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Pleasantly Demented...for how long?
M4P
Posted: Tuesday, December 10, 2019 4:57 PM
Joined: 7/26/2018
Posts: 11


My estranged husband, a college professor, was teaching until the week of Thanksgiving, after his students approached his Department Head expressing concerns about him:  he had showed the same movie in class more twice in a row, missed department meetings and forgot how to input the grades. He is highly functional: cooks for himself, reads (a lot), but his short-term memory is extremely poor, cannot understand the sequence of simple occurrences, and has trouble understanding information. His doctor said that highly intelligent people are able to mask the symptoms for a long time, which makes sense. He was diagnosed in 2017 at age 56. He does not seem to be agitated, sad or angry, he is very calm and seems to be almost content. When I brought this up to his doctor, she said that there is a term for this:  pleasantly demented.  He is going to move in with me in a  few weeks, and I am wondering about a timeline; is it true that EO advances faster than regular AD? How can I find things for him to do all day? He is a fit and youngish-looking man at 58. How long will he be able to drive? (He does not drive at night anymore). Our grown children are in college still and I work all day, plus I do have a serious relationship with someone who understands my situation and has offered his help and support. I guess that I am at a loss and just looking on some suggestions on how to help him.

Thank you.


Iris L.
Posted: Tuesday, December 10, 2019 7:28 PM
Joined: 12/15/2011
Posts: 16577


I disagree with the doctor.  If your ex-husband showed the same movie twice in a row to his class, missed department meetings, and forgot how to input grades, he is not masking symptoms; indeed, they are obvious.  Other people are observing his impairments.  He should be making plans for retirement, if he has the years, or long term disability.  Others will tell you more.  Also, pleasantly demented is a term that some people with dementia believe is offensive.

 

Iris L.


BadMoonRising
Posted: Wednesday, December 11, 2019 7:19 PM
Joined: 4/22/2017
Posts: 322


I agree with Iris. I believe the physician may have been commenting on your husband's prior ability to mask his symptoms. Those days are long gone. You asked how quickly persons with EO progress.  I can't answer that specific question but the study below suggests that people with greater Cognitive Reserve have an unusual progression of the disease. That is, the cognitive reserve enables them to function at a higher level for a longer period of time than those without the cognitive reserve, BUT once the reserve is depleted, the cognitive decline actually accelerates. Because your husband is a Professor, it is assumed that he has a high level of cognitive reserve. (Hence his prior ability to mask his symptoms.)

https://n.neurology.org/content/93/4/e334

"Among Aβ-positive individuals, greater CR related to attenuated clinical progression in predementia stages of AD, but accelerated cognitive decline after the onset of dementia."



M4P
Posted: Thursday, December 12, 2019 11:06 AM
Joined: 7/26/2018
Posts: 11


Thank you for your replies. Yes, when the doctor talked about him masking the illness, she was making reference to the time that he had been working after the diagnosis. We are in the process of getting him long term disability and he stopped working already. As for the term "pleasantly demented", the doctor used it to contrast it with other behaviors that people suffering of AD might exhibit, such as violence, agitation or depression, but thank you for letting me know that some people find that term offensive, I had no idea.

   


Michael Ellenbogen
Posted: Thursday, December 12, 2019 11:39 AM
Joined: 11/30/2011
Posts: 3422


Its okay for a doctor to use that term but I wish they did not. 


jfkoc
Posted: Thursday, December 12, 2019 12:43 PM
Joined: 12/4/2011
Posts: 18864


One thing you can do is to make certain his medical and financial affairs are in order. Additionally if there has been no formal diagnosis you can try for LTC insurance.
Iris L.
Posted: Thursday, December 12, 2019 12:56 PM
Joined: 12/15/2011
Posts: 16577


I don't think it is okay for a doctor to use that term.  Would a doctor say about a late stage cancer patient, "he is pleasantly terminal?"  Just because a PWD is not violent or agitated, that doesn't mean he is going through a pleasant experience.  Some people have used the term "gentle journey" to describe how some PWDs experience their illness.


The reason professionals don't recognize early stage signs is because they are looking for memory loss only.  Loss of judgement and loss of higher functions, such as mathematical functions, are significant signs of early dementia.  Thus a PWD can lose a significant amount of money in front of their family members, but no one understands this is due to dementia, not conscious risk-taking.


Iris L.


KawKaw
Posted: Thursday, December 12, 2019 7:17 PM
Joined: 11/22/2019
Posts: 291


Iris L. wrote:

I don't think it is okay for a doctor to use that term.  Would a doctor say about a late stage cancer patient, "he is pleasantly terminal?"  Just because a PWD is not violent or agitated, that doesn't mean he is going through a pleasant experience.  Some people have used the term "gentle journey" to describe how some PWDs experience their illness.


Iris L.


I agree.

"Pleasantly demented" seems to focus more on the experience of people around the PWD.  How pleasant so-and-so is...

"Gentle journey" seems more focused on the PWD.

Thank you for bringing up terminology, Iris.


Michael Ellenbogen
Posted: Thursday, December 12, 2019 7:22 PM
Joined: 11/30/2011
Posts: 3422


I was referring to the term “demented”


Iris L.
Posted: Thursday, December 12, 2019 8:46 PM
Joined: 12/15/2011
Posts: 16577


"Demented" is becoming obsolete.  Person-centered language is becoming more accepted.  Instead of "a demented person," a better way would be, "a person with dementia."  We all know what the older terms mean, but the newer terms allow for more dignity for the person affected.  


Iris


Michael Ellenbogen
Posted: Friday, December 13, 2019 6:53 AM
Joined: 11/30/2011
Posts: 3422


Sadly may doctors continue to use it in there language to speak to other medical staff. 


BadMoonRising
Posted: Friday, December 13, 2019 10:19 AM
Joined: 4/22/2017
Posts: 322


Maybe I'm in a pissy mood because my neurologist recently told me that I do not yet have dementia (yay!) but "based on your extreme blah blah blah (brain amyloid) we know where this is going." At her insistance, it looks like I will be turned over to the pros at Hopkins.

I speak bluntly and that's certainly not going to change. My father was demented and I will become demented. I'm owning it. At this point, pleasantly demented would be great, thank you very much!


Iris L.
Posted: Friday, December 13, 2019 2:16 PM
Joined: 12/15/2011
Posts: 16577


People who are affected should have the right to say how they will be described.

Iris


BadMoonRising
Posted: Friday, December 13, 2019 4:51 PM
Joined: 4/22/2017
Posts: 322


OTOH,  gentle journey?  I find that to be especially offensive.
Brezze23
Posted: Monday, December 16, 2019 4:46 PM
Joined: 9/7/2019
Posts: 39


Hi. Think about moving your ex with you. This disease  requires  a lot of love and sacrifice. Are you ready to give up your life as you know it? ECO.
JamesSonDad
Posted: Wednesday, December 18, 2019 12:06 PM
Joined: 4/29/2019
Posts: 27


I support the statement that you should carefully think about having our ex. move in with you. If it gets to be a problem you'll be burdened with finding a way to move him out.

I moved into an assisted living facility where my daughter is living. I even had a separate apartment. She clung to me and I moved out after a month. It's a tremendous load.  I'm across the street in my own apartment and we're both much better off.    


M4P
Posted: Thursday, December 26, 2019 8:25 PM
Joined: 7/26/2018
Posts: 11


I will move him in with me for now, well not that fast.  In a few days he is going to South America with one of our daughters (she is traveling with him but she is going for work). I have extended family and friends in that South American capital. There are so many people that love my ex dearly and are ready to spend time with him, take him to the beach (it's summer in the Southern hemisphere), take him out to eat, to DO things.  He is at  a stage where he can get confused but is highly functional (he is also fully bilingual, so he can communicate perfectly). He will be there until March, then he will come to stay with me until my being a caretaker interferes with my career or personal life. So, to answer your question, Brezze23 no I am neither ready nor can I afford to give up my life as I know it,  but I am ready to help him and support him in any way I can, but I know that when the time comes, he will have to be in a facility or we'll need to hire round-the-clock caretakers.