If you knew then what you know now, would you still be a caregiver to your parents?

NO! I wouldn’t do it. I totally agree and I also had siblings who mother treated like two year olds up into their 50’s. So bad that she would call them when it was cold or rainy to tell them to make sure they wore a jacket. She also poured money she didn’t have to one of my brothers because he never had a full time job and always broke.

Neither brother ever offered to help for the 7 years I took care of mom and her large property by myself with a full time job. She or I did not have the money to hire anyone.

After I retired, is when mom’s health started deteriorating and then couldn’t drive. So even more responsibility was put on me for doing her shopping and laundry.

When she started falling, I had to move her in with me and my new husband of only one year. We almost got divorced over it. It was extremely hard. I was angry all the time. I was pissed at my brother. I got upset with my mother.

I finally told my one brother that he was going to start doing his share or some other arrangements were going to happen.

So in exchange for free rent, he and his partner takes care of my mom in her house now and he likes being around his mother. He actually misses her when she has had to go to the hospital.

Bottom line for me was admitting I’m not cut out to be a caregiver for her. I am still involved with her care as far as making decisions and taking her to her many dr appts.

For a while we had a gem of a caregiver. Having her made life easier while I worked. Unfortunately she had to return to home country to take care of her aging mother after her sister got ill.

After she left I "retired" and tried working from home. Hired a string of caregivers since then. Each had her good points and down sides for various reasons.

Assisted living would deplete mom's finances. Those we saw were not great facilities. Got first hand experience with a nursing home when mom was placed in one for a contagious lung problem. Not great either the most exasperating is the lack of enough staff.

Sometimes its not a choice but a necessity to be the caregiver.

If I had a choice and means would I be the caregiver. NO!

Oh heck no. I had no idea how difficult it would be even after I moved her into an ALF. Also, she was a terrible mother, not really physically abusive, but definitely emotionally, and it got worse. I'm an only child, she has 1 brother that wouldn't blame me. I should have simply changed my phone # and disappeared before I had to start taking care of her. She's always thought she could do everything herself - I should have let her. I assume she'd have ended up in state care.

NO NO NO. A THOUSAND TIMES NO.

No, I would not do it again. Going on 13 yrs w my Mom and due to outside influences we’ve pretty much thrown in the towel. Five siblings all within 35 min but I receive no help. I’m leaving soon w my husband and won’t feel guilty. Another sibling that’s caused so much hate and discontent has stepped up. Well they’ll be two peas in a pod and I wish them well. I’ve given her the best life the past 13 years but I’m tired. I want to be alone w my husband.

No probably not.

To Fairefiles: most of us go at it alone because we have no choice. We don’t have the luxury of loving family members including siblings to help. That would be a fairy tale, Ms. Fairefiles!

My situation was a little different than the question asks. I cared for my husband who was bed bound for over a year with Parkinson's disease. I fed him a very soft diet, gave him medicine every 3 hours, and climbed onto his hospital bed to change him. Sometimes he didn't know who I was. I hardly left the house. I would gladly do it again. What I would change is that I would spend more time sitting with him, holding his hand, and talking to him. Near the end he couldn't talk. He passed away last month. But I would not do this to my children. The parent child relationship is different, but each case is individual, and a personal decision.

I didn’t have a choice of taking my mother-in-law in ( long story ) She’s been here 10 months and I can honestly say the woman has destroyed my life.

No change in my decision. They needed assistance. I provided it the best way I could.

There was no way that we could be caregivers for my little mother.
Her doctor enlightened us to the fact that things would progress.
She stayed with us for 3 weeks before behavioral issues set in.
So we had to get her evaluated and permanently placed in memory care. Mom now has advanced dementia alzheimers but healthy.It's been a tough road still, but all is well.
I'm permanent guardian of my mother.
I wouldn't recommend being caregivers for anyone. To move them in your home to live, etc., is simply way too much physically, emotionally. Especially family members. We want to give them the best quality of life possible. It's rare that this can work out by keeping them with us. The task will always be to locate a prime place for them to live where that quality of life is experienced.

I never brought my dad into my home to live with me. I am glad I didn't. I love him but I know I could not handle him. He is a big man and falls quite easily. Also before he went into the nursing home he was a big drinker. He hasn't had a drop of alcohol in 3 years now, the nurses at the nursing home said I can bring alcohol for him but I don't because he was getting very nasty with the alcohol. I am now his POA and that is frustrating and stressful sometimes. But I know that I could never have looked after him in my home or his own. In fact, I know that if he lived in his own home after my mom died, he would not be alive today.

No way

For me it has been a very long, complicated journey but at times somewhat rewarding. My mom and I have lived together off/on for 20 years. I bought a home and made the ridicules decision to let her move in since she really wanted to. Worst decision I ever made because she started treating me like I was a child. I was 36 at the time, divorced, worked full-time and had been on my own since 18!!!! She always thought she knew better - then I find out she only had an 8th grade education. The more older, mature, intelligent and independent I became - the worse she could act at times. She was a game player, tried to pull out the guilt trips, etc. Now she's 92 and has been back with me for 2 1/2 years. At this point I don't really have a choice as she's in great health. But it has definitely taken it's toll on me physically, emotionally and mentally. I have friends that just don't get "it". They think that just because she cooks for me and bakes cakes cookies I have it made. I'd gladly eat a P&B just to have peace. We do get along at times and I can even enjoy her company. She has left her mark on me emotionally and some of the things she has done I cannot forgive as it was so uncalled for. I have 2 brothers that help very, very little and feel like I'm on an island....alone....with her.

She even tries to get me to move back to her small town, sell my furniture - like whaaaaat, and get an apartment? I have a home that is paid for and nice furnishings - why the hell would I sell it??? I know when she passes I've done everything humanly possible for that woman and will have nothing to feel guilty about it. If I had to do it all over again...NO! I wish I would have moved far away, away from her prying eyes and emotional abuse and her need to control everything I do. And her poor choices in life dragged mine down. Because I'm soft-hearted and wanted to help her I now know......"NO GOOD DEED GOES UNPUNISHED!" But I see her getting more frail, afraid and lonely. She has lost most of her friends so I will see this through. I'm hoping she will die peacefully in her sleep - because I think having to deal with the nursing home would do me in!

this is a tricky question, because although I always say, I will never do this again, which I do not have to anymore, but I will never caregive again for sure, even if it is a husband. Never doing this again. I would say this, being an only child and my mother just died 3/2/19, I took care of her since Oct 2008. There have been a lot of plusses and minuses with caregiving. I think my biggest problem was my failing health that I had, that is now finally turning around 2 months after her death, I am feeling so much better. Everyone says, you need to stay healthy, which is true, but what I am figuring out is, when you are actively caregiving, something happens that you just don’t care to put yourself first - really. Some kind of chemical change must happen in the brain that makes you just not care as much about yourself as you would when you are solo. Maybe it could be that I developed sleep apnea as well, so I had no energy to care for her. I would say I would do it again if it wasn’t for so long. If I knew it would be for 5 yrs, yes I would. 10.5 yrs - no I would not again.

Excellent question and I'm interested in reading the answers of those who have done this tremendously draining job. Best wishes to you, especially on upcoming (US) Mother's Day.

I shall never know the answer, though I wanted and planned for Mom to live with me. I even asked a carpenter to estimate her needs for a downstairs space, converting the formal dining room for her use. She and I talked about this decision and she agreed about 2009 that when the time came, she would move in. She passed in 2015 in an excellent SNF after three years, children and grandchildren at her side.

I was all unknowing about Medicaid, Medicare and so forth in 2009, and the whole family had planned for a live in caregiver in a room 15 feet away from hers. I sat myself down to think over what it might mean and realized it could spell the end of our good relationship, which would need to change as a matter of necessity. I had done lots of child care but only a little elder care. I wondered if I could stand it because it's a difficult job, and because my disabled spouse lives with me, too. I wondered if I would hate her. Certainly I hope not, but the point is moot.

Never would I have thought to take her in. I did for a little over a year and I became her personal slave. She refused to get out of her room to then complain to her "favorite" son that she never went anywhere--LIES!! I would take her to the park up the road for some exercise and sunshine. I would take her to her favorite stores and tolerated her roaming from isle to isle touching everything and getting in everyone's way. Her "favorite" son was also the son who exploited her financially to the extent of wiping out her bank account. Regardless, he is a "good" son according to her. This "good" son is an addict and has threatened family members (myself and our niece) with bodily harm, yet he is a "good" son. As a human, I care what happens to my mother. As a daughter, I do not love my mother. I was severely abused emotionally and physically as a child, teen and even into my adulthood.

If I knew what I know now, way back when, I would have left the country to get away from both my parents. They near destroyed me and my life. They are both gone now, but I've had to wait until I'm in my mid 60's to start living.

Yes, because my late mother gave me no other option.

Yes. I wouldn't of wanted others with her, as in the end, she had to go for awhile to a Elder care and they didn't watch her like we did and her injury killed her.

I am not sure why this question is asked -
* Many adult children want to do the best for their aging parent in need. Guilt may play a part. Many do not know what is potentially involved so in retrospect, perhaps many would not do it.
* But once the decision has been made, and perhaps an adult child is doing their best, is stressed out, and resents their initial decision, why consider what you would have done.
* So many of us would have made different decisions over our life-time if we could have done it over again, whether we are caring for an aging parent or not.
* I do think this discussion may help those who are considering what to do.
I hope they read these comments to help them make a careful, considered decision.
* I do believe many people do not know how to set boundaries, have emotional and psychological ties/relationships with parents that may be extremely stressful in this somewhat 'role reversal' -
* Many people do not know how to deal with dementia until it is thrust upon them and sometimes very quickly. It is not easy to deal with no matter how much training / education a person has. And adult children of dementia inflicted usually have NO education in this area - and learn 'on the job' as best they can.
* In retrospect, I would have married at 18, have kids with who I think was the love of my life, and hopefully by the grace of God still would have become politically progressive. I am very proud of my humanitarian values.
* This is my work. I am helping a friend now (over this month) although I haven't had the experience so many people on this forum have - caring for a parent. I can't imagine how difficult that must be - in so many ways. I only hope that we, collectively, here support you and 'us' in some ways. If I could have, I would have done this work many year sago; it feels very sacred. HOWEVER... I offer care management/direct service, advocacy, coordinating, hiring caregivers, contractors, emptying out 3 bedrm houses, helping with relocation, working with families, and am a certified massage therapist and have clients in their 90s.
I've learned that a DMV ID card can be done through a home visit (for disabled); have learned to manage oxygen needs 24/7, deal with sleep apnea machines, get passports, do all kinds of shopping and research... and on and on. I am currently assisting one client planning her 100th birthday celebration in June.
AND . . . if my own mother had lived beyond age 74, I believe it would have been extremely difficult, if not impossible, for me to work with her as a caregiver. I would have had a breakdown. My work is very different from most caregivers. I love what I do. With that said, I gain a lot of education from reading this site. It feels very helpful and supportive to many. I recommend it often to others.

P.S. Some people do not have a choice, financially.
In these situations, I would highly recommend people make their own health (exercise, meditate, move, dance) and eat a healthy diet A PRIORITY.
And get in group or individual therapy as necessary.
Do whatever you need to do to take care of yourself.

This question may prompt some people to re-evaluate their current situation and make decisions to change it, or get reassurance about what they have decided.

As far as my personal opinion, I am a firm believer that there is something within ourselves that always tells us what is the right path to take. Always.
Except in situations where our better judgement is clouded because of ignorance. And I think if I had always follow what I knew and felt was the right choice, my life would be much different now. So, if there is something I regret is to not have always done what I knew was right, as ‘right’ actions lead to a good life, a life in peace.

I believe in God, firmly and without the shadow of a doubt, and I mention this simply because to me God equals goodness, peace, and yes, many times sacrifice. Why sacrifice? Because our human condition is such that if we are honest with ourselves we will admit that when we learn the most, when we truly grow as persons is when we go through situations that take us truly out of our comfort zone. I’m not a proponent of becoming martyrs, but I am a proponent of doing what is right, and right for each of us has a different meaning.

I am 46 now, 2 1/2 years of first hand caregiving, yet I think I have been an emotional caregiver my entire life having to supply constant emotional oxygen, not even knowing that I was -and am- doing it, and without my own emotional oxygen mask on first.
My situation as a caregiver and as a person is extremely challenging, although I don’t have to do the physical tasks some of you have (such as changing diapers, cleaning the person, etc). The heaviest part of my load is the emotional part.
I had always read about the health risks you run when you don’t take care of yourself, plus as a caregiver there is a huge emotional impact that causes more harm than the “not taking care of ourselves” per se. Now I know the impact it can really have on our health.
So I know well that caregiving is likely the most challenging experience we may have to face in life, BUT I would never trade (in this order): 1) What I have learned and how much I am growing as a human being through this experience, and 2) The opportunity to be there (meaning here) for who so desperately needs me in every sense, and who I love so much.

Although I admit I am suffering -all caregivers I believe can relate- I also admit I have and am receiving enormous and generous blessings through this experience, and never want to be blind to this truth and let the suffering cover the blessings. Hope that makes sense for you. In other words, hope the darkness of sadness and tiredness never cover the light of the growth, the love and the peace.

Maybe other people better than me can learn what I have about myself and about life without going through these type of situations that really make you face your most naked truth, deepest weaknesses, and realize your greatest gifts. But I know that I would not have.
When you live life sort of as ‘the usual’, get up, go to work, come back home, make trips, focus on your very on the surface ‘happiness’, we are not feeding our true happiness, the one that is long-lasting, the one that brings peace. But when we do things that are truly meaningful, such as strive to put our love into action (the essence of caregiving), we are feeding our inner happiness, and with that many blessings come, including self growth.

Long answer to say, YES, I would do it again.
Not because something is hard, it means it is bad, specially not bad for our soul and heart. I know each situation and person is different and thinks differently, and I am completely respectful of that, but in my heart I know I am doing what is right -for me- because I am following my heart.

May God bless us all who have taken on this task of love and sacrifice, and give us strength, patience, endurance, health and inner joy to fulfill our purpose!

I have been taking care of my mother for atleast 10 years now and she lives with me. This arrangement has cause Depression and anxiety and I am exhausted and stressed out just about everyday. I love her dearly, but knowing what I know now, I would have moved far away and written my father while he was still alive and ask him to make arrangements for themselves because I have to work long after the official retirement age. And hopefully, he would have made the proper arrangements instead of leaving me alone with her 24/7 care and total isolation. No it may sound selfish, but it is reality.

My sentiments exactly, would not do again!! We were never close anyway, I’m not her favorite child! She complains about everything I do & how I do it!! She’s miserable in her own skin & it’s making us miserable. Not a good environment for anyone!!

No. But the circumstances and reasons for that are specific, and it's also important to recognise that if you actively choose not to (which was my choice), then you will face tremendous pressure from a wide range of people who think they have insight into the specifics of your familial relationships. They will try and interfere and guilt trip / force you into accepting caring responsibility.

I made the right choice for me in not sacrificing myself, but it upset the proverbial apple cart - to put things mildly. If it's not for you, be firm.

Ooh, tough question. While Mom was sweet (she had dementia and a host of other issues) and we got along so well. But. I left my home and business empty in another state to live with Mom as her caregiver. In those 13 months, the isolation, stress, and sleep deprivation took a serious toll. My three Twisted Sisters unleashed a torment I never saw coming and continued after Mom died that nearly killed me.

They went Full Narcissist and accused me of elder abuse of stealing from Mom (while Mom was alive and I was caring for her though they never stepped in) and refused to listen when I tried to explain the rationale (absolutely valid and I'd attest to it in court before a judge and jury).

Less than a week after Mom passed, upon advice from Mom's lawyer to explain transactions the lawyer couldn't figure out (he never once asked me.), Twisted Sister 2 sat with me for me to explain these transactions to the his satisfaction. (My sisters met with the lawyer privately and never included me! I had receipts and memos explaining it all.)

I recorded the entire Q and A conversation and the on-speaker phone conversation Twisted Sister 2 had with TS1 that she was satisfied everything was on the up-and-up, that I was never evasive in my answers, and I had documentation for everything. Neither one expressed any relief that all was well and they knew they could trust me. Nope. The only thing TS1 said was, "I'll call the lawyer." If anything she seemed disappointed.

They stole thousands from me when they dispensed Mom's estate. There's A LOT more they did to me, like TW3 was my executor (my best friend) and she shared my personal documents with TW1. After Mom's house sold I drove out of that state and never looked back. I'll never speak with them again.

So, to answer this question, had I known this would have happened, I would have remained in my home and left TSs to care for Mom (they would have figured it out) till the final week of Mom's life. Perhaps then I wouldn't have lost my entire family.

NO, NO, AND NO! This emotional toil takes so much away from the person watching their parent decline from dementia and other diseases, it can burn a nice person completely out to the point of having to seek help in a behavioral health unit for self healing. But then again, you can't go, because who is going to cover for mom? I really wish my mother had made some pre- arrangements for herself years a go for long term care. This is not a job for your children.

Most definitely yes!  I had other options but I wanted my Mom with me for several reasons.   In my younger years my Mom and I didn't get along (I was very rebellious) thus we didn't have a good relationship.  As we both aged we became closer and I treasured our relationship and still do (even though my Mom's dementia took away a big part of her).

It's in my makeup to help others (been doing that all my life by choice) because it makes me feel good.  I started working with special needs children when I was 12 years old and I still remember feeling the rewards. 

My Mom is so very sweet that caring for her is not a burden.   I guess if she were mean, aggressive, etc. then I may feel differently but that is not the reality in my case.

Also, the month my Mom had to spend in a nursing home due to a bad fall where she dislocated her hip I noticed the way she was being treated by the staff and I didn't like it one bit.  I couldn't wait for her to come home.

I guess everyone is different just as everyone's situation is different.

Jenna

Haven't read all the responses, but here's my take:

1) It can *really* depend a lot on the relationship, before and during care. For those who had a special relationship with the person, it can be the right thing to do and can be very rewarding.
2) It can also depend a lot on what ails the person - is it just old age decline, various medical issues or benign dementia (if there IS such a thing?) or is it a difficult form of dementia, with MANY challenges?
3) Your own age or physical capability plays into this decision as well.
4) Support of other family members, if there are any, is helpful. Many find family members do not contribute, or worse, criticize or interfere in many ways.
5) Financial capability (your own and theirs.)
6) Whether they live with you or you care for them in their own home.
7) How you personally feel about IL/AL/MC - some people feel it is wrong to place the LO there, some feel it is their duty or promised the LO not to place them, some feel that this is their LO and it is the only/right thing to do.

Everyone has their feelings on this - there is no right or wrong decision. Hindsight may change your attitude and feelings, and given the knowledge your have now after-the-fact, you might have changed your mind about taking this care on, but certainly one cannot know what is in store for them!

Personally, I knew it would be the wrong decision for me, for multiple reasons.

While I have an "okay" relationship with my mother, it isn't enough to work 24/7. Even before the dementia she could really make being with her difficult. I often said 4 hours was the max, but it could be MUCH less than that! One time she drove me out of her place in about 10 minutes!

Physically there is no way I could care for her - she outweighs me by a lot and also cannot manage stairs. Getting her up after a fall or in/out of the shower/bed would be a huge challenge (one bath is full tub, the other in my room was a shower only, but is currently MIA, awaiting replacement. The only way in/out of the house is a full set of stairs, no matter which entrance is used.

She doesn't like pets and would often tell me not to get another when the ones I had passed on. No. That is only ONE area where she would tell me what to do, despite being an adult and having raised my own kids!!! Sure, one can learn to tune it out, but having it inflicted on you daily or even weekly would get tedious! Additionally, I have a number of cats. Generally they tend not to get underfoot, but often they can. Having someone with stability issues, this would be a problem.

This house I live in needed work to be done when I bought it. Due to current shortage of funds AND having to take on all the non-physical duties for her care (visiting, appointments, managing all finances, plus dealing with clearing out her condo, cleaning and fixing it and selling it, all while it is 1.5 hours away!), work has ceased and there are many areas that would not be safe for her, even if she could manage the stairs. There are still many unpacked boxes as I don't want to put things away only to have to take them out/put them back in when work is to be done in that area.

IF she were easier to get along with and care for, like her mother before her, that might change my attitude some. My parents and my mother's sisters took turns caring for my grandmother, but she was NOT difficult to care for. Provide a place to live, laundry, food to eat, trips to doctors, etc, but no real "hands-on" care was needed. Additionally, my parent's were probably in their 50s at that time - still can be a challenging age if the person needs physical help, but certainly easier than if you are over 60 or 70!!!

I do have admiration for those who can or must provide the care (partial or 24/7), but also feel that those who choose not to do this should be cut some slack, especially if they provide all the non-hands-on care. For those who 'disappear' or get in the way - a pox upon you!