Society's Expectations

Well said and well written GA!
I always love it when the more intelligent converse on an important topic.
I am not offended at all, even though I was just in the kitchen, preparing food for dH,
and I was barefoot.

No offense intended to anyone, but I think we (including me) often extrapolate a limited number of opinions to a societal one in general. And given the situations that we're in, I think that's a natural tendency.

It's rare that I receive a compliment from someone other than my father and a few close friends, but it's not rare to interpret a snide remark, including from private duty interviewers and health care providers: "You mean you DON'T live with him? He has to take care of himself? He lives here all ALONE?!" Or "why don't you do something with his yard? Why don't you do a, b, c, or d??"

Or the obverse: "Why DON'T you put him in AL?"

Of course, I always refrain from my desired retort" "Why don't YOU mind your own business?!" Still, it irks me. These people have no basis on which to make assumptions.

It's only the good neighbors who step up and volunteer who DON'T offer these biased "suggestions."

RainMom, you make an interesting observation that dementia "remains a dirty word." I think overuse of the term and concepts of dementia, sometimes alternately with Alzheimer and regardless of a specific diagnosis, has become a lay person's "go to" analysis of an older person.

Forgetful? Must have dementia? Confused? Must have dementia? It's almost become a "go to" diagnosis. I know one person who even claims that b/c she's known so many people with dementia that she can "tell it when she sees it." And she's not a medical person.

Sometimes I toy with these self described experts. If they'll observe that someone is doing something indicative of dementia, I'll tell them that I have the same problem, so I guess that means I'm demented. Response? "Oh, no, you're too young." So for some people, dementia seems to be an automatic DX if you're old, but not with the same symptoms if you're young.


As to the gender issue, I think there was also an assumption prior to the liberation years when women were able to secure more rights that it was expected we would all get pregnant after marriage and revel in staying home, vacuuming in dress clothes, high heels and make up, and caring for children. Even today, it's often still anticipated by others that that's our primary role during younger years.

Perhaps all of this arises from the hundreds of years of suppression of women's rights, although that didn't occur in all cultures. Expectations develop and are carried forward through generations. And, w/o offending or criticizing or inferring anything to any of our male posters, some of the chauvinists in history wanted to perpetuate those expectations, as did and do some religions...barefoot, pregnant and in the kitchen.

Just within the last few days one of the local news stations that one of the few local papers had been paying women less than men doing comparable work. How long is this discrimination going to continue? Do we have to overthrow corporation management to get what we deserve?

These expectations are reflective of a similar attitude toward caregiving, i.e., that our work is of less value than men's. How many people would advise men to quit their jobs and stay home full time to care for their parents?

Prejudice often requires years if not decades or centuries to be challenged and overcome.

It's interesting, the issue of sons caring for aging parents. In my mother's community, a large number of the live-in caregivers are sons, who come mainly from families where there are no daughters. I have to admit I find it even more disturbing to see sons doing it than daughters, not because I view them as either mama's boys or freeloaders, but because it's even more jarring to see a middle-aged person spend their life this way when the person is male.

I took my mother to a mothers' day dinner at her community and a man I know from the community (good-looking guy in his mid-50s) was there with his own mother (in her early 90s and blind). He was dutifully bending over her, cutting her prime rib into little pieces for her, and I heard my sister say what a dutiful son he is and how much he loves his mother, and I was thinking "Aw, geez...." I was thinking that's no life for him. It's no life for any of us, but somehow the realization is even more stark and more stunning for me when the person is a man.

Just my reaction, everyone else is entitled to theirs.

Everyone’s situation and relationship with their parent(s) is so different. To tell someone they have an obligation to care for a parent in a particular way is one of the most arrogant and assuming things anyone can do. Wonder what that woman would’ve said if you’d told her you experienced abuse (physical or verbal) from your mother and, because of that past abuse, you find it difficult to care for her now. And if the response had been, “Oh, well I didn’t know THAT went on”, then you would’ve had to explain why different circumstances require different approaches and apparently her situation was different since she chose to care for her mother as she did. I mean, really! No one should have to explain away their decisions to anyone. You do the best you can. Every day brings a new challenge to address, a new problem to solve.

My mother was diagnosed with stage III lung cancer and pancreatic cancer in April 2017. On top of that, she has a hoarding problem that only worsened as her cancer treatments progressed. She refused to let me into her place for years. After being admitted to the hospital a few weeks ago, I grabbed her keys and checked out her living conditions. I cannot detail them due to the PTSD based on what I saw and smelled 4 weeks ago. My first reaction wasn’t anger but absolute sadness. She would never let me help her, even after YEARS of pleading. To my credit, I never threatened her with sending authorities to her apartment because of her resistance to my help but, in many ways, I wish I’d done just that. When she wouldn't answer the phone a month or so ago, I did call the police for a wellness check. I’m guessing she talked to them through the door. If they’d gotten a foot in the doorway, she would’ve been outta there immediately! Hoarding, left unchecked, rolls into Diogenes Syndrome as one reaches old age. It’s absolutely horrific and no TV show about hoarding can do justice to what I witnessed and inhaled. :(

To make matters worse, my mother allowed her Medicaid coverage to lapse this year. I worked with her through the hospital providing her cancer treatment to reinstate it but she didn’t send in the documents as she promised and was subsequently denied coverage. My husband (God Bless his soul!) and I asked her repeatedly if she’d followed through on this and at one point she lied and told me yes. As POA, I got the same Medicaid denial letter. When I asked her if she’d gotten the same letter she told me she hadn’t. Of course she hadn’t; She wasn't checking or opening her mail!!! Bills were coming, piling up in her mailbox; I’m surprised the mailman didn’t complain. The bills that made it in were all over the floor of her apartment when I finally saw it. Talk about anger and resentment over something!?! And that’s just one of my many screaming points! 

An upfront payment yesterday of $7k to a local care facility, which is a really good place for her, drained a small 401k to do it, and that really irks me. This is a self-pay stop gap measure until the ongoing Medicaid crisis is resolved. I told her if this Medicaid business wasn’t straightened out by this time next month, we would sell her car to pay for her care. She looked at me and said defiantly, “I can have a car, according to Medicaid. They can’t take that from me!”, to which I replied, “If Medicaid isn’t in place, Medicaid doesn’t have a say on the matter, but WE do, and we are paying for everything as of right now. So yes, WE WILL sell your car.”  I think I even heard a mic drop from my hand at that point. 

Every day I feel the need to visit and care for someone who did damage to me emotionally as a child. Between the hoarding illness and mental state that goes along with it essentially remaining undiagnosed and well-masked for years, I am dealing with things with professional help, but wow! At a time when I feel like I should be caring for my mother in the way I would like to emotionally, I’m saddled with the financial pressures and the literal clean-up of a mess I didn’t create. She has never apologized to me for any of this, even after seeing my stress level accelerate (I literally vibrate when I lay down at night; I’m not kidding) and watching me continuously work non-stop to fix a mess that DIDN’T HAVE TO HAPPEN. I basically have an adult-child-trying-to-drain-a-parent-financially-because- of -his/her-own-self-centeredness-and-basic-needs situation. In retrospect, she did this to my grandmother under the guise of moving in with her to  care-give. Sure, my grandmother needed the help but my grandfather provided amply for her after he died, even creating a well put together notebook regarding her care right before his death; What to sell property-wise, what to keep, etc.. I’ve never seen this notebook but I’m pretty sure it didn’t include a care stipend for my mother or request to have her as a permanent house guest for 15 years. There was something missing from that mother/daughter relationship, too. My mother felt a level of real or imagined obligation paired with her own mother’s acceptance issues, tied neatly with her own fragile mental state bow. What a hot mess that was.

So based on what I saw from my mom’s caregiving efforts and what I’m currently experiencing with her behavior, I am fast learning boundaries and protective strategies to keep sanity, stop screaming, and to actually repair the damage she either knowingly, or unknowingly, inflicted. Once you know where the pain orignated and you’re tired of dealing with a lifetime of collateral damage it’s caused you, the feeling is quite liberating; Knowledge is power. You can pinpoint why you react the way you react, why your brain goes immediately to an unwarranted suspicion or paranoia, and even hear yourself echoing sentiments from the past that aren’t yours today as an adult. These are remnants of a parent’s mental illness woven into your life’s fabric and you’re doing your best to unravel it and start anew. I’m just so sorry it took her cancer diagnosis and treatment process to bring all this to light for me. But the light is always, always welcome over a lifetime of darkness and despair. My faith has been strengthened through all of this as well. I used to see God through my mother’s eyes, a God that spoke to her and couldn’t possibly tell me anything different. In some ways I believed He only wanted what was best for her. Of course I know differently and recently reminded her that she isn’t the only one with a relationship with God; That He guides me, too. It’s very strange to have to even utter that to someone but part of the mental illness and its accompanying self-centeredness warrants it. Her whole situation is sad, ultimately, but I can’t let the sadness of it guilt me into giving into the madness at its core.

There’s a reason the airline steward tells you to affix you oxygen mask before helping someone else. Never forget that. It will save your life in more than one way.

Midkid, you and I both have the mothers who put us in timeouts, yes? Of course my mother's never last long, because I am her driver. If her naughty nasty daughter is in timeout, she can't be her taxi driver!

Roger, interesting point about how society looks on male caregivers. Freeloaders or mama's boy? Out of line.

As for the guy thing, no must of us don't have others saying you have to move your mother or father in with you or vice versa. But some guys, like me, are caregivers and have a parent living them, at the son's/my house, which is my situation. The thing we get are stereotypes assuming we are either freeloaders or a mama's boy when in fact all we're trying to do is take care of a parent. I also think bud's/pals tend to stay away more too. A lot of people don't understand when it's a guy being the caregiver and it's very taboo. Because of being so tired of the stereotyping I find it to be a lot less drama or (whatever) if just avoid people which is easy since I'm busy anyways. 

This is an interesting situation--my brother moved my parents in to an apartment 20 years ago that he added on to his house. Dad was bedridden with Parkinson's and almost never got up. He passed 14 years ago, Mother is evidently going to live forever, she 88 and unbelievably, still kicking along. She's got a low level of dementia and it's actually nice to spend time with her, finally.

Having said all that--I can say that my brother wishes he had NOT brought the parents to his home. Mother's health at the time of the move was terrible and they thought she wouldn't even outlive daddy. Now brother fears he won't outlive mother!

My BROTHER does most of the caregiving, all the chauffeuring, etc., and I do what I can to fill in the empty blanks. The other 3 sibs are MIA. That's just how it is.

I am 61, hubby is 65. He is a liver transplant recipient, so has already lived a couple of lives. He has a shorter than average lifespan, and I know this. He never worries about who will care for him when he gets "bad", because it is just assumed that I will be happy to. I asked him if I got sick and needed the care FIRST what would he do. He looked dumbfounded and said "Put you in a Nursing Home of course, I can't take care of you!" He was not joking.

I actually would prefer that to living with one of my kids. They are all lovely people, but I would drive them completely insane in a month.

C, I knew early on that I could NEVER,EVER have my mother live with me. There was no house big enough. Even if I was not sole caregiver for my disabled husband. I loved my mother and still do. She watches over me from above and I know she’s been responsible for saving my a$$ a couple times since she passed in November. But, she was a drama queen. She had no friends nor wanted any. She blamed my sainted father for their lack of a social life, but when he passed she remained friendless and pretty much a recluse. She never passed up the opportunity to make a cutting remark. In my life I have two active grandchildren, a disabled husband, four cats and a large dog. I have my own health issues. I’m on my way to the edge now, and taking my mom into my house at any time in the past would have put me on the fast track there with no brakes.

No one has ever questioned (out loud anyway) my refusal to take my mom in. I am an only child so I would have had no choice. If anyone ever had, I would have given them a look and wondered aloud if this angelic albeit judgmental person speaking with me also pooped rainbows.

I think what adds to the problem is that “Dementia” remains a dirty word.

I know when it became necessary to place my mother in a nursing home - I kept my mothers dementia a secret from my mothers closest and very nosey friends. I knew my mother would have been mortified at them knowing - if she had been capable of that thought process - and I wanted to preserve her dignity. I guess I thought they’d figure it out for themselves upon their frequent visits. I didn’t count on my mothers ability to show-time. So, I went from the poor, selfless daughter who had invented sliced bread, all the while caring for a disabled child - to the cruel, heartless, ungrateful child who forced her mother into a nursing home.

I know that’s how they thought of me as one of them told me so. But honestly, I didn’t really care.

Eventually- after my mother passed away, one of my moms friends called me and apologized. Saying “you probably didn’t deserve it”.
Gee, umm... thanks?

I think we are very divided in this country, as illustrated by the different experiences of CTTN55 and cwillie. My mother lives in a 55+ community, and many of the younger people (ages 50-70) I met there had moved in to care for elderly parents. When older folks in the community start failing, most of the neighbors will insist that it the obligation of their children to either move in with them or move the parent in wherever the kids live. Due to the age of the population there, these discussions happen all the time, and that is the general consensus.

I think our generation is on the cusp of the change. Our mothers were among the first to work outside the home, but not all of them by any means. My mother started working when I was in high school, when my parents divorced. Our parents generally had access to pensions also, as well as social security. Not so much before then (the first federal pension law was enacted in 1974), and now it's declining again over the last decade or so. With everyone in the workforce and accruing pensions, it became more reasonable to expect parents to provide for their own old age care, and to look askance at anyone entering old age penniless and expecting to be maintained by the younger generation.

When push comes to shove, I think most people expect adult children to step up if the parents have no other options; i.e. can't afford paid care. The numbers that are dwindling, I think, are people who think that adult children should step in even if the parent has other options. (I don't.) Fewer still are those who believe that parents should do everything they can to provide for themselves so they don't need to be a burden to their adult children. That's what I believe, but I know I'd be run out of town if I tried to introduce this concept in my mother's community. Nobody wants to be a burden until faced with the alternative - reducing their expectations in order to live the life they can maintain without help.

Uh-uh, no excuses for that lady CTTN55 - I cared for my mother at home, that's how come I can NOT recommend it with authority.

I mean, what, "I put myself through this so everybody else should too" ? Hooey.

And on the men point - no, they don't. But that can cut both ways - those honourable exceptions who do roll up their sleeves and get on with caregiving are often patronised by professionals, even treated with suspicion, and certainly get cut even less slack by employers than women do. All the same, I hear government ministers saying "families must be more involved in caring for the elderly" and I think "oi. You don't mean 'families.' You mean women. And you can get stuffed."

Glad you brought up flu shots. I got mine and am quite distressed when I hear people who WORK in the public and who have young children in their home say they will not get a flu shot! Shocking, but, I digress. They have no issue with them, just are ambivalent enough to not give a rip.

Your gym friend must not get out much, because, I think that most people now understand that providing care for a senior, especially, one who is disabled, is an enormous challenge. What woman can turn a person, change, bathe, administer medication, watch over 24/7, transport to medical appointments,  etc. ???? And most people are working themselves or are not physically able to take care of a senior.

The people that I know, may live with adult children for awhile, but, when their mobility and health go down, they move to AL or nursing home. Perhaps, that's just how it is my community in the southeastern part of the US.

CTTN55 - my grandparents all went to assisted living - they arranged this on their own initiative. Yet - why do i feel a twinge of guilt when my mom says she expects to live with me and i say no? Is it because i somehow also feel it is my "duty" or is it because i'm saying "no" to something my mom wants? I think alot of society still expects the daughters to take care of parents and In Laws. These days i don't see so many of my co-workers taking in their parents - but the parents staying in their own houses determined to remain there until they die - and then make slaves of their daughters running them to all the dr appointments, doing laundry, shopping etc, so they can remain at home.

I know i'm not cut out to be a hands on caregiver - i'd jump off a bridge in a week. I also need to continue to work full time. Guild is something we do to ourselves.

CTTN, that woman was funny. All you can do is roll your eyes and wonder how people come to believe that their view is the right one. Most older people I know live independently or in AL. Only a couple live with children. I hope that will be the trend of the future, especially since women's lives are different than they once were.

I've always encountered the opposite opinion, most people accept it as the norm to place their elders in AL then the NH. Mom had a neighbour/friend who used to tell her that it was unfair "make" me do things for her, and I've always squirmed when people try to fit me with a halo for caring for my mom - I'm no saint, and I wouldn't have done it if it didn't make sense for me as well as her. When I read the obits now I note how many old and very old people are dying at home and I wonder where all these hidden caregivers are, surely they aren't all healthy one day and gone the next. Maybe it's because we have the expectation of universal healthcare here (and I think people are shocked when they learn the cost of AL is not covered), but here home care for dependent elders seems less an assumption than a dirty little secret.

I think the expectation was "built in" because there really wasn't any alternatives. Extended family lived together for economic reasons...caring for the family elderly came with that.

Mothers raised their daughter on the same model that grandma raised them...same model for generations,

But....today, the extended family isn't there. The whole family support system isn't there. The unspoken expectations instilled since childhood are predicated on a long gone system. BUT, we are all really good at internalizing the guilt..eh?

I believe our children (especially the daughters) are not raised in that manner. I will never put my daughter in the position that she feels any obligation to be my caregiver. I have told her in very plain language that she is not to disrupt her life should I ever need care like that...let the hospital's and NH take over!