Anyone else get severe backlash if they say the word "dementia"?
For the second time ever I used the word dementia to my mom. I didn't intend to, I had no plans to try and have any kind of future care talks or any talks aside from the usual small talk but I got backed into by my mom and now I'm paying for it.
Saturday eve my husband and I went to her place, at her request, for a visit. The whole time she was in a nasty mood. It's been raining here and to my mom this is a huge deal. Like she's being tortured because the weather isn't perfect. I let her groan on as usual, and then she ramped it up. Started saying she didn't like it HERE, and that she preferred her old place MUCH MORE and the weather there was so much better.
I still didn't say anything, but my husband started trying to diffuse her. He meant well I'm sure but perhaps framed it wrong, even though I think everything he said was valid, and kind. He said "well, we're all still adjusting and getting used to things", my mom then wants to know what WE had to get used to, and my husband tells her that "Piper worries a lot about you and that you haven't made friends", then I said "It would be good to check out the senior center". Her nasty mood prevailed and she shot that down. Then my husband said we had things we needed to discuss and should do that down the road.
Then my mom starts pushing me.... what do you need to discuss? I kept resisting that we should talk later. She kept at it, what? what? Finally I said, "At some point we need to discuss your future care needs and how that should be addressed".
She said Like what? And I said "You have a progressive brain disease and things will eventually need to be addressed", she said What??? So I said "You have dementia"...
That was it. Kicked out again. We left. Next morning I get a text that she's "Obviously not coming over for football or any day since me living close seems to be a problem for you. I will figure out what to do about it. Do not use the word dementia to me again. I talked to my neurologist last summer who took care of me after a stroke and I'm aware I have some memory problems."
I never texted her back. She's going to my sister's for Christmas and leaves tomorrow. My husband said he'll drive her himself.
What did I do that was so wrong? I'm so sick of dealing with this woman. I talked to my sister yesterday and my sister told me she thinks my mom should be in assisted living NOW, and that she was going to try and talk to her about it over/right after Christmas. She said she wouldn't use the word dementia, but stress that my mom is not happy here. We both know she won't be happy anywhere, and I warned my sister the talk might go bad fast. My sister said so what? Is mummy being mad anything new?
It never ends.
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We have a woman at the Memory Care where I work who's allowed to come into the lobby to torture the receptionists and visitors because she's 'high functioning dementia'..............has zero short term memory, zero tact, zero cares about anyone or anything but herself, but it's OUR job to babysit her and to keep her 'distracted' all day long. Believe it or not. She 'does not have dementia', by the way. Yep. She's the only person there, in fact, who does not have dementia. So, when she's carrying on about the others and asking "Oh what's wrong with her?" and asking the visitors "why is your mother acting so stupid?", we have to tell her that they suffer from dementia. She then reminds us that SHE does not have dementia, blah blah blah. She's so 'lucky' to be in 'such good shape', not like 'the other poor souls' who live in THE SAME FACILITY SHE DOES.
It's exhausting trying to deal with a dementia sufferer who refuses to believe they have the disease, yet have no problem torturing others with it all day long.
Needless to say, you did nothing wrong. People like your mother make sure that nobody in their world EVER does anything RIGHT, that's all. They live to complain and make others miserable. It's their lot in life. And I guess it's our lot in life to figure out ways to deal with them that doesn't put US in a rubber room.
The sooner you & your sister can figure out how to get your mother into Assisted Living, the better. While it doesn't let you off the hook to have her in AL, it DOES cut down your involvement and one-on-one care somewhat. I still have to deal with all of my mother's chronic, non-stop drama & BS in Memory Care AL, but it's on MY terms now, not hers. She pays others handsomely to deal with it the other 23-1/2 hrs each day.
Good luck.
To bring something up that is known to BOTH of you to be unpleasant to talk about, and then refuse to talk about it is torture pure and simple. It happened accidentally, but happened through your husband trying to protect everyone but speaking for you. Then it all went to heck in a handbasket.
I would suggest this. What is going to happen will happen. And what will have to be done about it will have to be done about it. But until then, step away and try to have good quality times with one another.
How about this. "Mom. We are here. When you need help deciding or planning, and WANT our help, call us. We love you and we will ALWAYS be here for you." ??????? Then, you know, fate, life will happen. Perhaps your Mom will need you to step in and take control and perhaps she will have dementia so severe she cannot act for herself. But until then, unless you want your last quality time together made a nightmare, just don't go there.
And you know your Sis, bless her heart, is kinda right. We are who we are. It's unusual that we change.
Just move back from her a bit while you have that luxury and that option. Get on with your OWN good life. I know the worry will be there. Trust me I know ALL ABOUT worry. I don't even bother to say "anxiety" anymore. I pretty much just go to existential dread.
I wish you joy in the holidays. Hugs out to you. No one ever really means it to "go wrong". Just let it go.
And you're so right. While we are here, it just "never ends". :)
Secondly, you are very fond of saying how hard it is for the old folks...........well it's pretty hard for us younger folks who are forced to DEAL with all the drama the old folks put ONTO us 24/7 as well!! It's not so pleasant a time for the old folks? Why not? I know lots of old folks who are grateful to have GOTTEN to BE old folks! Who treasure each day as a gift rather than plot & plan how to make their children's lives a torture chamber!
And finally, the 'justs'.........there are NO 'justs' when it comes to caring for our parents. There is no 'just' let it go. Or 'just' step back. To use the word 'just' is to minimize the pain we are suffering, in my opinion. It's like telling the old folks to 'just' get over it already.
"Most folks have what is sometimes thought of as a reservoir of good feelings, self esteem and positive self regard. Some folks term this "narcissistic supply". We get this from being the center of the universe as babies, from out parents and loved ones attending to our needs and gaining positive feedback from the world about our actions and beingness.
Some people, when through genetic predisposition, biology, environment or all three (the science is still out on this) develop an unfillable wound; they lack that narcissistic supply, for some reason.
They spend their lives searching for enough "stuff"--attention, wealth, power and the like to fill up the hole and at the same time, acting in such a demeaning and belittling way towards others so that they almost guarantee that they can't get their needs for reassurance met.
I'm oversimplifying. But you need to understand, Karsten, that YOU didn't cause the hurt and NO AMOUNT OF SAYING YES will fix what is lacking in your mom.
You don't "wound her to her core" when you say no. When you say no, you are actually helping her by assuring her that there are limits out there and that her neediness is not going to consume her.
Even though she is perversely nasty to you when you say no, that grateful infant inside her is actually reassured by it."
It's NOT you.
Limit contact. Wait for her doc to discuss on January 4th. Don't invite her. If you go over, get up the MINUTE she gets nasty. Don't engage.
Nothing you did wrong.
Wrong you did not.
Wrong not you did.
Yes, I'm channeling Yoda because we're taking the nieces and nephews to see the new Star Warns movie for their Christmas present.
Sometimes we have to call things by their name. That your mother refuses demonstrates that she remains in denial. My FIL has used the word dementia about himself, and I suppose that wasn't an easy thing for him.
Enjoy your husband and your Christmas, Exhausted. Do nothing until the New Year; there is no urgency in your mother's situation.
Your sister understands your mother. Get a game plan together in the New Year. Once you and your sister have decided on an assisted living, support one another to execute that plan.
I urge you and your sister to have "the talk" together and show your mother a unified front. And be prepared to have "the talk" multiple times.
It will take a lot of balls rolling but at least some are starting to roll. I feel similar to having recently got her PC doctor more involved so I can be less involved. I need to keep reminding myself that this will be a process.
Thanks for the cute poem and enjoy the movie!
If your mother is in fact diagnosed as experiencing cognitive failure/loss, her “future” is already distorted. From the dialogue that you have reconstructed here, it seems that you may still have some expectations that some of her personal comments are not at present being impacted by dementia. I have found that kind of situation to be unlikely.
Talking to a person who is suffering a “progressive brain disease” about the effects of having a “progressive brain disease” may seem like a good idea without actually having much point, because however capable she may seem otherwise, every aspect of her life is now changing BECAUSE of her neurological condition.
Her moods, her instincts, her abilities, her personality quirks, all changing. Awful for her, awful for those who love her.
It always required a mental shift for ME when one of my loved ones started to have cognitive issues, because I would expect the “code” of communication to change. Your mom might have chosen another word to be reactive to, but she’s chosen the word “dementia”. If/when she needs AL, why bother to attempt to “discuss” the details with her when both you and your sister know that you will be walking a dangerous path.
“Not be happy” in AL is part of the territory. Being SAFE and PHYSICALLY MANAGED AND CARED FOR with kindness and compassion are obligatory. You cannot manage “happy”- NO ONE CAN.
Hopes that you are able to find a level and style of interaction for works for both mom and also for her caregivers.
Personality.... nope. In fact I sometimes wonder when or if that will ever change? If she started to be pleasant, nice, accommodating I'd probably have her evaluated for another stroke.
She didn't want to hear the word dementia, but the way she goaded me into it, I've seen her do that my entire life.
Your mom is crotchety, so is my MIL, so I get it. Some days I can let it roll off, and other days . . . . I also say things I shouldn't. MIL sits at home and watches tv. Gets out one afternoon a week with me. There are days that I wonder if her being mean and seeming to try to pick fights, is just entertainment for her?? Unfortunately, she's pretty good at pushing buttons!! Hopefully your sister can make some progress -- fingers crossed!
That's true at any age. My mom has always been difficult at every age. And I know seniors who are very pleasant to be around.
The reality is, at some point my mother's future care needs do need to be discussed with her.
I'd be thrilled (and shocked) if my sister can convince her that taking part in finding senior living arrangements now would be much better for her than the current path that she is on.
I remember once my FIL got angry at my Sister in law who reminded him that his doctor had told him not to use salt (he was in kidney failure and had the beginnings of dementia).
FIL looked sternly at SIL and said "the doctor told me not to use salt; he did NOT say not to season my food".
It's amazing, sad, funny, heartbreaking and pathetic what the broken brain hears.
You can't fix this. If your sister is able to talk mom around (mom, you're so unhappy, Piper is being mean to you, here is a lovely AL) GO FOR IT. It doesn't matter HOW it gets done, right?
The problem with my sister having a talk is I know my mother. She has no intention of going anywhere. These tantrums are normal for her. It's not dementia driving it, the dementia just makes things more nonsensical.
"Since me living close seems to be a problem for you" was the guilt inducer and she's waiting for me to somehow take responsibility for her tantrum and move past it, again. I'm not going to do it. I'm not even going to initiate contact.
Have you ever heard this, it fits my mom to a tee.
A Narcissist's Prayer
That didn't happen.
And if it did, it wasn't that bad.
And if it was, that's not a big deal.
And if it is, that's not my fault.
And if it was, I didn't mean it.
And if I did...
You deserved it.