that I could never look after her in my home. I said I would do what I could, agreed to being POA medical and financial, and did all the foot work in getting her diagnosed, treated, and placed as the vascular dementia progressed, and look after her finances/business.

As mother has borderline personality disorder and narcissism, strong boundaries are necessary. Even then I certainly suffered health wise from the stress.

Had mother not had mental illness, my route may have been different. Mother's expectations were tied to her BPD and narcissism. I have dealt with them all my life, and have learned to resist being completely overtaken.

soccer - yes, my mom didn't even really have dementia - maybe - but certainly not sundowning until she was in the hospital for hip surgery - maybe the anesthesia? not really sure meds because not sure she was on anything she hadn't been on already but trying to get up and pull her catheter out wasn't good, especially since I was exhausted and had gone to sleep, just glad something woke me up, just wish they'd already put the alarms in place - why can't they be proactive? or at least tell me; I had no idea to expect it - don't they expect these things? maybe I should have after her not even really recognizing me the night before, but thing is they even ran me out of there after that, just happened to run into her doc - of course it was the weekend, but he knew all about it, not that it had happened to her, but in general and was able to tell me what was going on, now just why couldn't that have happened before, but he no longer, supposedly, saw patients in the hospital but then why was he there later when my dad was in there, not to see him, but still....? but, yet, was it even really, because a few days later she was sharp enough to know my dad had - unknowingly, so who had what - signed her away - of course she'd let him have the paper to do it, but really think was because she was just still too tired, didn't want to have to deal with and dad had always pretty much handled the paperwork, anyway, so she never expected that and had I not been there to see it and gave her "the look", not sure what would have happened when they would have come to take her away; well, I guess I do, she probably would have told them and maybe they would have listened; as it was, we had to take it to the top echelons
having said all that, later, when dad did end up in icu, giving him Haldol was not a good thing; of course they were only doing it because they said he had something called icu psychosis

dorianne - I missed you whole post/comment about your mom and the FBI - wow, from the dialysis?

Debdaughter, when I was at the hospital 7 days from visiting hours till closing hours, I told the staff what to give him and the quack meds I refused and they knew where I stood from the meds destroying him. Director of nursing offered Haldol and I say no way. She backed off after I gave her common sense and the side effects of their meds. My dad was naked always and no needles or anything could be given to him or he would pull it out. I had to tell these so called experts what to do and I mean the experts they claim to be. People forget, they are humans who are "practicing medicine". What does that tell ya. Would you have an apprentice auto mechanic practice on your vehicle...of coarse not...your safety and security.

Deb, I was at the hospital 7 days a week 8 am-8pm at two hospitals and 8 am-11pm at another hospital. I was there before visiting hours hoping to see him sooner which I did whenever I could. Two hospitals allowed me to stay with him overnight at times. They did not have the experience to handle him. I used common sense and wits with God's help. Know one could do what I did. The staff was stupid. All they knew was by the book. They forget, each human is basically the same both anatomically and physiologically but, there are differences. They stand by protocol and the book which I told them off numerous times nurses docs experts if you can call them that.

Keeping Up. It's hard to control others, but you can control your own actions. You can try finding someone to help you out so that you will have more time and energy to help your mom.

You might be reading your mom wrong. I also have an autoimmune disease, IBD. I thought my eldest daughter didn't care, but I finally came to realize that she was just having a hard time accepting it.

The medications I've been on don't work. So I had to find alternative treatments. Diet and supplements have been working for me. Have you ever heard of Dr. Terry Wahls and the Wahls Diet? Terry has MS like you. I don't know too much about the diet though. I'm on different one for IBD.

Dorianne, the reason posters are debating whether or not we should be taking care of our parents is that you seem to really not like your mom and not like taking care of her. I could be wrong, but I get the impression that you don't love your mom, think it's a huge burden taking care of her, resent having to take care of her, and don't understand the value in it. So why are you taking care of her?

In regard to your mom's refusing help, it's common with the elderly. My MIL initially didn't want anyone to change her diaper. I have IBD and told her some of my colon/poo stories. (I have many.) She laughed and let people change her.

My MIL also had dementia. She didn't always understand us. She didn't always understand what was going on. She also had arthritis. Moving her caused her great pain, but she had to be moved to keep from getting bed sores. And then she also had Sun Downer's and would have periods in which she would yell at everyone. Light therapy helped with the Sun Downer's.

Maybe, the issue is that you've never had children, so you don't understand the work involved and perhaps you also don't see the value in it.

subduedjoy - you directed your question to Dorianne but you could have said the same to me so I'll answer you. A lot of people take care of parents they don't especially like or have a close relationship with. A lot of us feel especially burdened by caregiving when we don't find much value in it. So why do we do it?

I think the general answer is that someone needs to do it, and there are no better alternatives. Our parents are old, they need help, and they're not capable of even arranging and managing that help themselves, even if they can afford it.

I can't hire help for my mother because there's no money for that. Even if I could, though, there are lots of things we have to handle ourselves, such as the many medical appointments. Even if my mother were capable of getting there by herself (she's not), she has trouble understanding the doctor's explanations, conveying her symptoms, remembering all her meds and what they're prescribed for, etc. Someone has to accept this responsibility, and my sister and I share it.

My mother is a difficult person, although not demented. I get along with her better than any of my siblings do, but that's a pretty low bar. I can't see her more than two days in a row without going nuts with agitation and resentment, and I won't live with her. Kimber suggested above " Give willingly, stop giving unwillingly". I have tried and continue trying to do just that, but I constantly face pressure to do more, and that stirs up resentment. My mother actually said to me "The reason I ask you is that I know you'll do it, even if you resent it." So we're at cross-purposes on this, and that's difficult.

When I first moved to Florida to help my mother out, I estimated her life expectancy as 2-3 years, five at the most (based on her age and health status). I thought I could suspend my personal goals and wishes for that long. But now it's been 7+ years with no end in sight. But now I'm trapped. Can I just stop caregiving and move on with my life now when she's even more disabled and needier than when I first started?

We're all doing the best we can here. "Just stop caregiving if you don't want to do it" sounds like a simple solution, but often it's just not feasible.

Subduedjoy - If you have spent much time on this forum, you'd know that my mother is 1) a former alcoholic; 2) a former valium addict who once tried to kill herself with pills in front of me and my brother; 3) the instigator of the majority of the violence in my family, and all of the knife-wielding kind; 4) someone who both neglected me and emotionally abused me during my formative years, while also using child-me as her caregiver; and 5) someone I have not lived with since I was 15, so I had no idea who she really was, sober, until it was too late and I was in this muck with both feet (hint: she is a good actor until you live with her). 

Caregiving my mother has shown me a lot of stunning revelations about her, about my family history, and about the ways in which she has worked to emotionally separate my brother (the only family I will have left pretty soon) and I, as well as the ways she has played us off one another, over the last 15-20 years.  I vent and b**** about some of those things here in the forum. 

I've never said I don't love my mother. She's my mother. Even abused kids love their mothers. Of course I love my mother. What an obnoxious thing to say. Not all relationships are black and white like that. MOST relationships are not black and white like that.

Please don't presume that because I don't have children of my own I am clueless about what is involved with caring for them. I haven't gone through life avoiding contact with children. I have built my family out of step-relations and friends, lived my life alongside them and their children and grandchildren. I was even a nanny in my early 20s. So that's a pretty obnoxious thing to say as well.

For the record, I have been the caregiver to both my father (Alzheimers) and my stepmother (cancer) in their last years of life. This ain't my first rodeo. Caring for them was nothing like caring for my mother.

Yes, I feel taking care of her is a burden, and yes I resent it. I especially feel it's a burden to resent when she resists allowing me to have some HELP in doing it. That's what the HELP is out there for. I especially feel it's a burden to resent when she doesn't CARE how much of my own life I've had to give up, put on hold, etc., simply because of her resistance to allowing some additional HELPERS into the fold - which includes my most trusted family of friends as well as paid home support. I especially feel it's a burden to resent when she is outright NASTY to me even when I am being kind, which is something I have described many times in the forum. I especially feel it's a burden to resent when she HITS me, as she has done once, and has almost more than once (but thought the better of, after seeing the look on my face).

However, if I didn't see the value in doing what I'm doing, I wouldn't be doing it, would I? I would pack her off to some anonymous home, instead of putting my head down, doing the work, and venting and b****ing about it here, in what I consider the only SAFE place I have to do so.

Not everything in life has to be depicted as unicorns and rainbows.  I'm allowed to complain.