94 year old mother has Lewy Body Dementia. She lives with me. She fits her diagnosis to a tee. I deal with a lot of crazy things with her but when we go to the Dr she has sudden clarity that makes her appear much better than she is. Or if grandkids come to visit her she is a totally different person than what my husband and myself see on a daily basis. Does anyone else experience this type of behavior with LO?
Since appearances to narcs count as everything, it's understandable they'd be very, very good at show-timing.
Very frustrating and isolating for the caregiver who, because of their LO's showtiming, project a sense of indifference or not knowing what they're talking about.
2 - document by videoing several [like 5 +] incidents so dr can see what you deal with - just use your cell phone to do this & when she starts just let it go
3 - do more documentation & show family members - people of that age don't expect this will be documented & you have it for the dr & family
4 - when you are finished with the above then document some more because the more you have then the better off you will be - FYI just seem to start talking just as an outburst happens the set phone on side with video going even if only partial pix the audio will be on - then A.S.A.P. down load to another device so you have room on your cell phone for the next - make sure time & date are on it but even better get the news in background as that is a good time line outside your control
5 - welcome to the land of loved ones with dementia & there are many of us - you have done a good move in starting to get educated by those 'on the ground' who have been there before
From posts on this site, I now see that it is very common.
Neither has been technically dxed with dementia, but both have a degree of it. In both it shows itself as 'fake sweetener' but only for a few minutes. With my mother, she just loses the ability to keep track of what's going on. Kind of retreats into the past and muddles around trying to be 'normal'. There's no shame in being forgetful and aging, but she disdains those she knows who have 'lost it' with such venom. Sad, b/c she is as bad or worse than anyone she's talking about.
My MIL can talk coherently for about 10 minutes and then ALL of her conversations drift slowly but inexorably into the 'poor pitiful me' category, where she has to have totally sympathy for her horrid life, her horrid marriage, her ex-husband's horrid family....and I mean, EVERY SINGLE FLIPPIN TIME she talks to you. She has been this way as long as I have known her---it's much worse right now, but does that mean she has dementia or she's just a mean person? Who knows? Dh has given up, and I mean, GIVEN UP even attempting to have a relationship of any kind with her.
I told my mother over 10 weeks ago that I had cancer and she responded "Oh, well, your daddy will be so glad to see you." (daddy died 15 years ago). How does one respond to that? I said 'well, I'll say hi to him for you' and I left.
10+ weeks go by and I hear NOTHING from her. I'm half way through chemo and I have heard ... Not a peep. Suddenly she's calling me, acting all interested in my treatment, and I know why: she wants to be the person at Bingo who has the daughter dying of cancer. Didn't give her the satisfaction, I barely spoke to her and when I told her I am NOT dying, she seemed disappointed. Which I am sure she is.
She doesn't know how to use her phone so she has to get someone else to dial for her. I call screen and only return her calls if I feel like it.
Dementia is ugly and depressing. I know I will be there, one day. I just hope I am am a sweet crazy not a mean one. I don't think I can control that!
So grateful for you guys on this forum!!! Hugs to everyone
It takes a deeper interview to see dementia. I had to laugh because my doctor signed me up for Medicare Wellness and every year it's an extensive interview with a Wellness Nurse to determine my cognition. I'm 67 and I agreed to be signed up for this free service. Some of the stuff makes me laugh. Some is outdated and I tell them that too. "Draw a clock with a specific time on it" is no longer used due to digital clocks, lol.
But yes, anyone can fool a doctor for a few minutes.
Sometimes having guests or being on an outing whether adventurous or mundane can cause her to recess and interact very little. Other times she is as lively as a schoolgirl.
In my experience, dementia, any type, can come in ebbs and flows, but when the one afflicted with it is gently nudged to increase his or her engagement with the outside world or even an individual, it seems to be very beneficial.
My Mom is such an adult when around people! When its just her & I, she’s unable to do anything for herself & has major temper tantrums & I'm sure it’s all valid behavior for Lewey Body Dementia but again...when around other ppl including her grandchildren she’s Grandma and she is the adult!
Once, when she was still in a rehab facility, she was acting out badly & I asked her why she was acting this way? She told me ‘This is what they expect of me. This is how they expect me to act, right?’
That comment blew me away & I still don’t know what to make of all of this!
You are NOT ALONE!!
It is no reflection on you. It is part of the condition.
Dementia patients know there is something wrong, but can't figure it out. They try to protect their dignity by acting normal. In their minds they know they should know the answers to questions and learn how to wing the answers. It is one of the saddest things to watch. Now it is difficult for him to continue to hide his condition, but still works at it.
Try to be patient, try not to take it personally and don't beat yourself up with guilt or feeling foolish. It is no reflection on you. It is just part of the program... :(
With most patients, it's more like 'it takes a huge effort to act socially acceptable, and when the stranger has left I can relax'.
Social skills are often the last part of verbal interaction to disappear. I had a patient once who was nearly non-verbal with the womenfolk of family and staff, but whenever she heard a man's voice she would become charming, even flirtatious. Took a long time for her male primary care doctor to realize that she could no longer live alone -- he was so blinded by her charming joking around that he missed the confabulation.
Meanwhile she was leaving her apartment at 3 am to knock on the neighbor's doors and say 'they're not supposed to leave me alone, I don't know what to do, can you help me find my daughter' (the daughter lived in another state).
Even says “hi” and nods with a smile to the palative care team.
But looks pale and depressed otherwise.