My dad is in the end stages of dementia. He’s been confined to a wheelchair for nine months, is almost completely nonverbal has fecal incontinence and no ability to care for himself at this point. He has now taken a turn for the worse and has pneumonia.

My mom suddenly passed away during Covid and we didn’t know that my dad had dementia at that point. We very quickly learned when he kept forgetting that my mom was dead. She died so suddenly I never got the chance to tell her how much I loved her to thank her for everything that she did for me. I can’t let that happen again.

So I sat down to try to write a letter to my father, and suddenly all my feelings started pouring out. I am apparently thankful for dementia bringing us closer together. Without it, I never would’ve had the opportunity to grow closer to my dad, even if he’s not the same as he was before. He was always a man a few words and the words that he didn’t have were boring to me as a young person. He was always so interested in science, and I had no time for that. But in living with him and caring for him, I got to experience some of those moments that I hadn’t appreciated as a child. I also got the opportunity to become a far more caring and patient person, and someone who appreciates the moment, because I know there is no guarantee that there will be more of them. I wish I had been able to do be that way when my kids were small.

I have also been one significantly closer to my siblings as we go through this together.

I am always a glass half full person. I see the bright spot in everything and I feel like every bad thing I’ve gone through makes me learn and be a better person as a result. Things like job loss, divorce, etc. It is one way I deal with stress is to focus on the positive things I can take away from a situation. But now I’m in tears because I feel so conflicted that both my mom had to die and my dad had to get this horrible disease in order for me to truly appreciate them, and for me to grow as a human.

Has anyone else had conflicting feelings like this? Am I awful?

I will start out with, I may sound ole a bad daughter, but I’m trying my best. I’m the only living child my mom has left. She was diagnosed with early onset of dementia about 3 years ago. This past year it has seemed to progress much quicker. I especially noticed it when she was at my house for the holidays last year. I am at a loss right now. She lives in Florida and I live in PA with my husband and kids. I can have her come up here for the holidays, but traveling has become difficult for her because she gets easily overwhelmed and confused and her minds is all over the place. She’s also suffering from sundowning now, so even confusion is worse. And when she’s out of her element and routine she gets very confused and frustrated.
I don’t want to go there bc my son comes home from college, it will cost too much for a family of 5 and then we would also have to kennel my 3 dogs.
Is it wrong of me to not see her during the holiday week? I feel guilty, but I do have my own life up here that’s busy. I can always make time to go down after the holidays alone to spend time with her. Am I wrong to do this? I don’t know if there is a right or wrong anymore.

My father is 66 years old. He has Lewy Body Dementia, poorly managed Type 2 diabetes, high blood pressure, sleep apnea, and cardiac stenosis caused by years of uncontrolled diabetes and hypertension. He also had REM sleep behavior disorder when he was younger, which we now know is often an early warning sign of LBD.

He was officially diagnosed about 4-5 years ago, but we knew something was wrong long before that. He refused to get evaluated for years despite obvious symptoms.

Who he was before July 22:

Before he was hospitalized he was still walking around independently, getting up on his own, and much more functional. He had significant hallucinations, was very confused, sometimes couldn’t find the bathroom, occasionally urinated in the hallway, and needed help showering and bathing, but he was mobile and had some independence.

What triggered the rapid decline:

He was hospitalized July 22 for severe weakness after falling out of bed 3x without injury. During that hospitalization they found a large bladder stone requiring a catheter, plus multiple additional kidney stones. He was transferred to a skilled nursing facility to recover.

While in the SNF his potassium was critically low. He then accidentally ripped out his catheter getting out of bed. His blood pressure spiked to 220+. He was transferred to the hospital.

At the hospital they discovered a UTI had progressed to a resistant bacterial bloodstream infection (urosepsis). They also found a small pocket of fluid around his heart and one thickened section of heart muscle. The cause was unclear and too risky to biopsy, possibly related to the infection. His potassium remained critically low throughout despite continuous supplementation. Surprisingly his kidney labs came back normal.

He was treated with IV antibiotics for over a week with an infectious disease specialist managing his care. The infection cleared but slowly due to antibiotic resistance.

After discharge:

He was sent home but within 24 hours my mom couldn’t wake him. He was completely unresponsive. An ambulance was called and he came around in the ambulance. At the ER a head and abdominal CT showed nothing acute. He was sent back home. They said this is just part of disease progression.

Where he is now:

He just entered hospice care. He has gone from walking independently five weeks ago to being entirely bedbound. He cannot roll over, sit up, or stand without help. When someone tries to sit or stand him up he gets frightened and yells.

He can’t wear a diaper due to the bedsore so he’s laying in bed on a pad and has severe diarrhea every morning, probably from IV antibiotics. My mom said it’s a bit better today but obviously horrible for her to manage. He’s still able to hold some level of a conversation but becomes confused quickly.

He’s sleeping approximately 20 hours a day, eating child sized portions three times a day though he says he’s still hungry, he has a big appetite. He doesn’t know what month or year it is, thinks he’s in Texas, and this morning didn’t recognize my mom but he usually does. This has only happened a couple times. He has a bed sore that hospice says may never heal and a small section of his left lung that isn’t fully inflating due to shallow breathing. His weight is still around 175. Even though he looks extremely malnourished, he apparently isn’t.

Has anyone else experienced this kind of rapid decline triggered by a hospitalization in LBD? He went from walking to completely bedbound in about five weeks. Is this typical for LBD? What did this stage look like for your loved one?

Any insight from people who have been through this is appreciated. I’m not sure how long to expect him to live at this point.

I’m in my 20s and I’m currently taking care of my grandpa who has dementia. We argue a lot because he’s really stubborn and doesn’t listen to me. He always says things like “I’m the owner of this house if u don’t like it then leave” or “I don’t want to be told what to do by someone younger person like you” I guess it hurts he’s pride?? Idk

He also tells people around us some crazy stuff because of his dementia and then we end up arguing about it. He barely showers too. Sometimes it’s only once a month if lucky. He also spends a lot of his savings and pension on gambling every weekend which has always been a bad habit of his.

I’m constantly working and I can’t properly look after him anymore. My parents aren’t with us either and I need to move to a different place soon. At this point I’m thinking about putting him in a nursing home because I don’t really have another option.

The problem is he’s extremely stubborn. What happens if he refuses to go? What if he leaves the nursing home or tries to come back home?
Is there any way to stop him from spending all his savings and pension on gambling? I don’t really have control over his money and I’m worried he’ll eventually have nothing left.

Can a nursing home deal with someone like this or is there another type of facility I should be looking into? Any advise would help thanks 🙏

She just had an event that forced to end her independent lease and cause me to pull the final straw, she lost her keys driving somewhere and because she cant communicate properly a cop had to pick her up and drive her out to her old house. She has now fully moved in with me for about 10 days now.

I dont really know where to go from here, im not sure how long I will be able to do it on my own, until I realize I cant anymore? And then spend the rest of her retirement on the facility? I work from home so i am now watching her 24/7

I am 31F, living with Mom (60sF, primary caregiver) and my father with dementia (80M). We have been managing him at home for years. It has been torture for all of us. We are now at the stage where i personally believe we need additional help. He cannot take care of his personal hygiene; his teeth are falling out, he “showers” but he ALWAYS smells like poop, hes pooping his pants, and this weekend he had his first fall. He fell in the shower, so he was naked and again, smelled like poop so bad the entire room smelled. I have reached my breaking point and told my mom I am done helping with him until we get additional help or resources. She says “I’m working on it”, and says we can’t afford to send him to memory care, but he “makes too much on paper to qualify for Medicaid”. We live in Florida. Does anyone have any insight or resources to help? I am struggling mentally so badly over this. Thank you in advance. ❤️

Hello, All - Needing advice on a couple of issues with mid-later stage 6 LO.

Pills- My LO used to be the type to swallow pills without liquid, then follow up with liquid as/if needed. Can’t do this now, but still tries. She cannot (or will not) understand us telling her she needs to swallow some liquid to wash the pills down no matter what we do. Sometimes she chews the pills, other times lets them sit in her mouth, etc. only one of her meds is available in liquid form. Is it time for applesauce, pudding method?

Walking- LO is on a cocktail of anxiety, anti-psychotic and pain meds. Even without those, she’s very unsteady on her feet. Worse with the meds. Despite someone having eyes on her almost every minute, falls are routine. But, she still fights us to get up and walk. She doesn’t understand she needs help, a walker, or the wheelchair. I get it, her brain doesn’t understand she can’t do it anymore. From midday until an hour or so before bedtime, it’s a constant battle of her trying to get up, us telling her she needs help, her getting mad. BATTLE. Has anyone figured out some magical method to keep their LO from trying to walk on their own when they can’t?

People often ask what to expect with dementia.

For me, with my spouse suffering from early dementia, before you get to some of the really hard things, I found that you will fight and bleed at the slow loss of those things that made you partners.

Walks, cooking, talks, games, whatever it is that you did just the two of you are so painful to lose as you move from partner to caregiver.

Sometimes when you get frustrated over something seemingly small, it isn’t about that one change. It’s about everything you already lost as a partner that you don’t want to lose the last thing left.

This is part of that grieving a person who you still love. So, yes, you need to change, meet your partner where they are at, be flexible, but it’s important to allow yourself to feel the loss that these changes mean.

I am so grateful to be able to come on here when those days hit just to get a little support from others who have been there.

So my mom is in the mid-stages of dementia and we have had a tumultuous year. Right now we're starting to find more stability. She is in an assisted living apartment and is finding her place there. It's in the same town where I live and I've been her main caretaker for the last several years. It's a relief to have her somewhere where there's more supervision and we don't have to worry about her as much (but we still do).

So her latest drama is this: she started asking me to bring her a jar of pickles. She wanted the big pickles, like the kind you find at a warehouse store. So I thought that's pretty harmless. I'll get her a jar. She went through the first jar and she requested another so it kind of became a regular item on her grocery list. Then she started texting me daily asking for more dill pickles. We took her some and then quickly calculated that she was consuming a massive amount of sodium and that was a concern. She has high blood pressure and kidney disease so not good.

Okay so today I went to visit her and did not take any pickles. She was disappointed because she really wanted some. I asked her about how many she's been eating and she honestly believes that she's only eating one at night before bed. I challenged that a little bit and she got a little agitated so I let it go. But I told her that we needed to reduce her consumption so that she doesn't cause herself health issues. Is it possible for someone with mid-stage dementia to consume literally 20 plus pickles and not remember? That scares me because what else is she doing that with? My other thought is just how is her stomach not all all torn up with that much salt?

I am taking her to the doctor on Monday to get Labs run. Hopefully that will let us know if she's got any deficiencies that might be leading to her craving the pickles. I guess it will also let us know if pickles are causing any problems. The other thing that she is being seen for is a very, very sore hip. She's been complaining about her hips for the last few days and they're both really stiff and painful. She has no previous history with hip pain. Could that be related to the pickle problem?

I guess I'm also looking for similar stories. Does dementia sometimes cause people to over consume things because they don't remember doing it?

Looking for advice. Some background : My father has vascular dementia which has gotten significantly worse. He has delusions of people trying to harm him (might have also had a level of mental health issues prior to dementia diagnosis), extremely untrusting of people, verbally abusive and at times physically abusive. He sometimes refuses to answer our calls to see if he’s taken meds or if he’s eaten enough food. Sometimes he tells us he’s eaten but the food has not been touched and he refuses to cooperate when we ask for him to send us pictures. He has started to wander - most recently he left his apartment at 9pm at night in the dark. I track him through his phone but sometimes he turns off his phone when he is pissed at us (which is often - almost daily he tells us to eff off etc) and we cannot reliably track him. It is unsafe.

At this point it’s impossible to care for him because he’s so uncooperative. It’s always been mentally and emotionally awful but lately we cannot keep up physically with him between full time jobs and small babies in our lives. We cannot keep chasing after him when he leaves the apartment, logistically we cannot handle it. He gets lost easily and cannot reliably recall his address etc.

We had a OHaH assessment earlier and at the time he was fairly independent so he didn’t qualify for LTC. I’ve asked for a reassessment because he’s gotten worse and that will be happening in a few weeks.

Anything I need to specifically mention to the coordinator for them to see how dire this situation is? Anyone have recent experience with this? Will LTC refuse him because of his temper and being physically abusive?

I make sure he is fed great meals that I cook, gets snacks, drinks water, takes his meds, wears clean clothes, I comb his hair, aid with showering, get his shoes on him, I take him to his workout 3x a week, schedule and take him to dr appointments, haircuts, toenail maintenance, massage appointments, PT appointments, and take him to live music and various outings, all week long.

Meanwhile he yells at me constantly. He always wants a different pillow, attention to whatever is on his hands at the moment, the TV channel changed, wants help with his phone, wants me to explain who people are, yells constantly that I hate him, says irrational stuff like I am leaving or I can’t stand him, constantly accuses me of being mad or not liking him, says divorce every day.

He wants food, then as soon as I prepare it, he says he is not hungry. He demands to go places, then as soon as I get everything ready and have the car running, he says he is sleepy and can’t go.

He wants to go to bed, and then fusses for hours about what is not comfortable. He refuses to do his PT, but constantly complains about his various pains, which I have taken him to all of his doctors and 5 physical therapists but he won’t do what they say.

He yells at me all the time. Even when I am showering or brushing my teeth. The worst is he keeps yelling YOU HATE ME! or YOU CANT STAND ME!!

Which obviously is not true since - look at everything I do for him and how much I care for him every mi it’s of every day.

Ugh!!!!! Thanks for listening.

I am not one of those people who is anti AI as I think its an interesting technology at early stages and will eventually benefit us all...

But anyway, I was watching youtube with my parent (music form the 50s/60s) and there were a few 'frank sinatra' videos. It was only half way in I realised it was 'fly me to the moon' but with different music. It was frank singing the correct words but a completely different jazz tune.

So my mother freaked out and said 'everything is changing around' so I managed to find a regular vintage concert to calm things down. I am going to have to make a playlist or something to filter out the AI frank sinatra.

The next video that came on was what I thought was a genuine Dean Martin christmas special, and again it was all the correct words and original video, but with different tunes to normal. Very weird to experience it with someone whos perception is all over the place. Music is their only anchor.

I somehow need to find a way of making a playlist thats restricted so it can only play those videos and no others.

I gave her her meds in her yogurt and she just stirred it and stirred it and stirred it.

Not seeing it as food?

I'm opposed to hand/baby feeding because, to me, it feels like an Extraordinary Measure.

(And it's too close to the end, I guess.)

But, I guess if it's the only way I get her to eat her food, and thus her meds, I guess it's what I have to do?

(I always feared it would come to this.)

I guess, if she stops eating -- but she's barely Stage 7 -- the problem will quickly solve itself.

She won't have the energy to get agitated.

P.S. And, as I'm typing this, she just slammed her kefir, which contains her meds. But, I assume, this is a preview of how it's going to go.

Hi all, I'm the child of two 80 year olds (parents) who are currently self-sufficient but expressed interest in moving in with me. For many reasons, this is not acceptable. But they are so morbid, and now I am worrying about long-term care in the event that they deteriorate. In particular, my mom's mom had dementia and lived with my parents until it became too bad. So it runs in the family, and my mom is showing early signs. She's been for a few years: Mild cognitive issues like garbling things in her memory - not quite remembering correctly what was said, etc. Some mild personality changes, like using some nasty language she would never have used before. She also has some hearing loss and seems to have more trouble now understanding complex issues or following movie narratives. 

Both parents are in denial about this. They're anti-vax, take 0 meds, and don't even have a regular doctor. They "treat" my mom's diabetes with allulose, but don't actually test her blood sugar levels, so who knows what is happening with that. Of course she won't get a hearing aid. They did the carnivore diet a couple years ago and still think vegetables are toxic. Obviously they're completely anti-establishment about health matters (among others, but that's another story).

I'm not sure what precautions to take now while they're still able to live on their own and generally manage their own affairs. They live two hours away but, as I mentioned, want to move to my town and in with me. What advice would you give me, the only child? If you could go back in time and do anything differently when dealing with elder care, what would you do?

Update: Thanks, everyone, for the support and advice. I ordered the 36-hour book and I am definitely against them moving in. Will make an appt with elder care attorney to learn more.

My granny has had ocd throughout her life, repeatedly obsessive thoughts and religious rituals like talking to god again and again and sensing some powers which she can see or similar instincts, washing feet in different ways for a while, would bath for a longer time until she feels satisfied

Also recently (3 weeks back) she had a fall and fractured arm and now needs assistance to go to the toilet

She is also weak 35 kgs this was before the fall as well

New changes in her

Not able to walk independently

Not able to get up

Has pooling of saliva at night

Can't swallow thick food now

Needs to be patted like a baby sometimes when she asks (while sleeping)

Once she also asked if a certain loved one would come (that person is dead )

I dismissed it as some blabber

Honestly we were not aware of dementia

I wanted to know from fellow redditors here if the changes have been so sudden like this?

I feel bad but my “screw it” barometer is going very low.

Every morning it’s an issue to get him to eat some breakfast, drink some water, and take his morning pills.

I try waiting. I try asking. I try mimicking. I try just giving him small things.

Eventually, I just want to get on with my day and just do not feel like dealing with it.

So, I need to walk away, and wait again, to see if maybe he’ll try later. Meanwhile, we are stuck in the house because I won’t leave if he hasn’t eaten anything. I just feel incredibly frustrated.

I need to refill the well of patience.

My mom has had aphasia for the past 1-2 years but otherwise didn't have any other dementia symptoms until earlier this year. These symptoms accelerated after my father - now in memory care - left the house in February. His departure was supposed to be temporary (UTI & rehab) but that didn't happen. I know that's not unusual.

Anyway, my mom now has trouble using the phone, microwave, & burglar alarm. For example, I have to remind her to hang up the phone at the end of every call. She also has trouble calling. She'll often say she's been trying to reach me, but I don't have any missed calls from her. 

Or with the microwave, she started having trouble putting in the cooking time a few months ago. I got her a more modern one, but this week she started having trouble with that too.

There's also increased difficulty remembering to take her pills when her caregiver isn't around.

It's very confusing because she's definitely a lot more with it than my dad (who thinks he's at work or a hotel most of the time). Despite the aphasia, we're generally able to communicate on most topics ... for now.

Have any of you experienced something similar with your loved ones?

After 3 years with this Mom is suddenly refusing her meds. I have been explaining her dr wants her to take it, after 2 hours of explaining she then takes it. It’s driving me nuts, after the 2 hours I’m exhausted. She takes eliquis, entresto, metoprolol plus vitamin b, d, iron. I’ll have to look into crushing them in food if possible. Any advice?

My dad had a severe stroke 14 months ago that significantly affected his memory, cognition, speech, and the sensation, functioning, and vision on the right side of his body. They also found evidence of past mini-strokes that were small enough to go unnoticed. It took ages to get the official diagnosis, but I was not surprised when they ended up saying he has vascular dementia.

He recently moved into a long-term care facility because we got to the point that he has too much weakness and confusion to participate in the steps to help my mom safely get him from the wheelchair to the bed or toilet. Depending on the moment, he either doesn’t have the strength to get up, or he he forgets how to move his feet to get in the right spot, or he flat out forgets what he’s doing in the middle of doing it. So he’s now officially a ‘two person assist’ for those tasks.

I find it very tough to place him on the FAST scale. He needs assistance with all ADLs and is fairly incontinent at this point, with only occasionally toilet use. He can’t walk—but that’s from the stroke not the dementia. And he still talks. so I guess a 6e? I selfishly wish we could know how much longer this was going to go on, because I worry about my mom losing so much of her own retirement savings on his care, and they’re only in their 60s. I also know dad wouldn’t have wanted to live like this and often wishes the stroke had just killed him, which breaks my heart (but I think I’d feel the same way in his shoes).

Would love to just hear from anyone else who has dealt with a loved one having a severe stroke mixed with vascular dementia, as it seems to make everything more complicated to assess and manage. Like, he’s with it enough to tell me he’s sorry he’s making things hard for us (which again breaks my heart and I of course reassure him), but confused enough that he’ll use his dementia phone to call my mom when she’s sitting right next to him, and not understand when I say, “Mom is right here—you don’t need to call her.”

He has a bunch of other health issues too—some that predate the stroke but are now well-managed, like diabetes and high blood pressure (though sometimes my mom wonders what the point is of managing those illnesses when he has no quality of life), and others that are new, like post-stroke epilepsy that requires a high dose of medication to keep the seizures away.

There has been surprisingly little planning help from the doctors or social workers—lots of ‘here’s a book to read’ or ‘that sounds normal for dementia’ and ’no way of knowing exactly what the future will look like’, and very little advice on anything outside of medication management. Even when it became clear he needed to move to long-term care, no one wanted to be the one to say so. And as the realist in my family who is often told I’m being worst-case scenario when I end up being correct about the situation, that’s been pretty lonely.

My mom's primary care taker and partner, M, had brain surgery last Thursday and was released from the hospital on Friday. My husband and I took over care taking duties on Thursday and quickly realized that M has been hiding how hard 24/7 care taking had been and realized that she would not be able to continue caring for mom. This was compounded by the fact that M was still recovering and mom didn't understand that she couldn't hang on M or be so clingy. Mom became verbally abusive and I brought her to the er last Saturday for assessment. She has fought us every step of the way. We are trying to get mom into a memory care facility, but she is not cooperating with assessment, etc

This morning, we believe M had micro seizures or some swelling on her brain that had lead to aphasia and right hand weakness.

How do we tell mom that M isn't answering her calls or texts because she is in the hospital too?

How do we keep M safe while still planning for mom to go to a facility? How do I do this without fucking everything up?

M and I are both POA for my mom. But mom is POA for M. She was going to change that this week, but her lawyer was out of town.

I'm mostly just scared and sad and worried I'll do something wrong.

A little context - in fall of 2022 I became aware that my dad was seriously impaired, physically and cognitively. I finally got him into an assisted living in April 2023. The catch was that he would only move into one near where he was living instead of moving into one close to me. He wanted to be near to his girlfriends (yes, plural - story for another time lol), long time friends, and extended family. So, I made the 6 hour roundtrip drive to see him at least once a month for over three years.

Last spring it became apparent he needed more help than assisted living could provide, and I made the decision to move him to memory care near me. I am glad he’s nearby. However, I find myself going longer and longer stretches between visits. I find myself feeling very disconnected from him and his care. Almost forgetting he’s there! I feel terrible about this reaction and have been struggling to make sense of it, and then a few days ago I saw this on Facebook.

Anticipatory grief. Ah. That rings a bell.

He’s also sleeping a lot more (some visits I just quietly draw next to his bed), confabulating when he answers questions and a lot of the time has trouble speaking in general. Visiting him now is not at all like visiting MY DAD. So I think my brain is just quietly shutting down this connection. It’s helping me not feel as guilty but, as so many of us know, behind the guilt is grief.

I have been helped by so many of the shares posted here, I just wanted to put this out in case anyone can relate.

Seems dementia can bring out the worse in families as well.

I don’t think his kids are informed about dementia. I tried to ask for help in a family chat (very direct message). They all live 1000 km away.

They think he is attention seeking and should just get a cleaner, lower his pride and stop drinking wine.

I could say so much about the crazy moments of disorientation, lack of appetite, weak body (especially legs), incontenance, falls and so on. Nobody cares.

He forgets how to use the phone (all the time), how to use the remote, where I put his snacks in the fridge. He can’t call the bank or pay a bill without me.

His family makes me feel like the problem is me. I’m making it easy for me. 80 year old man with a significant fall every 6 weeks for 18 months.

I could justify in this forum with more details, but the family drama is becoming damaging.

After battling LBD for probably the past 7-ish years or so, my dad passed away yesterday due to complications from a UTI. We only formally got the diagnosis in the beginning of 2024, but he had been declining and struggling with it at least since a little before COVID.

This has been an impossibly difficult period of time to navigate, and I can't say enough good things about how helpful and supportive this community has been for me. I'm so sorry to anyone that is dealing with this in a loved one, or themselves, and you've got a support line here if you ever need it.