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

I am currently in this situation. Total care is currently being managed by me and a paid caregiver in my mother's home. I currently am not working so it is manageable. But I return to work in September and I dont know what I am going to do. The hardest part for me is remembering that the woman in front of me is not the woman of my memories. It shocks me at least once a day that she needs directions to use the bathroom. I don't know how long I will be able to do this.

No I would not care for her. My situation is unusual I guess in that my mother is a narcissist and has emotionally and verbally abused me my entire life. I believed I deserved it for 50 years even though I never believed she was right about me. It was hard enough to finally realized she’s been wrong about me and distance myself but it doesn’t stop her from trying to manipulate me .
Fortunately she is well off . I found her a very nice upscale ILF then ALF. She abused me verbally for “putting her there” but she actually likes it, rules over some of the women and turns on the charm for the staff, her ideal situation. My husband and I take care of her health issues, etc. without thanks nor appreciation naturally but I wouldn’t expect it. I do it from a distance, I’m always kind and polite to her like I’ve always been but honestly I have no love for her, too much water under that bridge.
I sometimes wish I had a loving mother and father but I didn’t so I have been determined to be the best mother, grandma and wife , the opposite of her. That is the silver lining , she taught me not to be like she is . I go out of my way to help them , but I’d never be a caregiver for my mother . I have enough self worth not to.

I would do it again, but knowing what I know now, I would do a lot of it differently. I would not correct my mom's memory of things, as I did in the beginning, when I had so little information on all this. Her confused looks still haunt me. All in all I see this part of my life as necessary events to go through to know more about life, about myself, and others around me.

Yes I would.

I would. It's good to be reminded of that answer. No matter how awful, challenging, frustrating, stinky, aggravating it is, I could not stand by and see either of them in a nursing home. And they have been there for me as well. It's payback. I just wish I could have some help to keep up with the housekeeping, a little more sleep, and my sibling in town to share it all.

Yes I would I loved my mom more than anything I would do it over and over..i miss my beautiful mom she died last year July 15 , 2018 my heart broke and I miss her so much,,

I would do it again, even though it was very hard. She (my mom) just couldn't handle Assisted Living. We tried for a week. I visited every day, but it just wasn't working. It was difficult for my husband and me to take care of her, but I wasn't going to make her miserable. I dressed and fed her, gave her showers, put up with her mood swings due to Alzheimer's, etc. It wasn't easy physically, mentally, financially, etc., but we all did the best we could. Each situation is different though.

I have been taking care of my mother for 18 years. I would do it all over again if I had to. The time I spent taking care of my mom has been a rewarding experience. I will cherish my time spent with her for rest of my life!

ABSOLUTELY!! As difficult as it has been I cherish every minute I have with my Mom who has cancer and is slowly slipping away from me. It is a difficult journey to watch your parent become frail in front of your eyes but also a blessing to know they are in a loving, caring environment in their final days

Thank you for posting since i refuse to live with my daughter when health prevents my husband and me to live at home.

I have paid for long term insurance for about 15 years now and the price is almost $ 1000 a month now for both of us. But i think its worth it.

My daughter has offered to have us live with her and i continue to say no ... she doesnt know what shes asking for. If nothing else how will she feel at night when she comes home tired from work and we want to be entertained ... not to mention if we’re sick or bedridden or have dementia !

Im actually concerned that we’ll be healthy for so long that our bills will be so high that the insurance will cover only a small option of our needs so im continuing to work and trying to save. My retired husband pays our everyday bills.

Anyway ... thank you. It does make me feel better about turning down my daughters offer.

Please listen to this song … https://youtu.be/PxEOWhspwEA. Get the tissues ready.

I agree... It's different after your good heart and intentions go into overdrive because you feel like you are drowning in all kinds of dynamics while trying to keep them... safe, out of a 'home', fed, clothed, 'happy' (which isn't our reponsibility), entertained, answered to (have to justify almost every thing you do), physically deal with them (this is hard as they age... pushing a wheelchair, gettng them to and from... into the car), washed/hair done, nails clipped, ... It's so exhausting and it's a scarfice you never imagined. (Then, you have siblings, or other people telling you what you should or shouldn't do... or, you loose your friends, jobs suffer, opportunities wane... and, the best years of your life are gone... and, oh yes... then, there's 'your' health.... Why should 'we' feel like the 'bad' guy... especially when a parent ridicules us or treats us like a 'child'... all, because 'they' can't get their way.... (I have literally bent over backwards through the years for my mother and I know that absolutely nothing I would/could do would make her appreciate me... sad). The resistance and non-support I have gotten for the past 15 years has been so hard on me... to say the least. Sometimes I think 'parenthood' is overrated when you don't have or show empathy or appreciation for 'your' child... Yes, I realize some just don't have it in them to give... or can be narcissistic or some other malady.... which doesn't help the caregiver at all.

I am the OP. Just an update. I went on Monday to see my new heart specialist. I like him. He seems very knowledgeable and he is kind.

I have to start taking my health more seriously. I did tests. More tests lined up. My primary doctor said my lab work was off. Taking different meds. Changed dosage on some meds. So we are working on getting things in balance. Lots of follow up visits scheduled. Big step for me because I am not one to run to the doctor. I hate going but I cannot neglect myself any longer.

Stress is a killer! Not eating properly, or should I say, skipping eating isn’t good for me, so I need to change that too. Not getting enough rest because of caring for mom for so long. Caregiving absolutely takes it’s toll on us.

I had this dumped in my lap which made it more stressful for me. Like many people in New Orleans mom was left homeless after Hurricane Katrina destroyed her home. That is how she came to live with us. There was no time to plan anything. The city was in mayhem after Katrina.

I must say I was not properly prepared for any of this. In spite of dearly loving my mom it would never have been what I would have wanted in my life, 14 years and counting of caring for mom in my home.

Has been a long winding road for both mom and my family. Lots of bumps in the road as well. I am still looking at alternative solutions and trying to care for my own health needs. Takes time. I thank God for a loving and supportive husband.

My heart sincerely goes out to every single caregiver on this site. Hugs to all of you for being there for me. I appreciate it so very much!

This is a tough question! It's yes and no.

Yes, I'd take of my mom and dad again because they took care of me for about 45 years (I have cerebral palsy). However, I wished I would have known about getting a lawyer as soon as they were in their 60s to avoid probation, and POA. We did it at the last mins. right before Mom has became incompetent. Also, I wish I had known the conditions such as Sundown Syndrome, cognitive impairment and dementia before they got there. I wish I had known that their mail of bills that they forgot to do. I saw the piles, but I didn't that were bills to be paid.

So many answers. Some the same and some vastly different. Thanks everyone for responding to my post. So interesting to see how everyone feels on this topic.

NO I HAVE BEEN TAKING CARE OF MY HUSBAND WHO WAS INTELLIGENT VERY TALENTED WITH COOKING MAKING FURNITURE ,PAINTING PICTURES AND SO ON, BUT NOW HE IS LIKE A 5 YR OLD AND I FEEL GUILTY BECAUSE I RESENT HIM AT TIMES AND I AM GOING AWAY FOR A WEEK THE END OF JULY AND PUTTING HIM IN RESPITE ,I AM SURE I WILL GET A FIGHT AND THERE TOO I FEEL GUILTY BUT WE HAVE TO TAKE CARE OF OUR SELVES.

Married 58 years. Sole caregiver 24/7/365. Final stage of ALZ. Yes in a second. You do not lose your love for someone because of the tough patch you are in. Every day together is a day well spent

I want new siblings! Please! What a GREAT idea!

How do you not?? No money for nursing home and I'm pulled apart by the thought of one. My Mom is sweet but cannot be left alone for any time and will not accept a caregiver in our home. I cannot work, see friends (those who are left), I can't even do housework in front of her. My husband is 68 and wants to know when we will have our life back. I believe that she would be dead in 3 months if placed but agonize about why her life is more important than mine. I would tell anyone who asks........just say no.

I just discussed this with someone yesterday - taking care of one's elderly parents vs. placing them somewhere. First and foremost, you have to assess the truth of the relationship you had with them growing up and in your adult years. If it was a loving, kind, compatible relationship through thick and thin, that makes it a bit more complicated. But if they were harsh, not loving, and weren't too pleasant and caused problems, I don't see that you have any obligation except to place them. Second, you and you alone must determine are you a caregiver? Do you have the tolerance, patience and personality to take on this job? If you don't or won't, DO NOT DO IT - IT WILL END IN DISASTER. Remember, not everyone is cut out to be a caretaker. Or there are jobs to think of, families to raise, and the list goes on. And the parents might need help that is of a higher level than you can reasonably provide or they might have horrible behavior and verbal problems - in which case, DO NOT DO IT. Every situation is different. And you must remember, if they live with you, THEY MUST LIVE BY Y O U R RULES and if not, what will the consequences be? You also have to consider what other siblings you have and whether or not they will help. Don't be a fool. Think of yourself first and act accordingly.

Yes, even after 10 years of caregiving, I would help provide my parents' care again. But given the last five years, when I was my dad's full-time caregiver and now knowing what I soon learned, I would start out with better ground rules with my siblings. I would have dissolved my dad's trust, thus eliminating the need to force a sister to resign as it's trustee. And I would have probably had my dad sign a new durable power of attorney, thereby removing several siblings from sharing any legal responsibility of his health care and finances (which probably would have eliminated my need to instruct them on laws protecting vulnerable adults). With those ground rules in place, I would not have had to become my dad's legal guardian and conservator and I might have moved him into a memory care facility a few months sooner than I did, e.g. after 2.5 or 3 years in our home, instead of 3.5 years. Even with my wife's daily assistance, the first couple of years of full-time caregiving were hard, but the last year and a half with us was much harder and I became barely functional with ony frequently interrupted sleep.

      What my wife and I didn't know when we agreed to move my dad from another state to live with us was that my siblings' previously shared commitment to helping provide his care would, for the most part, end. Only one sister (and her husband) out of seven siblings proved to be willing to continue providing any meaningful assistance. Some siblings remained passive and that was fine, but other siblings conspired to undermine my commitment to ensuring that all of our dad's financial resources would be available when he needed them for his well-being. These latter siblings did not question the level of care my wife and I had provided at almost no cost for my dad for 3.5 years, but they often questioned minor expenses and then really balked when I told them his house would have to be sold for him to continue living in the best memory care facility available rather than move him to the cheapest facility.

      It's hard being a full-time caregiver for anyone with Alzheimer's dementia and in our case it was made harder by several siblings, but my dad deserved the best care we could provide and we would do it again, but, like I said, we would start out with different ground rules.

Absolutely, I would do it again. I was caregiver for my Grandma, too!

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!

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

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.

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. 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.

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!!

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.

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!