Over and over again we see adult children and grandchildren who are filled with anxiety, depressed, frustrated and exhausted.

While I wanted my parents to be well cared for, I deeply regret that I quit working to be a full time caregiver. I regret that I lost precious time with my own family.

I made a promise to my father before he died that I would care for my mother.

I was naive and the thought of not doing the ‘hands on’ work myself didn’t even enter my mind.

I had no idea what was involved in being a full time caregiver. I only wanted my father to die in peace knowing that mom would be cared for.

I believe that my dad didn’t even realize how difficult this would become for me. Neither of my parents took care of their parents. They had no frame of reference. Nor did I.

My father would never have wanted me to struggle for so long as a caregiver. Mom died at age 95.

My mom was afraid of growing old with Parkinson’s disease and she truly hated being a burden on me. Oh, she had her flaws like we all do, but I look back and see that I brought a lot of the misery that I suffered upon myself.

I didn’t acknowledge that caregiving had become a huge burden on me until I went to therapy.

For those parents that have intentionally tried to impose guilt onto their children, I wish to say that I have never seen ‘guilt or shame’ motivate anyone.

Shaming someone is a tactic that is used to control others and break their spirit. All it ever accomplishes is anger and resentment. Children who continue to be a caregiver in these circumstances do so out of a sense of obligation or in some cases from fear.

I am so happy when I see people who haven’t ever fallen into this trap. They set a healthy example for others to follow. It is awful when they are criticized as being uncaring.

Children who place their parents in a facility or hire outside help do care for their parents and they are very wise to care equally for themselves. I wish that I could have done this and avoided the pitfalls of caregiving in my home.

I was greatly influenced by my parents' expectations of me until I realized they were ridiculous and would ruin my life entirely.

That's when I pulled my head out of the sand and said NO. My life is just as important as your lives.

And off to IL and AL and MC they went. Where they had a good quality of life and where I was able to preserve MY sanity and well being, to SOME degree. Because once a parent is placed in managed care, there is STILL a huge ton of things to do for them, let's face it.
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Reply to lealonnie1
NeedHelpWithMom Mar 14, 2023
You were smart, Lea!
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My narcissistic mother’s mantra was “I brought you in you bring me out”. My response after much counseling is that I did not ask to be brought in. Additionally none of the seven sisters took responsibility for their mom who was in a nursing facility. When time came that she could not live independently, I told her she needed to decide where she would spend her last years. I told her well ahead of her needing care.I told her if she did not decide, she might not like my decision. She really wanted me to quit my executive level six figure job to become her servant. I explained that I would not do this. The transition to independent living 150 miles from us was her choice, although any problems were my fault. Go with your self survival. You will feel guilty, but stay strong. My mother was evil. She unhooked my dad from life support and CREMATED HIM before I got there within 12 hours. The man at the funeral home called me to say that my Purple Heart father was supposed to have his ashes spread in potters field to feed the roses. Was I ok with that…NO! I ptotected my mother with good assisted living. I had a friend who visited her mil there and would see my mother happy…until I got there. Don’t feel guilt…just do the best you can. My last conversation from my mother was her asking for me to bring her Benadryl due to congestion. She was 150 miles away and we were not allowed to give additional medication. In addition, I was in Idaho…notable to get a flight. Her last words because she ingested fluid that night…See I knew I could never count on you. No matter how much you do, take care of YOURSELF. You do your best. You did not come into this world to take care of all needs of other people, even your parents.
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Reply to Lilylynn2u

I felt obligated to care for my parents. They’d made no alternative plan. They didn’t talk about it. They didn’t take care of their parents in any difficult or meaningful way, and their parents died in their 60s and 70s. They had no idea of the commitment, exhaustion and difficulty they would cause by living into their 90s. This needs to be a discussion ongoing with every parent: what will you do to provide for yourself when you can’t take care of yourself?

Too many elders have no idea. They apparently expect a miracle on their behalf, something that will magically happen to stop their aging process, replenish their bank accounts and provide perfect care unending till their soul decides to depart on the wings of a dove or some such stupidity. Are we beginning to resent this enough to revolt?

Because it doesn’t happen that way. Ever.
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Reply to Fawnby
NeedHelpWithMom Mar 3, 2023
I agree that the subject should be addressed before the time comes that parents are in need of care. Excellent point!

My daughters told me that they wanted to care for me when I get older like I did for my mom and dad.

I told my daughters that I do not expect them to care for me.
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What a wise post!

I'd only add one thing. It seems that so often in families it is one sibling who bears the brunt of the caregiving. Maybe that one sibling has been groomed for a long time to be the eventual caregiver.

I often think that Mama and Daddy do not "deserve" a 24/7/365 caregiving slave daughter (or sometimes son), when they have also raised the other siblings to NOT apparently care at all. Sometimes the parents even make excuses for the other siblings. When it is all dumped on the scapegoat child, that child does not realize how they are being taken advantage of. They often say that they can look themselves in the mirror, they know they are doing the "right thing," and that their sibs will regret that they have done nothing (in some cases, don't even have any contact with the parent). No, those siblings will probably NOT regret it. They are liking the sweet deal they got.
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Reply to CTTN55
NeedHelpWithMom Mar 4, 2023
Oh boy! You hit the nail on the head with that response! A bazillion people will agree with this statement.

I happen to be the only girl in my family. Many times I discussed how parents in my generation expected the ‘daughter’ to be the primary caregiver. Also, just in general, parents from that era, treated sons and daughters differently.

Wonderful posting!
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My parents had 49 years from the time their last child left home until they lingeringly died.

During that time, they cared minimally for their own parents, which involved sitting with them in their home to watch TV, cooking an occasional meal to take over, and very little hospital visiting as the old folks obligingly died in their 70s.

My parents never were faced with full-time care of anyone. They traveled, rode around in their boat, partied with their friends, spent lots of money on luxury vehicles, spent time at their second home, entertained, ate out a lot, bought anything they wanted - jewels, clothes. Not once in their Forty-Nine Years of Unfettered Freedom did they plan for What Happened Next.

What Happened Next was total dependence on me for everything you need to do for an elderly dying parent. We hired help. It wasn't enough. I had to be there too. I could no longer work at my business. That cut my income. They had a business that needed to be run so they wouldn't run out of money. They had two houses that were in disrepair. Their estate was in a shambles due to not updating their will since they were about 45. And on and on. I had five years of overseeing their dying, and five more of untangling their business mess, which involved multiple lawsuits and liens. Ten years! While I had health issues of my own, serious personal problems and a sick LO to take care of!

I loved my parents, but I resent the hell they put me through. (And they weren't the most kind and loving parents, either.) Who wouldn't resent it?

It will be different for my children. Please, if you haven't started making arrangements to avoid What Happens Next for your kids, get it going!
Helpful Answer (11)
Reply to Fawnby
NeedHelpWithMom Mar 6, 2023
I see a lot of resentment among caregivers. Whenever someone’s life changes so drastically due to caregiving people are bound to feel resentful. It’s a normal reaction.

I went through periods of resentment as well. It doesn’t necessarily mean that we don’t care about our parents welfare. We become angry that we no longer have the freedom that we once had. There is nothing worse than feeling trapped.

I wholeheartedly agree that preparations must be made to maintain a healthy relationship between family members.
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My Grandmother was born in 1901. She married in her early 20s and had 8 children all lived to be adults I remember her sister and father living with her but pretty independent. Her father died at 86 from old age. Her sister entered a NH after my grandfather retired saying my grandmother could no longer care for her because she had broke her hip and no bedrooms on the first floor. My Dad said they seemed to always have someone living with them, but that was the times. SS was not started till the 30s and I think it was the early 40s before an actual check was issued for $25. Medicaid was enacted in 1965. And NHs were far and in between. Als and MCs were not even in existance. So children were still taking in parents. But back then ill parents did not live to be 90 and 100 yrs old.

I was so lucky that my Mom was easy. It was hard dealing with her Dementia and really when I took her in I did not think it was a permanent thing. I was able to place her in a nice AL where I think she was happy. She never said she wanted to go home. I really have no idea how some of our members do caregiving daily for years at a time. 20 months at the age of 65 was enough for me. Then to have a stubborn or mentally ill parent or parents to deal with. And those who were abused and still have the compassion to care for that parent, I so hope there is a place in heaven for you.

There is a post going now that the OP and her Mom have no idea where to turn and had the ability to get Dad care but were not aware they could have said No to bringing him home and the SW at the hospital could have helped them place them. Had no idea how Medicare and Medicaid works. That there are options out there if you can't care for a LO. That when you plan your retirement, you should also plan on how your going to handle an illness, accident or Dementia that debilitates you besides how u want ur death handled. And your children should not be part of the equation. Set up POAs and assign the child who lives near you and you can trust. Not one 1000 miles away that is the favored one.

My daughters know I do not expect them to care for me. They tease and say they will pick out my NH and so I need to be nice. I don't think I will abandoned but I do not expect them to be at my beck and call but I do hope I will get call every now and then and a visit and my occasional goody. 😊
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Reply to JoAnn29
Way2tired Mar 4, 2023
I remember my grandparents’ taking in great grandparents but it didn’t last long . People die much more slowly now . Now there is a long limbo between actually living a life worth living and actively dying. I also remember that the great grandparents didn’t seem as difficult to deal with. My grandmother didn’t seem stressed out . Yeah she made more food and did more laundry for a short period of time but that was it. When my great grandparents got to the point where they couldn’t walk, or dress , or take care of their own hygiene and toileting ….off to the hospital they went and passed in a matter of days.

My aunt did take in my grandmother with dementia but she was pleasant and cooperative . As she got less mobile , my aunt did have help coming into the house .

Maybe my view is skewed by my own experiences, but I feel like a larger chunk of this current very senior generation is harder to care for. They are more stubborn. Is it because they are older , so more of them have dementia?
However, they seemed in denial and stubborn even in their 60’s and 70’s , refusing to acknowledge that they were getting old . Is it because this was the first generation to benefit from modern medicine , causing them to think they could avoid or “fix old” ? I know my in laws can’t except that doctors can’t fix it all.
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I have (tried) to adopt the philosophy that I would rather live a legacy than have an inheritance. I had my kids late in life (as did my own mother) so am now stuck in the hell that is caring for a 90-year-old, bed ridden mother and helping my own high school aged kids. My mother had needed increasing levels of care for 20 years and had I been more active in her hands on care, I would not be able to have the life I have with my own kids. I don't regret that for a second.

I alleviate any guilt in the knowledge that my kids will (hopefully) go out and make their own mark on the world and contribute to society. I am more fearful of neglecting my kids to provide hands on care for my mother, who in wonderfully cared for at her NH. I know that my mental, physical, emotional and financial health would not survive taking care of her and the greatest impact would be on my own kids.

The elderly have many care options. They may not like them but that doesn't mean that their own kids should be responsible for their care. Especially when they need a high level of care and are slowly dying over years or even decades. I would encourage anyone (and do encourage my own kids) to go out and live their best lives, and help their loved ones find care solutions that work for everyone.
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Reply to Mountaingyrl

Caregiving snuck up on me. Twenty years ago we built a granny flat next to our house because my mother (by her own admission) needed to downsize and, having grown up on a farm, she preferred a rural lifestyle. Instead of getting rid of enough stuff, she had the movers place things in my house and garage. So much stuff. Who convinced our elders that they must have everyday dishes, cutlery and glasses, plus Sunday dishes, plus fine china, silverware, crystal...?

I hoped to have more kids (I did) and thought proximity would help them forge a relationship.

She has always been difficult, and I honestly thought she was just being more difficult. I didn’t begin to grasp the degree of her cognitive decline until a few years before the pandemic. By the time I accepted that I had to get her in care (covertly - she was certain she was fine and only needed “a little” help from me) COVID-19 hit and we had family in care die. So I helped her in her house. Which became 24/7.

Incidentally lots of her friends were in lovely (her word) homes but she was not about to put herself where she’d be surrounded by old people, when she was only in her mid-80s. Even in care (she’s 98) she doesn’t want to socialize with the old folks. I think she’s the oldest!

I have only recently realized I was conditioned to feel responsible for her happiness. I was a prop. (public mother versus private mother) That her expectation of being my sole focus was ridiculous. That I have value as a person, and not only when I’m doing something for her.

Having my own kids gave me a whole new perspective on being a daughter. Doing things VERY differently.

I apologized to my children for bringing so much tension into our lives. They agreed that I was between a rock and a hard place, and handled it well. I appreciated that.

My mother’s family lived 80+. A few even made it past 100. They held big family reunions - were oh so close. But she never did more than cursory visit every month or two. I have no idea where she got the idea that I was born to devote my life to her. Even in my 20s she expected me to spend every holiday with her. And she didn’t take no for an answer. More likely I was conditioned to never say no, out of fear of her threats to make my life miserable.

My husband and I are simplifying, have our wills done, et cetera, and have told our children - in no uncertain terms - that we don’t ever want to put them through what my mother put us through. I hope they’ll visit us because they want to. Not due to guilt. And they’ll live fulfilling lives. So far so good.
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Reply to Anabanana
Way2tired Mar 14, 2023
Well said.
For some reason some mothers think we owe them something . My mother was so similar . I too was responsible for her happiness. . I was to devote my life to her , meanwhile she wasn't very nice to her own mother . When I finally started saying No , she already had dementia . But like you I hadn’t realized it yet . I thought she was just getting more ridiculous in her old age . I got told “ You can’t tell me No, I’m your mother . “

Some of them don’t realize how difficult it is to take care of them . I think if they did some of them wouldn’t ask .

I have also apologized to my husband and kids for letting mom be too disruptive to our lives, which started way before she needed help .
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I'm in the process of evicting my mother and her husband. They have lived rent-free for 15yrs and refuse to pay a dime, even with a lease they signed with me. The shaming tactics, societal norms, and lack of healthy boundaries all contributed to me not taking this action sooner. 

One thing is for sure, I will never burden my son to take care of me. I simply won't allow it. My father never once asked for anything from me in old age. He figured out a way to get anything he needed on his own. 

I purchased Long Term Care in my late 30s (for dirt cheap) because I subscribe to the belief a long time ago that nobody in my family is coming to save me, nor should they, so I need to protect myself and plan to take care of myself. 

Lastly, when I was shopping for an LTC policy, I stumbled upon the fact that women are far more likely to take on the role of caregiver than men. Either way, it's unfair to expect or shame children into sacrificing the livelihood they worked so hard to build, especially since parents had their whole life to plan for old age—just my 2 cents.
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Reply to freeadvice
NeedHelpWithMom Mar 14, 2023
Great response! Love your attitude.
Good thoughts, NHWM. I’ve been amazed by the misguided promises, guilt, false expectations, and twisted family dynamics on AC forum over my time here. The caregiving I’ve done was my choice, at a level of involvement that worked for my family. I have an unhealthy, in every way, sibling who’d love me to be a caregiver for him one day. It won’t be happening in any way other than to arrange his care by others. I always hope others can see that protecting yourself is never wrong. Thanks for your wise words
Helpful Answer (9)
Reply to Daughterof1930
NeedHelpWithMom Mar 6, 2023

I appreciate your response. You’re very wise not to care for your brother.

I do agree that we need to protect ourselves. Full time caregiving is life changing. I have always said that it was the toughest job I’ve ever had.
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