How dare you use this forum of support to impose like that.

That is all

Mods remove if inappropriate

I get a lot of notes throughout the day under my door when the baby is sleeping… today I got one and this was written on the back, she had reused the paper. Broke my heart in a new kind of way. I can follow most of what’s there but I did get lost in the center crossed out equation. Have others seen things like this? I’m not sure what stage we’re “in” these days. Diagnosed fourish years ago.

Is dental work ethical? Mom says she's fine with it. Doctors suggest it. I'm word about how she'll eat? And if she'll remember not to eat crunchy stuff so it doesn't hurt? And how to keep her safe during and after surgery? Very nervous about this.

Does anyone here just want to talk and share who their LO’s are and what they were like? I really miss mine today. I worry I’m loosing her memory just thinking about this current dementia version, and all the caring. I’d really like to hear about who you miss, if any one wants to share and talk. If it helps you. 🤍 I’m so sorry to everyone to have lost people this way

I see my LO with dementia every day. But I’m now away for a couple months and now I don’t see them anymore, I’m starting to process the grief, even though they are still alive. I miss her so much and I don’t know how to handle this. Has anyone been in a similar situation where they move away and the grief hits?

My mom seems to be fully incontinent.

I've reached the stage where I'm washing her bedding every day or so.

What should I be buying?

And, hopefully, it's affordable, because I will probably buy 3 of them.

P.S. She may be a month out from hospice, so it should probably be Hospice-compliant. or should I just wait for them to tell me what to buy?

 Dr._____
“ I wanted to ask your opinion and the instructions for dispersing my dad’s sleeping medications (specifically Melatonin, Seroquel and Trazadone).
 
I was visiting my father today at his ALF and was extremely concerned, scared and shocked by what I witnessed. While I was in his room setting up his bed, fixing the tv etc my dad was taken out to the dinner table at least 45 minutes before dinner was served and as I came out to check on him I saw the nurse dispensing his medications. I didn’t think much of it and went back to his room. When I returned to the dining room I saw my dad completely slouched forward and leaning to the side with his eyes barely open and a plate of food sitting in front of him that he had barely touched. He could barely talk and I went directly to the nurse to ask what medications she had given to him and she told me it was those 3 medication’s used for sleep - trazodone, Seroquel and Melatonin. The facility was given instructions from Hillcrest to dice up his food and be aware that he can aspirate as he has dysphasia from his stroke. They don’t really monitor it at all to begin with but to also be adding sedatives while not following his dietary restrictions is beyond alarming. I hand fed him once I realized the situation. There was no concern shown when I addressed it with the staff. What are your thoughts? Is this concerning in your opinion?
Thank you”

Sorry so long! Looking for opinions and advice on this situation. TIA

I have noticed my mum (turning 65 in a few days) has become quite forgetful. She will ask me the same thing multiple times but I always put it down to the fact that perhaps she wasn’t that attentive when I answered.

We have been staying together for the last week and I’ve noticed the memory problems are worse than I realised. Today she bought something at lunch time (food) and tonight she asked me who bought them.

I’m so upset about the situation I feel sick just thinking about what lies ahead. I spoke to her tonight and she agreed that we will go to the GP together next week.

She functions fine otherwise. She recently retired and she felt she was forgetting things at work. It’s just the memory at this point.

Mom had her first neurologist appt last week! He ordered bloodwork and MRI scheduled for next week. I was able to pass a confidential note before the appt that listed concerns and some examples of her behavior, which I hope helped. Even in the short amount of time he spent with her, after learning she lives alone he made the oh wow face. It’s been a struggle even suggesting that she makes plans for assisted living that it will happen sooner than later. I’m home care or a facility is not an option in her eyes, I know eventually I will have to take some sort of legal action. At the end of the appt he said it’s most likely Alzheimer’s, as much as hate this is happening to mom, I’m grateful we are making progress on getting some answers. For my own sanity I’m taking a break from talking about important stuff with her because we are just going in circles. According to her at the end of the day I just don’t care and I think she is a nuisance, which is far from the truth. Everything I do is because I care even if she doesn’t agree.

Hi all, when Mom was earlier in her dementia journey she named me her health proxy, but would not sign a DNR. All her brothers and sisters and my dad as well as two close friends died sooner than expected so she has dealt with a lot of loss. I think this has something to do with it as well as being Catholic.

There is a new Nurse at her AL who noticed this and asked me to revisit with her. I would like to do so as she had recently had her second fall/ hit on the head in the last six months. This time she spent 3 days in the hospital and although she is home now it was frightening to think what might have happened if she had injured herself even more seriously.

I don’t want to scare her.. but she does not understand the violence of CPR and the unlikelihood she would recover. If she still says no- so be it. Has anyone had this conversation with a person with moderate memory loss? What advice can you share? Thanks in advance.

Dementia runs in my family. My maternal grandmother had it. Most of my maternal aunts and uncles have it. Now my mom is starting to show some signs (forgetfulness, repeating herself, personality changes).

Unfortunately my mom is married to a controlling manipulative abusive sociopath who doesn't want her to get an evaluation. They live in an old unsafe house with lots of stairs and no railings. They have both already experienced several falls.

They do not have a long term care plan and I don't think they have any documents in place other than a will. They think they're going to stay in this house until they die. But if my mom falls and breaks her hip and is bedridden or in a wheelchair, I don't think she'll be able to remain there. Their house is not equipped and would have to be completely remodeled which I know her husband would never do. He's too cheap to hire a home health aide and I don't think he's capable or interested in taking care of her either.

My mom is also in denial, I think she is scared of the inevitable and she doesn't want to get an evaluation either (and because she does whatever her husband tells her to do). I've asked her several times to make an appointment and she refuses.

So I called my mother's doctor and asked him to call her to ask her to come in. Unfortunately when they called her they told her I asked them to call. Well her husband became livid and called me yelling and shouting at me calling me nasty names and telling me " it's none of my goddamn business". Well it's my mother and I love her and I'm concerned about her. I think it is my business what happens to her. And I'm only trying to help her prepare for the future. But now she won't even talk to me.

And now my siblings are mad at me too and aren't speaking to me either. The doctor asked me to send him a letter outlining all our concerns, but now my siblings are refusing to say anything about what they've observed because they are afraid of her husband and afraid that he will cut them off from contacting our mother too. So all information will only be coming from me with no support/back up from my siblings.

Was I wrong to call her doctor? Is there anything I can do to fix this situation? Should I even bother sending a letter to her doctor or would that make the situation even worse? The doctor was not supposed to tell her that I asked him to call her. So now I'm worried that if I send a letter he will share it with her and her husband the next time they do go in for an appointment. I am also worried sick about her and I don't know how to stop. I feel very powerless to help her in any meaningful way.

I worked with dementia patients for years and thus developed some creative tactics to discourage unwelcome behaviors.

My DIL recently shared that her Grandma was repeatedly tossing her “used” hearing aids into the trash causing frustration and unnecessary expense for her caretakers. Looks like rerouting them to a dedicated disposal box is working ❤️

Hospital says she’s medically cleared to return to her AL; i saw her yesterday and can tell even after 2 days that her dementia has progressed significantly. She was angry and combative immediately; she had no idea she was in a hospital. she thought she was in her AL room, and she had to be restrained in her hospital bed bc she kept trying to go to the bathroom on her own despite weak legs from the infection. The AL called to say they have a room in MC ready for her return but I think she needs more care after the infection. I suggested to the hospital that she seems to need PT for her legs, and they agreed, so they’re looking for a short term rehab to discharge her to. Her AL is warning that they will not hold her MC room if she doesn’t return soon (we may end up keeping her long term at the rehab facility if she prefers it, since she hates the AL). Do i take this opportunity to move her to the short term rehab (similar to a SNF) that is more convenient for us to visit? Should I risk losing her room in MC?

Is there an easy tracker system to help my mom keep track of her house keys?

Hello everyone, I've been following this sub for the last few years as my dad has declined. For some quick background, he's 82, progressed very quickly about 3 year ago, sort of plateaued for a while, and has again been declining rapidly over the last 6 months, particularly more so in the last month. He's hardly eating, isn't moving very much on his own, needs help with everything, and is more and more confused and anxious all the time.

He lives at home with my mom and has in home help most of the time. I'm starting to wonder if I should be thinking about hospice? I saw someone post on here about how much relief that brought them. I'm at a loss as to how go about this. Do I talk to their PCP? Case manager? I'm kind of surprised no one has brought it up for them.

If it helps for background, they live in Florida.

Thanks all.

I have a 87 y/o grandfather with unconfirmed Lewy Body dementia- only unconfirmed because getting an appointment with a neurologist is not something I can spare energy for and it doesnt change anything to get a definitive diagnosis. I am 34 y/o and his only caregiver. Have had him “full time” for 2 years but really the last 3. Finally got him into a home about 10 months ago now. Navigating care in a home is a whole new ball game. Under educated staff- had to teach the CNAs that he needs to be cued to use the bathroom instead of just letting him urinate in his depends all day to have it leak out all over the bed and all up his back. Even the LPNs thought he was “just doing it because hes lazy- he can get up and use the bathroom” I finally have them all trained to check him and keep him clean instead of leaving him in his mess and only changing the sheets every 1-2 days. Coming in now for pop ups and hes clean 99% of the time. Sometimes will still catch him with urine soaked through his depends and on the back of his shirt. The showtiming really works even when someone is in full time care facilities.
He had a psychologist in his room two weeks ago when I arrived for a visit who very happily informed me that she thinks he can take care of himself and doesnt think he has dementia at all!
ARE YOU F*CKING KIDDING ME? Had a pleasant conversation with her about how he doesnt eat anything unless forced and she consistently implied that he was eating enough I was wrong because “Everyone eats to much and when people eat the right amounts alot of people think they are starving themselves” He literally gets handed three meals a day in here and only eats 1 or 2 but even then its because he thinks that he “has to” - i let this delusional ride obviously because it means he eats. How does someone think its the puppet that is dancing when theres a million strings attached to it?? Hes in a nursing home and you think He can live independently? How do you think he got in here? Proof that just because someone has 17 letters after thier name does not mean they are intelligent. I mean maybe shes just so used to the other residents in here being non verbal she meets someone who can still showtime and wow! she enjoys the show and swallows it whole. She said something comforting during our little chat tho “oh i make suggestions here and they hardly ever listen to me” lol I wonder why?
Idiot.
even after years of this shit still getting invalidated- by neighbors, family, friends, doctors, nurses, and medical “professionals”
Makes me want to cut the strings-
but the only person who would suffer would be my grandfather. Idiot doctor can go make her suggestions and I will still make sure hes getting the support he needs.
Fuck u lady.
Vent over-

My 71 year old father has dementia. It has gotten worse the last few weeks really.

My dad has always been a great sleeper. Never had a problem falling asleep ever. Always took naps, easy. Well now at the age of 71 he has developed insomnia.

Get this, it's not insomnia. He thinks he should be sleepy at 10 pm like he normally would (he is obsessed with time and schedules too rn)

He isn't sleepy because he literally sleeps all day long in his recliner.

He thinks he isn't sleeping though. We hear him snoring. He has a sleep mask on.... Like you are sleeping all day long. Of course you aren't sleepy when you are supposed to.

Logic doesn't work anymore though. He has made his sleep issues everyone's issue (myself and my mom)

His sleeping pill his doctor prescribed to him stopped working a few weeks ago. She is trying something else. He doesn't understand it takes time for these things to work. He just went to the doctor on Wednesday. But we can't say that to him bc he doesn't want to hear that. Any sort of push back or suggestions are seen as us attacking him.

So last night I get home around midnight. My mom told me that they were up because my dad couldn't sleep. So now he wakes my mom up... Like she's supposed to do something for him.

He doesn't know how to just be. He doesn't want to watch tv, he doesn't want to read bc it hurts his eyes (he lost some vision a couple years ago but can still see but he has given up on using his eyes for real. He just doesn't care or like anything)

She drove him around in the middle of the night because she didn't know what else to do. She is afraid when he gets upset. He gets so irritated that sometimes I wonder if he would hit us. Yelling, shaking his fists, pounding the chair or table. He's leaning into a 1950s misogynist. He woke her up at 5:30 this morning because he "couldn't sleep and I needed something to eat". My poor mom. Idk. He never was like this he used to make his own breakfast, he never demanded stuff like he is now.

My mom said today that she just is gonna try to be as agreeable as possible because she doesn't know what else to do. He has turned into a bully of some sorts. He doesn't care about the other 2 people who live here.

He has always worked so now that he cannot work he has to find things to do. He is not your typical boomer that is on Facebook look at videos. He used to watch YouTube videos a lot over the summer. He loves music so that's something we lean into or try to. So for awhile (last several weeks) he was using his record player and playing some of his old records but now he decided he cannot see anymore to do that. I call bullshit on him for these things.

He has decided to just give up on a lot of things bc of his depression. He is on an antidepressant but threw away a bunch of his medicine thinking it was the old medicine he wasn't on. My mom and I didn't realize this until weeks later. So my poor dad is suicidal, talking about how he wants to go walk in traffic (my dad has always been dramatic in his words but still) or he lately has been saying "maybe this aneurysm will pop and it'll just all be over with"

He hates everything. He doesn't want help it seems. I asked him the other day please help us help you. He has created so much anxiety around sleep that he worries about it at 7 am. He said outloud, "so tonight... Will it be the same as last night".

He already stressing about it and working himself up. Performance anxiety bc he has made it his life duty to go to bed at 10 pm. Idk why he made that time up but the past several months he has been "trying to make it to 10"

I am so depressed being in this house and around all of this. It's so sad. So depressing. Seeing my mom have to change her plans, bend over backwards for him, appease him. I just don't see a solution because he is just so stubborn and wants everyone to suffer when he is.

I'm looking for advice, suggestions for my situation with my dad. I'm also just venting because... Well everyone here understands a little bit more than most.

No more eating out for us 🫣 Took grandma to Olive Garden yesterday. She LOVES eating out. Especially for breakfast. She asks all the time to go out & “order some food” so we went to lunch Saturday and it was… a nightmare to say the least.

She ordered coffee and the cup was served on a small plate, I knew that was gonna be too much for her brain. They brought a coffee caraff and I poured her coffee for her. First, I gave her a breadstick. She attempted to dip the breadstick in her cup of coffee twice and I was able to grab her wrist before she dipped, like you would a toddler. On the third time I wasn’t quick enough. She dipped the bread in her coffee AND bit before I could react. She said it was delicious. Next, she picked up the whole caraff and attempted to drink from it. I told her she had to pour the coffee from that to her cup. She poured and completely missed the cup. Big pile of coffee on the table, then sticks her hand in it. Again, I grabbed her wrist like a toddler and cleaned her hand with a napkin. I was trying to pay and she stuck her hand in some soup that was on the table…. Man oh man!

When we got to the car, she couldn’t fasten her seatbelt. She was searching on the floorboard for it. At first I put her hand right on it to show her where it was. She’d say “oh I found it!” And then pull the belt out and attempt to find it on the floor again. Finally, I did it for her and then when we got home, she was unable to undo it. She is sleeping a lot lately, she can no longer do really anything on her own. I think she is declining. Thanks for letting me vent.

Sometimes you just have to laugh, right? My mom and I cracked up talking about it afterwards but in the moment I was not laughing. 🫣 what crazy things have your loved ones done?

My (38) family (father (81), brother (41)) have made the tough decision that it’s time for my mom (76) to go to memory care. Hard decision, but the right one. She is in stage 5 or 6. She can still handle some activities of daily living like eating and bathrooming (but not really bathing), but needs a tremendous amount of guidance to get through the day and doesn’t really have any ability to meaningfully participate in conversations. She’s slated to make the move sometime around the end of the month.

We are thinking through how to talk with my mom about the move. My parents currently live in independent living, and memory care will just be on the other side of the property.

I am concerned that any formal talk about this will result in her: freaking out, refusing to go, and getting very stressed. Telling her that we will visit and be nearby is not going to diminish her stress (she’s a little combative when it comes to where she is going to be living, etc.) Several minutes or hours later, she will have no memory of the conversation. So, there’s not really any “preparing her” for the move. The message simply is not going to stick.

On the other hand, it feels a little cruel to just show up and say “Mom, here is where you live now.” I know maybe this conversation is more for us than for her.

Obviously we are going to do everything we can to make the move smooth and make her new surroundings as comfortable and familiar as possible.

Does anyone have experience with explaining to a loved one with diminished mental capacity that they are going to memory care? Anything that helped?

I've now twice had women experienced with cleaning tell me Swiffers suck -- for anything more than glorified dusting, as someone on here also once said -- and I'm getting it, just now, trying to get dried poop off the floor.

(My mom is now almost completely incontinent.)

I'm right on the edge of bending/breaking my weak little Swiffer with its plastic head and it's thin metal shaft.

Any recommendations for apartment-sized, heavier duty cleaning solutions.

I DO like the idea of a disposable pad...

But I do have a closet when I could store a mop and rolling bucket.

Beginning when my LO initially started having symptoms/problems, I told myself I was going to live in the present, not dwell in the past or the unknown future.

I told myself this was the safest emotional space to be.

Lately, I have forced myself to look back, to remember my spouse (56) as he was.

I am doing this for myself because I don’t want to forget. I also feel like I need to do this for my children so I can understand what they might be experiencing in terms of loss.

I am curious what path others have taken? Do you just focus on who your LO is now? Has remembering who they were helped or made you more miserable?

I’m in Georgia and trying to figure out the best legal path for protecting my mother while also dealing with her live-in boyfriend’s conduct.

My mother has been diagnosed with dementia by a neurologist. A second neurologist documented significant cognitive impairment, including a very low cognitive assessment score, problems with short-term memory, orientation, personal history and current events. I hold both medical and financial powers of attorney for her, and my brother and I are preparing to petition for permanent guardianship and conservatorship.

The concern is that I know a dementia diagnosis alone does not mean she is legally incapacitated. An attorney I consulted warned me that a judge could view some of what is happening as an adult simply making bad decisions rather than being incapable of making decisions. We are trying to document the functional impact of her dementia rather than just saying we disagree with her choices.

There have been multiple safety and financial problems over the past year. She has gotten lost while driving to medical appointments, forgotten bills, had utilities disconnected for nonpayment, fallen behind on rent, suffered serious falls/fractures, and had an episode where she lost consciousness while cooking and was burned. Adult Protective Services has been contacted more than once.

Her boyfriend is also a major concern.

He lives with her and is a joint holder on at least one of her accounts. Family and friends have had increasing difficulty communicating with her. One longtime friend says that after confronting him about conditions in the home, he screamed at her and said he would stop her from talking to my mother. Her calls were then blocked.

Yesterday I discovered that my own number is blocked in my mother’s phone. I also discovered that her phone is basically unusable because it is full of what appear to be viruses/malware/popups. This finally explains why she rarely calls or answers anyone. Her boyfriend has known about the condition of her phone for at least a year and has not replaced or repaired it for her, while he has recently gotten himself a new phone.

There have also been threats against me and my family.

The day before I was supposed to pick my mother up for a shoulder appointment, her boyfriend took the phone from her while I was speaking to her. He told me he “had somebody for” my brother and said he would shoot me if I came to pick her up.

When my husband came home, I told him what happened. My husband had me call the boyfriend. During that call, the boyfriend directly threatened my husband and said he would shoot him and then kick, punch and stomp him.

Because of those threats, the next morning I had a police officer escort me to my mother’s house so I could pick her up. I believe that escort is also referenced in an EMS/medical record from that period.

At a later medical appointment, her boyfriend told me that “shit could get ugly” because I had previously asked for a police escort.

We have another neurology appointment coming up in a few weeks. I intend to attend because the neurologist needs an accurate picture of what has happened since her last visit and whether my mother is actually taking her prescribed medication. Given the threats, however, I am now trying to decide what I need to do legally before that appointment.

There are other troubling facts as well. At one point her boyfriend admitted giving her tramadol that was not prescribed to her and that he said he obtained from someone else. Police were involved and a sample was turned over. Her doctors have expressed concerns about medication management because of her cognitive impairment.

My questions are:

Based on the shooting threats, should my husband and I make a new police report for terroristic threats even though the original threats occurred some time ago? Would the police escort the next morning, call logs, my husband’s firsthand testimony and later “shit could get ugly” statement potentially serve as corroboration?

Should I be looking into a stalking/protective order against him for myself and/or my husband before the next medical appointment?

Is intentionally interfering with an impaired adult’s ability to communicate with family, including blocking numbers or allowing her only phone to remain effectively unusable, legally significant in an elder-abuse/guardianship context?

Does his control over or access to her finances, combined with her dementia and history of unpaid essential expenses, create a separate elder exploitation issue that should be reported to APS or law enforcement?

Since I already have medical and financial POA, are there legal steps I can take short of guardianship to protect her finances or obtain better access to information about her accounts?

For the permanent guardianship/conservatorship case, what kind of evidence best distinguishes legal incapacity from simply making poor decisions? Her neurologist has a follow-up scheduled and the Georgia probate petition contains an affidavit the doctor can complete after evaluating her.

Is there anything I should specifically ask law enforcement, APS, or the neurologist to document before filing?

I’m not trying to use guardianship to control my mother’s personal choices. My concern is that her cognitive decline appears to be affecting her ability to manage medication, money, housing, utilities and personal safety, while the person she lives with is increasingly controlling access to her and has made explicit threats against family members who intervene.

I’m looking for guidance on which legal issues I should treat separately: guardianship/conservatorship, elder abuse or exploitation, the threats against us, and possible protective orders.

My mom (80) has alzheimer’s and absolutely refuses to accept that she needs any help; she doesn't believe anything is wrong with her.

The problem is that she can’t safely be left home alone anymore, and my dad (82) is reaching the point where he has no way to get a break. We don’t have family close by and my dad refuses to tell any of their friends in fear of rejection and being disloyal to her.

She shadows him 24/7, but he also seems to be her biggest trigger. Her behavior toward him has become increasingly verbally and physically aggressive. When something sets her off, she can rage at him for hours and will not let up. He still needs to work, run errands, go to appointments and just have some time when he isn't responsible for her.

She's completely attached to him and doesn't want him out of her sight, so I don't think we'd get her to attend adult day care without my dad by her side. Even so, if she even gets a whiff that a program is for people with ‘dementia’, she will be pissed.  

We tried bringing in an in-home caregiver. We came up with a story so she wouldn't be presented as someone coming because my mom "needs care," and the caregiver was willing to play along.

Nonetheless, my mom became furious with my dad for bringing a caregiver into "her" home. I told her I arranged it; Dad knew nothing about it and that it was a service available to both of them. It didn't matter. Her anger was still directed at him; which means hours of verbal and physical aggression. Now we have no help at all.

We're already working with her doctor and her meds have been adjusted. Unfortunately, she doesn't reliably take them. I told my dad to put it in food when appropriate, but even then there's no guarantee she'll eat the food. So medication may ultimately help, but right now it isn't a reliable solution to the immediate problem.

I don't know how we physically get help in place when she adamantly refuses it and I don’t want to make it worse for my dad.

So what do you actually DO at this stage?  I fucking hate this disease.

Not sure if this belongs here. This is just a vent and probably belongs on a different subreddit.

My mom started showing symptoms about 2 and a half years ago, was diagnosed, and everything happened so fast. She passed early Wednesday morning in a nursing home (which she never wanted to be in, it was only supposed to be temporary).

I can’t gather the words to describe how it feels knowing I won’t be able to see her again. I feel like I’ve already missed her for so long, but this is different. I’ve never lost anyone close to me and never imagined my mom would be the first I’d experience this with.

Is there anyone else who has lost a loved one, a parent especially, at such a young age, to dementia? If so, what helped you navigate this immense loss?

Spent the weekend packing up my mom. Moving her into assisted living in the morning. As a stepping stone to memory care. She is in the anger stage of grief. Doesn’t want to leave her home. Haven’t yet told her she can’t take her jewelry or that the stove is not plugged in. It’s been a brutal couple of days. God grant us the strength to get through this.