And the Academy Award goes to... Pretender
I am now an accomplished actress, putting on the best show everyday. Pretending that I am fine with choices my husband makes when we watch T.V., acting like I am happy and smiling at my husband when he makes certain comments. Like that line from the song, Smile though your heart is breaking.
In order to keep my husband in a happy, relaxed mood I have to act like everything is okay. You've heard of, Fake it till you make it. Guess I'm hoping if I smile the warm feelings will follow.
I've lost myself; who am I now and gee, it was such a fast journey to get to this place where I'm a new person I hardly recognize sometimes.
Can I just say I miss Me, I miss Us.
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@kartwk Please call the heat pump people, describe the situation and ask them only to come if you call. He won't remember or you can tell him they're very busy.
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1 Reaction@jatonlouise, you are so articulate and describe your experiences so well. Do you know there are drugs now that can help people if cognitive decline is found in the early stages?
I just searched and found this:
Recent advancements in Alzheimer's treatment include drugs like lecanemab and donanemab, which have been approved to slow the progression of early Alzheimer's disease by targeting amyloid plaques in the brain. These treatments can potentially delay the onset of symptoms if administered in the early stages of the disease.
Alzheimer's Association ScienceDaily
You can probably find more out at the Alzheimer's Association website. I'm not sure if those drugs are effective for other forms of dementia. Have you been diagnosed yet?
My husband is beyond reminding himself with lists. I do write him notes to tell him where I am. He keeps them in his pocket and remembers he has them vs. looking at the whiteboard on the refrigerator where we also write things down. The rest of the time I give him verbal cues for what he needs to do: get dressed, work on a puzzle, brush your teeth, take your pills, etc. He just started washing the dishes without prompting!
He was in Adult Care for six weeks, but got discharged because he wasn't manageable. He tried to escape often, wouldn't' participate in any games or activities, was rude and aggressive to staff and participants, and constantly demanded food. I think it was too much like kindergarten for him. There were two days where he stayed for the amount of time he was supposed to, the rest of the time I got those dreaded phone calls to pick him up early because he was done with it.
I had a friend in graduate school who lived with a man who drank. One night he urinated in their closet! Reminded me of the story you told about your Aunt VertaLee. Moral of the story? Don't drink too much if you wear nice shoes or only wear old shoes to a party where you intend to over imbibe.
Thank you for telling us your great stories and how life is for you, @jatonlouise. Best wishes for the New Year!
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3 Reactions@marketlink
Thank you for posting this because I was and am feeling alone and overwhelmed by his changes. I am sure as I go through this I will get better and better at handling him and my emotions, at least I hope so.
Today we watched Pres. Trump's press conference on Venezuela. The President happened to mention something about not being happy with Putin. H. turns to me and says; "Putin just said he isn't happy with Russia". At first I was confused about what he was talking about, but realized he was trying to say that Trump wasn't happy with Putin.
I have been having problems getting a diagnosis for him. The problem I mentioned about is becoming more and more frequent and sometimes I just don't have a clue about what he is talking about. Will this help in getting him diagnosed if I keep a record?
I know we all flub our words occasionally, but this is becoming more and more often with him. He may get the basic gest of something but can't keep the players straight.
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4 Reactions@jatonlouise I strongly suggest that you only put personal info like your phone number in a private message. This site is public and no one wants your phone number to go public, too. A scammer or thief could cause you trouble. I’ll ask a moderator to remove your number.
@kartwk
Hello: the detailed notes I keep about my husband's behaviors really help the Neuro Doc with their comprehensive diagnosis (paired with three hours of cognitive testing, baseline in 2024 and again in '25). They only see you in their office for a short while and ask a lot of questions, so the info you provide (since you're with him 24/7 and know him better than anyone) proves invaluable.
The diagnosis won't change the outcome, however it will help with resources.
Caution though: once he has a diagnosis you may want the Doc to write a note for DMV that he can't drive anymore. You will be held liable if he drives, injures person/property and you knew of his diagnosis and still let him drive.
Keep checking in and we'll support each other. 🫂
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1 Reaction@kartwk
I am now in Stage 8, having lost my DH in July, 2025. I do remember trying to understand what he was talking about and wondering how to respond. I finally came to a point where I discovered explaining reality and trying to help him understand what was happening was useless, even more confusing for him. I had a standard reply ready at all times. "Go figure" "Unbelievable" "Wow" "I don't know " were just a few. Any response would do. If I tried correcting him he thought I was arguing with him. I missed the deep conversations we used to have but came to realize that was in the past.
I hope this helps. Every situation is different but I want you to know you're not alone.
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5 Reactions@becsbuddy Thanks for pointing that out and doing what you can do on your end. I generally don't (intentionally -- but who knows what whacky nonsense I may get into with the little fun tricks Mr Parkinson decides to play on me, maybe he thinks it's great fun to shoot a huge dose of novacaine on my teflon-coated brain. I nurture fantasies of the ways I might let him know of my dispIeasure with his shenanigans. He's been lnown to do things like put my phone in my pocket (which I never remember to check snd don't rember hsving put it there).
my I am curious as to hiw my number got there. I have it on my personal e- mail but I normally use just this back and forth messaging rather than my actual e- mail.
The rich irony of this miss-srep is that I spent the last 20 years of my work life hip- deep in infosec. I was a Certified Information Sytstem Security Professional and a Certified Imformation Security Manager and focused on bringing the government's info systems into compliance with the Federal Information Systems Modernization Act and with all the NIST SP-800 standards.
I vacillatte betweek giving my OCD full range and tying down every single security control known to man ( and woman) and being cavaliere about it, hoping that my info is too boring to interest anyone. And after Mr. Musk and his Merry Muskettes, those arrogant, pimpled- faced little twits, ran through the government's systems like a ragtag bunch of rabid squerrills on meth using a broken weed whacker they pulled out of someone's trash, taking every byte of personal data of everyone who has done so much as buy a single stamp , it feels like that horse has left the barn (and those litle brats may well have taken the horse with them anyway.
But I digress...Thank you again, and if tou have any idea about howe I managed to share my phone number ( so I can fix tge root cause rather than desling with it onesie-twosie basis, I would be most grateful. I'm growing increasingly stingy about my time vecause some things might require a horridly huge percentage of my remaining time on the planet --an hour for young folks is but a pittance of their remaining time, but it is a largish chunk of time for octogenarians.
In the meanwhile perhaps I ccan taunt the hackers with this:
Here are my phone numbers; some assembly may be required:
Remember this : hackers can get the death penalty in China and I have a high level of confidence that even the most fervid activist who objects to the death penalty would merrily make an exception for hackers. ( Be careful - all of the digits found below could be arranged to be President Xi's number. Wouldn't that be fun!?)
Toodles...
295-1#23-46-&80#]666]8Oo0zl
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4 Reactions@kartwk
I’m so sorry you are going through this too. It’s taken me 2 years to get a full diagnosis (vascular deterioration in the brain in areas affecting executive functioning). It’s still at the mild to moderate stage but my hubby has lost empathy and the ability to determine what someone else is feeling. He sometimes laughs when a family member gets sick or he gets angry when I express I am hurting. It’s hard not to take it personally.
The good thing about getting a diagnosis was it proved to me I wasn’t crazy and over reacting to everything. We started with a good neuro physiologist who diagnosed him with depression and then suggested a memory test. She diagnosed him with MCI. We then went on to see specialists at a Center for active aging and they recommended brain scans. This showed the vascular problem. I would definitely start keeping notes if you can. Like everyone else has said, it helps the doctors make a diagnosis and recommend proper testing. It can also help for you to look at your notes when you think you are imagining things.
It is a lonely journey but I try to reach out to friends and I have a Counsellor whose shoulder I can cry on. I have 2 wonderful adult daughters but they are busy parents and I hate to lean on them too much at this stage. Please reach out if you have more questions or just need to talk. Big hugs.
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4 Reactions@jehjeh I am sorry for your loss.
I know what you mean and I am finding out that any semblance of trying to correct him starts an argument which does not add anything to my day.
He did this twice this morning at breakfast and I just let it go and mumbled my agreement even though on the one I had no idea what he was talking about.
It is going to be a long rough road. Getting him anywhere near a neurologist is going to be a major thing. There is nothing wrong with him, according to him. I am the one with the problem.
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4 ReactionsThank you - that makes lots of sense. Sadly, I think our PCP just writes
this stuff with him off, you know, getting old. And I think that happens
with a lot of older folk.
On another issue I had that lack of telling you about things when my Mother
was in a nursing home. They would call my Dad and tell him she was
refusing to eat, but that was it. No one, not even her Doc. told Dad that
people do this when their body is starting to go. Not sure how to explain
that but I think you know what I mean. No one brought up hospice or end of
life or anything. They had my Dad fluttering around bringing her
strawberry shakes and trying to entice her to eat, which she would
eventually do until the next time.
The only person who brought it up to me was her heart doctor after she was
admitted to hospital. He took the time to explain to me that no matter
what any one did etc., her heart was worn out and not going to get any
better and recommended palliative care.
That was tough on Dad to see her in a hospital room but no medical
equipment around. It kind of freaked him out but I explained to him the
difference in what was happening and he approved. A nurse showed me, and I
showed Dad how to take a wet cloth, or piece of ice and moisten her lips.
You see, all this time she was not talking, opening her eyes, etc.
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6 Reactions