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CantDance Asked February 2019

How have you dealt with criticism about a loved one's care?

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!


 


 


 


 

TNtechie Feb 2019
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."
CantDance Feb 2019
TNtechie,

I'm lovin' this. I'll have to devise a similar response incorporating some of Mom's quirks! Thx
BarbBrooklyn Feb 2019
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.
NeedHelpWithMom Feb 2019
Barb, I love it!

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Midkid58 Feb 2019
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.
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.
MrsParker5 Feb 2019
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!
mally1 Feb 2019
Me be sniper, too (beating on chest)!
faeriefiles Feb 2019
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.
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
Countrymouse Feb 2019
"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!
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!
JoAnn29 Feb 2019
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.
NeedHelpWithMom Feb 2019
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.
NeedHelpWithMom Feb 2019
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.

mmcmahon12000 Feb 2019
😁 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
NeedHelpWithMom Feb 2019
mmcmahan,

Not mean. Just annoyed with others. Think we all get that. We all get annoyed sometimes when we feel we aren’t understood.
Countrymouse Feb 2019
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."
CantDance Feb 2019
No kidding. I'm gonna start acting like a hearing impaired St. Bernard!
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