Hi all. My father was diagnosed with LBD in early 2020. His decline was steady but the last 2 months have been really awful. He’s caught a bad cold and we’re worried it could progress into something worse - any advice here? Should he be taken to the hospital? He has a headache, stomach pain, coughs, other standard cold symptoms but they’re hitting him hard. We know it’s not flu/Covid. At this time my mother and I are his caretakers. Should we just have him rest and take plenty of fluids? I appreciate any insight here!!

How do you get your loved one to agree to go to memory care? I’m an only child caring for my mom with dementia. I had to leave my job because she needs 24/7 care. She has zero ability to recognize that anything is wrong with her. She thinks she is just fine and refuses all help. She can’t dress or bathe herself, feed herself, wanders all hours of the day and night. She’s on meds, and they are not helping. She’s extremely combative with me. I’m exhausted, can’t pay my bills, and just can’t provide the level of care she needs. I’m in the process of getting guardianship with the help of her Dr. I’ve found a memory care unit that will take her and I can afford while waiting for the guardianship to go through. I have medical poa to place her. They have assessed her (she thought she was just meeting a new person who came to her house for a visit), and the room is paid for. All that’s left is to move her in. She refuses. 100% against it. We’ve tried saying something needs fixed at her house and it’s a nice hotel to stay for just awhile. She says she will get a hotel or stay with her siblings (they refuse to help or get involved). She physically will not get in the car to go anywhere. I’ve asked the Dr if we can get a rx to help calm her and she won’t prescribe anything else. I’ve thought of saying we are going to dinner and then drive to the facility, but the facility doesn’t want her coming in completely unaware and I’m pretty sure she’d refuse to get out of the care once we arrive. I’m at a loss of what to do. Every day I think I can’t possibly do this for one more minute. I have a solution and somewhere for her to safely be. I just can’t physically get her there. I’m desperate for help.

I want to thank everyone for all of the support over the last few months. I’m glad I found this group. Mom passed away early this morning . I feel numb. I know there will be a void. Everything is spinning in my head. She was finally set free from this horrible disease. ❤️

My dad is now in hospice. My mom has dementia, he has done no planning for her. I live in another state as my parents moved to Georgia for reasons. The hospital my mom was in for the flu ( they both got the flu) is trying to discharge my mom and I’m fighting it tooth and nail as she can’t be in the apartment by herself and the apartment is gross. My mom has Kaiser Medicare. I’ve tried getting what I can together to get her on Medicaid but my aunt doesn’t think she’ll be eligible. I can’t stay longer as I can’t afford to go on fmla and not be paid. I’m crashing, I’m crying non stop, I’ve tried to be strong but mentally I’m done. I don’t know what to do. My aunt is telling me to get power of attorney for my dad, but I’m not sure what that’s going to do.

I cant sleep, I’m in panic mode, I feel alone.

My (25F) lovely mum (58F) has recently been diagnosed with Logopenic Progressive Aphasia, a rare type of dementia mainly affecting language/communication skills. My mum relies on me for a lot of things as her ability to communicate deteriorates and I often find it really hard to live my own life due to the guilt of leaving her.

For example, I have put all plans to move out on hold because she needs me at home with her. I work full time, which I already feel guilty about as I know her mental health is really struggling. My dads work is more flexible so he is able to be home with her, but I seem to be better at caring for her and she prefers me to be with her as I can often guess at what she’s trying to say or wanting to do. I also feel guilty when I spend weekends with my partner/friends as I just think of mum at home all week waiting for the weekend to spend time with me and get out the house and then I’m not there.

She’s getting more confused about daily activities and as much as I try to encourage independence while she still has the ability, The guilt eats me up because I know her life is easier with me around and I want to do all I can to make sure she is comfortable and happy.

Any tips/insights appreciated 😊

All I do is cry. Now my mom is backing up my toilet and the landlord is pissed. She is getting stuck also and can’t get up. She refuses to use the commode. I work a full time job and a, scared she’s going to fall in the bathroom while I’m not home. I can’t afford help. My family is checked out and I’m all alone. I’m getting her evaluated soon but don’t know what help that wil, do. I feel so alone.

Last night in cold winter night my mom who has Alzheimer's opened the front door at 3am and walked outside barefoot for almost 2 hours looking for bathroom door, until my neighbor called the police and they came to my door.

My question is there a front door lock probably with keypad on both side? Something that could prevent someone from inside and out to open? Or maybe some other people with similar situation. I'd appreciate your help

Has anyone bought their LO a Luna Cat? Are they really as lifelike as the ads make them appear? How did your LO do with it?

I read so many comments and stories by people who say if they were to be diagnosed with dementia or Alzheimers they would want to die by assisted suicide or by their own hand to not have to ever suffer that horrible fate.

If people know that they have a high chance, from previous family members, of getting this disease then once they are diagnosed why do so many still decide to live with it and not do anything knowing they will eventually end up being a mindless person inside of a body for maybe years and years being unable to care for themselves.

I just don't get it.

Rough day and night yesterday and today. Dad was feeling weak. Not eating much and sleeping a lot. Brought him to ER. Was there all night and into the morning. Went in pretty agitated but was mostly back at baseline when we left. Doc ran some blood work, EKG and looked at prior admission notes 2x in December. Doc could not find anything obviously wrong. Doc noted I was seeing a blip in change of mental status. Dementia worsening. He was back to normal this morning. Slept on and off all afternoon and didn't eat much. Had something substantial late afternoon and then went off the deep end in the evening. Kept saying help me but could not explain what he needed help with. In and out of bed all evening. I finally decided to just go in the next room and watch him from the camera. I have him low dose of melatonin and he's sleeping now. Tomorrow I need to do something to help him so we don't have a repeat of tonight. Should I take him to ER or urgent care tomorrow? I can get him seen a lot faster at urgent care. I haven't had great success taking him to the ERs at local hospitals. Assuming workup shows nothing, would first line of treatment be some kind of sedative. Are any of these safe for dementia patients? Thanks!

My 72yo Mom recently diagnosed Alzheimer’s to add to her vascular dementia diagnosis about a year ago. The neuropsychologist said she's probably only got 1-2 years left and that was before the PET scan for Alzheimer’s. She is starting to have more trouble with hallucinating and delirium that comes and goes in waves. Her short-term memory is not great, but she does have some good days where she seems so-so and can manage to get through the day. She is just starting to struggle with ADLs (brushing teeth, bathing, taking care of her skin, etc.) and we are looking at home health aides if she stays living with family. She's had some panic episodes in the last few weeks where she thought she was in another place/country. We are concerned she isn't getting the engagement and stimulation she needs as she often isolates herself in her bedroom and just watches TV.

We are looking at memory care options and took her to tour a few. She seems to be right on the edge of level 1 memory care and likely mostly needs queuing for some of her ADLs right now. It is hard to compare her to others we have seen in MCs as she is somewhat younger and not as far gone but we fear she is two steps away from having a step down that could put her in a more difficult place and make it much harder to transition to MC. I know the million-dollar question is always, when do you know, but is there ever a too soon for MC? Is it better to transition to MC before things get bad so they can adjust? If not now, what are some milestones and signs that it is time?

I know some of this depends on how things progress and how much the main caregivers who live with her are willing to take on but with her being on the younger end of the spectrum, it is much more likely her mind goes faster than her body.

what effective strategies do you use to manage stress and anxiety in difficult moments/episodes? which rx medications help? I have an old rx for hydroxyzine and xanax but I'm reluctant to use them.

My FIL is in the hospital after having a sudden violent outburst that he cannot remember at all. This was a sudden attack on his wife out of absolutely nowhere during a pleasant morning that led to him being arrested. No signs of abuse from him (I’m a survivor and former advocate so I know the red flags). He has no memory of the event at all.

Confirmed problems:

• UTI which is being treated now
• Chiari Malformation
• Stopped taking an SSRI at an unknown point
• Thyroid problems that are being treated but he may have stopped taking those at some point.

He has always been anxious but he is now showing signs of OCD (constantly using hand sanitizer and really worried about germs). He got a 25 on his MoCA but the hospital psych said the environment might make account for the sub-26 score.

We live in a separate state and my partner is basically his only advocate at this point. His wife is scared for him to be at home with her now and her family is basically telling her to abandon him (disgusting). She knows he didn’t do this on purpose and can’t remember it. Everyone is completely shocked by it.

Meanwhile, the hospital is trying to discharge him anyway saying all his tests are clear (MRI, CT, bloodwork, more), yet no one is willing to say what could have caused the outburst. He has a court date in March, and we really need to get some answers before that so we can get his case dismissed.

My concerns that I’m hoping someone here can help with:

• What other tests should we be pushing for?
• What kind of specialists should he be seeing to figure this out?
• Is there a certain type of doc who could help write a statement for court about this type of incident?

Thanks for any advice. This has been a hell of a week.

I’m 70 my wife of 50 years has AD. I am her caregiver for the last 4 years but it is all I can do to put one foot in front of the other. I realize I’m the one who has to keep it together but I am just exhausted. Are black mollies still a thing??

If any of you are familiar with my posts at all, my MILWD had a "boyfriend" who was a conman who had stolen hundreds of thousands of dollars from her. He has caused irreparable harm to my wife's relationship with her and our children. For a while, she had all but seemed to have forgotten about him. Suddenly a few days ago, she remembers him. Not only does she remember him, but is having delusions and hallucinations that he visits her daily/nightly. Because of this, every 5 minutes or so, she has to go out the front door, wander the patio and then come back in. Rinse and repeat. Last night she has done this about every hour or so, caught on our cameras. It's driving us insane and we can't sleep. So far she hasn't wandered far, but goes on rants about how she needs to go to Cambodia and go visit him. We've been doing our best to ignore it, but it really is going to be very problematic.

What can we do? It's only been a few days and us as the caregivers have taken a significant negative hit to our mental health.

My mom has daily urinary incontinence and occasionally bowel as well. She absolutely refuses to wear them and throws toddler-style tantrums when we put them on / the whole time she’s wearing them.

She’s incredibly sensory sensitive. She will only wear the exact same outfit (we have 4 pairs of it) and even if we got her the same shirt with sleeves 2 inches shorter or longer, she would freak out.

Right now, I have puppy pads underneath her wherever she’s sitting, but I’m changing her clothes all day long.

Are there any pull up style adult diapers that have less bulky, more fabric feel? Or are there super absorbent pee or period underwear that you’ve used successfully? She’s very plus sized, so we’re also limited by that.

I’m worried if we don’t transition her soon, it’s going to be a nightmare when the incontinence of bowel becomes more frequent.

I need some advice, my mother (64) begged her neurologist for the AD2 Ptau 217 exam, because of family history- she has slight forgetfulness but nothing to be concerned about. She still drives and doesn’t use a gps and is as independent as ever with her daily routines. Her results came back showing Ptau: 0.23 and her Abeta ratio: 0.147 L which is high risk of Alzheimer’s and she has the E3/E4 gene.

This being said she doesn’t know english and she went by herself to the dr appointment because i don’t live at home, the dr in broken spanish kept telling her how sorry he was and that she has Alzheimer’s- but she hasn’t even done her PET scan yet and she passed her Cognitive Exam that was given to her immediately after they told her she has this disease.

She started crying and has been telling everyone the dr told her she has it but it’s in the early stages and there’s so many medications- I have so many concerns, because I don’t understand how he could diagnose this without the PET scan.

My mother also has years of untreated Sleep Apnea and I’ve looked up that this can also aggregate these blood results.

I’m not sure what to think here- she’s already hit the panic button and feels doomed but I feel there needs to be more investigation and helping her understand options etc- I don’t know if anyone can offer any insight to help me understand this as well, this is all new to me and I just want to help her.

My uncle with stage 5/6 is currently hospitalized with an UTI.

At his AL and now at the hospital, his behavior is appalling and outrageous, throwing things, hitting staff, screaming, extremely agitated and aggressive, etc. as of this week, he also refuses to speak with me. I’m his only contact and 2500 miles away.

I encouraged the nurses to sedate him if at all possible, but they say they can’t because he is on an IV antibiotic and the medication may interfere…

I just feel bad for him and so helpless constantly. As many of you, I also have a full time job, a kiddo, a mother who requires support and a needy husband. Calgon take me away!

My dad whose been dealing with dementia for the last 6 years , gets UTI constantly. I heard cranberry pills are good for urinary tract health . Right now he takes around 18 pills a day. I don’t want to add to that cranberry in the form of capsules . Any suggestions on good cranberries gummies ?

What is your loved ones daily routine?

My mother has no romantic partner and no friends. She talks to 1-2 of her sisters and rotates calling her 3 daughters 10-12 times a day. She has no hobbies. She doesn’t have great mobility and she gets anxious going out in public.

She mostly sits in front of the tv all day napping in and out. She is losing her physical strength and beginning to struggle with simple tasks like changing her shirt. She is 69 years old and that feels so young to be in her condition.

I was going to take her to a local senior center for the socialization but my mother ask sexual inappropriate questions and talks about her young and wild sexual escapades. I worry she would get banned pretty quickly.

I’m wondering what everyone else’s parents do all day to stay occupied - physically and mentally.

Well, he lasted just over a week. They called yesterday and said that for his safety, and the safety of others, he could no longer stay in this memory care facility. We moved my dad (81m) into memory care last week on the 21st, yesterday the 30th, we got the call to come and get him. He had refused to eat for the last few meals and was not taking his meds either. He was threatening to run away as well. He has dementia and is also insulin dependent diabetic. The MC director suggested moving him to a behavioral health care unit, the thought of that just scared the hell outta me and we said no, we'll bring him home. Well, we got him and his things yesterday and discharged him from MC. After doing a bit more research last night, we think that maybe Behavioral health care might be a good place for him. We know that we cannot care for him by ourselves, he's still somewhat high functioning, but he gets easily confused and agitated. My mom (81f) has been in rehab in another state for 30 days and he's convinced that she's left him and is trying to get him locked away forever. She is getting out of rehab today and will be here tomorrow. They can no longer live on their own, they both need more care. She'll be in assisted living and he'll need memory care or something along those lines. I'm wondering how many have gone through this? Did you move your LO into behavioral health? What is the success rate? Anything to look for in a BH spot? What are some other options? Are there any good options to keep them together? She doesn't need memory care, but I would worry about him if he were not in a secure facility.

So my grandpa suddenly started acting wierd now a days for a particular time a day , so once my grandpa fall down and when we picked him up he started saying don't touch me and go away we didn't mind much we thought he was just annoyed as his health has been not good lately and taking a lot of medicine

But something more wierd happened yesterday in the morning he woke up and he watches a lot of astrology in tv so he started screaming and started repeating the astrology like call this number , hey sister take your son away , started screaming like a child would do and suddenly starts laughing it lasted an hour long , we even asked who you are talking to he said to the god so like he wasn't sleep talking or something as he was responding after waking up again it was like nothing happened and he was fine like he was

Today's morning something like that happened too like he woke up screaming and started saying cut cut cut (more like slay slay slay) but it lasted a min then he slept and again he was normal again

So I don't know if it's the symptom of dementia or alzheimer or should we get him checked for uti

Yesterday she was making no sense, as unfortunately is on par. Yesterday I was talking one of her carers how I had an allergic reaction at work and had to ask around for Benadryl. My mom asked me why I didn't have any. I told her I needed to go get some. Then she tsked and went back to making no sense. So how does something like that bring her back and then make her go away again?

This community has been so supportive and informative as I helped care for my Dad for the past few years. I'd love to repay that support by offering a ton of activity sheets I accumulated to try to help my Dad with his memory. I spent hours searching and compiling free word searches, puzzles, hidden objects, mazes, etc. and I would be happy to provide a link to download them to anyone who thinks they would be helpful.

My LO recently experienced a pretty sharp decline in functioning. She wasn't taking care of herself pretty much at all and confusion was at an all time high. After a few weeks of increased social time and ppl making sure she eats and sticks to her routine, she's greatly improved. It's been pretty shocking tbh. For example, she wasn't changing her clothes at all previously and now is changing them unprompted every morning.

We are of course very pleased but also a bit confused at how low the valley was and how much she improved in a short time. Obviously, we know she'll decline again but should we be expecting another sharp decline? Has anyone else experienced this?

Hello, Im just wondering if anyone has used a dementia day care service before and if it was a good experience? My dad is looking after my mum, at their house but I can tell he is starting to struggle. He always promised that he wouldn't put her in a home and they don't want carers coming in and out of the house all the time. I was thinking about booking mum in to a day club so he at least gets a day back to recharge/get some of his jobs done without having to worry about mum. Anyone else tried this? I'm in the UK, if that makes a difference. Thank you!

My mom is in her 90's with worsening dementia. She is eating less and less, often saying things don't taste good or are awful, including a lot of her old favorites. However, occasionally over the past few years she thinks there is something on her tongue, for example says there is hair on her tongue. Last night was crying, scraping at her tongue saying something tasted bad, asking what was wrong with her tongue, kept rinsing out her mouth. She is chronically dehydrated often refusing to drink but I did get her to drink some water and then gave her a life saver. She went to bed and to sleep. That issue has resolved for now (now she is trying to pack up and "go home" Always something) Does any one have any experience or thoughts on the tongue issue. I couldn't see anything such as a sore or anything. Thank you!

Hi,

I'm a developer interested in using AI models and tools for memory care. My vision is a system that is personalized to each user, that progressively and proactively "compensates" as short-term memory declines. There are technical limitations to consider, but I think there's a strong case that even the current generation, used in the right configuration, can be a tremendous boon for an individual. I'm imagining dementia in the early stages. Rather than focus on the how, I'd like to get first get feedback from patients and caregivers, regarding what would be the most useful. If you want to chat, either leave a comment or send me a direct message.

Many thanks!

Hi.

My (33nb) mom (67f) got the early signs diagnosis last month when admitted to the hospital for a gnarly UTI. I’ve been trying to do everything right, trying to calmly tell her what’s going on, what her diagnosis is/was, keeping up with her appointments. She had been staying with my grandfather/her dad (88m) since late November, as the UTI was giving her vivid hallucinations for months and she wasn’t coping well.

Over the last few years, she’s been pretty…verbally and emotionally abusive. Constant fights over nothing, constantly telling me how much I hate her, etc. it reached a fever pitch today, when she kicked me out of our house (I work a part time job, I’ve just never really flown the coop due to trying to make sure she’s okay since she left her job in 2020), told me multiple times she hated me, how much better her life would be without me, the full works.

I escaped to my grandfather’s house, laid low for a good bit. She had me call her because she couldn’t find her car in the grocery store parking lot (I’m very aware she shouldn’t be driving but like…after the screaming earlier, I wasn’t going to stop her). I told her I couldn’t be around her much anymore, because of everything she said. She was absolutely shocked I believed her, and said she wanted to be voluntarily committed to get her head sorted.

I literally just got home from sitting with her in the ER, where she kept apologizing for saying all of those hurtful things. As soon as we got to a room instead of hallway triage, boom, right back to “I hate you, you’re not my child anymore, you got exactly what you wanted.”

I guess I just need to be reminded that I’m not alone in this, that I’m not a villain, that it’s not my fault.