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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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Take their concern at face value and delegate a burdensome task.

"I am so torn up about this too, I really want mom to see her family more. Will you drive her for her Sunday visits home this month? You are right to step in and let me know that I'm doing isn't enough, because God only gives us what we can handle, and today he sent you as an angel!"

"Good idea that mom needs familiar faces, I have to be away for work this week, can you spend two days this week at the home with her to help her ease into her transition? They welcome known people to help with bathing and toileting, it would mean the world to mom not to learn these intimate routines with only strangers."

I have done this sort of thing for my specific situation. The haters quickly vanish under threat of having to help. Sometimes you find out someone you thought was an ass really means their concerns and is willing to significantly help you.
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nikawriter Dec 2018
Brilliant plan! Thank you BobbingWren. Much appreciated!
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You basically have to know in your heart that what you are doing is for the best. When I first moved my mother to AL I had opinions from some family and a friend regarding my decision. I was moving my mother closer to me. In the first weeks of her move I was at her AL most days of the week. One comment was that I was trying to make myself seem more important. As though this is a rewarding experience. It may be for some. To me it was a necessity. I withdrew from a number of these people. They weren't worth my time any longer. There are some family that are basically dead to me. The whole path of the process can be so exhausting at times. The future is daunting. Decline is inevitable. You have enough to do without allowing others to stand in your way. I hope you can proceed and find no purpose in opinions that create any more stress regarding the care you are engaged in.
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Nikawriter, I'm happy I could give you something to laugh about. Laughter is the best medicine. To tell you the truth, I actually had lve used these words with my step-sister who was making all these decisions regarding in home care that was going to be paid under Mom's benefits and they were going to umbrella my step-father BECAUSE he did not have these benefits. I told the in home care that I nor Mom could afford what they wanted, step-sister signed the contract as Mom's agent, arranged 24/7 care without my knowledge. I went postal on both, hence my step-sister taking 75% of the money out of checking (I was paying bills that were 30-120 days past due and had special arrangements with bank to transfer into POA so I could provide payment and subjected myself into constraints for Court (banker experience in this area). She owes the bill for the contract she signed, tried to get out of that AND took $$ thru on-line portal into the checking she did not have a legal right, OMG can you say FRAUD AND CHARGES AGAINST YOU?
Yes, I've used these words.
Merry Christmas and Happy New Year. Take control and stop letting others walk all over you. I'll help if you want me to tell them, even siblings, I get it from my WONDERFUL MOM.
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I have paid for numerous years so that my husband and i can live in hopefully a decent facility where we can have activities and food and housekeeping. To each their own but i really dont want to live in a lonely place waiting for meals on wheels.

best wishes on whatever your decision is.
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You are dealing with everything perfectly.
You do know what to say to these well meaning people. Say "Thank You for your feedback".
The caregiver will find a new client.
Just keep on doing what you're doing and tell the others to stay in their own lane.
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nikawriter Dec 2018
Thank you, Rabanette. Sometimes, less is more.

Happy Holidays and a Peaceful New Year.
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We all often speak from our own experiences. I know with mine, I so much wanted to keep my dad at home with my mom. While I don't live there, I would have offered to be there a lot. Of course the real burden would have been on my mom.

But I believe it is a very selfless thing on your part to acknowledge you simply cannot give her the care she needs, and have to let go in a sense.

People always think they know better, but they are not in your shoes and I am not sure there is any convincing them of the rightness of your decision.
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nikawriter Dec 2018
Thank you, Karsten, for your kind and thoughtful response. It was very helpful.
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Come up with a brief reply that you use over and over, without adding additional information. For example: "It is my responsibility to see that my mother is cared for in a manner appropriate to her medical situation and also to be a good steward of her finances as long as she lives. After thorough research and reflection I made the decision to move Mom to a place that can continue to care for her as her situation deteriorates. It was a difficult decision but I am sure it was the right thing to do." Then just shut up and move on or change the topic.
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nikawriter Dec 2018
Thank you, toriej113, it's good to know there are those out there willing to jump in with such support.
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Remember this: Those who express negative opinions and 'do not mean anything bad by it' also do not mean anything GOOD by it! I can't tell you how this simple statement has helped me navigate the difficulties I face with my aged mother. Your mom's primary care giver who 'genuinely loves' her has her OWN best interests in mind, NOT your mom's. It's obviously time to place your mom in a care facility that is best equipped to deal with her advanced stage of dementia, while the caregiver is NOT. Her loss of finances is the problem, nothing else. Tell the woman that while you appreciate all she's done for your mom and your family, the decision HAS BEEN made to place her in a facility, period. You'd welcome the caregivers support and if she's not able to give you that support, then she has to be terminated immediately.

The end.

So sorry for the added stress the caregiver is putting on you right now; you don't need it, that's for sure. Best of luck!
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nikawriter Dec 2018
I appreciate your advice, lealonnie1. You're right, the loss of income drove much of her very biting response. Thanks for your support.
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Bugger to them! If they haven't been hit by parent with dementia then they haven't a clue.
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nikawriter Dec 2018
Amen to that, donkeehote. There's no accurate account we can offer of what it's like to care for a parent with dementia - except perhaps it feels like Alice in Wonderland slipping down the rabbit hole. Thank you!
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People that have never been caregivers have no idea what it's like to live off the regular clock for months or years straight or to live in fear of the parent falling experiencing some other health or safety crisis. Even if there's in-home care it's still not fall safe. Crises are what drive a lot of families' decisions to finally place their parent in memory care. But given the statistics regarding how falls are often the beginning of the end for many people, placing your mother in a memory care center BEFORE a crisis was the absolute right thing to do.
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nikawriter Dec 2018
Thank you, Violet521, I really wasn't conscious of that - you're right, of course. My mom has fallen and injured herself enough to have kept me on edge for years now. Waiting for the next time simply wasn't an option.
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I too am sorry you have to put up with unsolicited opinions. Nobody knows your mother's level of need, your family dynamics and your mother's financial well being better than you do. There is a persistent message in advertisements and our culture generally that keeping an elderly parent at home is ALWAYS the best option. It's not. Good for you for doing what you know you needed to do.
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nikawriter Dec 2018
Yes, you're right again...there is this incredible split between the fairytale ideal put forth out there about keeping an elderly parent in their own home and the grim reality. You'd faint if I told you what I had to come up with monthly in home care, even with a pension. 24 hour care is beyond costly.
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So sorry you have to be challenged on your decision to place your mother in care. I just placed my 97 year old mother in memory care and what you are feeling does not mean you are not making the right move for your mother’s specific circumstances. There is no escaping the anxiety and second guessing. It is the second day of my mother’s placement, and I have not been able to sleep till 3;00a.m and I been getting up at 7:00a.m. I told her “it is time to move into a better, safer place. It is a brand, new unit on a 14 bed memory unit 1/2 block from where you live. While you can still walk, and you need to take advantage of a chance to be safe and have 24/7 care. If we wait till you fall or get sick and end up in emergency, survive, you will have to go into care at the weakest time of your life instead of going now. Your scared, I’m scared. Let’s put aside the anxiety and second guessing and make our move. She nodded her head in agreement, the next day she had forgotten the entire conversation and I had to repeat it to her, her 90 year old sister, her card club friends, long time house cleaners, and home health aid. I got it down to: “ it is time for you to move”
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nikawriter Dec 2018
Ha, the explanation was spot on - but as with so much else that elderly dementia patients lose, such articulation is completely lost. I spent 6 months planning my mother's 90th birthday-a grand catered affair with guests who flew in from around the country. A month later I was reminiscing with my mother about what a marvelous party it was, and she said, "I had such a good time. I wish you'd been there."

Oh well....
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I was raised to be polite in a gentler and kinder era. In these times, I've learned some cute responses to cut these know-it-alls to the quick and still maintain my cool. A brief smile and thank you should suffice. Then move on, ignoring their repertoire in an attempt to engage you. Also, a snicker or giggle can put them in their place as u change the subject and move on. IGNORE further attempts at their judgement calls, and get preoccupied with something else (preferably trivial) as they smolder and stew.
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nikawriter Dec 2018
Thanks for the advice, Pogomom. I wish you'd been at my side when I was hit by this caregiver's vitriolic response to my decision to place my mother in a memory care facility. Smart response!
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You need to consider the source. Your mother's caregiver is making this very difficult situation much harder for you with her unkind comments and you should tell her that the next time she shares her opinions with you. You can thank her for her obvious love and care for your mother and assure her that you are making the best decisions you can. Make it crystal clear that the topic is no longer up for discussion.

If other people express dismay, please don't take that as a criticism of your decision. It could be dismay that your mother's illness has progressed. I find especially in elderly friends, the progression of disease is very upsetting to them. It's too much a foreshadowing of their futures.
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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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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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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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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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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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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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"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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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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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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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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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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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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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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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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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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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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