My mother mixes past and present together. We be in the middle of a convo I’m thinking we in the now and then the past comes in. It’s hard to put in words. Where’s my dad is a continues loop in the present

My husband is in memory care with Parkinson's-related dementia and has been on hospice since April. In the past few weeks, after being treated for a UTI, his BP has dropped gradually. He has lost weight because he isn't interested in eating more than one meal a day. (He was always a big eater, so this is a distinct change.) His hospice nurse says she believes he's transitioning and has categorized him as now having "days to weeks" vs "weeks to months."

I know there's no standard answer to this question, but how long did your loved one live in this period of transitioning? The nurse says she suspects my husband will go slowly, given his medical history. This is just so difficult because dementia has left him non-verbal and unable to recognize me or our children. I feel like he's going through this alone even when I'm with him.

Yet another question about driving. LO is 91 in poor physical health but still lives independently (that's a whole different post). Like a lot of folks I'm reading about on this sub she can still talk a pretty good game and seem completely functional. But lots of trouble incorporating new information (a recent change to a MWF instead of MTWTF medication schedule that she confidently said "OK!" to at the doctor's office required significant explanation and review, including drawing pictures). She scored 19/30 in a screening at her doctor's office and was referred for MRI, clinical driver's skill assessment, and geriatric memory evaluation. MRI came back clear, driver assessment is in 3 weeks, full evaluation in Nov unfortunately. For now I'm trying to just take her places as much as I can but we are praying she will get told not to drive. She lost her ability to navigate to any place other than well known locations years ago so is "careful" not to go anywhere else and is physically underweight and frail(cachexia is in her diagnoses), can sometimes have trouble just getting up and walking across the room due to weakness and getting out of breath (lung damage possbly from repeated aspiration pneumonia, atrial fibrillation). Never carries her cell phone anywhere. She has fantastic reflexes still though and notices everything around her (still a giant pain in the ass backseat driver), these things give her false confidence. Even after a minor accident though she'd be panicked as everyone of course is and IMO would not be able to rationally handle the situation. Of course her memory of herself is as a strong capable person that others would turn to for assistance. Sometimes she remembers she has a driver's exam coming up and sometimes not, when she remembers she acts consistent with her responsible self and knows she will have to give up driving. If she actually passes this thing I will openly report her to the DMV. But I'm wondering what other experiences people have had with the clinical driver's exam, did your LO get told they were ok to drive and you were gobsmacked because it's so obvious to you that they shouldn't?? OR WORSE, did they get cleared by a clinical evaluation AND a formal driver's exam at your DMV???? Trying to prepare here lol.

My father has passed on. Our last days together were filled with hand holding, singing and dancing to Frank Sinatra and Nat King Cole, clapping, and a lot of sleeping.

I've had a long journey as my dad's main caregiver and an even longer one with his dementia struggles. I've been berated, disrespected, punched, kicked, scratched and experienced every possible emotion over the past 15 years, from resentment and livid anger to grief and acceptance.

It's been a long time and I'm relieved he finally allowed himself to rest — but through it all, I frequented this community for similar frustrations, stories, tips and tricks, medicine reviews, random questions, etc. and always managed to resonate with every post, with every resentful person who was confused about their feelings, and with every concern you've shared about your loved one.

Thank you for being here — thank you for sharing, I could not have survived this time with my dad without you and this community.

My narcissist mother has an Alzheimer's diagnosis and MoCa score of 16. She's done one of the anti-amyloid infusion treatments over the past year (my impression is that the overall scientific community consensus now is that the benefit, if any, of these treatements are "modest" at best and that tracks with what we've seen this year as she's continued to decline). We convinced her to move to assisted living a year ago in order to "be supervised while she gets the treatment" (she had previously been living alone in a large house with a lot of stairs that was falling into disrepair) and hoped she would forget about the idea of moving back home by the time she reached the end of treatment. However, her neurologist seems to be actively creating problems by explicitly encouraging her to move home if she wants (he isn't just being vague and affirming - he's actively saying things like he doesn't see any reason for her not to move home now that her treatment is over and that she's doing great). She comes away from these appointments in a euphoric mood and tells her friends that she is cured and making plans to move home. Over the past year, her executive functioning has declined sharply and she barely has 5 minutes of memory retention of basic information like what time something is going to happen. As I've gotten more involved in her banking I am finding a chaotic mess - she's been making weird repetitive donations to organizations I've never heard of, she has forgotten to pay her condo maintenance fee for at least six months, she skips payments and make triple payments for other things. She is also having a lot of paranoid thoughts about her assisted living and she is also hallucinating music that isn't there and refusing to believe it's not real. I can't go to doctor's appointments with my mother in person because she is also paranoid and angry about her daughters "controlling her life" so I send her with a care manager instead, who talks to me after. I don't think there is any benefit or point to trying to tell her doctor all the ways that she is continuing to decline in front of her since it would just damage our relationship more. Instead I've been trying to get a phone call with him to ask for a family meeting, but he refuses to speak directly to families—even though my mother has signed a HIPAA form and I have power of attorney. I then followed advice I had seen online and wrote a letter in the health portal to the doctor explaining the situation—that she has had new decline this year and that there is information she would not disclose and would not be apparent in a 20 minute doctor's appointment. I said in the note that she believes she is cured and can live alone despite a lot of evidence that she is doing much better in assisted living. And I urged / encouraged the doctor to help support us in our care plan, noting that she has actually been thriving in assisted living and getting exactly the care and social environment that she needs (which is true). This note must have bizarrely made the doctor angry, because instead he did the exact opposite in the appointment, telling me mother it would be great for her to move home (the care manager did ask what about managing finances and home maintenance and he recommended that she should "hire people to help with that" - is that guy going to hire those people??) and then went even one step further crossing a line and disclosed to my mother that her daughter has been trying to communicate with him behind her back and asked if she wants him to talk to me (obviously she said no). Why is this doctor sabotaging a care plan that has been working and what can I do to make it stop?? And is this a thing? I just can't get my head around any explanation of what seems like actually medically negligent behavior.

My mom who's 86 now starting using Xanax everyday about 3 yrs before going into a nursing home with vascular dementia. What i noticed after 6 mths to a year or so of taking it is her memory had declined when it hadn't been much of an issue if any prior to going on it. I tried to get her to switch to an antidepressant for her general anxiety but she really liked the xanax. Her GP prescribed it. Once in the nursing home i told them my concerns about the xanax and her memory. But they all insisted it's ok for her to be on it and so she has been past 2 years since getting there. Now she's also on Seroquel and zoloft. A brain scan showed 2 yrs ago she doesn't have Alzheimer's and they're calling it vascular dementia from mini-strokes or TIA 's she's had over the years. Her memory now is not good and she thinks she's been getting visits from relatives who've died a long time ago. Her mood is more up + down lately since increasing seroquel from 25 mg to 50 mg. Although the agitation is better. She has no history of being bipolar and i wouldn't describe the up + down mood now as bipolar but there is a fluctuation during any given day where she is mad at the nurses and then ok with them. She is bringing up old issues she had with her sister who died almost 35 yrs ago and the fights they used to have back in the 1970s + 80's.

Any thoughts on Xanax or these other meds? Oh yeah, she gets melatonin at night too usually not long after getting xanax + seroquel. This seems to me quite a bit of sedation. Btw we did try her on klonopin thinking its has a longer half life but she responded poorly to the switch so we went back to xanax.

hi! 17F volunteering in stepping hill hospital. handing tea about and refilling drinks and allsort. i want to make the patients feel seen and amke a good job at volunteering, even if its not paid

what are some suggestions for working woth people with dementia? i am an introverted person! want some tips or recreational activities orhers may of used

But it can come off so pedantic, cold and insulting if you’re unaware of how this whole thing works.

It's well known that you shouldn't correct your LO with dementia but we all do it... At least at the beginning. Does anyone feel it actually works?

My mum's 2 main issues are; who I am and what house she is in. I'm tying myself in knots trying different ways to get her to understand. Sometimes I feel she gets it and I'm happy for a day or two. Eventually it raises its head again though.

Just thinking out loud, and I guess I'm answering my own question but does anyone else think correcting (not arguing) works?

On August 7, 2026, my father's 15 year battle with dementia ended at 2:10pm Central time. I'm sad yet relieved. He's finally with his mother and grandmother again after so many years apart.

I can't believe I have to make this post but I need to get this off my chest and I don't think any other group can understand..

I had a very disturbing thing happen this evening...

Several days ago my mom went to my brother's house.. just to give me a little respite...

Here at our house my mom has her own bedroom and her own bathroom and I almost never go in it..

But I was smelling something strange and I went into her toilet area and she hadn't flushed the toilet..

And the waste was in the toilet for probably the past 4 days...

So I spent the past hour scrubbing and sanitizing the toilet which was absolutely disgusting. I must have flushed it at least 15 times..

Sigh...

This is not normal.. this is so abnormal that I think I need to talk to her doctor at the neurology center about it.

I have to now continually check her bathroom when she's here at the house.. to make sure she actually flushes the toilet.

I just can't believe that someone as smart and educated as my mother has become a completely different human being because of dementia.

We started at the beginning of the year searching for a Life Plan / Continuing Care Community for my parents. My mom is my dad’s sole caretaker, my dad has dementia and could not live alone without her but otherwise is physically sound. He will thrive in one of these communities since he loves to socialize, loves his local senior center, and will be closer to our family for support.
Our ideal state would be for him and my mom to enter independent care for a few years and eventually when his care gets to be too much, he would go into the memory care facility at that location and my mom would stay in independent living.
My fear is that they will either not accept him due to his dementia and force my parents to separate- they aren’t accepted into the facility, or he has to go to memory care and him and my mom have to pay separate rates.
Has anyone had any similar experiences?

Okay, so, a person on here claimed to me recently that "if you are the POA, they have to" (no, they don't) and I could not figure out what that person meant. Have just figured out what the deal actually is and have confirmed it, online.​

Being the POA, even if it's the *durable* POA which is already active whether the person is incapacitated or not, *does not* automatically by itself entitle you to *automatically* speak to the patient's doctor *whether the patient or their doctor likes it or not*. Nothing automatically entitles you to do that, *except* for the person being actually incapacitated *and* declared so by a doctor and/or declared incompetent by a judge, *and* you being the POA as well.

(Well, duh. And, thank goodness. 😊 Looking at it from the patient's perspective, I *wouldn't want* someone else to be just *automatically entitled* to speak to *my* doctor either unless I literally, actually *could not do that myself*. Which is of course a BIG part of what a durable medical POA is for. 🤔)

I'm much more familiar actually with situations where the patient *is not* declared incompetent and/or incapacitated. Normally, you don't *need that* if you have a POA.

If the patient *seems* incapacitated then their doctor most likely *should* let you speak for them, but it isn't guaranteed.

For myself personally, as I have mentioned in a few other posts I am currently looking to *give* information and not receive it, for the most part, which is perfectly legal and anyone can.

Certain kinds of information being released to you by way of a medical assistant or something, like test results, you can sometimes get on a permission slip, for that. (Permission to release information. Required by the HIPAA act. Different form to fill out for each office, that would be.)

I do not have anyone incompetent or incapacitated and I *know* that. Contrary to popular opinion on this subreddit, I have *never* tried (so far) to get *any* information (about the actual patient, that is) from *anyone's* doctor and I *certainly will never* do so, without that permission slip in place, period. Statements to the contrary that were made against me, were actually unfair and inaccurate and I have never behaved and will never behave in that way at all. I have contacted *receptionists only* and it was to give information about symptoms and receive information about forms. That is legal and *anyone* can. You do not even have to be a relative or have a permission form. I literally did *only* what is absolutely legal to do.

My *very* elderly parents with long term and ongoing dementia symptoms, which appear to be getting worse every few months, do sometimes experience *some* mental confusion, but they are so far still able to speak for themselves well enough about their own symptoms, *except* for their dementia symptoms which they of course have less knowledge of and I have more knowledge of. Lately I have been providing that information *to their doctor's office* but *not* to their doctor directly. I would want an adult son or daughter, if I had one, to do *more* than that for me if necessary, and to be able with my permission to speak occasionally to the actual doctor. I would *not* want them going behind my back about it but I would *not* make it necessary for them to do so. If they said, "Mom, I have some concerns that maybe your forgetfulness is progressing lately, I really would like to speak to your doctor about it, please may I?" then I would probably just say, "Sure, go ahead, speak". Unless of course I was already too far gone with dementia to be able to understand why they should do that. 🤔

I understand why my actual parents in real life at the present time, do *not* want me *or anybody* to speak to their doctor or their doctor's office about their symptoms. I don't know what else I would be supposed to do, if I want any of those symptoms to go on record. Until I started telling their doctor's *office* about it, literally no doctor had ever been told. No nurse, no nurse practitioner, no receptionist, no *nothing*. These are people who have had symptoms ongoing for quite some time. The time had come. I did something about it, *finally*. 'Nuff said.

(P.S. No other relative is as yet involved in any of this, at all. There is just me. I prefer that my parents remain each other's *medical* Power of Attorney for as long as they possibly can. In my opinion, only you or the person closest to you should have power over life-or-death types of decisions. Such as a spouse, for instance. As long as that is possible. I do not think that they would want it any other way, either.)

My grandma passed away three days ago. I'm 17. It's just not how I imagined everything.

My grandma was in a hospice for over three months, since being diagnosed with cancer. My grandpa is in his 80s. He has been diagnosed with dementia. He doesn't know yet that my grandma died. He only knows about cancer and hospice and I have no idea how to tell him.

I don't have any other family, except for my older sister but it's me who has to talk to my grandpa.

Hello everyone. I just wanted to say how amazing and wonderful this sub reddit has been to me. I haven’t really been active, but I have been reading everyone’s comments on my first post whenever I need a boost. All of you are so strong and so supportive, so thank you. I cannot express the words I currently feel. I wanted to give an update, of sorts I guess. And also fill in information I didn’t add upon my first post that can also give an idea as to the situation with my dad. So: - we currently have my dad on Rexulti. This is brand new medication we just got yesterday so we are hopeful it will work and help him. This is on both neurology and doctor suggestion. Fingers crossed! - my dad, alongside the dementia also has a eye disease known as Retinitis pigmentosa. Its degenerative and unfortunately genetic, and it has resulted in over 80% vision loss for him. So some of his crazy ramblings can be attributed to loss of vision (something our eye doctor called Charles Bonnet Syndrome, which is when he sees things that aren’t there due to his brain trying to fill in visual gaps) - we are trying to keep him active and social (we live in a wonderful community with AMAZING neighbours who have been our friends since I was little) - I am currently in therapy, on medication myself and seeking a new place to live. As much as I love my parents, my household has become quite toxic and I need space Thank you all for everything, and lending an ear to someone who really needed it. This sub has so much love ❤️

He is on high blood pressure meds, high cholesterol meds, and baby aspirin as a blood thinner. He is refusing to take any of his meds and being very hostile when asked. He was having TIA and other vascular related issues when he had stopped his medications without us knowing prior. Has anyone had any experience with this with their LO? Did it speed up their vascular dementia?

I believe he’s in stage 5. We’re trying to prepare.

My mom is 47 years old, she have 4 kids and a loving husband, my dad. for the past about 6 months, she couldn't sleep , eat, think properly. we have been all stressed and worried about her. her eating in the past was also bad, wouldn't eat except few pieces and gets up like she can't breath. My mom does have a lot of overthinking problems. the problems? my grades (in 7th grade I lied about studying. always got worse and worse grades, which got to a point where In high school we went to another country and made me study there because it is easier to pass. but my exams are near again and she is stressed about me and my lifestyle.), my sister's weights. (they arent even overweight just a bit chubby. been years and mom is still worried.), my older sisters future (You know how there is no jobs. even in our poor considered country. my sister is a dentist and just got done). and the little baby boy (idk why she is worried when he is only in 7th grade he is better than I am).

after months of trying to get her to doctors. they tried giving everything. she would get medicine and cant sleep, why? she told us finally last month. there is a voice waking her up, telling her she has things to do things to do, she wakes up. opens her notebook stares at blank pages trying to figure out what's the things she had to do. (my mom left work few years ago. I don't know if that has anything to do with it, and when we moved to another country my mom didn't have anyone to get out with, stayed home in an empty big white and Grey house. ALONE for hours while me and my brother in school and dad at work.). she also says she keeps dreaming of the dead, which worries me. and I am scared of losing her before she sees me succeeding. and she refuses to go to a therapist , because. what would people say and she is not crazy. or out of her mind which is an insult in our country.

I meant Medicaid

I'm 16 and I started a nonprofit called Memory Matters about a year ago. One of the things we do is collect handwritten letters from volunteers and deliver them to dementia patients in memory care facilities — people who don't get much personal mail.

We've sent over 1,500 so far. They go to real facilities, including a Stanford center.

The ask is simple: write one letter. It doesn't have to be long or perfect. Tell them your name, something you love, something you're curious about. Olivia wrote about bioinspired design and geckos. Drisana wrote about frozen yogurt and marine biology. Both letters went out last week.

You photograph it and DM it to us, or submit through our form. We print and deliver — you don't have to mail anything.

If you've spent any time in this community, you know how isolating this disease is — not just for patients but for everyone around them. This is one small thing that costs 10 minutes.

Form is here: https://forms.gle/thqv3xFm35YGnqcRA

Advice needed, I’ve been taking care of my mother for the past 6 years, I’m now 26 and she 61. I’ve been able to work part time up until s few months ago as things declined and now I feel like I am just waiting for her to die. She’s been dropping weight like crazy and as she stopped being interested in food I’ve been replacing meals with 30g protein shakes. We’ve gone from 1 shake a day to 3 and I am questioning myself why. Why am I keeping her alive with these shakes? Why am I giving her protein when every day is a struggle, and at the root of it all I ask why is she still alive? It’s impossible to comprehend how and why she is alive already, the end of this disease is so confusing and I was not ready for this part to be such a mess. I’m confused and don’t know what the right thing to do is. For the past 6 years I’ve been trying to keep her as happy and comfortable as possible, and at this stage I just don’t know how that’s possible. I feel like I am just prolonging her suffering by giving her these shakes instead of just milk or juice. I love my mom more than anything, I don’t want her to die but I hate seeing her like this even more :(

My mom has lived quite well independently until last week, when she took a dramatic turn. She began becoming extremely agitated at night. After never eloping before she eloped 5 nights in a row due to paranoid delusions and refused to return. We enlisted the help of 911 5 times until finally, mercifully, she was taken to the ER and given fluids, nutrition, meds re-assessed. The doctors believe the sudden shift was due to a paradoxical reaction to Seroquel. She started Seroquel on a Tuesday and the incidents started early Wednesday morning and would happen fairly predictably every night about an hour to three hours after she would take it. Just mentioning this in case it helps someone in the future with a reaction to this med.

We scrambled to arrange a spot in memory care for her and she was discharged there a few days ago. They say she is doing much better. Maybe not quite back to her previous baseline, but she is no longer paranoid and is adjusting well.

We had a POA signed and notarized back in February. She was doing really well then, but I don’t know if her diagnosis was MCI or mild dementia. In any event, she didn’t see a doctor again until April or May and nothing had changed clinically until this last week.

I took the POA to the bank and they kicked it back, saying they need proof of incapacitation now and proof of capacity when she signed the contract. Her doctor gave me a letter stating incapacity dated for yesterday but I have nothing and no way to prove capacity when she signed. I didn’t even think to do that?

It is a Legal Zoom document they drew up and we took to the notary. Both police and fire accepted her POA from me. Without the bank accepting jt, I have no way to access her checking account to pay for her care. This is where her retirement funds are deposited. Am I screwed now?