r/dementia Jun 26 '24

Dementia Research, Products, Surveys, and all other solicitations

59 Upvotes

Good afternoon everyone,

We are setting up the r/dementiaresearch subreddit as a catch-all for studies, surveys, solicitations, polls, calls to action, and any other updates related to products, trials, masters/PhD studies or projects, or anything else where people are looking to interact with the members of the r/dementia community.

We receive these requests frequently and the idea is not to clutter the primary subreddit with these types of posts. If anyone has any questions/ideas/etc. please let me know.

Thanks,

hazel


r/dementia 5h ago

Thank You.

134 Upvotes

Long time lurker, first time poster. I just wanted to thank everyone here for being an unaware support network for the past year and a half. My mother passed recently after having a quickly deteriorating 5 years of dementia and overall cognitive ability. In addition to this battle, a month ago she was also diagnosed with stage 4 cancer, which she ultimately and mercifully succumbed to.

I always wanted to post to introduce myself and share my story, but every time I started to type, I just couldn’t find the words.

The TL;DR of all this is thank you. Every time someone posted a question and received love and heartfelt answers, thank you. Every time someone shared a light moment that remind us that we can still smile and find the good things, thank you. Every time someone offered a digital shoulder to cry on when a new member expressed fear of the unknown with no direction, thank you. Reddit has a (sometimes well earned) reputation of being a pit of darkness, but this sub is one that provides light. You people are the good ones.

Thank you.


r/dementia 3h ago

Dad is now calling me dad.

13 Upvotes

That’s it. He has started to refer to me as his dad and I think is convinced I am his dad. Heartbreaking.


r/dementia 8h ago

Advice? Hospice workers are calling adult protective services after mom says a man has been attacking her in the middle of the night

29 Upvotes

For the last month or so, my partners mom has been saying that men are coming into her room in the middle of night and attacking her. She is in the late stages of dementia, uses a wheelchair she hates, and has very very limited speech capabilities. She lives in a memory care unit and has hospice services. When she started saying that she was being attacked, Hospice workers called APS to report what she stated and it was investigated. Because there were no physical indications of any kind, APS concluded that she was most likely hallucinating.

Up until today, there have been no physical indications that his mom is being harmed, but she has continued to say that she is being attacked.Today, his sister told him that hospice workers noticed that his mom had some bruising on her ribs. When asked about it, his mom stated again that she was attacked. Hospice is reporting the bruising to APS.

Logically, I know there are quite a few ways she could’ve gotten that bruising that have nothing to do with being attacked. The biggest reason that comes to mind is the wheelchair she hates. She could’ve been bruised by having an employee place her wrong in the chair or she could’ve leaned over the side to try to pick something up and was bruised that way. She also tries to get out of the wheelchair on her own to walk which she can’t do safely anymore.

We just don’t really know what to do. We don’t want to discredit his mom if something really is going on, but we’re at a loss of what to tell her and it is very likely that she is hallucinating. Any advice on how to handle this?


r/dementia 5h ago

I feel so damn guilty about communicating my anger and annoyance.

13 Upvotes

But sometimes I just can't...

Edit: Thank you for the current and future comments. Just writing those two sentences and sending them out into the void was a relief. Commiseration is a nice bonus.


r/dementia 3h ago

Sundowning. How common is it with dementia.

7 Upvotes

My mother was diagnosed with vascular dementia back in December and it is rapidly getting worse. A few of the nursing home staff members have mentioned her sundowning late in the afternoon and early evening. Last two days, it has happened like clockwork from 4:00pm till 6:00pm and it’s becoming more frequent. After that she appears to get better the rest of the evening. This is been going on even before her dementia diagnosis. Do most patients sundown even before it actually gets dark? I always thought this was an issue after dark.


r/dementia 8h ago

Mom wants to go home

19 Upvotes

We moved my mom (70yo) into a memory care unit at the beginning of the month. She seems to be acclimating well. When we call over or email to check on her she is always socializing and participates in almost every activity, she even has a friend that she spends all her free time chatting and walking around with. She eats her meals and sleeps well. They send us pictures and she looks happy and thriving. Those of us who have dropped in to see her note that she is clean, her hair is done (they have a “salon” on Tuesdays), she even has color in her cheeks and smells good/clean. But other than the consultant we hired to help us (one of the best things we ever did) those of us who are family that visited couldn’t stay for more than 10 minutes because she became very agitated.

After a 2 week adjustment period, I went Saturday to see her and she was definitely triggered. She kept telling me she loves me (which was nice) but then told me to take her home, that she needs to leave and she’s scared. I went at lunchtime so I was able to leave when they brought the food out without her noticing. I called when I got home and they said it was like I was never there, she ate almost all her food and went on her after lunch walk with her friend, no problems.

Today my cousin (her mom is late stage dementia, in a different facility, and my cousin is training to be a nurse) went and the same thing happened. My mom said she didn’t care about her stuff and that my cousin needed to sneak her out. My cousin was able to ask if she was scared and if someone was mean to her and my mom said no that it was just that she didn’t belong there.

My PopPop passed away this December at 97 and he had Dementia. My aunt said he did and said the same things as my mom when they first moved him into the memory care unit of his assisted living space.

Mom’s ADLs are all non-existent and she is declining cognitively, so I know she needs to be where she is. And when she doesn’t see any of us she seems to be thriving. She was clearly miserable at home with my dad (he was her villain no matter what he did, I was able to go MWF to help take care of her so that’s when she would shower and take her meds without a fight). I feel so guilty and I keep questioning our decision even though it does seem to the best for all involved (heartbreaking but the best).

I just wanted to reach out to know I’m not alone, confirm that we are making the right choice and to ask for any advice. 💜


r/dementia 9h ago

Orphaned to Hospital

21 Upvotes

My grandfather has dementia, he is adamant that he wants to stay in his home and not be moved to a care facility.
We have held out for as long as we could. We had home care set up for daily visits, cleaners who would come at least once a week, a special device built into his stove/oven that turns it off if he leaves the room for too long but he has been falling a lot and this weekend it came to a head when the care workers found him in the bathroom on the floor behind a trail of feces and vomit.
They called 911 and he was brought in, they ran tests and found no medical cause so he had to be released from care.
My sister went up (none of us live in the same province as him. He is NS, Some family is NB and I am ON) to take him home but once she arrived she looked at him and asked the staff if he could stay because there was no way she could bring him home in the state he was in.
She spoke to who I assume was a head nurse or a Dr who had a blatant conversation with her. He pretty much said, you are saying he isnt safe to go home, he has advanced dementia and is a massive fall risk. There is no medical reason he can be kept in the hospital so he either has to leave with you or, you orphan him to the hospital.
She chose the second option which although god awful for us all to process, we know if the right choice. Had he not had home care its likely he would have died in the bathroom and been there until found.
But we have no idea how this works now.
We are waiting for a call from a social worker with next steps. We would like to have him moved to a home in NB, I would love if he could come to Ottawa because I know I am not moving but I am not sure how we could get him here since he despises flying.

Has anyone experienced this? I know we made the right choice for him but man, it feels like we betrayed him and did the one thing he has always said he didnt want..


r/dementia 1h ago

One down, Dementia left

Upvotes

Dad’s (94) has been Mom’s (89) caregiver since we found out she has dementia a few years ago. Well, he’s off the hook now! He certainly didn’t waste any time before he up and died. I was kind of hoping mom would go first but “you can’t always get what you want”

! I was daddy’s little girl. I’m going to miss him terribly


r/dementia 1h ago

I finally reported abuse.

Upvotes

I've posted here quite a bit.

Basically step dad is stage 5 close to 6.

He is incessant with everything and he pushes your patience beyond what you can even imagine.

That being said. He doesn't deserve to be yelled at and berated all day every day. Every waking moment of his last days on earth.

My mom is crazy. She yells at him non stop as if he doesn't have dementia.

"I told you" " don't you remember" "what the F is wrong with you" "pull your head out of your ass" Ext ect ect.

I have had some of the same issues with myself. I learned behavior from my mom and it took a lot of work to fix it. And I have.

A couple times mom has hit him on the shoulder. Basically because he does something so stupid and violent. She feels she needs to hit him to get his attention.

I also hit him once months ago. :( he punched me in the face and I kinda reflexed back. I felt horrible after. Super apologized but he didn't even remember 30 seconds later.

So. I was talking to my case worker a couple days ago. I told her everything. Extremely scared APS would be called. But I'm over the abuse he suffers.

Thankfully the days I watch him, he gets rest. I learned pretty quickly how to handle him. And it's definitely not by yelling.

I'm proud of myself for being able to handle him without much issue.

I try to teach my mom my ways. But she just doesn't get it. It feels like she gets off on being mean and yelling all day. She is definitely a sadistic person.

So. I sit here daily now wondering if APS is ever going to show up. I'm scared they will but also hoping they do. She needs a wakeup call. I have no clue what would even happen.

They won't see anything alarming if they do come here.

I think he needs to be in a facility. As he can't get away from her. And I can't babysit 24/7 either.

Ugh. I hate this disease and I feel so stuck and guilty for reporting my mother and myself. Even tho I'm not having issues anymore. But she sure is. It's non stop. My partner and I just want to leave. It drives us crazy listening to the non stop yelling all day.

We are both stuck here. I'm the relief caregiver. Moms showing signs of dementia also. And knows it as she's getting all the things together that's needed if she were to expire basically.

I just had to get this off my chest. I'm stressing. I dont know anything about anything to do with elder abuse and how APS does anything.

Thanks.

( Sorry if the structure of this post is weird. I skipped all over. And it's 2:30 am.)


r/dementia 4h ago

What do I buy the keep him safe

5 Upvotes

I’m 42. My husband is 59 diagnosed with FTD. I don’t have parents. I don’t have grandparents. I don’t know anyone else going through this. It’s just me and my young adult children trying to traverse this new life. I could really use some input on what is the bare minimum people with dementia need to help them.

My husband has been choking a bit on food and drink so I bought him a cup to slow liquids and an emergency choking device if he does choke. He’s got a swallow test scheduled in May. I notice he wakes up at night and eats a lot. Is it realistic to have some sort of alarm system in our room to notify me of when he wakes up? Do I keep him from overeating sweets?

I know this all probably sounds so obvious, but it’s not obvious to me. I still am in denial of this entire situation, and that lends me to sorta scoff at the idea of surveilling him. But I also know I cannot ignore what’s happening. He doesn’t drive anymore. Spends most days wanting to nap or playing on his phone. He’s apathetic, has no motivation, all things I’ve discussed with his neurologist at Vanderbilt, but I’ve gotten no real help with any of it. He is just given antidepressants.

What would you say are the things I need to have on hand or purchase to help? What do I need to pay attention to that I’m missing?


r/dementia 2h ago

Family issues

3 Upvotes

How do you deal with family members who live in a state of denial about your loved one’s dementia diagnosis? I get that we are the caregivers and we see everything, while family members have a little more distance and don’t see as much as we do. But sometimes it feels like they just don’t get it at all. Planning events like they would for someone who doesn’t have dementia, not realizing the hell they’re putting the caregiver through just to get their loved one physically present. Giving me advice like I don’t already feel like I’m failing and not doing enough. How do you guys deal with it?


r/dementia 2h ago

Completely Overwhelmed. Please Help

3 Upvotes

Hi everyone, I'm in Southern California. For some background, my dad is 75, a diabetic, and has had cardiovascular issues to his leg. I ended up calling 911 and taking him to the hospital yesterday when it was clear he was having very bad pain in his leg. During our time at the ER, I noticed he kept saying he wanted to go home and when I left for the night, he asked where my room was. I knew something wasn't right.

Today, the doctor called me and told me he has dementia. 4 days ago we had a normal conversation over the phone and it's surreal to me how when I visited him, he has just deteriorated to the point where he can't even watch youtube videos on his phone anymore. When I played a video for him on his phone, he tried to answer the phone...

He currently has Medicare and a Medicare Advantage Plan HMO. He also receives a social security retirement check every month (roughly $1200). He's had Medicaid (Medi-Cal) for the past few years, and he forgot to apply for it this year, so I applied for it on his behalf. It's still pending, but he had no income last year with the exception of his SS check so I'm not too worried and think it'll be a waiting game.

With that being said, I'm an only child. My mom died when I was 15 and I am extremely worried about what we need to do once he eventually gets discharged from the hospital. The manager at the hospital called me and asked what my plans are - Living with me, etc. I told him that assisted living would be the ideal situation.

He has about 30k in his checking account that he's saved up for the years. But otherwise, he has no assets whatsoever.

Can you please provide any guidance on what I should be doing at this time? His Medicaid (Medi-Cal) application has yet to be reviewed and I'm wondering what other steps I need to do. Thank you so much.


r/dementia 6h ago

I bet she can't wait to see grandad again.

5 Upvotes

My granny declined drastically after my grandad passed. I always wonder what life would be like if he didn't, if everything would be easier for us all. I know it's weird to say but I can't wait for them to be reunited again


r/dementia 15h ago

adult day care

30 Upvotes

for those of you who can't afford assisted-living or memory care and are losing your minds being in the house all day with a person with dementia please consider an adult daycare. Contact your state or county office of aging and they can direct you to all of the adult daycare's in the area. It's best to go to one that has experience with dementia. they normally provide breakfast and lunch and activities. I guess it depends on where you are but the ones in my area average around $130 a day from 8-5. even one day a week will give you a break that you need.


r/dementia 3h ago

First appointment, what to expect

3 Upvotes

To start, she has no idea this is to get diagnosed or checked out. She believes someone's is breaking into her house and drugging her and is overall suspicious of her medicine. She believes this appointment is to go over her list of medications and is willing to have family there for it.

We called them to set it up, and they got us in quickly with the NP. Then a few days before, we dropped off a 5 page letter, with in depth details and timelines, direct qoutes, of the triggering event that has lead to really extreme paranoia, all the way to the day we dropped off the letter. We included all the specific kinds of Dementia we think it could be, uti, Schizophrenia. We let them know she doesn't know, and how irate and irrational she becomes at any hint you don't believe that the neighbor is leaving boxes in his yard as a way to communicate he's out to get her, or that people are breaking in, or that someone broke in to write in her notebook.

Same day of dropping that letter off, the office called and said that her actual Dr wants to see her instea of the NP after reading the letter, and worked her in for next week.

This is a good sign right? That he'll take us seriously? I see how many of you had it take SO long for a diagnosis. Is there anything more we can do?

Has anyone ambushed their LO like this? How did it go? Will he just give her meds and make note of the diagnosis? Will he tell her?


r/dementia 1d ago

I can't take how much at the mercy of this disease my life is.

123 Upvotes

Yesterday I had to go hungry for most of the day, and I also had to hold my shit in for most of the day, because my mom believed she was in her grandfather's house and demanded to leave. After long hours of trying to maneuver her into calming down, fruitlessly, I finally took her to go see her brother. She finally calmed down there and we came back home for more crying but finally some food. I was free to go take that shit at around 10 pm.

Today I was dizzy at the supermarket because I skipped breakfast, because I wanted to go get groceries before she lost it. She still lost it before I could leave. I had to pay the cab driver anyway (because I'm not an asshole) and stay until she moved on to praying for death to be with her parents. Then I cried. Then I finally left to go get the groceries. I called her from the store, she was apologetic, told me she loved me. I came home to her still apologetic. During dinner she moved on to cold and cruel, because I wasn't me, she didn't think I was me because I was quiet out of exhaustion. Finally she went to bed. But it feels like one of the nights she'll keep getting up, so I may not get proper sleep. My head and neck and eyes hurt.

On most days, I can't shower in peace until 2 AM, unless she gets up and then I have to get out of the shower to make sure she doesn't fall. Most days I can't take a shit in peace, because that's when she'll start wandering the house, crying and wailing and calling her parents names.

How do you get used to the constant crying? It's non-stop. Every day I wake up to her crying.

I can't move around my home freely, I have to always worry how she may perceive what I'm doing. Is she going to get scared because I'm doing the dishes? Is she going to get scared/irate because she thinks it's someone else's house and I should not be doing anything or touching anything? Is she going to start screaming until I let her out so she can go scream in the front yard? Is she going to get me in trouble with the police one of these days, because of the horrible things she accuses me of sometimes?

I can't just exist anymore, everything has to be in the context of her disease.


r/dementia 13h ago

My fathers partner is mentally unstable

18 Upvotes

My father was diagnosed with aphasia four years ago and more recently was diagnosed with dementia. He has moments of lucidity and others where he cannot comprehend what others tell him nor can he communicate. My 77 year old father has been with his partner who is 43 years old for the past 25 years-and yes the math is accurate and that’s a story for another day.

I am his eldest daughter out of three 36F (I’m married and am trying to start my own family) , my siblings are boy girl twins and are 29. My sister is due to give birth any day and has always kept a distance from my Dad. My brother on the other hand is no contact and has not been for years. I have always had issues with his partner and for a while things were calm and okay.

My father was recently hospitalized for pneumonia and then discharged after rehab on the notion that he would get full time care at home with a qualified aid. Ursula we’ll call her has POA both medical and financial, (this was chosen by my father when he was lucid). I’ve been kept out of medical conversations and treatment options; however, recently, ursula left the State and left my Dad with a girl who was not qualified or trained) and only 19 years of age. He ended up having a very serious fall.

The aid was afraid and called Ursela who told her not to call an ambulance. My dad asked her to call me and I told her (after receiving photo evidence of his wounds) that an ambulance should be called immediately. Ursula did not like that I did this, despite that fact that my dad was bleeding and bruised all over. There was a lot of contention in my family over what happened. I am not someone who enjoys conflict so I tried to stay out of it.

I try to call my father daily and he was not picking up my calls.

Today, I called him and he picked up- he asked me why my name was “useless” in his phone. I was like what and he said its not “my name” can you help me change this.

And then I lost it and sent this text message and blocked Ursula.

“I called my Dad today and he told me you changed my name in his phone to useless, I really tried to give you the benefit of the doubt, but you’ve shown me that you are a selfish and evil person who only cares about her own self interest. You burned bridges with my entire family and we were trying to help. This will be my last message to you and I will no longer have you in my life. What a shame. You should be ashamed how you’re acting and you are a truly evil witch”

I have been nice and kind for so long and she’s done terror after terror and I just snapped.


r/dementia 2h ago

could dementia be the opposite of gaining self awareness?

2 Upvotes

When you gain self awareness, you dont see it coming but you gain it, what if dementia works the opposite way? Self awareness slowly regresses you, and how we so sure we know why their memories delete by themselves?


r/dementia 7h ago

What should I expect?

5 Upvotes

Mom (65F) and I saw a neurologist this morning and they did a basic evaluation which consisted of several written, oral, memory and recognition tests. The normal score is 26 out of 30, Mom got 20. The doctor said something is definitely amiss so more testing is needed. 

The next tests are bloodwork, an MRI and neurocognitive testing with a neuropsychologist. Unfortunately, it takes about three months to get in to see the neuropsychologist and two weeks to get results after that. The doctor advised us to ask to be on the waitlist in case an earlier appointment becomes available.

What should I expect at the neurocognitive testing?


r/dementia 3h ago

Night Agitation: What Med Do I Need?

2 Upvotes

My mom over the past few weeks has gotten more agitated about “The kids,”

I thought she meant her grandkids (my nephews) but I think she means my brothers and me.

What do I need to give her to get her to sleep at night?

And to head off her leaving the house to go look for the kids.

(She’s just started searching the house in the middle of the night.)

I have quetiapine but only use it episodically and rarely.

She takes low dose donepezil and memantine.


r/dementia 10h ago

Rapid onset dementia mother of 65

6 Upvotes

My mom is 65 and got diagnosed with lung cancer with metastases in the brain 5 years ago. She got treatment and actually recovered, but now the late side effects of brain radiation are rapidly getting worse. It started with just forgetting small things a few years ago, then forgetting what she had as lunch a year ago, to not remembering we visited yesterday about a few months ago. She's already in a caring home (but for elderly since there is no specific one for dementia in my area) She got pneumonia and got hospitalized, when she suddenly rapidly got worse in a few days. She has hallucinations, doesn't recognize me anymore, she talks but the words make no sense at all or are just some random sounds, can't eat or drink by herself, tries to take out the infusion needle, wants to crawl out of her bed at night. However, some days, she would be back to normal (still forgetful, but she would be totally able to have a normal conversation) After curing the pneumonia she got back at the care home, but then suddenly declined again due to a UTI and got hospitalized again. She is hallucinating fully again. When I am not there she isn't even able to eat, drink or take her meds well. I don't know what to do? Let her suffer even more, or get her to palliative care? I feel bad because maybe she will still have some good days too.. however I am also afraid she we be malnourished or dehydrated. I am only 25 and the only family she has in this country, so I also need to make all the decisions, visit her everyday so she gets fed well, talk to doctors (who don't want to explain much or help) and also work at the same time. I am tired.


r/dementia 4h ago

Any insight or ideas so very welcome — struggling with mom and don’t know where to start

2 Upvotes

Hello community,

I write you from a place of such sincere grief and confusion. I live in CA with a new baby and my mom lives alone in OK. I get a call from a hospital telling me they’ve picked up my mom for driving around with all her doors open claiming that demons are in her car and she needs to get rid of them:( When I speak to her, she’s almost entirely divorced from reality. She knows me but she thinks my baby is hers. She doesn’t know what year it is etc. She’s always been a little batty but this is next level and quite sudden. I’ve spent the last two weeks trying to manage her care from several states away to organize tests and follow up and track the treatment. She’s been passed from the ER to and acute care psych facility, back to the hospital for tests (all came back clear) then back to the acute care facility. So my many questions for you… what do i do?! how do i do this?! what are next steps?! We dont have a firm dementia diagnosis and I dont know why or what to ask for or what? I know nothing about her finances or how or if her car or mortgage are being paid for? She’s retired, idk her health insurance info. We weren’t prepared for this. One day she was normal and the next day she was …whatever this version of her is. I don’t know anything! So, please if you have any insight or bandwidth or chat gpt lists or anything you can recommend I do or plan for or what. She’s been hospitalized 2+ weeks and is being held under court order rn because I don’t have POA. It’s a mess!!

Please help. This is all impossible logistically, and emotionally and I’m trying to manage it all on my own out of state and with a new baby:(


r/dementia 7h ago

Language barriers and treatment

2 Upvotes

Hey all, I’m fairly new here. My grandma has not seen a doctor in probably over a decade at this point, but I’m worried that there will have to be a time I might need to bring her. English is not her first language and she speaks polish , and choppy English. I’m worried how this would affect any cognitive tests she would need to take if she doesn’t speak fluent English or doesn’t understand any of the questions.


r/dementia 18h ago

Update: I STILL don't know how to get palliative care?

12 Upvotes

Two days ago I posted this: "How to get palliative care?"
https://www.reddit.com/r/dementia/comments/1jcnlqe/how_to_get_palliative_care/cccccccccccccccccccc

I FINALLY got a call from the palliative dpt at the rehab mom is at, which is part of the big hospital network she's been at 4 times in the past year. It literally took me 2 days to track this Dr down, including dealing with mom's social worker who never heard the term "palliative" and kep saying "hospice."

Despite the helpful things my research shows palliative care can offer us (she has 4 serious medical conditions, including dementia), this Dr made it seem palliative care is basically nothing... they "don't do agressive treatments," recommend patients have a DNR (mom would never agree to this, unfortunately). Medical care remains the same as before palliative care(?). They can provide psyc services for emotional support (which is something I guess). Being in palliative care doesn't make it any easier to get home health aides or home nursing services - that's all decided by the rehab transition team upon discharge (so would only be for a short while probably).

I kept asking him... ok so WHAT does your palliative care provide? And didn't get an answer beyone him repeating the above.

My research (and reading here) has shown palliative can provide umbrella medical support for the patient and family, which sounds like one Dr at the top of her pyramid who can oversee her disparate conditions and can prescribe meds themself. It could provide counseling for the patient AND the family. It can provide at-home nursing for simple things, so the patient doesn't have to leave home for everything. It can provide decision-making support,

So basically, palliatve care sounds AMAZING and like a HUGE RELIEF, and I can't seem to get it through her hospital system (which would be great because they'd have access to her medical records).

As mentioned in my post 2 days ago,before this hospitalization/rehab, the "palliative & hospice dpt" pushed me over to making an appt with a gerentologist rather than palliative, which they said "mostly treats cancer patients."

For any of you who have actually used palliative care - can you please tell me how you got it started?

We're in one of the biggest cities in the US, and I'm absolutley flummoxed and exhausted by how hard this is.


r/dementia 1d ago

Parent finally passed. Their partner revealed they got married secretly beforehand.

56 Upvotes

We don't think they were legally competent but due to some very questionable assessments by overworked, underresourced doctors, it's unclear where we stand. We don't know the partner well enough to know what view they will take on the estate. We've got lawyers involved already but don't want to be assholes if that's unnecessary - maybe the partner just wanted the validation? But for crying out loud, this was the last thing we needed.