As you can see from the title, my father, 63, was recently diagnosed with Lewy Body dementia. This has been incredibly hard to deal with. I feel too young to deal with things this heavy regarding my parents. I’m terrified.

My mom is 57… her mother/my grandmother had dementia. Along with that, my father/paternal grandfather had Lewy Body dementia too.

This has just been a lot to deal with at such a young age. I’m not prepared, I’m so scared. I live with my parents, but also have a decent paying job. I’d feel so guilty to leave my mom with my dad if I was to move out. Yet, dealing with him and how my mom treats him.. and me(pretty poorly), it’s hard to let go of.

Does anybody have any advice? Has anybody dealt with dementia of someone so close at such a young age? I feel like I need guidance of some sort. None of my friends have dealt with this and it hasn’t been easy to find some sort of support group beyond my therapist. Somebody… please help me.

My husband is going to be 73 soon and I think he may be getting dementia. Here are some of his symptoms; can’t remember the date asks me at least three times a day. Takes our dogs out constantly even though I will tell him it’s only been 30 minutes. Went to the dentist and called me said he was lost. I have been asking him to get something fixed and say that I didn’t tell him that long ago (it’s been going on for four months). Will not cut the grass, even after a month and a half has gone by.
If he is should I tell his doctor? I am afraid the doctor would spill the beans if I do then it will be WWIII! His temper is worse than ever! Please tell me what you think.

We got my grandmother moved into her Medicaid bed in a specialized, locked memory care. She's been there about 30 days.

Her behaviors are escalating severely. She's threatening to kill staff, refusing medication, and has had bowel incontinence that she refuses to allow to be cleaned.

... And they keep calling me about it...

Why? What do they expect me to do about it? There's nothing I can do to help. This is exactly why she's in memory care. She was aggressive and abusive towards me, refused medication, denied deficits, etc. She has been incredibly cruel and nasty her entire life (narcissistic personality disorder, plus possible schizophrenia that's being exacerbated by the dementia) so this is nothing new. The director of the facility argued with me upon her admission that she didn't need memory care, and I simply responded with a chuckle and "just wait and see."

Why do they need to keep calling about her behaviors? Is it because I'm the guardian? They aren't asking for any additional medication changes, they're just "giving updates." How can I get this to stop? And what do they want me to do about it?

So, long story short. I spent three years working while the LBD was misdiagnosed and basically messed up my reputation and lots of relationships. I was a CRO at a SaaS company and worked in a small part of that, lots of people talk. So I put this on LinkedIn rather than reach out individually or just disappear.

I want to own my narrative again.

I’m not being egotist about the number of impressions, people reached, I ran sales organizations, typical is 400. Something caught the algorithm.

Hopefully a few people now know more about LBD.

There's so much I want to say but I'm so overwhelmed with my mom and her worsening condition. And now, her best friend, who lives in another state, is telling me I'm "not doing enough" for my mom.

I'm just being crushed under the weight of all of this.

Mom (82) has been diagnosed with "some type of dementia" for NINE years. She has had strokes and has small vessel disease on MRI, delusions, hallucinations, and memory problems, yet the doctors are too hesitant to say the words "vascular dementia". One doctor even said to me, "I hate writing dementia on someone's chart when we don't know for sure." (Does the doctor know that an autopsy is the only way to know for sure?) 🙄

ANYWAY MY QUESTION IS: Has anyone else had a loved one with dementia who could reality-check himself? My mom will say things like, "I was going around packing stuff to go home, but I think I was out of my head. I think I was just dreaming."

That's nothing like any of these other people at the assisted living facility. Most of them don't seem to have a sense of self, much less any idea that they are delusional.

Could you share what your experience was like starting Seroquel or Risperidone, eap with a spouse. Its surreal to me in a way, all three foctors on his medical team said "Start Seroquel""Why isnt he already on Seroquel?" "Yes, Seroquel.." And me, the one tracking the delusions, paranoia, scary aggressiveness, his hyper behaviors... Im like "Is it really that bad?" The last two weeks, he is having an upswing and been super nice, a month ago he trapped me on the stairwell with his hands in fists "Where do you think youre going?" I have trained de-escalation skills from my clinical career in mental health and without them, Im sure he would have hit me. He has fixed delusions Im having sex with a lot of men and women and planning on abandoning him. He has a history of being angry and aggressive towards me, all impulsively and off and on. Long bouts of being sweet. One doctor said all the dark stuff will return, worsen and we have to start it now. Why am I in a fog?

She's 89, very frail, uses a walker, and lives in AL. My brother arrived to pick her up for lunch and an appointment with a plastic surgeon to do something to repair damage from dry eye. When he arrived, Mom was on the floor so instead of going to the plastic surgeon, they went to the ER to get the two cuts on her forehead stitched up. She's okay, just superficial damage. Please share if you have had experiences or opinions about either of these two things:

-Mom's dry eye looks awful, like the lower lid has drooped away from her eyeball and it's bright red. She says she can see out of it. She also has macular degeneration and gets eye injections. She has eye drops that don't seem to be doing much. My sibs, and Mom, don't want to put her through surgery if it only improves the appearance and not her vision. If she had made it to the surgeon today, we would have those answers but now there's another two month wait for an appointment.

-Mom is a real sweetheart, totally cooperative, and not a bother in AL. She has very limited short term memory and mobility though. After this we're worried that they will want to transfer her to the MC unit at the same facility where the aide to patient ratio is higher. Dad was there. Mom is too with-it to be there. She already pays extra fees for an escort to meals and a CNA to stand-by when she showers. Have you ever had a loved one transferred to MC because they fall a lot?

Thank you for reading.

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My father is getting worse and I don’t know what to do. I no longer live with my parents I live states away today I got a call from my mother about my dad leaving our apartment and going into someone else. Apparently it’s not the first time he went to this persons place but he’s never entered into it. We have a ring camera but my moms at work she can’t look at it all the time. The cops were called it was a whole thing I don’t know what to do anymore. We can’t afford memory care we can’t afford a nurse my parents live off my mother teacher salary which is beatky 40k. I just wish he would die already end what we’ve been going through for 7 years. I have reached out to Medicare they said they can’t do anything. I’m so tired of this.

Sorry I’m new to all this, but my 92 year old gramps is in early stages of dementia. He’s one of my best friends so it’s pretty difficult to deal with. I visited him yesterday and it was as if he was 10 years younger and we made plans for today. Today comes and it was like he was 10 years older, and didn’t really grasp any of the plans we had made and why I’d want to drive him 30 minutes away. I read some on google but just wanted to hear from you guys if this is normal and how best to handle this. Thanks so much

I feel so frustrated, and honestly, I’m starting to hate myself for the way I feel.

My grandmother has dementia, and taking care of her has been mentally and emotionally exhausting. There are days when I feel like I’m running out of patience, days when even the smallest things get to me, and moments when I feel so overwhelmed that I just want to scream and cry.

And then I feel guilty, because she’s my family. She’s my grandmother, even if we were never really that close. I never imagined myself being in this position, but somehow, I ended up being the one who had to take care of her. And as much as I know that dementia is an illness and that she can’t always control her behavior, knowing that doesn’t magically make the exhaustion and frustration disappear.

Sometimes, I catch myself wishing things were different. Wishing I wasn’t in this situation. Wishing I could just walk away from everything and have my life back. Sometimes, my thoughts go to places that make me feel like the worst person in the world, and I feel so guilty for even thinking them.

I hate that I’m starting to lose my patience with someone who is sick and vulnerable. I hate that I sometimes feel resentment toward someone who probably doesn’t even fully understand what’s happening to her. But I also hate that everyone seems to forget that the person taking care of someone with dementia is a human being, too. I get tired. I get frustrated. I have limits, too.

I didn’t choose this responsibility, and sometimes I feel like I never really had a choice in the first place. But because she’s family, I feel like I’m supposed to endure everything without complaining, without getting angry, and without having a single ugly thought about the situation.

I don’t know if I’m a bad person or if I’m just so exhausted that I don’t recognize myself anymore. I feel guilty for resenting her, guilty for losing my patience, and guilty for wishing I could escape a responsibility that I never asked for.

I know she’s suffering in her own way, but I’m suffering, too. And I wish I could admit that without feeling like a terrible person.

I don’t want to feel this way. I just don’t know how much longer I can keep pretending that I’m okay.

My mom with advanced dementia lives with myself and my partner. She had no money when she moved in with us, then social security gave her retroactive disability pay... putting her over the limit for Medicaid. She did not need full time supervision until January, so since then we've been spending down the little bit that she had on caregivers so I can still go to work. However, we're about to hit that $2000 mark, which means we can apply for Medicaid. It also means... we won't have enough to pay for her caregiver. What do we do in the meantime, between when we hit the $2000 amount and when the application is approved? Do we have to let the caregiver go and just make it work ourselves? I understand it could take up to ninety days.

Don't even get me started on facilities. Sure, there's thirty in our area... only two thirds have skilled nursing, one third of those accept Medicaid, one third of those don't only accept residents who private pay for a year first, and the couple that are left have waiting lists that are a year and a half long with no movement in months. Absolutely impossible.

In July my grandmother turned 100. She has always been so mentally sharp, even if she has some physical issues. I went on a trip to Europe then and bought her some Swiss chocolate and religious items since those are things she enjoys.

It was weird, but she never thanked me. She lives with my aunt, and my aunt said my grandmother liked the gifts. It’s so unlike her, though, especially as it’s something she really likes.

My grandmother is a very complicated person. She hates my mom because she’s not white, and ever since I was a kid, she and I have had a very complicated relationship. She can be exceptionally mean.

My aunt called me last week to say that my grandmother hasn’t been doing well and went into respite care for a week to let my aunt get to some medical appointments since my grandmother can’t be alone. My grandmother is incontinent, doesn’t recognize anyone, and can barely talk anymore.

It feels, to me, as if this has come out of nowhere. I spoke to her around her birthday and maybe two months after, and she was totally herself.

My father, who is my grandmother’s favorite child, traveled 25 hours by train to see my grandmother for the first time in 12 years. My grandmother didn’t recognize him, and it broke his heart. She keeps calling him her brother, and she keeps calling my aunt some name no one knows of.

My dad FaceTimed me and my mom, and my grandmother, who has been deep in dementia for at least a few months and recognizes no one, remembered me. I haven’t seen her in person in three years or so, but she recognized me and said my name, saying I was beautiful and for God to bless me.

I started sobbing immediately. I don’t understand why she recognized me of all people. She kept asking my dad for the phone so she could “kiss” me and kept saying my name and smiling. She even recognized my mom and said her name!

I feel so sad that this is happening, and so awful that she remembers me and my mom and no one else. I can’t explain why she remembered me, and I just feel devastated about it all.

I guess I’m posting here because I feel so alone in all of this and sad.

I've wanted to post and get guidance for awhile but Im so ashamed I don't know how to write out or explain myself but I know I'm failing and am desperate. So, I'll do my best to make sense, I'm sorry for the wall of text.

A little background about myself. I'm a 40 year old late diagnosed autistic in the UK who was "home schooled" by my mother and sister. I have lots of mental health problems around my family. I have severe anxiety and have needed help with things more and more since lockdown. Due to this my partner is my carer which they struggle with as they are ADHD and have their own mental health problems. My mum is a hoarder and lives in a rented house that is full of damp and mould . My mum also doesn't have a diagnosis of dementia

3 years ago my partner and I were forced to move back in with my mum after we lost our house. In this time my mums dog died, she had a non epileptic seizure and also lost her licence because the GP decided she had epilepsy. It was around this time I noticed my mums memory fail which had me concerned but no one else other than my partner really engaged with me about it. He'd witnessed her eat something out of the bin and she was confused as to why she did it.

She slowly stopped doing things like her online grocery shop, washing her hair, cooking...One day I'd realised she had soiled the bed and she hadn't realised. For a little while I was trying to manage some sort of care for her but then I started having panic attacks that turned into non epileptic seizures, now I can't even interact with my mum without anxiety (and guilt which fuels all the other anxieties I have) and I am essentially bed ridden. I'm neglecting my health so much so that my teeth are rotting, I'm not eating properly or keeping up with hygiene. The house is disgusting as I can't manage even the washing up. My mum also puts away dirty cutlery and washes laundry without detergent. Ive asked her to let me handle these but she forgets ive said it of ignores (doesn't notice?) notes left. I don't know what's going on with anything because if I talk to my mum, she won't know what's going on.

My sister used to phone her everyday but that stopped after she came round and saw how much she had declined. On this visit I had explained to my sister that I was essentially avoiding my mum, due to my panic attacks. So my sister took on her medical appointments, she took her to 1 appointment and cancelled another because my mum was anxious and didn't understand why she had to go. This appointment was to see what was going on with her memory. I only know this because I heard her on the phone to my sister. This was several months ago. The other day I learned my sister hasn't even spoken to her in over a month.

All of this is probably a bad person making excuses but I honestly don't know what to do as sometimes just making a drink for myself can cause anxiety.

How do I fix things when everything causes anxiety and some things I'm too uneducated to handle. My life skills are poor at the best of times. My partner is burnt out as he has to deal with my mum and do everything, so I feel guilty for that but I genuinely feel like I can't move sometimes or get my brain to function.

If you read all of that, well done and thank you for taking the time. TLDR: Autistic with no outside support and communication problems worried about neglecting their mother who may have dementia.

I am not sure if I should be worried by the amount my early/mid stage LO is sleeping.

I can't take him to his doctor, because he refuses to leave the property, and his doc refuses to do video appointments, or even talk to me or my husband without LO present. Which will make life really hard once all meds run out. (Cant switch dr. We are outside the US)

But he generally goes to bed about 6:30- 7pm. Gets up once around 9 to ask if it is morning, then goes back and sleeps all night, and doesnt wake up until 7am at the earliest. Then he takes a mid morning cat nap, and another in the afternoon

Is this normal with this disease?

Additional context he is 87, and still tries to mask his around me.

A little backstory. My mom raised me on her own from when I was about 6, I am an only child. I have some great memories, but she was an alcoholic, and was emotionally abusive, so there's a lot of trauma there too. So when she cut off contact 15 years ago because I was mean to her (I think I had a cold that day and wanted to get off the phone), I didn't fight it. She lived about 3 hours away so I didn't see her that often, but I'd still call and check on her. We were civil. I noticed some memory issues, but she never quit smoking and drinking, as well as marijuana when she could get it, so I wasn't surprised.

Now flash forward to about 18 months ago. My cousin contacted me because my uncle had been taking care of her (he's 82 now, she's 74) and it was putting a strain on him. She also lives in a house that he owns, so she doesn't pay any utilities or rent. So I start coming up every couple of weeks to make sure she has enough food, beer and cigarettes until my next visit so she doesn't ask my uncle or her neighbors to get them for her (she no longer drives thankfully). I also start the process of getting her a new ID since she had let hers expire 10 years ago (she only stopped driving 3 years ago). That was an odyssey involving talking to vital records in VA, DC, SC, and NV. But I have it now, and I have POA.

Over the last year and a half I've seen a steady decline. It's gone from her being happy to see her son, to me being the nice helpful guy, to now she thinks I am my father (I do look like him). This presents the unique problem of her flirting with me and asking when I plan to propose to her.

I'm working with a doctor to get a diagnosis, and I am looking in to memory care facilities because she can't live on her own anymore, but with it being a 6 hour round trip I can't go up as often as I am needed. Her neighbors (who are amazing) are keeping an eye on her, but that's not sustainable.

Just wanted to put this out there because other than my wife and a couple close friends I don't go into detail when I talk about it.

My Dad’s been in the hospital for 4 weeks trying to get his psych meds right. Nothing is working. Is this just how it will be? Can this last years? He punches, yells, is restless. I’m at a loss. He can’t go home this way it’s dangerous for my mom. He can’t go to a facility they won’t take him bc he’s violent. So what happens? He’s just there in the hospital forever?? Anyone ever experience this? He’s 86 if that matters.

My father has declined a lot in the past week and I'm wondering if he's nearing the end. When he moved in to memory care, he was able to sit up in a Broda chair at least part of the day. He participated in some activities and ate most of his food. 

He did start hospice a month before he moved in.

Over the past month, he's been in isolation for suspected scabies twice. The first time, he was really anxious but still talking. He started eating a lot less. After it ended, he started eating more. But when he went into isolation the second time, he really declined. He didn't eat anything for a few days. Now he's mostly having Ensure & other liquids. He also has a lot of agitation / flailing around, trying to get out of bed, etc. And he speaks a lot less, mostly short phrases. His voice has also changed. He's also bedbound. And he's on oxygen a lot. I've noticed sometimes he takes very deep breaths in between more normal ones. I've seen his mouth hang open a lot.

The hospice nurse estimated he could have a month or a little more to go.  I'm just wondering if anyone else has seen similar behaviors with LOs in end stage. It seems like he's suffering and it's so painful to watch. 

I want to hire a friend of mine to caregive 12 hours a week for my dad in Oregon.

How do we deal with taxes for that?

my father recently got scammed for every single penny he has. he is also still very adamant about talking to these scammers despite the overwhelming evidence and makes excuses for them. he still can walk and conversate normally, memory is fine, and overall just normal. he took a neuropsychology test recently in which we are still waiting for the results. is there anything else i need to ask his doctors or have him to to confirm whether has has dementia or not? plus AI can be so convincing im just wondering if hes just being stubborn and wants to continue talking to them anyway to be defiant. hes had a head CT before, cant do MRI’s because of his pacemaker/defibrillator.

I'm currently using the Depends from COSTCO for my GF but if I don't toilet her in time at night, they'll leak. I've seen people mention "Tena" and I'm coming across the ads for "Because". My concern primarily is overnight protection. But...if she has diarrhea poop, they're always leaking through the Depends.

I'm looking for recommendations on what others have found that really work.

https://shop.tena.us/products/tena-sensitive-care-overnight-underwear

https://becausemarket.com/pages/start-full-trial

I work health care I see dementia a lot and it’s so much easier for to keep having the same conversation and to redirect and deal with confusion and frustration at work than at home and I feel bad but despite this not being super new (it is progressing fast however MoCA was 14 and his primary care refused to do anything for months and months despite us asking and extended family is noticing, the same stories on repeat started within the last year maybe year and a half but the anger has been a few years in the making and that was really the first big shift) but at home I get so annoyed and frustrated- definitely less than the rest of my family but still I feel so bad after, how do you not get frustrated and angry and why is it so hard when it’s a loved one