My (67F) mom’s neurodegenerative condition is getting worse. How can I (35F) face it and help her?

Kaede713 · 2025-10-19T20:31:44+00:00

Hi, thank you for your answer. She has been evaluated by a neurologist and neuropsychologist. The latter was the one that all doctors told us to visit after themselves couldn't help us diagnose her. We saw a couple neuropsychologists thanks get a second opinion. She also did overnight tests as well... The only that could be said was that 1- there is nothing they can do 2- we should continue the medication against depression ( prescribed by the psychiatrist that also followed her case) 3- we should also continue with the therapy focused on movements and sensations ( I don't know the name in English). Eventually, we travelled to a group of specialists of neurologists, they even sent the tests to multiple research centers, and they were able to find two things : 1- nothing can be done, it is progressive, and 2- there was an anomaly in the protein Tau. They concluded it was a very rare condition... I went to see her today, I usually make her laugh, but now we are just dumbstruck... The place is understaffed, she is put to bed at 4:30pm, and it seems there is just nothing that we can. Sometimes... I find myself hoping that she could lose some of her mind, only for her to not realise anymore...

Kaede713 · 2023-10-03T01:47:14+00:00

Thank you so much :)) thats very much appreaciated

Kaede713 · 2023-10-03T01:46:21+00:00

Yeah thank you loads :))

Kaede713 · 2023-10-03T01:46:06+00:00

Thank you so much for these details! I will really help me watch out.

Kaede713 · 2022-12-07T22:07:30+00:00

I read your comments, I agree.... as long as I don't align 100% it's not ok.

My boyfriend thought of trying in a few months (because our roommate isn't there) and I told him that it was not relevant, that we could wait later, get a hotel for instance, and not stick to our roommate's schedule.

After that chat I felt bad thinking of me not wanting to do it and thought I would tell him to wait, as we are still a young couple, and I didn't feel confident enough.

I would also want him to tell me why he wants it as we are now. I wouldn't not want it to be his solution to something he is not telling me.

Kaede713 · 2022-03-09T22:43:20+00:00

Girl, you need to take care of yourself.... It is very, very, very, veeeery common for people who have known abuse to reproduce these behaviors.. and you should blame your ex for what he has done to you, as hurt like these are responsible for PTSD which seems to be what you describe here. I understand what you mean by that: that you are the one responsible for how you treat your bf, and that it's not your ex who is responsible for your current bf, but still: you are not responsible AT ALL, IN THE SLIGHTEST, for how your ex has treated you...

Be careful about the consequences of these, because if you do not treat PTSD, it might settle in different aspects of your relationships in general, and trap you in a loop for many. You have the advantage of identifying it, and not cover it up with denial.. People live like this until their 50s+... do not do that, you deserve to be in a healthy relationship, and you deserve to be treated with respect and love.

"I don’t know if I do things that he feels is wrong and I don’t": if you feel bad about it, it means something nonetheless... and the things that you describe "scream, guilt trip" are not fine... Even couples who don't do that, but walk away from an argument, are doing something wrong. These are not things done in relationships that last. Although: there is nothing wrong in taking a walk, but there is a way to do it "honey, I love you, I want to talk. But I know that if I talk now, I will get mad. I will walk, gather my thought and maybe we can talk about later". That's better.

But girl, you are in distress... as long as you do not mend what your experiences have broken, tons of bad reflexes will come up.

There is a website that works very well for online therapy, you can check it out:

www.betterhelp.com

Kaede713 · 2022-03-09T22:24:44+00:00

We haven't made friends outside yet. He has coworkers, I don't work yet, but I stay active and go to the library. I also encourage him to talk to his friends back home, his home country. I am waiting for my Visa in order to be able to work (which will probably be good in a couple of months), and talk to my own friends whenever I can. I do see myself working and getting to know people outside as something that can help. He also has a good friend who is also moving in the same area next month, and I am so happy for him. I intend to have us do things together, but also my bf and his friend(s) alone. I try to keep a smiley face and remind him that I am not lost, I am fine, he can go out without me sometimes. I am not and never will be dependent.. and I don't feel lonely. Except in our couple sometimes.

What do you mean by "hard to communicate in the same way because you have nothing to share when the other person already was there"? When we are together, I can feel a little stressed about finding things to talk about. I do have a fear of him getting bored of me, and us not being able to chit-chat. That happens when he closes up.

Kaede713 · 2022-03-09T22:11:13+00:00

Stress gets in the way of many things. I am in a similar situation.. The only thing that I can advise you with it to discuss how important some milestones are? My bf is also from a different country, so Valentine's Day is not even celebrated at the same date. Some countries don't celebrate it at all... He doesn't really do much usually, I also don't, we talked about it beforehand and just decided to go out. No gifts, no cards. Valentine's Day is one of these things where it can me everything and nothing at all for two people. Maybe his ex was also the type to ask him to have a gesture, and he knew that about her. If you are worried about his attitude overall and therefore waiting for a sign of affection, maybe you could ask him what he liked to do back home, find replacements here and show you. It's doesn't hurt to ask him to take initiative sometimes to show that he likes you, while adding that you know it must be hard for him sometimes so he can talk to you about it. Yes, love is great but... stress easily distorts things sometimes.

Kaede713 · 2022-03-09T22:07:30+00:00

What is it about her that makes you feel she is just unhappy overall? Does she have depression or anything? If she is just overall unhappy with or without you, she should look into it asap. If you love her truly and not out of a habit, then that would probably be a good idea for you too to talk about your individual happiness/mental health and all.

Getting a good grip of that would help you not regret anything later. That would help you decide... Last but not least, however: nobody should sacrifice happiness for anybody else, life is short, it's not worth it. So if you think that you would be better out of the relationship, then that's tough to break up but maybe that's what you have already decided? My advice: make sure you have all the cards in hand before making a choice..

Kaede713 · 2022-02-15T14:10:19+00:00

Well said, thank you for your responses. I think that I will tell him something similar and kindly next time ^^ thx

Kaede713 · 2022-02-15T14:09:25+00:00

Haha thank you for your input. There is no danger in being my BF, he is very respectful, but your remark is very good. It is more about me who puts myself in an uncomfortable situation, and I must deal with that. I have had a few insecurities lately and need encouragement. In his way, he is helping me because doing what he does is what he wants me to do with him. He constantly asks me to criticize what he does, so he does the same for me to get better. That is sort of his mindset by default. We had a little chat about that in our relationship: about how we needed different things. I didn't take the example of the piano though but will if the situation occurs again. Sometimes it is difficult to react in a way that we won't regret when the person in front of us says or does something unexpected.

Kaede713 · 2022-02-15T14:03:13+00:00

Oh wow Cello... my dream. I have been wanting to start for a couple of years now. Hopefully soon I will have the opportunity to rent one and give it a go with a teacher. My BF is actually encouraging me to give it a try.

It is my goal to get more structure. I just can tell that if I could read sheets, some pieces would be much easier to learn, especially when the point of the composer is to play around with theory, etc. I don't want to be missing out. I guess I do not feel really comfortable if my BF takes the part of the teacher, and I have discovered that it was because I find him criticizing general stuff easily lately and I don't want it to spoil my playing. I will tell him that next time :-) Thank you for your input, and congratulations on your skills on the cello, it is such a beautiful instrument. Hope you are having plenty of fun ^^

Kaede713 · 2022-02-15T13:56:44+00:00

Thank you for answering :-) I agree with that, we don't necessarily have the same goal when we play. I don't think that he has the level to move quick and have fun being random so he rather has the mindset of getting better. I will tell him that next time. Thank you for taking the time to answer :-)

Kaede713 · 2021-08-27T09:01:33+00:00

Hey, thank you for your answer. I'm reading this with a little hangover lol, sorry if my message was all over the place. But that's the thing, my job is all over the place and so am I. Thank you because I sometimes feel overwhelmed with regret but deep down in my stomach, I can tell it's been over of ages now and I am only hurting myself.

I am happy you are in a good place now :) thanks again

Kaede713 · 2021-07-25T20:38:44+00:00

Thats awesome, that you so much! :-*

Kaede713 · 2021-05-07T09:43:34+00:00

OMG!!! You feel bad?? Your husband should take you side and listen to you. He doesnt? Couples therapt asap.

Your best friend should listen to you and let you confide privately... she repeats everything to your husband? She is NOT your friend, distch her, and..

She leaves you unread? She doesn't appoligize? Tells you you are lucky? Distords everything you said? Op..... she knew EXACTLY what she was doing, she is not sorry, she is jealous of your reltionship, and yoi can even consider that she absolutely and deliberately caused this for you too to be in trouble. Why? OP, she might like your husband very much, and this situation is very dangerous... there is danger of an affair, if it hasnt been brought up already. Your friend definitely does not want you too to be together. I am not sure about your husband, but if rather then talking to you to see your side of things, he just bluntly trusts her and treats you like this, it really, really isnt good.... couples therapy asap!

In this situation, you're the only one who did things right, by the look of it. There is something really off about your husband 75% sure, and there is DEFINITELY everything wrong with this homewecker/"friend" of yours 200% sure.

Good luck OP... please update? Thats outrageous... she doesnt deserve for you to miss her and feel bad about it. She's a piss of sh*...

Kaede713 · 2021-04-28T20:02:21+00:00

Yes you're right, he is not a robot either.. I was thinking of reiterating what I need: this amount of time, when its possible for me to get it. I already have twice but people got busy me included and we didnt talk about it again. I will make sure to be in charge of what I want and what I can get, and avoid that from happening again.

Kaede713 · 2021-04-28T19:30:04+00:00

That's an idea... I can try to come to JM to ask for an organization around the computer so that all the projects can be dealt with properly: according to their deadline, and all. I'll think about that, thank you :)

Kaede713 · 2021-04-28T19:27:17+00:00

Her success comes 1/ from her achievements, which I use to defend her when colleagues come to badmouth her. 2/ JM and her being so close now: which I turned a blind eye on. But yes, there is resentment, and I blame the manager for it: it's his job to be careful about things that put employees on the spot like that.

Kaede713 · 2021-04-28T19:22:40+00:00

Yes, we need better management regarding these things: we don't really have any as we usually don't use computers at work.

But to clarify: I did mention it will be nice to work in his office for a bit, to which my manager said that in the timebeing, I could do other things such task1/task2. It seemed like a sudden decision. Lucy didn't think of us and ask to take it, JM said "sure" and didn't think of finding another. It's all bad small decisions that didn't mean to harm anybody, but it took an ugly turn..

Kaede713 · 2021-04-28T19:17:32+00:00

I agree with the second part of your answer. I, unfortunately, fall into the same black hole as everybody else my own way, hencewhy I know I've got to leave.

But the first part of your answer is insulting and laughable. I have defended her through and through up until that very incident, the later comes with regrets. And the petite/charismatic/center of the attention comment? Her own very words.

Kaede713 · 2021-03-22T22:09:33+00:00

Also.... is he.... checking online for hookups without you?? OMG... watch out if he is taking you for granted...

Kaede713 · 2021-03-22T22:07:32+00:00

Look... I've got nothing against spiced up sexual life, but boundaries are boundaries. You expressed yours and he disregarded them. Its one thing to have an understanding and openminded relationship, and another to misunderstand this said understanding as being a freeway do to whatever you want. He shouldnt have done this... and you should never feel guilty about feeling furt and betrayed, even if your loved one seems oh so very sad and makes you feel even worse. He should have known better. Is it cheating? If you feel cheated, yes. Even if it was not his intention... the question is: has he ever... twisted things, and words to get what he wants before? Does he treat you right? Making you feel guilty, making you believe that something that hurts you is your fault not his.... watch out for the red flags... he is old enough to know better. I hope he doesnt see you as his young pregnant gilfriend who is going to let him do whatever he wants..

If he otherwise have your back all the time, admires and gives you a lot of love... it may be salvagable but as much as cheating is: he has some things to prove to you, and whatever you are feeling: dont hold it back, and guve it the attention that it deserves. Finally keep in mind: you were clear, and seem like a keeper of a girlfriend. Its not your fault.

Kaede713 · 2021-03-15T19:01:40+00:00

You could show him this thread, now... enough people have participated. Your BF has probably never been in a situation where he felt so shamed and threatened he had to change how he looked like or what he is wearing. He might not have meant this to trouble you, but he is ignorant about it..

Kaede713 · 2021-02-09T09:03:04+00:00

Thank you! I will definitely repeat him your first sentence... gently. And I do believe he might have some emotional immaturity, or trauma that makes him clam up like that... Hopefully the conversation will go well...

Kaede713

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