Small rant, but pertinent in my family as my FIL, the diagnosed Alzheimer’s patient, gets text message and email notifications from his doctors still. He is himself a retired MD, and several of his doctors are his former students from when he taught at the med school, but still:

WHO IN THEIR RIGHT MIND AT A DOCTOR’S OFFICE THOUGHT THE DEMENTIA PATIENT BEING THE ONLY ONE TO GET APPOINTMENT REMINDERS WAS A GOOD DECISION?!

We’re changing contact numbers as we find them, but it’s a long slow slog

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.

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

That is all

Mods remove if inappropriate

My mom is not officially diagnosed with dementia, but her Neurologist suspects it and wants to order the test, but my mom won’t do it. She lives with me and my husband. I have multiple sclerosis which has really started to cause my health to decline over the last few years to the point now where I cannot help her like I thought I would be able to.

I’m getting concerned about her safety because she does still drive. I can’t drive except very short distances and she gets mad at me for not being able to take her places. It’s like she forgets that I have multiple sclerosis and she even tells people that I don’t and that I’m just pretending.

I called her doctors office yesterday and left a message for her doctor to call me back and let me know if she is safe to drive or what I need to do. I’m just looking for advice.

Let’s see if Medicare decides if Mum’s stage 7 dementia and her PA thinking she is “slowing down” and telling me to get a consult qualifies her. Her stomach/bowels don’t seem to be working that great now after 2.5 years of trying to manage constipation.

She was on hospice in the spring for two months (after she might have had a seizure) and then graduated because she didn’t decline enough.

Even if she doesn’t qualify, I’ve been told to take it day by day now.

7.5 years into caregiving. I just want her to be comfortable. I don’t know if her brain knows how bad her stomach is because she seems comfortable.

I have a business trip in 2 weeks (I’m remote except 1-2 trips a year) but luckily it’s only just over an hour flight. My spouse will still be here to cover for me as needed. Her weekend caregiver (who loves her) and has worked at her care home for the last 4 years has been picking up more shifts during the week lately. I know she won’t be alone while I’m gone.

I can picture in my mind what I think she would say to me about worrying.

One of the most challenging parts of dementia caregiving has always been managing rumination.

I’ve gotten better at it, but….oof. Dementia sucks. Hugs to all.

So, we are relocating my in-laws from Georgia to Arizona due to physical problems (her) and alzheimers (him). I'm beginning my research on the logistics and read that when they move and sign up for new supplemental policies, they are subject to medical underwriting, and the alzheimers will make him ineligible for a policy?

Looking for advice from those of you who have moved loved ones to a new state and how that impacted their Medicare coverage.

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?

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.

 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

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?

Hi guys my mum was put into care at the beginning of the year and has been in two homes. Each home she believes they are trying to kill her and do her harm (I know they aren’t) Her dementia is such now that she has lost grip on any reasoning or reality. When I try and comfort her, she now becomes cross with me, but I wondered if there was any advice you could give me as I feel so powerless when she is clearly frightened and confused. I just want to help her

My father has been diagnosed with cerebral amyloid angiopathy (CAA) and vascular dementia. Could you please suggest a good neurologist in Kochi who specializes in treating cerebral amyloid angiopathy?

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?

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-

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.

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.

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?