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.

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.

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.

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 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.

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 grandpa was diagnosed with dementia about a year ago and has gotten so much worse since his initial diagnosis which has in turn caused my mom and I to take away a lot of the things he used to enjoy or use. The car was the first thing to go with his diagnosis (for obvious reasons) but there's been a lot of things we've had to do like add an AirTag to his keys, a similar tracker to his wallet, etc. Anyways, it's gotten to the point where he has no clue how to use his iPhone anymore. He even forgets to turn it on on most days and I told my mom 1. He's going to end up losing it 2. He has no clue how to use it anymore 3. it's a waste of money paying for his phone plan when he's not using it. The other day, I went to broach the idea of switching to a flip phone and he said he didn't want to. I asked him to call my phone and I'll give him credit he was able to. But then he couldn't figure out how to end the call. When I asked him to hang up, he started deleting emails then went into his calculator and started deleting numbers there, then the photos app. So, I made the decision to buy him a flip phone. Set it up today and he likes it and it's a lot easier for him to use. Idk why but out of all the things that he's no longer able to use this one is bothering me the most.

I think part of it might be because I remember in high school when I first switched him to an iPhone. He didn't want it cause he liked his flip phone and hates change. I was basically like well too bad you're getting one lol. Then he loved it. It's kind of sad for me to see the reverse now. I got him caught up on tech and kept him up to date with all his devices. First with a MacBook, then an iPad, then iPhone, and finally an Apple Watch. He got rid of his MacBook long ago as he solely used the iPad but now everything else is gone due to his cognitive state minus the iPad. He had an iPad Pro but I had to swap that out for a cheaper iPad last year because he was destroying the battery. Kept forgetting to charge it, unplug it, etc. And within a year of me buying it for him, it dropped to 92% battery health. I ended up taking it for myself and getting him a base model because at least that's a cheaper predicament to replace if he does destroy the battery.

It is odd to me that he is still able to use his iPad but can't use the iPhone anymore but I guess dementia just doesn't make sense. There are a lot of other things about his illness that are hard for me to see but for some reason this one is hitting me today.

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.

My wife(52) was diagnosed Early onset alzhimers about 6 months ago. She is still in the mild stage so mainly short term memory loss and anxiety. She looked at me today and said that she is sorry that our lives together will be cut short. What do you say to that? I will cry tonight when she goes to sleep.

We hired an aide to help care for my grandmother and one of the bigs things we wanted them to do is help with hygiene. She won’t brush her teeth properly or at all unless promoted and there is resistance. She also won’t let them bathe her. She just keeps insisting she’ll do it herself. My mom has helped her shower and wash her hair but we need help with getting it done twice a week. She also is going to need help wiping/toileting in the future. However the aides they sent don’t seem to want to go against her on this or figure out a way to ensure she does the basic hygiene stuff, wash hands after toileting, brush teeth etc even by just hands off directing. They like to do the companionship part. When we hired someone we thought we would be getting someone who had a way to get them to perform hygiene but it seems like they rather to the companion part. Anyone have any suggestions?

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.

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.

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.

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 (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.

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.

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 ❤️

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?

First: I apologize if this is a little jumbled and confusing. Naturally, my mind is just all over the place while trying to navigate services. Please bear with me.

Grandfather is approaching late stages of dementia. He was hospitalized about a week ago with a severely impacted bowel. My grandmother has been caring for him with the help of two PSW’s for just under a year now, and he has taken a turn for the worse since entering the hospital.

Essentially, he has become increasingly violent in the hospital. The hospital staff are encouraging my grandmother and the PSW’s the just bring him home once his bowels are sorted, but I think his behaviour has cinched this idea. Also, her home has stairs for every room (a bizarre setup), and he will be in a wheelchair, so it is not really an option for him to return home in any way, shape, or form. Further, the stairs to the front door alone are absurd. Sure, ramps could be built, but my grandmother is so burnt out and his behaviour is so erratic that it would not be safe whatsoever for him to go home even with the constant help from PSWs and us. He is over six one, 270 pounds, and extremely strong. Further, my grandmother is five feet tall. It is obvious that he needs specialized care now.

The hospital is pushing for him to be sent home, and we fear that my grandmother will give in even though she does not want this. We have asked my grandmother what we can do, but of course she has decision fatigue, and it puts her in an even harder position to make choices about the next steps and to advocate.

How do we navigate this? We are happy to speak on her behalf if she would like, we just genuinely don’t know where to start and we don’t know how this system works at all, it’s just so sudden. We have been helping this entire time of course, but him entering the hospital and completely plummeting has now brought us to these huge choices very suddenly and our minds have not yet caught up. Literally last week we had dinner together and he was fairly coherent, he just needed his diaper changed several times but that was business as usual. Now, he hardly knows who we are, he is extremely violent with staff, and he has lost the ability to stand. He even attacked my mom, which was devastating (she is fine physically, but… yeah).

The hospital says the best they can do is bump him up on the care home list, but they cannot tell us how long it could be. Further, we were advised that someone would meet with my grandmother to assess the house and assess him, but this person does not show up on the scheduled meeting times. The hospital has told my grandmother that they will not keep him either, so he has to go home. It’s all so confusing and we don’t know how much power we really have. All we know is that we want to do right by my grandmother and grandfather.

All support is greatly greatly appreciated. This group has been a beacon in a very dark time. Love and light ✨

Hi, I just started working at a memory care center. I care very strongly for the people I care for, but I'm conflicted on what to tell them when they ask "when do I get to go home?"

I try not to lie to patients and I always treat them with respect and dignity. No baby talk, no stupid questions. They are adults, not children, so don't talk to them like they're children.

So, I usually tell them the truth. "this is your home" "you live here" "I'm here to help you." I'll also answer any follow up questions should they have them, but usually they're just horrified.

I know it's easier for the caregiver to tell them something along the lines of "you can go home tomorrow" because the patient will just say "oh ok" and then forget about it. But is that better for the patient? I'm asking because I do want to do what is best for them.

I would love to get some suggestions and/or feedback from anyone who has more experience.

Thanks!

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!

Good morning.

My husband’s neurologist has diagnosed probable LBD as all the red flags are there. He has now had an MRI and bloods taken, along with an ECG. We have another meeting with the neurologist in a week’s time to “see if there are any other problems”. Suddenly two weeks ago my husband started having a decent nights sleep. Yes, he still gets up two or three times a night but is always able to get back to sleep. There is a definite change in him, he is brighter, more active, although still forgetful. Has anyone else experienced this with their partner? Is it a good sign, perhaps it is very early onset? Thank you everyone. You are a kind supportive group. X

My LO is somewhere in the middle of her dementia journey. Undiagnosed because she flipped out and refused to go to the assessment appointments. She lives alone in a rural area and is otherwise very healthy, although she doesn’t eat as she should. She cares for her dog and livestock, manages her bills and whatnot and attends a work out class 3x/wk. She cannot hold a conversation, vocabulary is completely shot, totally makes up stuff, and her personality has changed 180 degrees from the person who raised me.

She got a DUI in April and her court case was a couple weeks ago. She has to do community service by mid December or turn herself in to serve 5 days in jail. She also has to complete DUI classes. Navigating this is a nightmare. She is incapable of managing it. Her license is suspended (we are working on her not getting it back—but it’s a non-issue right now). In her DUI class orientation, they told her everything is confidential and to not even share her schedule with anyone. Seems ridiculous and counterproductive to me. I found an acknowledgment form for virtual classes, signed by her and the instructor. I called the place to let them know there is zero possibility of her completing anything virtual. I was told “we can neither confirm nor deny she is enrolled here.” SMH.

In speaking with her, she thinks she can do 2 or 3 hours of community service 2 days a week. That won’t be enough for completion by the required date. I’ve tried explaining it a dozen times and drawing pictures. She can’t remember from one minute to the next how many hours are required. She has the ability to bury her head in the sand when it comes to anything she finds distasteful or disturbing to her. Avoidance is her MO.

She says she’s terrified of jail but she isn’t getting serious about the community service. I can’t force her any more than I can force her to go to the doctor. I’m losing patience with her and stressed out by this situation that I have minimal control over.

I (65) in consultation with my two adult daughters have reached the conclusion that I cannot sustain being my wife’s (65) primary caregiver, and more consistent care, and better socialization would be provided in a memory care facility. She has Early Onset Alzheimer’s and Parkinson’s disease. I also believe being placed in a facility will make her feel disposed of. She needs 24/7 monitoring, She is socially isolated. The stairs in our house are an increasing risk for falling. She isn’t eating well and is losing weight despite being on an appetite stimulant.

Our thinking is to place her in a facility early next calendar year. How should we prepare her emotionally and physically for the move? What is the kindest approach? Tell her a week in advance? Earlier? Don’t tell her?
She knows she has these diseases, and cry’s about her lost capabilities. She had a career in budgeting and accounting, but now can’t compose emails or texts.

Looking for thoughts to consider as my daughters and I navigate this difficult decision. Thanks in advance.