She was almost 12 years into her journey, when I started mine. And has been a great resource for me.

Her watch ended a few months ago.. and I have been pretty generic when she asks about my LO, because I really don't want to bring back reminders for her.

She scheduled a meeting with my husband and I (we work for the same company). Basically gave us her story (most we already knew), and handed us a small binder with her most trusted careworkers, her contacts to our local alzheimers society, how to deal with x,y,z... it basically had a FAQ page(s)

It was what she made for family when she needed help, and added to as the journey progressed.

I get that each person is different, but she basically handed us the dummies guide to dementia.

I think it was really sweet of her to spend the time and money printing out all those pages for my husband and myself. And I hope ot helped her heal from her loss in the process.

I used to post very regularly in this subreddit venting about the progression of my mothers early onset dementia, from when she was first diagnosed in 2023 until her eventual admittance into a nursing home at the start of this year (although it was long overdue from when she should’ve been in one). I stopped posting afterwards as a huge weight had finally been lifted off my shoulders. This whole nightmare started when I was ~10, and I started posting about it when I was 14, and now I am finally 17, turning 18. Since my mom’s admittance, life has been a lot more mellow, and I’ve started to feel some sort of a sense of normalcy.

But at least lately, I’ve been thinking about my mom a lot more. I tried visiting frequently when she first was put in the nursing home, but at this point it’s been nearly 3 months since I’ve seen her. It feels so wrong because I know she is still alive, and I really miss her so much, but I can’t bring myself to want to visit at all. The nursing home is 2 hours away and i’ve come to the point where…I just don’t see a reason to visit? She’s so far progressed that she can’t speak besides word salad, but at the same time last time I visited she held my hand and was looking at me, so she might’ve recognized me? I know there’s a human still in there, but she won’t remember no matter how much I visit, and it just hurts me more and more. It feels so easy to pretend she is dead, but then I remember she is still alive and I practically just abandoned her. I feel so much guilt but I can’t imagine that i’d feel any happier if I visited her either.

I don’t know what the right thing is to do, but I guess it’s easier to just forget. I’ve blocked out a lot of what I saw and went through, and seeing my mom again just reminds me of it all. But what kind of a daughter am I to abandon her? I just wish she could die so she could be at peace.

He's gone. Finally. It was a rough 16 days of hospice.

We are all free.

Thank you for everything! All of you have been so informative and supportive.

I'll sing your praises as long as I live. Best info ever is right here.

Alzheimer’s disease and dementia have been discussed for many years through news articles, television programs, books, and personal experiences. Yet some people still do not understand that these conditions generally worsen over time and that a loved one, such as my mother, is not going to recover.

For example, when I mentioned that my mother was having difficulty getting in and out of bed, the person I was speaking with seemed surprised. When I asked why, they explained that they had not realized her condition would continue to decline.

This is nuts and there must be more to life.

Gerontologist, maybe?

Neurologist/neuropsychologist is too far out on appointments so far, to actually do any good.

Hmmmm. 🤔​

My mom (87) has dementia (moderate to late stage). I am her sole caregiver since I am able to work from home most days of the week and will rely on nursing aides once or twice a week when I have to go into the office. She always made me promise never to put her in a nursing home so I am trying to hold out as long as possible. I was very scared last week when she didn't recognize me and demanded to see her daughter (who is me). She became quite agitated and loudly yelled and called my name with me standing in front of her. I pointed to some family photos and held them up beside my face. After an hour or so, she seemed to go back to normal and recognized me. What are some helpful strategies for dealing with the situation when my mom doesn't recognize me and becomes distressed? I thought of saying something like 'so-and so' is at work and will be home soon? Insisting they are wrong may cause further distress. It's so heartbreaking because my mom said that the worst thing that could happen would be if I abandoned her.

My 79 year old mom has early dementia, likely alzheimers. Some days she's just forgetful and repeats herself a lot. Other day she thinks it's 30 years ago and wonders why we're not home. It's kind of insane the difference. She is always able to physically take care of herself. She is very clean. Makes her bed every day. Always looks nice. But her time and place orientation is often very messed up.

We put down a deposit for her at an independent living facility, that has CNA services. She seems to do best when she's around people and keeping busy and in her current condo, now that she doesn't drive, she has days that she won't see anyone in the winter. So we're hoping with all the people and activities and a CNA checking in once a day to make sure she's taking her medicine (aricept & memantine) she could get a year or two there before needing assisted living/memory care.

We looked at assisted living places. She doesn't fit there. She is in very good shape. Walks for miles, does chair yoga twice a week. She also doesn't fit at memory care yet. It's just so hard.

The independent living management has seen her memory issues, (the repeated questions, etc) but they haven't seen her when she's confused about where she is.

I'm not sure what the point of this is but I'm just really exhausted from trying to deal with this.

Noticed another strange trend from my mom who my brother and I are quite sure has early stage dementia. For months she's been claiming that "AI" is taking over her phone, which I wasn't sure what to make of until yesterday. She sent me a text around 9am which was an image from her morning walk, with a caption about how the scenery looked different in Autumn vs Summer. Around 8pm that evening she sent a strange followup message:

"I didn't write that weird caption about the walk this month at the park here! Weird. AI has taken over. I dislike it!!"

I think I figured out what's happening: she's forgetting earlier texts she sent, then when she rediscovers them (or discovers them for the first time) much later in the day, there's no possible explanation in her mind other than "AI must have written it."

I made a previous post on this sub about her sending us repeat texts, but this is a slightly different case of denying that an earlier message was ever sent. It's a paranoia that an exterior force is taking over her phone. How do I explain that it's not AI? I understand that sometimes it's not worth it to deny something that isn't true with a cognitively impaired person, but in this case I'd rather not reinforce deluded paranoia. I'm at a loss for what to say, especially because this is very likely to get worse over time. Should I simply ignore it?

My mom has been in memory care for about a year and a half. She has been anxious and depressed for decades, and is understandably even more so now. She's maybe late stage 5, early stage 6.... can dress and bathe, with infrequent incontinence issues and no short term memory.

However, she does often remember that I sold her car and house. I told her before I really understood how much damage that could cause.

If you're reading this, and have to sell your LO's things to pay for their care...

Do. Not. Tell. Them.

Anyway. The facility has suggested hiring a companion for her. It's not a requirement (at least, not yet). I'm just not sure. She does not remember that her kids visit, but she does enjoy the visits... most of the time. So on one hand, it would give her more one on one time with someone. But on the other, I'm certain she wouldn't remember it, and! it would eat into her finances.

Have you hired someone to spend time with your LO in memory care? Was it worth it... or not?

Hi. I’m mid thirties with a mom with moderate Alzheimer’s/dementia (almost certainly mixed with vascular). A few weeks ago I took her keys. My stepdad was in the hospital and then rehab, and she was extremely confused and wanted to try to find him despite not being able to remember where either the (very local) hospital or rehab were. So the situation lent itself well to having the keys go “missing.”

Now my stepdad is home and my mom is beside herself daily about the driving. She loves driving so much. And of course it represents independence and autonomy/agency, as it does for so many elders. She’s so upset. Apparently she keeps telling my stepdad she’s going to walk to a hardware store to get new keys or something, and she may well try that.

So he at least wants me to tell her the truth about her keys. But I don’t know how to have that conversation. I am scared this will have the most damaging toll on her of anything so far. I also feel cruel.

For context my mom and I were always really codependent and enmeshed. I parented her in many ways and have a lot of chronic trauma from those decades. I’m working sooo hard to have strong boundaries. But her recent decline has taken an enormous toll on me. On bad days I can hardly eat. I’m crying and on the verge of panic all the time. I feel like eventually the weight of this whole thing is going to cause me to collapse, physically or mentally or both.

I don’t know if I’m seeking advice or solidarity or empathy or what but anyway, here I am.

My mother has become less and less mobile over the last two years. Walking with a cane, to walking with a walker, to using a cane and walker to transition to a wheelchair, to barely taking a few steps with them to get into the wheelchair to now seemingly being unable to even stand for more than a few seconds. Even with the lift recliner and her holding on to a walker and trying to get her into a wheelchair she slides to the floor and we may as well just give up and remain there until the end times. Her whole body’s natural state is to constantly slump no matter how I try to bolster her up or beg her to sit up.

The dementia care giver support group moderator suggested a gait belt, though I said she has turned into a Weeble. Her waist, hips and bust are one mass and there’s nowhere for the gait belt to secure tightly and hold on to her and it just slipped up her body. This was after she already said it was to tight. She’s so awkwardly proportioned and she doesn’t seem to make adjustments to balance herself on her feet, and then any support I start to give her she lets her body go slump and it’s like trying to hold up a three hundred pound bag of wet sand.

My voice gets louder, tighter, higher and more rapid - literally begging her to help herself and instead she defiantly does the opposite and I’m working three times as hard. She’s angry and upset with me because I’m yelling at her, despite explaining afterwards that we are in an emergency situation and I need her hear me and to follow direction. Meanwhile I’m already pushing down my emotions trying not to become hysterical.

It’s almost three which means I’ve been trying to get this to happen for 6 hours today. This was after making her promise last night when she wouldn’t get out of the chair to go to the bathroom that we would do it first thing in the morning. So add the two hours last night I tried to rally and prepare her to go. All this and I still haven’t gotten her to the bathroom and I need to clean everything up. She’s finally in the wheelchair resting and recovering, and I’m going to cry and take a nap, though I should take a shower in that I’m drenched in my sweat and her urine.

Mom's favorite CNA pulled me aside today and said that her (Mom's) incontinence and hygiene was starting to morph into Old Lady Smell. She recommended picking up scented powder for Mom to use on her bits to avoid that smell.

I'm not a big powder person...I just use baby powder. Does anyone have a brand or scent suggestion to keep Mom smelling fresh?

Thanks in advance...my heart is with all of you ❤️

Taking my mom, I think she’s stage 6D, to have a comprehensive cognitive assessment on Monday. They told me it will take 4 hours, and that for a lot of the time, it will be just her and the doctor. I’m really nervous. I know it will be difficult for both of us, but she needs to do it so we can get the help we need.

I’m curious how it went for those of you who have dealt with this before. Any tips? Thanks!

If you are new coming in this group has been the best for help. No judgement and lets you rant, scream and cry. And let it all out.

I know I still have a long ways to go. But if it wasn’t for this group I think I would had met daddy a long time ago.

I know everyone says it the disease. (Speaking in my case) I think it just enhanced what was already there. No one wants to believe a parent can be that cruel. And I suppressed many and I mean many memories that are now just coming to light.

I went through many years of therapy for myself. Now to relive new aspects that I had suppressed makes it easier to be made aware. Yet hard because I wished they would had stayed hidden.

It’s not that I don’t love my mom I just, well yeah. She’s everything I hate and fight against. For example I see how she treated everyone equally in the family. But me. It was always, you’re the strong one, you don’t need our help. We can’t leave others out they might feel sad. You don’t have a right to feel sad.

I can’t have one good day in my life without her trying to ruin it or make it about her. It’s not just recently but my entire life. Living in Groundhog Day over and over. And over.

It’s tough helping a loved one. It’s tougher when other siblings, friends and family can’t be bothered.

I’m saying this because you are not alone. I thought I was. My entire life was, “I’ve never heard of that. It’s just you. Toughen up. Just leave.” And the list goes on.

The one who told me treat her like a toddler, it helped. For a bit. The ones who told me I’m not alone. I wept with relief. The stress isn’t lighter but more tolerable. As sad as that sounds.

I can’t thank you enough for the words of encouragement. I’m just taking it one day at a time.

And in a way I’m gonna do what my sibling is doing. Just sit back and wait and not lift a finger.

Oh I remember when the last time someone tried to intervene and she was questioned she said, “my daughter is living with me so I’m not alone.” And that got whoever questioned off her back because they believed I was her caregiver. She uses me when it’s convenient. But she still plays the widow card. I don’t blame her don’t get me wrong. But she hated daddy and he had done everything.

My mother was admitted into a dementia unit around the end of July. It was EXTREMELY difficult for me to make the decision. Since then, things have been ok. She seems to be adjusting well and the place is clean, but has terribly communication. I am her durable POA.

Apparently, last evening she was slapped across the face and injured on the wrist by another resident. It was stated she was NOT the aggressor. She’s fine, but I wasn’t made aware of it until her visiting nurse practitioner called me when I was off work at 9pm last night.

When I called the facility this morning, the nursing supervisor brushed it off. She stated, “she is fine today and doesn’t remember the incident.” OK?? AND?? Just because she doesn’t remember doesn’t mean she deserves to be assaulted????

I called the local police to file a report and waiting to hear back. Facility is located in Connecticut.

Has anyone been in position? How is it handled? I feel TERRIBLE for my mother and the guilt is overwhelming.

Thank you.

I just called to make my 3 month follow up and was informed that my practitioner is leaving Cleveland Clinic, I was informed tears on the call. I’m going to wait and see if she is just transferring to another provider, I hope so.

Here’s my issue, and please be kind, I am not racist, I have documented auditory processing and encoding issues.

I have issues with auditory processing, specifically with certain accents, and speech types, for example early before diagnosis I would use subtitles to help encoding of what I was hearing before I realized their was an issue. I use subtitles during virtual meetings, etc to.

Here’s the problem, I’ve now on to my second new provider in an hour, the first doctor, I watch a video and struggled with him, now am in a similar situation with the second.

I am based in South Florida, and being a British transplant 20 years ago, this type of issue is just amplified. Any suggestions? I told Cleveland Clinic the issue, but Neurology are just putting me with first available.

Just posting for no reason. Not looking for sympathy or reassurance.

Spouse was recently diagnosed w/ LBD (same thing Robin Williams had). Then, almost a week to the day, she woke up and couldn't move her leg w/o physically thinking about it. Put it off then went to the ER a few days later in case it was DVT. She was admitted and tThey did a bunch of tests to rule out strokes and all that.

Eventually neurology came back and said it was a symptom of her LBD and was called a Parkinsonism or something like that. Also hand tremors and other incidentals.

Recently (within the last month) her memory is going. Like, really bad. "Do we have only one kid?" I thought she was joking because the second one was in her room all day. "No, I seriously don't remember if we have two." She forgot to put on pants one day. Other things.

She had problems for years and I would tease her about her tremors as Parkinson's but she, like her father, were diagnosed with essential tremors. So whatever. Then she would forget things and, years ago, diagnosed with early onset dementia.

Well, now we know what the true cause is and I had more or less identified it years ago but it was "misdiagnosed" because "You're too young to have Parkinson's".

Regardless. She was supposed to receive a rollinator from the hospital's case management. Still waiting three weeks later; we bought our own in the meantime. Couldn't get a handicap placard because "your mobility issues might be temporary".

Lots of other things. I guess I'm mostly posting this because it seems like most other posts are about parents or older people. My wife is in her mid-50s and conceivably had issues in her late 40s that no one recognized.

So, Gen X, be on the look out for abnormal symptoms and compare them to the various Parkinson's related symptoms. There may be more going on than doctors think.

We're joking about it because, well, that's how we deal with things like this. Like she should apply at Lowe's to be their paint mixer, or at a bar to handle "shaken, not stirred" requests.

Does anyone have any good tips on how to help an adult who is nearly 90 years old and has Alzheimer’s disease, she is becoming very dehydrated because she refuses to drink water. What would be an effective way to get her to consume water or other liquids, considering that she doesn’t remember absolutely nothing and doesn’t understand anything, It has been a real struggle to get her to drink.

Hello wonderful community. I am stepping in for my stepmom who’s away on a week long trip, taking care of my dad. He’s had a “mild cognitive decline” diagnosis for many years. He may have a more advanced diagnosis now that I’m unaware of. Regardless, we know there are memory issues. It’s been getting progressively worse over the last year, and I’ve been able to see this through family visits and what not.
Now this week in care giving I’m seeing it’s worse than I thought. It’s not dire, but I’m seeing just how low his energy is, how he gets confused (tried to go into our neighbors house thinking it was his) and couldn’t find his friends house to pick him up for golf. He’s terrible with communication and gets really upset when he loses things. He gets overwhelmed easily.
Right now my stepmom is his primary caregiver but I see it takes a significant toll on her and their relationship is strained.
She and I have had light conversations about seeking outside help like a weekly or daily companion.
It feels like a facility is likely within a year but I have no idea how that is navigated when your spouse is not ready to live in a facility.
I’m not sure what I’m looking for in this post but just wanted to share my experience. I had all the feels today and burst out into tears since it’s so jarring to come to this point in life with your loved ones. I really feel for everyone in this community. ♥️

I feel lost. Ive only had 2 doctor appointments for my mother with a geriatric doctor. The first one I mentioned my concerns and they did a mini cog, and some testing and referred to an MRI. They handed me a dementia pamphlet and that was it. My mom hated the appointment and I didnt take her back for another year, with symptoms declining, they wanted to see her again before doing the MRI which we did a few days ago, it was just a general checkup. Meanwhile she cant answer a single question and shes talking jibberish, they didnt mention anything to me besides following up with the MRI. What happens next after the MRI is done? Does anyone ever actually help you?

And I also wear the same T-shirt and shorts and the spring summer winter and the same ball cap because if I change the T-shirt, she would not recognize me

https://youtu.be/zhuPIXRtBq0?is=P9GgHwhrEWWcnlcO

They don’t know why yet, but say hormones is a hot topic. Also interesting that hearing loss is always mentioned as a contributing factor.

Both parents have had falls, injuries, etc.

Neither even knew enough to call 911 in an emergency.

Evidently, taking care of themselves by themselves, only actually worked for so long.

I was used to them being independent, so were they, and they did know how to call for a ride from a ride service in a minor emergency.

That may have changed.

She is diagnosed with mild to moderate cognitive impairment (dementia) in her list of diagnoses in MyChart.

He never actually got diagnosed with anything like that so far as yet but that is because he still tests high on the cognitive testing and hasn't yet had other testing.

These are people who have had dementia symptoms (mild to moderate) years and years. They remained independent for an extremely long time.

Familiar story I do believe except for the unusually slow progression.

There is no way that any of this is just normal aging but they hadn't had the testing. Symptoms include several sorts of classic dementia symptoms. They both do so much showtiming that it hardly shows in public. All of a sudden that is changing and assorted people know in person. Their doctor knows based on what he's heard from me. My parents still would be thrilled if no one knew except them and me. My mom doesn't even want me to post about it here and my dad doesn't know that I do that.

For those of you whose family members may be basically pulling the wool over your eyes, and their own, and other people's, be warned. That wool can disappear and just vanish into thin air quite suddenly.

Neuropsych evaluations can take up to a year or so to actually happen so get on the wait list for such quite soon if you need to.

I'm a little self-conscious posting here as no one in my family has a confirmed diagnosis, but I've been growing concerned about my mother's cognitive state for about a year and I'd be so grateful for any insight from folks further along this path than I.

My mom is 63 and she's had some big life changes recently (moving house and being generally more nomadic as she tries to spend more time with mine and my brother's children). This has coincided roughly with the start of the cognitive decline that I, my brother, my father/her husband, and other relatives have started to notice. Generally, she's much more prone to catastrophizing, frustration, forgetfulness, and she's more dependent on my father to handle problems. She has a lot of trouble with keeping track of logistics (like the schedule for the next day) and decision-making. Conversations are tough, because what she says is usually related to a keyword the last person mentioned, but it's not always following the overall shape/direction of the conversation the rest of the room is having. There've also lately been some disconcerting moments that throw me for a loop. Like, she asked me how I handle the last step of making a quilt. I told her I've never made a quilt before. She said "okay, but who do you go to for [finishing a quilt]?". I think I had to repeat myself 3 times (very clearly) that I have never in my life made a quilt before she accepted it and move on.

I'm honestly unclear on where the line between "senior moments" and "early signs of dementia" lies and at what stage it's appropriate or helpful to say something to her or recommend she see a doctor. I think where she's at now is within the spectrum of normal for some people, but it's not her normal and the rate of change is worrying me. I wasn't even thinking about this 12 months ago, and now I can't stop noticing things that don't seem quite right. I don't think she's going to respond super positively to being told I'm concerned about her cognition, but I'll certainly have that talk with her if there will be any benefit for her long-term cognitive health.