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I didn't know exactly what category this question belongs, but given my mother has dementia, I thought Alzheimer's & Dementia would be most appropriate.


Mom is mid-stage in her mixed dementia journey. She is 93 and her short-term memory is shot. Her long term memory has also declined, though not as bad. Occasionally, she's confused about the identity of who she's talking to and has forgotten most of her family's names. She can still manage her ADL's reasonably well, though she gets help from MC staff with clothing choices, when to change clothes. She is also incontinent of urine. Manages bathing and personal care okay.


Personality-wise Mom is self-absorbed, critical, chronically dissatisfied and complains about everything, especially around her family; however, she can be quite charming when she chooses to be. She's a world-class show-timer. We (the family) placed Mom in a very nice memory care because she didn't want to move in with any of us. She's on Namenda for her dementia, also low-dose Seroquel for anxiety and paranoia, has other managed medical issues.


Again, Mom complains a lot. She retains remarkably good verbal skills. To the casual observer she gives the impression of being more competent than she really is and has convinced a handful of folks that she doesn't belong in memory care. Despite multiple APS referrals and multiple doctors who all feel Mom is appropriately placed, these "friends" feel free to criticize about Mom's level of care. Mostly, I ignore the remarks, but sometimes I wish I had a stockpile of comebacks to draw on for clueless people who think they know better than her family does. These "friends" have no idea what we as a family have dealt with. At the same time, I'm tired of justifying family decisions about Mom's care. I'd really appreciate appropriate comebacks that have worked for those of you in similar circumstances!





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I would simply say to them not to criticize unless they have walked in my shoes. If they still criticize then tell them that you will ask your mother if she would like to go stay with them for an extended visit because they have great ideas how her care should be handled. Might shut them up! Criticism is no fun. Most of us have been through it. Over time we toughen up and find those comebacks. You’ll get there. Best of luck to you.
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I usually take a deep breath, then just nod and say something like "Yes, Dad is doing so much better with all the 24/7 support the MC provides. Now family and friends get to enjoy visits during his best hours and the staff gets to deal with that determined personality wanting to keep water glasses full of his urine setting in the window sill."
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CantDance Feb 2019
TNtechie,

I'm lovin' this. I'll have to devise a similar response incorporating some of Mom's quirks! Thx
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I think every family care-giver has at least one of those people who critique every decision made and/or the ones who feel like there's nothing wrong at all with the person who is declining. If they only see your mom for short periods of time it's easy to understand why they can't see the problems and most people don't believe anything they can't see. I've used a lot of techniques to handle this situation.
1.) The first thing I do when a critic smacks me with their opinion is listen. What are they really saying? Why do they believe that? Is there any truth or good advice hidden in their otherwise negative commentary? Are they someone who even matters? There are lots of people who have opinions and those people don't matter at all to our life. They are not family or even close friends. For those folks I just toss them right on out of our little part of the world. For the ones who do matter I make an effort at helping them understand.
2.) For the ones who have no idea what we're going through I realize that if they have no idea, maybe it's because I have failed to communicate the details of our situation with them. That is easily remedied by providing them with more details. If they are family I invite them to accompany us to doctor visits, have access to medical records etc.
2.) If they still don't get it but they are close enough to matter in our little world, then I invite them to take pop for an extended amount of time. A long day out or even a weekend will usually do the trick. Sometimes I ask them to stay with him while I do the shopping or go to a movie etc. That up close time with him is usually enough to get the point across. Usually but not always.
3.) You have to realize that some people simply don't want to know. They refuse to admit anything is wrong even when it is right in front of them. Pop has one friend who doesn't want to know. He has been friends with my husband from before we even married. This fella matters to us. We tried explaining in detail. We sent pop with him for a weekend which ended early when he brought pop home and never wanted to take him anywhere again. We even let this close friend have a doctor of his choosing examine my hubby and that doctor agreed with our doctor. Yet, this dear old friend refuses to accept that there is anything at all wrong with Pop. He just doesn't want to KNOW. Critizing us, villainizing us, this is his way of avoiding pain. Sometimes when you've done everything you can, you just have to move on and leave that person to say whatever they want.
In the end you do what's best for your mom and what you can for the others but the critics never really do vanish so we have to find a mental place we can get to where those critics don't matter so much to us.
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CantDance Feb 2019
Faerifiles,

You've made some great points and suggestions. I especially like the one about "finding a mental place we can go where critics don't matter so much."

I do take exception to the explaining. I've worn myself out with explanations (see my response to BarbBrooklyn), and they only seem to provide more fodder for the clueless; at least this has been the case for me.

Still, your suggestion of having critics accompany me to doctor visits do have merit, esp for family members. To include folks outside the family make me uncomfortable by suggesting they have the right to be included in determinations for Mom's care. They don't.

Fairifiles, I do so much appreciate your suggestions! I don't mean to be dismissive; I just differ with you on how much latitude to extend to some of my critics!

Cheers
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😁 If you think you can do better, then you can pay for it!
What do you mean she doesn't need help? Are you a doctor?
(These might help shut them up)
Gosh I can be so mean but sometimes I love it. Muahahaha!
Hope these help
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mmcmahan,

Not mean. Just annoyed with others. Think we all get that. We all get annoyed sometimes when we feel we aren’t understood.
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I learned long ago that some folks like to be part of the problem. They like to stir the pot. They like to cause dissension and turmoil.

Smile sweetly and use the " yes, he's doing so much better now that he's getting the right care, dont you think?". If they persist, pretend not to " get" what they're saying. It will make them batty.
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Barb, I love it!
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I have shamelessly pinched this allegory off Anthony Trollope.

The big dog does not realise that the little dog is barking at him. The big dog assumes that the little dog must be uncomfortable for some reason; and so he patiently puts up with the little dog's noise. But then the little dog takes the big dog by the ear. And the big dog puts out a paw, and knocks the little dog over.

Your "friends" are yappers. Swat them away (mentally, that is. Do not actually swat them). If they really, really annoy you -

"May you never know better."
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CantDance Feb 2019
No kidding. I'm gonna start acting like a hearing impaired St. Bernard!
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"Next time, I'll invite "Friend" to take Mom home with her for holidays and see how she likes it. "

ROFL! You wicked woman, you!
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CantDance Feb 2019
Countrymouse,

LOL! In light of the fact my "Friend" has an end-stage husband at home, you'd think she'd be less critical and more understanding!
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Thank you, NeedHelp! I am toughening up bit by bit. What would I do without all my friends in this forum!
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Can’t dance,

Hey, I have good days and bad. Some days I feel strong and others I don’t. I am every bit as much of a work in progress as anyone else.

We certainly agree about this site. I feel so much better since joining this group! Just being able to vent, ask my questions and so forth. Such wonderful, compassionate, smart, funny, helpful people on this site.

Best of luck to you. I have a 93 year old mom that I both adore and driven nuts by at times too. It’s hard. I would have never guessed how hard until I found myself walking down this path. I find myself thinking of all sorts of things. We kind of lose ourselves, don’t we? But slowly but surely we will find our way back. I’m sure of that.
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I have been lucky. My one brother lives 8 hrs away and didn't see Mom that much before the Dementia set in let alone after. Other brother is doing his own thing. I refuse to be mad. They just didn't deal well with Moms Dementia. And they allowed me to make all the decisions. No criticism. And Moms friends were dealing with their or spouses health problems. And having to place their own loved ones in an AL or LTC.

My husband keeps telling me, you do not need to explain. I would just tell them that her doctors felt that she needed 24/7 care and would get that care in an MC facility. You do not have to explain yourself to anyone.
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JoAnn,

Your husband sounds like a wise man. He’s right, you know. You don’t have to explain.

In my case, I doubt seriously that my brothers would ever explain anything to me if the situation was reversed so I am going to take on your husband’s opinion in that I don’t owe them an explanation, since they aren’t involved in my mother’s care.
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My mother's friend lives just up the street. Wow, do I get an earful from her about my saintly mother from her.

No way I can explain 63 years of life with this woman and the damage she did and allowed to happen? And why? What difference would it make?

I just smile and change the subject as best I can, also set boundaries that I don't visit this neighbor a lot, as I find it upsetting to go to visit someone and get my rear end chewed b/c i am not "good enough".

BTW--Mother plated BINGO twice a week with this woman for 12 years before my name was even mentioned. 12 years. If people talk to me for longer than a half hour they know my freaking blood type, my kids names, occupations, you name it.

12 years and my name never came up.

There's literally NOTHING I can say to "make it all ok" after this long.
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CantDance Feb 2019
I hear ya. I've got a lifetime of Mom's personality disorder tucked under my belt. It would take hour to explain all her weirdness, complicated now by dementia. Besides, if you try to explain to anyone other than caretakers with similar experiences, it all sounds so unbelieveable, like <you> are the one with "the problem!" That's why I'm so done with explaining!

Re: Your Mom not mentioning you for 12 years. I can totally believe it. As Mom aged into her 80s (she's now 93), she became more and more insulated. It's like her focus became fixed exclusively on herself. No interest in her children's or grandchildren's lives, with the possible exception of what we could do for her. Sigh.
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I like your comments above! How dare they judge you or my family judge me! I have heard that some of my siblings do not like the way I care for my sister, DJR. Funny, that they make those types of comments when not a single one of them spends any significant amount of time with her. Nor are they around when she is with me. No one takes her out shopping, to the park, or on vacation, but me and her Aides. DJR thinks everyone should cater to her every whim because of her disabilities, so she spends time maligning me to other family members in an effort to solicit their sympathy. It's been three years since DJR had a stroke at age 66. She is mostly mobile now, but her biggest problem is her eyesight because she has a left side deficit. What my family does not seem to realize is that she fabricates quite a bit and has taken to lying even more. It's really sad, but hurtful to me and her Health Aides, who are also quite often at the brunt of her attacks. I continue to support her through all of the negativity because I do love her and without me, she would be left only with her Aides and no special outdoor (or indoor) activities or interactions.
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CantDance Feb 2019
Sistercare,

So many people choose to believe the stories of a person with dementia over the objections of his/her caretaker. They don't seem to realize that many people with cognitive impairment fabricate stories to "fill in the blanks" of gaps in their memory. They're not exactly lying; just making sense of their world. But it sure is hard on the caretakers!
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Geez, does this sound like my 92 year old dad. He also takes Namenda and Seroquel. Other than those issues, the only other thing is that he is diabetic. He still lives on his own with care that comes in. He really, really should be in a different living situation but refuses to move. I know him better than anyone else as I am with this on a daily basis (conservator and guardian) but you wouldn't believe how many other relatives decide that he should just be able to hop in the car with me and make a 4-5 hour car ride, or why can't he just call an Uber to get around (doesn't use a smart phone). It seems all those relatives remember him like he 'used' to be and since they haven't seen him, they have no idea what he is like now. I try not to let other's push me around anymore. I've just gotten used to it. As guardian, I call the shots with the help of wonderful caregivers and a care manager. I've had to let a lot of this go.
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It’s hard. We can’t go back to the way it used to be.
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My newest technique is to turn it back on them. For example, I'm now saying, "Have you resolved that (specific problem) you were having?" Especially if they don't want to talk about it, that ends the conversation.
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CantDance Feb 2019
I like your suggestion! I need to "practice" some of the great responses people have offered here so that next time I've got just the right answer!
Thanks!
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NeedHelp, my dad was an insurance investigator; wanted to be a Chicago cop, but was way too short (5'4"). He got more and more like your brother, and finally had a full blown case of paranoia - either that or the local authorities really WERE poisoning his food....
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Mally,

Oh my gosh! I can relate. I really, really can. I totally feel your pain.

My brother is on wife number 4 because they couldn’t put up with his BS and left. This wife is younger than his son and he’s too old now to fool around on her. You know the story with people like him. He always blames everyone else. Nothing could possibly be his fault.

Gosh, if I screw up something and we all do, I simply say that I screwed up. No one is perfect. I do not gel with people who are perfectionist. They are so hard on themselves and others. Can’t change them though. We don’t have that kind of power.

Where’s that magic wand when we need it? Oh, if we only had a magic wand! On second thought, might be dangerous if we did. We might act like Endora on Bewitched! I have totally dated myself with that remark! Well, I am 63 and must admit I still love watching some of those old shows, I Love Lucy, Andy Griffith, Beverly Hillbillies, Bewitched, I Dream of Jeannie, and we had better cartoons in those years too, Flinstones, Pink Panther, Jetsons, (We all need a Rosie robot!).

On my husband’s side of the family, his grandma was the crackpot! I started to look at it as, “free entertainment”. She’s been dead for awhile but when I was younger I would take her out to lunch and I learned very quickly not to ask her how she felt before eating! She would launch into conversations about bowels at the dinner table in a crowded restaurant! As a twenty something year old I wanted to crawl under the table! Later on, I was totally amused by her nuttiness!
Old people always talk about bodily functions but I can’t handle it at the dinner table!
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I’m an only child. This is all on me. When her siblings start with anything, I say take her for a month. Not much more is said by them. One hasn’t seen in in 5 years, one visits a few times a year for an hour, the other one has a daughter who lives 20 minutes from me. The daughter posts on Facebook when her mother visits. Her mother lives out of state. Then I text my cousin , and ask them to visit. I don’t have siblings, but I am shocked and disappointed in my mothers siblings that do not care , I care more about my dog than they do about their sister. The few times I’ve seen them, and any criticism has been thrown at me, I have said “ take her for a month “”. I need a break. Of course no one has done so. So I do the best I can and I’m at the point where I don’t care what anyone says.
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Sistercare Feb 2019
I can definitely understand your situation. While my sister has no children, she has 4 living sisters - -all who live within 5 - 20 minutes from her home. My brother and I live 2.5 hours away. But, it's very rare that (other than one Sister), the others spend any time with her. It was very surprising that one of our sisters actually came to take her out to dinner last week! DJR really enjoyed that. Everyone is so busy with their own lives and claim not to have time available for her. My one brother-in-law is a Godsend, though. I don't know how we would manage without him. I know she is extremely difficult to deal with most of the time, but I will not brush her to the side, even though I am often criticized. And, like you, I am developing the "I don't care what anyone says" attitude.
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im the only one, that manages my grandmothers stuff while shes in the nursing home. everyone has been supported. if I did come across being judged or criticized im not gonna be nice about it.
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Good for you!
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Quote: “If you’re going to be critical, hire someone else”!
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mally1 Feb 2019
Ha ha!
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Ah, yes, the critics. From bossy relatives to clueless hairstylists, I've fended them off. Rehearsing conversational comebacks is very helpful. These work well for me:

"Thank you for your feedback. I will give it the thought it deserves."

"Sadly, I am unable to help my mother as she won't cooperate with me"

Comebacks allow you to take control of the conversation so you are not standing there flat-footed, frozen, eyes filling with tears. Once you deliver the comeback you can make an excuse to walk away. These people deserve zero details, explanations or excuses.

My comebacks are sharp, quick and precise. I am a sniper. You can be one, too. Best of luck!
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mally1 Feb 2019
Me be sniper, too (beating on chest)!
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It's stunning, amazing, really- what people that are completely disconnected from the situation have to SAY about the situation. I've been living with Dad, and even after he was diagnosed and really started to (obviously) decline, we still had several relatives in complete denial about his dementia, the extent of it, or his behavior. "Oh, no, he's fine, you just need to have him do "X" (insert suggestion here, like "do crossword puzzles, or eat more kale"). These were actually suggested by someone as a means of keeping him from declining further.

Initially, he used to try to "cover" as much as he could, too, so he was able to fool people that didn't live with him for a while, but it was so very frustrating that these people that saw him the least really and truly thought they knew what was going on, or how to handle it. Back in the beginning, I was routinely told by my aunt, his closest sibling, that I must be exaggerating, as he would NEVER do this or that.
And like another poster mentioned, even once they get over that hump and have now come to know and accept that the person has dementia, they still "listen" to what the dementia patient says as fact!

Do as MrsParker5 has suggested, and get yourself a few snappy comebacks. If you utilize a 5 or 10-second blank stare before delivering this comeback, it's lethal. You don't have to justify your actions, and are not obligated to supply any explanations to people that have no idea what's going on and are prepared to do exactly zero to help.
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When I left my state and moved in with my late mother, who was living in another state 500 miles away from me, I provide care for her for 8 months. My brother said "He wouldn't do it." I let it be because you can't change someone - not even your sibling.
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So true! We don’t have the power to change anyone but ourselves.
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Your question makes me silently scream.

The platitudes given. The thoughts and prayers. No one, no one who has not been in trenches 24 7 365 has any footing to offer critique.

And a pox on them. Quite frankly.
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Sigh. I understand what you are going through. At almost 90, Dad doesn’t have that much extended family left, but the ones that are left all feel that they are entitled to an opinion on his care. They’ve all come to me ( 4 people) separately and told me that Dad doesn’t like the facility that he is in and he should be moved. I’ve seen the food, it looks good and I’ve seen him clean his plate. The caretakers are kind and compassionate, yet he doesn’t like any of them. Dad has always been a chronic complainer, nothing is ever good enough, ever. I know that if we moved him, he would just start complaining about the new place in a couple of weeks. He was always a complainer before the dementia, now he’s just a complainer with dementia! I’ve talked with my brother and we both agree that Dad is in a good place for him. When one of the relatives complains about where Dad is, I just say, “No, he’s not moving. No, it’s not a bad place. And no, he’s not moving”. Then I change the subject to something else more pleasant. What else can you do?! You have to stay firm and not let their criticism get to you. What is it that some people say, haters are gonna hate, no matter what you do. Try not to take it to heart. Take care!
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Keep telling us that message. I know I need a reminder , thanks.
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Nothing is easy for the person who doesn't have to do it. Take him home with you for 3 days and then let me know how it went.
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Love it! Love it! Love it!

What do you mean three days? My brothers wouldn’t even last three hours with my mom.
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Thats some strong medication. My mil had incontinence UNTIL I took her off aricept-donzepil. Should not have been prescribed as early as it was. Nemendine* was prescribed next. Reading users feedback. No thanks. Temporary improved memory, then side effects, then ceasing it, rapid decline to severe stage. Others comments, just smile, closed lip, shake your head slightly and walk away.
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I took care of my Dad for 5 years. Not one criticism from family and of course none from his or my friends. Have mil now and I've only had thanks, one sil even willing to help anytime I want. My 33 year old son is very helpful with her.
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