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So this is my first time reaching out for this. We have been dealing with my grandmother’s Lewy body dementia for a few years now, and I used to work for a state ran facility with adults with dual diagnoses. I’m not unaware of dealing with someone with a true diagnosis but I don’t really know about the warning signs.


From what I can remember, dementia is not genetic correct? But my mother has been acting EXTREMELY off for the past year. I know she’s stressed dealing with my grandmother some times, but she is not acting like herself at all.


She has become extremely obsessed with politics. She stopped working jobs, she stopped cleaning her house and her yard, and she rarely gets out of the house.


Today it made me realize that it might be something else because she told she has been having secret conversations with politicians. She is an avid user of twitter, and it seems like that’s the only way she talks to people outside our family. And she watches all political shows non stop. I live four hours away, I have two children and just turned 30, and got divorced about a year ago. So I haven’t been around as much as I used to.


She tells me she is depressed, I’ve given her some natural supplements, she has gone to the doctor and got antidepressants and sleep aides but I don’t think they know this side of her.


When should I start to worry?

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Probably now, I would think. Since mom has literally stopped doing everything she once did in favor of obsessing about everything political 24/7, that constitutes a problem in my mind. Maybe it's not dementia but more OCD/anxiety related, since she's caregiving your grandma with LBD. That's a stressful environment, so perhaps your mom is responding to it in this manner, who knows? Can you get down to her for a visit and accompany her to the doctor? I know for a fact my mother "forgets" to tell her doctor about ALL the symptoms she experiences that may suggest mental issues. Or, if your mom would agree to releasing her HIPAA rights, you can have a phone consultation instead.
Best of luck!
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Your mother has become a recluse and has stopped caring about anything but politics, and you say she is having conversations with people who aren’t there. If I were you, I would write a letter detailing her behavior to her doctor without her knowledge. She needs to be seen for a complete physical and an evaluation. People can have very severe reactions to stress. We all handle it differently. If Mom has no hands-on help with Grandma, that makes it worse. Make sure you ask the doctor if these supplements you’ve given her could be having a reaction with her meds. Some do.

Good luck finding an answer. Come back and let us know how she’s doing.
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They "say" Lewy's is one of the Dementias in which they have no real data on whether it might be familial, but I will say that Lewy's is one of the Dementias (my brother recently diagnosed with a probably early Lewy's) that is more "newly diagnosed". Since Robin Williams most people have heard of it. Before, not so much.
Lewy's is unique in some of its hallucinations, and for my brother diagnosis is by his telling of exactly what his hallucinations are like. There can also be a loss of the sense of smell, a changed gait and balance. All of which he has.
I think that you shouldn't let fear make you jump to conclusions right now.
Do know that should things worsen or continue, there CAN be testing. But in all truth, just now, our country is ENTIRELY obsessed with Politics on one side or the other. And you admit that there is stress. I have an anxiety disorder to the extent that when things aren't going smoothly, I am not in my OCD dreamland of good order all around me, I can descend into something quite unrecognizable. I can't see, I can't hear, I can't multitask, and I laser focus on bizarre stuff. Do know there could be some anxiety disorder from all the stress.
Take a wait and see sort of attitude. Make a diary of things that really disturb you. Find some quiet zen things you can do together that might help. Watch a totally fun romantic movie or something.
Wishing you the best.
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Now - if she has been to the Dr and not told them about this then although things are not always hereditary is sound like an appointment to have a talk with a psychiatrist (pre warned on her behaviour) would be useful.
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Think now is the time. Would it be possible for you to attend the appointment with her? Could she be severely depressed, stressed out from caregiving, to the point that she just doesn't care about herself anymore only her LO. Has anyone else been helping her out, when was the last time SHE had time to herself? Caregiving is NOT a cakewalk, it's hard demanding work both physically and mentally, especially if there is no support or break for the caregiver, I know, I live it daily. At least DH will lend a hand around the house, with laundry, basic chores that would take more time than hours in a day for me to accomplish when added to caregiving. Brunt of MIL caring falls on my shoulders which is fine, but wish other family members would help out a bit. I can't imagine her needing to do all, be all, by herself she just may be overwhelmed, overtired, severely stressed, and depressed. On the other hand something medical maybe going on. Is she taking care of herself or like many here, we take a back seat to our own care, wants, and needs in favor of our LO needs and wants. Many a doctor or dentist appointment have been put off or rescheduled to the point of just canceling altogether for the caregiver. Many caregivers tend to pass before the LO due to stress related issues that effect their health and wellbeing. When was the last time this lady was given quality time off to recharge and relax? The caregiver is often overlooked, more like a fixture than a person, gram doing fine and no one (those who live close enough to actually help) has to actually interrupt their lives and help out, going their merry way, enjoying life, going on vacations, avoiding any responsibility for anyone but themselves. It is what it is. You've been thru a very stressful time lately yourself and are trying to make a new life for you, coming to terms with what your new normal is. Living 4 hours away from her must be frustrating and stressful for you when trying to help make sense of the situation there. Do you have other siblings or family members that could step up to assist? Check with her local senior services center to see what can be done to help them out. Usually they have people who volunteer their time to cut grass, trimming bushes, snow removal, some basic handyman work. They are also a good resource for information about other programs available to help out. Best of luck to you and yours,
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Hi Anne17, I was living with my mom (and dad who was gone alot)and I
noticed she wasn't quite right. Watching political news all morning and saying she had no time to do her art, following me around (shadowing) in morning when I'm trying to get ready for work, falling alot, repeating things constantly, talking nonstop without a pause, etc. Fast forward 1 to 2 years, we finally found out that she had a slow growing cancer that was also causing dementia. Didn't get her checked sooner my dad refused to believe anything was wrong. She eventually passed away from that but after a good year of dementia hell. Document, get your mom to a doctor, really explain or give them your recording of the things that are not normal and she never did before. Best of luck.
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MAYDAY Aug 2019
My friend's MIL had to get into 3 car wrecks within a month before anyone checked her brain. Very quick tumor, she passed away within 4 months.
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I don't hear about people having their carotid arteries checked, the main vein to the brain...

It's kinda important. I need to get mine checked. If the brain isn't getting enough oxygen... we can get kind of wacky.

UTI's do the same thing.
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If you are 30, how old is your Mum? Could she be going through menopause? It can wreck havoc on us women, including some of the things you have mentioned your Mum going through.

She needs to have a thorough work up with her doctor to see what is contributing to her changed behaviours.
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Takincare Aug 2019
Hot flashes in the middle of the night were the worse!🥵
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I hope Anne hasn't gone away never to return.

Anne's mother has been "dealing with" Anne's grandmother, who has Lewy Body dementia, for "some years now."

Anne knows that her mother is "stressed."

I have to say that my first thought would not be some inherited form of dementia, or any other organic disease come to that, but that after years of coping with grandma Anne's mother's depression is now consuming her. The obsession with politics is a form of hiding. She needs to escape, she can't escape, so she withdraws into this virtual interior world.

So: what are grandma's care needs, what is the plan to meet them, how do we get mother out of there before she's actually fit to be tied?
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Takincare Aug 2019
As usual, very clear and to the point. I agree if responsibility of taking care of gram is negated, her mom will have time to destress and deal with HER issues, relax and regroup. A good therapist for mom would help recover from this or it may find if there is something more bothering her than she is saying.
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Sounds like paranoia and maybe delusions. Not sure what is causing this - stress, lack of sleep, medication interactions, imbalances in electrolytes, disease, brain injury...

Definitely take her to the doctor and let him/her know of your concerns. Take a list of medications your mom is taking, including natural supplements and vitamins.
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Politics is a subject dear to my heart. I used to spend a lot of time on Twitter. Twitter can be addictive, ESPECIALLY political Twitter, which at times can be a cesspool but it still delivers those dopamine hits as you read about every latest thing that makes you happy/angry. If she is talking about US politics, that’s not going to end there anytime soon, since we are approaching an election year.

I’m guessing that it’s her escape from a real life that doesn’t have too much positive stimulation, or too many people, in it. But the “private conversations” bit is worrying, unless she’s talking about the text messages that political committees send in a politician’s name. I would probably tell her doctor in confidence.

I’m sorry to hear about this. Twitter can make vulnerable people quite disturbed; people say things there that they would never say in real life.

Is she seeing a psychiatrist or a general practitioner for her meds? In my experience it makes a difference. I know you are very worried, but she is lucky to have you to confide in about this. A year is too long, though. Talk to her doctor if you know who that doctor is. And let her know that, because you love her, you are concerned about her.

Hugs.
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"...she told she has been having secret conversations with politicians. She is an avid user of twitter, and it seems like that’s the only way she talks to people outside our family..." She may be messaging with people on Twitter. She may find the anonymity of Twitter appealing. Do you know her Twitter handle? Can you follow her on Twitter?

Yes she seems obsessive but what makes you say she's paranoid?

For two years+ my FIL was obsessed with the Weather Channel. He followed every single possible weather disaster as it unfolded. He told me things like "there's a wave off the coast of Africa and it may turn into a hurricane" and he would watch and watch and watch. He then went into a political phase, which lasted another two years starting around the 2016 election.

Do you have durable power of attorney yet?
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It IS possible that your mother has dementia. "Having secret conversations with politicians" is not normal behavior. Please see that she gets to a neurologist.
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Could I just make this comment: my life became much saner when I got rid of the television.  There was a time when people like Walter Cronkite, Ed Murrow, etc. gave the news - but not in this day and age. It is all ratings driven entertainment.  I've found other sources of contemporary affairs comment, like Christian Science Monitor, LA Times, Tomdispatch.  I guarantee Fox News will drive a saint to distraction.
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DizzyBritches Sep 2019
Funny, I feel that way about CNN.
Fox doesn’t bother me. But I don’t watch it all day long, just during prime time, and after Bret Baier, they are all opinion shows, not straight news, and they make no bones about it.
All TV news programming is biased one way or the other, except maybe for CSPAN, and that puts me to sleep - it’s like watching golf, except the golfers actually accomplish things.
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The best thing to do - if you can make it happen - would be for your mom to have a complete check up with her doctor. Go with her if you can and mention some of the things that are alarming you about her behavior - either in front of her or aside, whatever you feel will be most effective. There are several conditions that could have a bearing on the way she is currently behaving. It may be something completely treatable. Part of the exam should be a mini mental status test. If she can't pass that, you'll know for certain that something is wrong.
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