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I read a recent post here where the writer said she couldn't stand people saying "Your mom looks great!" I completely understand that!
I also feel like screaming when someone says to me, "You're such a good daughter." That's the worst comment for me to handle. And the person saying it is so well-meaning. I want to yell at them! I'm doing what needs to be done, and not always with a loving disposition. Yes, I love my mother. This situation, however, is a pile of doo-doo and I hate it.
Another comment that gets me hot under the collar: "You're so blessed that your mother is still with you. My mother died."
Yes. Years of dying and being tortured by your own brain is such a blessing, Cousin Thelma. (Eyeroll)And we smile. And we are nice. And we are good.

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Ha! Yes to all of it! I really struggle with the "Enjoy her while you still have her" comment too. It's incredibly invalidating. I would love it if that person instead said, "It must be hard". That's all. What I hate the MOST is when someone says "make sure you're taking care of yourself too". Trust me, I'm doing my best! I know I could be better at it. It feels like just another thing I can't quite get to. I remind myself often that people who haven't walked this walk will just not be able to show up for me the way that I need. This forum is helpful in not feeling so alone in it.
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Hothouseflower May 19, 2025
Yes the enjoy comment kills me. People mean well and are trying to be positive and kind but enjoy? Some days getting a root canal would be more enjoyable.
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I hate being told to take care of myself and no offer from the person to make that happen. The “oh, he seems ok to me” observation of my husband with dementia. Yeah? Where were you when he couldn’t form a complete sentence? I hate hearing about other’s vacation plans. Being able to travel as we did, is a distant memory.
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I hate when I tell people my 96 yo father is still alive despite his plethora of health issues which are debilitating and give him zero quality of life, but it seems they are not life threatening, the standard response is God bless him.

I take issue with who are the ones should be blessed in this miserable situation. My response now is no, God bless his daughters and skilled nurses. They are the ones keeping him going.
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CaregiverL May 20, 2025
Exactly
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After watching Mom's memory decline over the past 3 years, she went to her GP last week and put on the showtime of all showtimes. Her doc gave her a "mini" cognitive exam and I was told that she passed with flying colors! The utter madness of this disease is incredible. So Mom continues to think, "I'm fine. Everything's fine." Fantastic.
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When My sister would say " He isn't that hard to tale Care of " Mean while she had never cared for him. Or another time This Man said to me " It is a Honor for me to care for my Dad . " Mind you he was visiting from France and his Dad was in Maine and this was a short Visit .
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CaregiverL May 20, 2025
Wow 😳 I would’ve punched him in his nose
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I agree with everything everyone has written.

I honestly think anyone who hasn't dealt with dementia should just stay silent instead of offering platitudes or (even worse) caregiving advice.

Many who have loved ones with dementia bemoan the fact that friends and family seem to disappear. Now, I totally understand the disappearing, and it is fine with me. It's a lot easier not dealing with backseat caregiving advice and broken promises.
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I did the unpaid caregiver thing for years. I had two very emotionally immature parents who would tell me at a young age the house will be yours and your disabled sister's after we die (speaking of dad and herself). Little did I know that I was being set up at a very young age to take over parenting responsibilities. There was no mention of me marrying, moving away or having my own family eventually.

Years went by and eventually this scenario did play out. I got all types of complaints and was micromanaged to the point of my own life being stifled so badly that everything became a panic pick that included terrible jobs, and a bad marriage partner. Life itself became just plain survival instead of enjoyment. Dad managed to travel with his new wife and family while I was pushed to the side along with my sister.

Years later I'm still recovering.

Trust and believe, I know the feeling of being overworked, worried about finances and looking after sick people with no recovery in sight.

Eventually, I did escape and got a better job that allowed me to travel.
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BurntCaregiver May 20, 2025
OMG, Scampie. Your story sounds like that book 'Like Water For Chocolate'. It takes place in Mexico in the early 1900's. It's about one daughter isn't allowed to get married to have a life because she has to be the servant and constant companion her widowed mother can abuse then take care of her when she's old.
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My SIL said the following to me , regarding my very uncooperative, abusive mother with dementia .

Can’t you quit work and move in with her ?”

A few months later that same retired SIL removed her own mother from her mother’s own home and placed her straight into memory care .
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BurntCaregiver May 20, 2025
@waytomisery

Oh, hell no.
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I've heard them all. The one that someone tells a caregiver which I think hurts the most is

'I don't want to hear it'.

That's it for me. My siblings has said that one to me when I asked for help with our mother and needed someone to talk to about it. I would have struck her if my cousin wasn't there to hold me back.

Sure, nobody wants to hear it. That's a fact. The person living in that miserable caregiver situation being robbed of their own life doesn't want to hear it. They really don't want to be DOING it either.

I've told many family caregivers living the drudgery life of caregiver to always tell the other family members that YOU are the one making their lives possible. YOU the family caregiver are the reason why they can earn, go on vacations, hang out with friends, and have a life. YOU are the reason they will get an inheritance too. All family caregivers with non-helping siblings need to press the point with them that if they go, their inheritances get spent-down on care.

Know what I say to a family caregiver? Not your parent looks great or insult someone with the you're such a good daughter/son. No. I look someone in the eye and ask them sincerely how they're coping. Then I listen. I remind others that caregiving only works when it's done on the caregiver's terms and no one else's. I always try to encourage family caregivers to not guilt-trip themselves if they have to place someone. Or if they put their own health and life first.

You know, I had a bit of a laugh reading this post and remembering. A friend of my mother's who she hadn't seen in a long time visited. I was still living in the house and caregiving. She gave me the 'You're such a good daughter' nonsense. I told her plainly, that I was not a good daughter and my mother wasn't a good parent. That I was only there because it beat sleeping in my car and am leaving at the first opportunity which is what I did.

Another one. It makes me sick to my stomach when I hear someone say 'caregiving journey'. Which is probably why I cannot stomach that flake Teepa Snow. I did homecare for 25 years. It's not what she thinks at all.
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CaregiverL May 20, 2025
Another one I can’t stand is telling me about their vacations or that they took gf out to eat! When’s the last time you took me out to eat? I feel like saying..😡😡😡
…sickening for sure
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You are very unhappy and overwhelmed it seems, and perhaps even quite depressed. Your despair is, I think, manifesting as anger, and at anger at people who are well meaning.

I would seek counseling. The appropriate answer to all trying to comfort you, inept and as unknowing as they are (if they haven't themselves "been there" is perhaps something to the effect of: "You know, I am overwhelmed and in despair more than you can begin to imagine".

If these then are true FRIENDS, not simply well-meaning strangers they may respond "Is there some way I can help". If they do say something like that let them know that even a casserole would help. Let them put their words into action. Both of you may feel slightly better.

Consider a low dose anti-depressant to give you a bridge over what you can't change. Consider what you CAN change, and counseling is a good place to do that.

I will risk saying "I am so sorry". Yet another platitude that will feel like a shot of ground glass. I know.
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BurntCaregiver May 20, 2025
@Alva

You're right about most things, but I couldn't encourage a person to go on "meds" for something that can be cured by leaving the caregiver role.
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I live out of state and was expected or tried to be pushed into caregiving by my cousins who are local to aunt with dementia and my aunt's neighbor.
I had springing POA. Aunt's neighbor kept pushing me to get her in a facility. Stop "petting her". I was told. My POA wasn't activated and it wasn't as easy as she made it to be. I explained this to her. "Oh, that's nothing. Take her to court. Stand her up in front of a judge. He'll side with you. Problem over. It's either that or let the state take over ". Mhm. OK.
Cousins argued, "We don't want to put her in a facility! We don't want her to think we're forgetting about her!" Meanwhile, they're not offering themselves up to help nor any other solution, except my time.
"You're a good niece. Your aunt trusts you. That's why you're her POA so you'll do the right thing", my aunt's neighbor would tell me. I actually believe aunt made me POA so that she could control and manipulate me. It wasn't activated yet, and all it was doing was driving me insane and piling everyone up on my back to come and stay with aunt for a week or more, or worse yet, come and live with aunt, as my cousin hoped.
I gave up the POA and got the you know what out of Dodge. I don't hear from any of them anymore. I reclaimed my sleep and my life back.
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It made me more baffled than angry when I got the comment that my mother was, “So cute, and sweet!” Huh. Are they sure they’re visiting *my* mother?!
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AliOJ58 May 21, 2025
🤪
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It makes me grit my teeth when I take Mom to yet another dr appointment, meeting with the banker, visit at the hospital, or whatever, and somebody tells my mom, "He's a good son, You raised him right."

Raised me right? That was over 50 years ago. I am the way I am because I made myself this way ....well, that and obligation and guilt dealing with an aging parent. LOL.

Still, the notion that all of my time and energy spent managing Mom's finances and business affairs, as well as managing her healthcare, stems from lessons she and Dad taught me when I was a kid puts my teeth on edge. Don't get me wrong: I had a good/happy childhood, but there are millions of people in the world who were taught to be nice, mind your manners, respect your elders, and were taken to Sunday School--and you dont see them caring for aging parents.
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Beethoven13 May 20, 2025
I could not agree more.
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i try to smile politely when I’m told I’ll ger my rewards in heaven. I realize it’s a compliment. But LATELY I’ve had a couple family members and family friends tell me You know what happens to people in a nursing home, don’t you? They then give examples of how the senior’s needs are ignored and barely met. It’s like they are trying to shame me into not placing my dad into a facility. I feel like they would think twice if they were working as a full time caregiver for two people plus, working full time at a job and dealing with their own serious health issues. Some situations are not sustainable long term. I’m not sure if they think I will be guilted into stopping work, but that’s not an option.
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cover9339 May 24, 2025
Well, some facilities they do have a point. Many are still horribly understaffed. Even though sad, I did chuckle a little, when an aide at the facility took his break and didn't come back.
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"God never gives us more than we can handle."

(Yeah, you handle caregiving for four family members over a period of 15 years, and then you get back to me on that. If you're not dead already.)
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AlvaDeer May 21, 2025
Ha, Sunny, and these "people" with all their opinion son nursing homes. They KNOW all this because they put granny in a facility? They know all this because they work there? They know all this because WHY exactly. Perhaps just because they are know-it-alls who should be told to put a lid on it.
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Enjoy her while she’s still here? What part should I enjoy the most? Cleaning up poop 💩?
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BurntCaregiver May 21, 2025
@CaregiverL

Personally, I think I enjoy the verbal abuse, manipulative tactics, lying, and downright bullying the most. Cleaning up the poop and the hoard is just that much icing on the cake. So much enjoying. It's a wonder we don't see more caregivers laughing and smiling like idiots everywhere we go.
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Oh yes, all of this! Another version of the ‘enjoy’ comment, was, ‘Enjoy the time with her, make some good memories.’

Are you kidding. Just the opposite. I would like to FORGET EVERYTHING about the caregiving ‘journey’ with my mom, which took years.

Thank you for this post!
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"But she's your mother. She has dementia. She can't help it."

Yes, but when you can't even have a conversation with her because she absolutely will NOT talk about anything BUT her complaints, If I take a week off from communicating with her in any capacity, or two, or even three, so what?
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I retired earlier than planned to care for Mom, 91 with Alzheimer's. I can't stand it when people who should know better say "how are you enjoying retirement?". I've started saying I have a full time job. And don't tell me about your fabulous weekend plans. You don't ask about mine, because you already know what I will be doing.
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My retired sister used to call me on my birthday each year and ask if I was still working ( at my paying job) , I was. Then she would tell me about her latest vacation and called herself “ a lady of leisure”. She would then literally laugh at me and say she was glad that I “ was stuck taking Mom and Dad to all their doctor appts “. Granted my sister did not live nearby . After years of this though I decided that I didn’t have to listen to her make fun of me . So I blocked her number . BTW I never asked her for help, nor did she ever ( offer ) help .
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