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 could never be a live in caregiver to anyone, I have 2 in homes, one AL, the other MC. They are well cared for, safe and where they should be.
My brother & I have done our duty, we also care about us, our lives. The one in Al is 98, she has had a good life and actually likes being there, new friends, activities, she doesn't have to lift a finger, this is great,
IMO it is very selfish to strap a child into promising to take care of the other spouse and never put in a home, most of these parents are living in the past before there were so many nice facilities or they are deep into religion and quote the bible for their own needs.
Unfortunately, many use guilt as a weapon to control another. Sad.
Sorry that you had to deal with this mindset.
Your response was lovely. You summed up things so well. I appreciate that you understand how these situations occur.
You did it the correct way! Unfortunately, I was completely blind and caught up in my own emotions.
Hubby and I right now are frequently saying to each other that we don’t want to do this to our children. Hopefully we don’t. It can’t always be helped when they have dementia and lose insight .
However, in general I agree that many of our parents also don’t realize what caregiving entails because they did not do it for their parents. If they did they wouldn’t ask us to do it. I call what happens today to the elderly is they live a long dependent slow death .
I don’t want my daughters caring for me. We raise them to be independent. I want them to live life for themselves.
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.
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.
You have brought up an important point on this topic. I do feel that it is a parent’s responsibility to discuss our future care with our children.
Yes, it is important to save for our future. This isn’t always easy. As you know, we can run into setbacks when saving for the future.
First of all, raising children is expensive. Then there are bumps in our lives that cause us to take a hit. Several years ago my husband was laid off at work. Buying our home was a major expense but it is an investment.
We had unexpected medical issues and that eats into savings as well. I had fertility issues and the medical bills were not covered by our insurance.
When I did get pregnant with a high risk pregnancy, I still didn’t have medical coverage because my husband’s company swapped out maternity care coverage for dental insurance. So, our inside joke was that we had to figure out a way for our dentist to deliver the baby! LOL 😆
My husband has had health issues as well.
I quit my job to become a full time caregiver to my mom which I do regret. Live and learn, right?
So, it has taken awhile to build up our financial situation and of course we would like to have more money than we have to stash away.
We do have some lovely assisted living facilities in our city and that would be my first choice.
I am glad to see that you are working on your future plans too. It’s interesting that we don’t think about these things as much as we should while we are young. We’re busy with other things.
Your post makes me realize that we should probably discuss this topic with our children so they know what lies in store for them in their future.
Educating ourselves and is truly the best gift that we can give each other.
I always see Barb posting about a certain website dealing with finances regarding our future. I can’t remember the name of it though. It’s terrific that she has made this suggestion for others to look into.
Thanks again for your insightful response.
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.
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.
My mom has good financial plans but otherwise not much planning. I think she feels that I will help her make plans after she divorces and I'm willing to help with plans and implementing but I won't take care of her in my home. Getting my kids out and in their homes is my priority. It's me time.
Sorry about your mom’s divorce or is it for the best? Even if it is, it is still a difficult situation.
You sound like a very practical man. You also seem to be very compassionate. I’m sure that your mom appreciates your kindness.
I have not done the very hard yards others have with in-home 24/7. But I did enough that when I said Yes to caregiving, it had the consequence of No to something else. It took time to see that. But I don't regret it - it was educational.
At first it felt very selfish to say No. Then I thought more on it, started asking myself questions. Why was my husband, children's & my own daily stuff being de-prioritised? Were our needs less important? Was I the only person to provide help? What other options existed?
I'm sure my choices would be different if I had been born 100 years ago. Slaving away on home chores as women did. All those babies & growing children! Plus elders that couldn't live alone.
But life changed didn't it? People live so MUCH longer.
No one EVER knows the parameters that will embrace “honoring” such a promise, what the demands will be, who will be left to carry it out.
I thank God that I was never asked, but seeing the lives others who were caregivers led before they were freed, either by the death of their LO or even sadder, by their own deaths or incapacitation, I never made that promise to myself or to others.
NEVER say it! NEVER feel guilt for not offering it!
If you can offer help freely AND SAFELY while caring for a Loved One, do that. If and when the task gets so overwhelming that you can no longer do it for the satisfaction YOU receive for your generosity and sacrifice, seek an alternative means of care as soon as you possibly can.
I did watch as my dad helped his Mother in law through her battle with cancer and since she lived with us after my mom dies he was for the most part her caregiver. She died about a year and a half after my mom.
I sort of took over the house at that point (I was 12) and helped my dad through his cancer. He died when I was about 15.
I was caregiver for my Husband. 12 years with Alzheimer's/vascular dementia.
I WILL not put a family member through caring for me!
I made the expensive decision to purchase Long Term Care Insurance.
The house that I purchased when caring for my Husband was built handicap accessible I plan on remaining in this house until the day they put a tag on my toe and haul me out feet first.
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. 😊
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.
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.
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!
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.
I don’t resent caring for my father . He was pleasant . It’s the very difficult ones like my mother that you put your life on hold for and they berate you that causes resentment .
I have already apologized to my children in advance if I give them grief .
I have done the same with my children as you have.
The simple fact is, there are no ‘perfect’ children or parents. Everyone makes mistakes.
My grandmother used to say, “There is good and bad in all of us. I believe this to be true.
I despise when people feel that they are perfect.
Perfectionists often make themselves and others miserable. They are extremely critical and can’t accept failure in any form. They fail to understand that we are able to learn from our mistakes.
My mom was a perfectionist. She did apologize to me for unintentionally hurting me. I truly believe that in many cases, hurting people hurt others. She was going through her own challenges in life.
Family dynamics are so interesting, There are times when people hurt the people that they are closest to the most. They wouldn’t dare speak to a stranger in the same manner.
They feel safe with those who are close and know that others wouldn’t put up with them.
In my case, my mom’s house had nine feet of water in it from Hurricane Katrina. She was too old to rebuild.
It was an emotional time for everyone. Mom was homeless and I felt horribly about it and allowed her to move into our home.
I truly didn’t realize how difficult things would become. I wish that I would have had the foresight to tell her that she could have stayed temporarily and then made other arrangements for her.
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.
I have always expressed myself "incapable due to my human limitations" to care for any elder in my own home. And that is how I feel. BUT to be fair it is also how I was raised. I was raised that you worked hard, saved harder, took care of yourself so as to not burden others. Raised that the parent who has a child by choice or by accident is responsible to raise and teach that child, to render loving care and training so that child could, as my Mom said "be independent because that is what the world will require" of you.
So in short, yes, I think we are tremendously influenced by how we were raised. Not to say that we cannot choose a different path if we are lucky enough and strong enough to make that choice. But we ARE influenced.
I think it’s a combination of things but you’re right, certainly the way we are raised affects us.
My sweet mother in law had an awful childhood with a vicious mother.
When I asked her why she didn’t cut her mother out of her life. She said one thing, “I feel that I must obey the fourth commandment.” I told her that I knew a devout nun who said that God never called us to be a doormat.
I am reminded of the Crosby, Stills and Nash song, ‘Teach Your Children.’ Great song!
I have known mothers and fathers who simply couldn’t let go. They meddle in their children’s lives as long as they live. It’s ridiculous.
We have to allow our children to live their own lives. If they make mistakes, hopefully they will grow and learn from them.
I never expected her to deteriorate so quickly or to become as dependent as she has. Although I always planned to have her live with us when she needed to, I didn't expect it to be so soon and also for her to need such total care. I feel a lot of guilt since I am an RN, because I do have the training to take care of someone, but I also have my own family and I just can't do it mentally anymore. Also, even as an RN, I can't lift her off the floor by myself, and my husband isn't always here to help, and she falls a lot. Not to mention, my husband said absolutely not. Even with him telling me how hard it would be for me I would still have done it because of my sense of obligation to her. If he hadn't said no, I would have done it anyway and really it's not fair to him or my son.
I am working through it. What helped is having my own child. I absolutely NEVER would let him care for me if I ended up in my mom's situation. My husband and I are actually planning to see an estate planning attorney once we have my mom's situation settled so our son doesn't have to go through this. Knowing I wouldn't want that for him has helped lessen my guilt because I feel like most normal parents wouldn't.
But, I still hear my uncle's voice in my head and wonder how badly he thinks of me now for putting her there, but I just have to keep telling my self that I did what is right for her, and he is not in my situation and never has been. My grandparents both died fairly young, grandma at 57 and grandpa at 73, and neither was the total care that my mom is. She is getting good care and has adjusted pretty well to the NH. She's doing way more than she was at her house. She participates in activities and has made friends. She has one friend who has pretty bad memory issues and she looks out for her, which I think gives her a sense of purpose. I am able to take comfort in those things.
So many sad stories on this forum. Your story is heartbreaking.
I admire you for not wanting to put your son in the same situation. I feel the same way about my daughters. It’s so unfair to children.
I feel especially bad for you. Being a nurse and then having to be a nurse all over again. It’s just too much!
Wishing you all the best.
This is the whole thing...years ago most women (at least in my family) were home full-time and the husband's worked. There was very little divorce, not a lot of blended families and people got married and did not live together, pretty much the same names and faces planted some roots in the neighborhood.
All of the these physical therapists and specialists did not exist on every street corner. Women married young, had their children young, by the time they raised their family then Nana and Grandpa started needed help.
In my day, the "in-law apartment" or family room/Auntie broke her hip and is coming to live with us for a few months was simply done without much fanfare. Everyone I knew in my neighborhood lived like this.
I actually attended an elementary school that sent us home for lunch because all of the mother's were home.
Today's family geo-graphics are not the same as my era. I have mentioned this before on the forum--I attended a conference years ago and a lady from Argentina said her people live for the greater good, U.S. lives for the self--the individual. Let me reiterate America is the greatest country and I considered myself one of the luckiest people (1 in 20 people is born in America) to have won the lottery with the parents I had and living in this great country that my late father fought for.
My neighbors who are retired nurses and have worked in every hospital and nursing home facility said to me, do you know how lucky your mother is to have you. They also said you never see an Asian or a Latino in a Nursing Home.
Folks years ago, none of these Assisted Livings' existed. I am not in that category of $$$. It's really real estate. The NH where I live are all short-staffed, overworked and underpaid.
In the year 2023, there is no "one" answer for everyone here on this forum. It depends how much you can put up with and the level of care your loved one requires as a disease progresses or how the elderly decline. For example, I do not know how to give an IV. I know what my limitations are. A plan for the future has to be considered, "what if". Don't feel guilty, but also look to the previous generations and the incorporate the old with the new.
Also, the materialism at least in my family is unbelievable. Yes, they say I have to work but go look in their garage and see the "stuff". The sports on the weekends even on a Sunday rule. No more visits to Grandma's.
It's a different era and if you are not careful the pace is "frenzy". I grew up remembering on a Sunday, all dressed up "Sunday Best" attend Mass, go to the bakery, come back have a pot roast, carrots, read the Sunday paper and relatives would visit. We did this for years. All retails and banks were closed.
There is a reason why there is a book called "The Greatest Generation". It should be required reading in every school system in every State in America.
Take what you want from this. Some of you may be from my generation. In all honesty, most people--myself included, want to remain at home but you also don't want to go down with the ship. When is that line crossed, that's up to your own individual situation.
Obviously things changed . There is a need for nursing homes. That is why they exist . (Auntie needs more than a few months of care with little fanfare as you described.)
As far as the “US lives for the self “. You have that totally backwards. Why does the older generation expect their children to stop their lives ?
And I’ve worked in nursing homes. There are all kinds of people in them including Asians and Latinos .
You sound like my mother who used to say everything went downhill when women started working . Then was selfish and demanded alot of me my whole life including taking care of her . So the “US is lives for self “ is not my generation . It’s the generation that thinks we owe them something and have to take care of them for years.
And BTW , it’s not all materialism . Salaries have not kept up with cost of living . And the price of sending a kid to college has gone up exponentially the last 25 years. It’s is 20x the rate of inflation . My kids graduated college , I’m still paying loans .
Instead of reading about the good old days , how about we try to fix now .
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.
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 .
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.
Always preface those statements with "MAYBE."
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.
You certainly dealt with a lot. I’m so glad that it’s all behind you now.
You deserve to be happy and live in peace. You did more than your share of caregiving.
For now, my "almost 80" year-old mom is independent. I monitor her health since I live the closest to her. My sister monitors her finances. So far, our mom doesn't need our assistance. In the future, she will move in with my family. I will most likely enroll her in adult day care since I will probably be working until I am "almost 80." If she needs day and night care, I will get her placed into the nicest facility I can since I know I can not provide 24/7/365 care without at least 8 hours of sleep every night.