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I've been overseeing my 93 year old mother's care for decades now, coordinating home care, household needs, repairs, medical, and so on. Her dementia is so advanced now, I felt it best to move her to a memory care place in town where she still can see friends, but has a higher level of care for her condition. Her primary home care person, who genuinely loves my mom, has made this transition very hard, accusing me of callous disregard and so on, really far beyond what any family member would express. This move has cost her dearly financially, so in part I'm sure her horrible comments are fueled by that. She is not alone in expressing their dismay at my decision to move my mother. This move was difficult enough for me to orchestrate and pay for, but I simply don't know how to handle "well-meaning" people who feel it is their right to express negative opinions based on absolutely no knowledge of this place - and virtually no awareness of how I have struggled over the years to keep my mother safe and everything paid for (on a teacher's salary, no less). Is there any advice out there as to how to handle this situation? And thank you...it means the world to me...

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nikawriter, so many people have zero clue how difficult it is to take care of an elderly love one in a home setting. Each case is different but just as challenging. It can take a whole village, a village of qualified and experienced staff.

Ok, I can understand your Mom's caregiver was now losing a client, but that is the norm in that type of business. It is not fair that she is making such comments about your decision.

Just tell well-meaning people who voice their negative opinion that your decision was the "best" for the care and well being of your Mom. And that your Mom is quite happy there being around others of her generation. That is what my Dad really liked... all new sets of ears to hear his stories :)
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JoAnn29 Dec 2018
I could have never cared for my Dad. Loved him but he was a hard man to live with. He would have been happy in a NH. He would have been waited on hand and foot. 3 meals a day and...new people to hear his stories.
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I am so sorry to hear people are guilt tripping you. It’s probably easy for them to be so negative as they’ve never been in your shoes.
When they say negative remarks, I would respond that your decision was to assure her safety and was the best decision for all.
Not that they have any right to comment, but take the high road and let it be. You know in your heart and much better than strangers (essentially office staff or non involved parties) what mom and you need most. Don’t blink an eye or even give an explanation; One sentence will do and you are being gracious with extending even that much information to them. You don’t owe them an explanation.
You need to take care of yourself as well. Your mother is well provided for and has been for years.
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Your mother’s caregiver was doing a job she was hired and paid to do. She is not a blood relative and even if she were, unless she was devoting as much of her life to Mom’s care as you were, she still would not have had the right to judge. She stepped over the line by criticizing her employer, which is what you are. If I were you, I would contact her agency if she works for one and suggest she takes a course in professionalism in the workplace. I work with young children and I answer the parents’ questions when they ask, but I’d lose my job if I gave them child rearing advice or told them their kid’s a brat and they’d better step up and raise them right.

If the caregiver says anything again, I would thank her for her exemplary care of Mom, but explain to her that you did not consult her when you decided to place Mom and you’d rather she kept her opinions to herself. Further comments from her will illicit a call to her supervisor.
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If the caregiver is from an agency, she will get another job. I would talk to her supervisor though if she is from an agency.

If not an agency caregiver than I can see her being upset, she lost a job. But, she has no say in family decisions. Your reasoning is none of her business. If Mom is happy then u did the right thing. Caregiving is hard. And there comes a time we just can't do it anymore.
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nikawriter, you have done a great job for so many years taking care of your mother. Everyone is correct in their suggestion that if she is from an agency, you should speak with the caregivers supervisor as that is very unprofessional behavior, but she will likely have a new assignment in no time. Make sure that then you can tell her that you really appreciate her concern and love for your mother, but that your mom needs a higher, more specialized, level of care, and that you really appreciate all that she had done....blah blah blah. If it's hard to say, you can always say that the doctor has recommended it. If she was privately paid, then it is a blow to her pocketbook. If she was paid privately but legally, (paying taxes), then remind her that she can apply for unemployment benefits, in case she did not know. And let her know that you would be happy to write a great letter of recommendation for her. My ammo is always to be so sticky sweet that they cannot be mad! If that doesn't work, then a "thank you very much, good luck to you, goodbye" with a good hand shake should end the conversation. Good luck to you and I'm sure that your mom will be well in the memory care center.
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We are on the edge of the same situation. My husband and I have been caring for his mother for many years... the last five 24/7 with the help of a paid employee for a few hours each day to deal with personal care. We have decided that it is no longer possible for us to give up so much of our own lives. I'm sure others in the family will have their own opinions, but I hope they keep them to themselves.

No one who hasn't dealt with a dementia patient round the clock has any right to comment.

Be strong and take care of yourself. Each of us gets only one life to live.
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mlface Dec 2018
I just put my hubby in respite care & if all works well will leave him there. My grown girls who just visited are encouraging this as I have had day help but not at nite & now realize how much better I feel w sleeping all nite. I’m 82 & hubby 88 w 11 yrs of Alz. Reports are he is loving his new place w lots of activities but sleeping they are still working w him. He needs adjustment time. I loved his caregivers who needed the money & will spread word if anyone needs paid help. Yes I miss him but I think while he can enjoy the new placement & they him I’ve done the right thing.
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The primary home carer should be out of your life by now. If she is still being a nuisance, definitely complain to her employer, if any. If she wants to continue a friendly relationship, make sure she knows that if she shares her criticisms, she will be stopped from visiting the unit in your mother’s best interests. Quite apart from the inappropriateness of criticism, she is almost certainly breaching confidentiality professionalism.

The ongoing problem is who else is involved in ‘expressing their dismay’. Probably the best idea is to drop down your contact with them for several weeks until the initial reactions are over. Just say that you are too busy right now. If you get a second serve later, and you care about the relationship, that is the time to put some energy into explaining why it was the best move. Right now you don't need any of this!
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I would swiftly and efficiently put anyone in their place who would have the audacity to question the hard decision you have had to make after "decades" of coordinating your mom's care! I would be polite about it with some people, but the "hired help", whether she loves your mom or not, is definitely overstepping!! I would simply tell her that it isn't her mother and ask why she thinks she has the right to question any decision you make?
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This makes me so angry! These other people are quite literally not entitled to their own opinions let alone to share them with you!!
No explanation is needed. You know you’re doing what is best for her and you’ve certainly already done all you possibly could!
Be at peace with that and know that those of us that have been in any similar situation understand fully and would never guilt you over this.
Do not judge lest you be judged! Something like that..? That’s all I’d have to say to them!
The worker has boundary issues to ever share anything of her opinion on this situation! It’s unprofessional at the least and undermining of you. Totally inexcusable and she should be reported either to her boss or her professional liscensing board.
In my experience, the type of people that cross these professional boundaries do it time and time again. As a caregiver we are expected actually care but not so much as to involve ourselves with personal issues related to our clients or patients. She probably took excellent care of your mother and even loves your mom but it does not give her a pass to express any negativity towards this situation.
She was paid for her services was she not? She didn’t go over to your mom out of the kindness of her heart to give her care! She gets no say whatsoever! Shame on her!
Well meaning or not, the comments are hurtful and I would allow great distance from you and your mom for a time. The last thing you want is for any of them to say things like this to your mom and sour her view of the situation and least of all you and your relationship with her. Even with dementia she’s likely to understand just enough of it for this to occur.
Best wishes to you and your mom!
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Until you walk a mile in my shoes.........
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RitaDenise Dec 2018
I agree! I was at a Senior Center(COA) for a knitting group.

A couple of ladies were criticizing that a daughter would not care for her aging mother. Lots of tisking and general nastiness about the daughter.


this got me so angry that I said "if you have not cared for a relative, like this you have no right to complain!" grrrr

I only care for my mother partly and she is difficult! I cannot imagine taking care of someone 24/7 by myself!
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I have a friend who when someone says something out of line just says "Really?" And then stares at them. That’s it...and it’s quite effective and disarming. These people want to defend their opinions and by not saying more you take that satisfaction from them. You could also say "not that it’s any of your business, but I have good reasons." Period. May sound rude, but then they’re being rude. If the person is being sweet and concerned you can just say, "unless youve been there, you really have no idea about decisions like this."
You don’t have to justify why you made this decision. i would tell this person in case she want to continue to visit mom that she is not to undermine your decision to your mother.
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Tell the home care guilt tripper that you'd be happy to have mom back home but she would have to work without pay from now on. Bet she shuts up.
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I'm willing to bet the caregiver is a privately paid caregiver and is upset at losing her job. Understandable, HOWEVER, that issue is totally irrelevant to what your mother needs.

As far as others and their comments, simply tell them unless they are willing to become her guardian, conservator and full-time caregiver, they have no say and their comments are not appreciated.
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The guilt trippers...ah yes. The home care worker was paid. Will she take of your mother for free? Did any of the other commenters actually help you? No? I did not think so. Carry a notebook. When people get out of line, take it out and ask which shift they'd like to take. Smile. Poise pen. Watch the rapid departure.
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BlackHole Dec 2018
Amen.
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I have a couple questions,

1. Is there someone else willing to take over primary responsibility for your mother? You dont specify who the other people are so I cant say if they should bee sharing an opinion. 2. What were your mothers wishes pre-dementia? Many dont like to hear this but when accepting legal rights over a person you have a legal obligation to do everything reasonable in your power to adhere to their wishes. 3. It doesn't sound like your mother lives with you, are you solely paying for her helper or are others/ state services helping to pay for her care?

Im a "well meaning" caregiver who doesn't actually have legal guardianship so I'm looking at this from the other angle. In my situation the person in charge has been offered repeatedly for someone else to assume legal guardianship but will not hand it over even though they have been freed of all financial and direct care obligations they hold the threat of putting my loved one in a nursing home over our heads. Literally at this point all they have to do is sign paperwork.

Most people on here are directly caring for their loved ones with no help so their answers come from that place. I'm in a different place so I see your post differently...
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How are you handling it at the moment? People say these things, then what do you say to them?

I expect you're probably doing just fine, especially as whatever they say makes no difference to the reality that you have reached a clear-cut decision based on your mother's best interests.

People do have a right to express their opinions. You have a right to disagree, and you also have the consolation of knowing that their opinion may be based on ignorance or (at least partly) self-interest.

What you object to is not their right to have an opinion, but their presumption in expressing it to you - and only then if it disagrees with your own. You can try to change their minds through better information, you can challenge the presumption, you can thank them for their concern, you can ignore them, you can rebuff them rudely - whatever seems appropriate for the time, place and person. But the only thing that will really help you is focusing on the important thing, which is the welfare of your mother, which you are protecting. Compared to that, what people say is simply not worth your trouble.

Do they mean well, by the way? What is their object? A person "means well" if they bring to your attention something you need to know, in the hope that it will help in some way. These people may or may not mean well. I expect some of them do, and are genuinely concerned to know that the decision is well-founded (it is, you can reassure them of that); but others may just like the sound of their own voices. Don't make excuses for them if they don't deserve it.
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Someone told me years ago to always remember “you don’t owe the world an explanation” and it’s very true. Most of us have something left over from childhood that makes us feel like we need to justify our actions, even when we know we’re doing our best. You’ve done well for your mom, I guess no one in the group around you has told you that. Rest in that knowledge, don’t feel any need to reply or justify at all. Those who don’t get it never will anyway
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First of all (((((((hugs))))))). Obviously you have been working very hard to care for your mother. and have done a great job.

Personally I would not engage in such conversations, People have their various motivations - like the caregiver, or others who mean well but are ignorant - which really are not relevant to your decision. One phrase I use to back people off is "Would you repeat that. I didn't quite get it". Usually that deflates the person somewhat and they hear what they are saying which may cause them to think about it. Then I would state my position clearly, without being defensive and change the subject. "Mother will be best off in memory care. Isn't the weather nice today?" This shows them that you do not intend to discuss it. Or you could politely listen to them and then look thoughtful, and thank them for their input and not carry that conversation further. "Hmmmmm...Thank you for your concern, Now I must get on with the laundry." People who sense your guilt are taking advantage of it. What you are feeling is false guilt due to not meeting the expectations of others. True guilt is when you have done something wrong, You have done nothing wrong, You have no reason for true guilt.

You have enough to do without putting up with this kind of criticism. In my view ,the caretaker, and probably others have stepped well beyond acceptable limits. You need to draw a line in the sand (boundary) beyond which you will not continue the conversation. Cut them off at the pass, Detach and distance - and carry on doing the wonderful job you have been doing for years. You deserve their praise and support much much more than you deserve their self serving criticism.
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I always said I would keep my Husband home as long as it was safe to do so. Safe for him and safe for me.
I never specified what safe was. So it could have been if he became violent. If I could not care for him properly. If he began to wander, to fall, to get into things that I could not keep him safe from, or any number of things.
Tell people that it was no longer safe to keep Mom at home. And that your primary job as a caregiver is to keep the person you are caring for safe.
That should be the end of the discussion. If anyone presses repeat the safety issue.
And to tell the truth...no friend would pressure you like this. If they do so they are not a friend.
I think many people are afraid that at some point they may be faced with the same decision and they want to know at what point did the "straw break the camels back" so they have a guiding point for when they have to make a similar decision. The tricky thing is there is no "same" situation because every person is different.
If you can honestly say you did the best that you could given the situation then that is all that you need to calm your soul and in that case you can rest easy and forget the naysayers.
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As others have said, I would absolutely speak with this person's supervisor. No one, especially a paid caregiver, has the right to treat you this way. Tell her in no uncertain terms that it is not her decision or concern. Then call her boss. If she is from an agency, I doubt they would like having someone like you out there spreading the word about a rude, insensitive employee.

If she's not from an agency, tell her to buzz off. Sorry, but I've had it with trying to be sensitive to people who have no sensitivity for us.
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You are doing the right thing for your Mom. Period. Hold your head high. I experienced the same thing with a few caregivers. You are also doing the responsible thing for your Mom’s continued care should you become ill yourself. ❤️
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Personally, I would not engage with those people. Walk away, change the subject. Whatever you need to do.
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Mary9999 Dec 2018
I totally agree with Isabelsdaughter. You aren't required to launch into a big explanation about what you've decided and why you've made this decision. Don't let them guilt you, and don't explain. How dare anyone question you, after you have devoted a huge part of your life to care for your mother. If they were really "well-meaning" people, they'd offer to help in any way they could, and they would support you through any decision. It seems there are always family members (who haven't lifted a finger to help) who are ready to criticize anything you do. I wish you and your mother well. You have been an amazing, wonderful, caring daughter, and all of us on this forum support you 100%. Take good care of yourself too.
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I would be concerned how the worker's attitude might directly affect your Mom's ability to adjust to new circumstances. Might the woman say things to her to try to undermine your best efforts?
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"While the family and I are so grateful to you and the care and love you have shown mom and us over the years, you don't live with her full time or manage her fiances. Her doctors and I along with other family members have given this a lot of thought and consideration and hard as it may be on some levels we all agree that she has reached the point where being here is no longer the best thing for her, she needs more care than we can provide to maintain her quality of life and safety and we carefully considered all the residential options before choosing this one after investigating it and visiting because of it's location and availability to all of her family and friends. So people like you can go visit her easily to maintain their friendships. I know this is difficult for you so please just consider how much harder it is for me and try to give me the support and respect of saying nothing if you can't say something supportive. Don't add to my burden or make yourself simply an employee. We consider you so much more than an employee at this point but if you can't use your healthcare provider compassion and logic in your dealings with all of us I will be forced to treat you more like an employee than a friend of the family and go to your supervisor, it's simply unfair for you to step over the line and make this more difficult than it already is."

A variation for others expressing their "opinions" unsolicited and unwelcome might include "while we never would have expected you too and I'm not saying that, you need to remember that you weren't there to ease the burden or spend 24-36 hrs at a time with mom, you just don't have a clear picture of where she is day to day, night to night and unless you want to take responsibility for her care on full time please respect the recommendations of her doctors and decisions of her family by helping to support all of us through this difficult time rather than make it harder. That's how you can help." (put up or shut up!) "Have you given any thought to how hard this is for me or do you simply not care?" "I know you are trying to help but you aren't, when you have taken on the full responsibility for her care for a year or more, get back to me with your opinion, until then please wait until you are asked for your opinion, I already have more than I can process."

In the meantime take pride in knowing that you are indeed doing what is best and safest for your mom, you are being the most loving child and caregiver anyone can ask for by doing the hard things and providing what is best for her. Don't let anyone make you second guess yourself, my impression is you have indeed covered all of the bases and are making the right decision here, take pride and solace in the love you have and are showering on your mom by doing what you believe is best for her and admitting your limitations. My positive energy and heart go out to you.
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If this just happened I can see why there is so much upset.

Life changing moves right before Christmas always cause a great deal of upset.

I am not saying you are wrong, you did far more than I would have been able to do and I believe that people get to a point that facility care is the only viable option.

Give yourself time to adjust, this is one of the hardest decisions anyone ever has to make, so your heart is on your sleeve already, if someone crosses a line it is okay to tell them they have or to look at them like the knot head they are and walk away.

When we do the very best we can it doesn't matter what anyone else thinks.
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Just thought of possible answer...suggest she apply for job there as she has the expertise.
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debbye Dec 2018
With an attitude like hers, I wouldn't want her anywhere near my mother's facility.
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Do not let these people make you feel guilty. You took care of your mom for as long as you felt you could handle it and keep her safe and unless these people have walked in your shoes they don’t get it. My response to them is this “I took care of my mother for as long as I knew I could keep her safe and when I didn’t think I could anymore, I out of love and concern moved her somewhere I knew they could. Oh one other thing, it really isn’t your business and if you think you can handle keeping her safe I will be more than happy to move her into your home.”
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If they were "well-meaning" people, they would have supported you in your efforts to keep your mother safe and well cared for. As a person who cared for her Mom and her husband, who had dementia, I know that one person can not handle people with dementia, especially advanced. It is impossible to watch them 24/7, and that is exactly what it takes. If the primary care person "genuinely " loves your mother, she will go to visit her and encourage her in her new surroundings. You don't have to justify your actions; all those years of concern and care for your loved one shows exactly what kind of person you are. God bless. HettaK96
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Tell her primary carer that if you want her opinion you'll give it to her. Better yet, tell her to shut it as she's not you and you don't need to hear her judgement. She's not God. No one died and gave her that privilege.
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debbye Dec 2018
AMEN. The OP has no responsibility whatsoever to explain herself to this person. All these suggestions for polite responses are nice and all, but unicorns aren't real. There are people who are so certain of their opinions, they don't care or hear anything else. Why should the OP waste her time and energy trying to make nice?
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Nikawriter, here are a few words to tell this person.

SCREW YOU
SHE'S MY MOTHER & RESPONSIBLITY
I DO NOT HAVE AN ISSUE REPORTING NOT ONLY YOU, BUT YOUR COMPANY TO THE STATE

GET OUT OF MY WAY, SHUT YOUR PIE HOLE AND TOO BAD SO SAD YOU WILL BE FINANCIALLY STRAINED, BUT YOUR SALARY HAS DONE THAT TO ME SO BACK AT YOU BABE!
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nikawriter Dec 2018
dkentz72,

You actually made me laugh out loud! I certainly thought this -- and honestly, if there's any further criticism, I'll use your words. Thank you!
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