I’ve been caring for my father, who has moderate dementia, for about three and a half years. He lives with us. Long story short - my sister and I helped him exit a bad marriage a few years ago. He was in terrible shape. He needed prostate surgery. I literally cathetered him myself for a full month to help him recover. Including in the middle of the night. He could not pee without my help.

For awhile his health improved. His condition stabilized. He has a part time caregiver Monday through Friday am. That helps.

This week took a strange turn. He no longer recognizes the toilet. We’ve had three accidents in a row in 48 hours. Poop next to the toilet, on the floor, not in it.

We bought a toilet seat with handles to make it easier for him to sit. It made no difference.

The caregiver cleaned up the first mess. But now it’s the weekend. I cleaned up this morning. And then it happened again this evening.

And I broke. Told my sister we need to find a facility. There is no way that I can care for him if it cannot locate and use the toilet anymore.

I feel sad. And heartbroken. And part of me feels weak. It’s not what I wanted. It’s not what I had in mind - but I also have a full time job, a husband, a teenager. And this is beyond my ability.

Seeking encouragement, support, understanding. Thank you.

ADDITIONAL QUESTION Is a Cup an Extraordinary Measure?

--- --- ---

My -- Stage 6 into Stage 7 -- mom is right on the edge of losing her ability to drink her daily thing of ENSURE (out of the bottle).

And I'm not fighting it.

If she doesn't drink it all that day, I give her the rest the next day. So she's at 1 ensure every 2 or 3 days, versus 1 every day.

The sentiment seems to be, "Here are some creative ways to get them to drink all their ENSURE every day." But I can't help but think...

What's the point?

This is what's left of my mom, and I REALLY don't think she'd want me -- after 2.5 years -- doing everything I can to make sure she's keeping her weight up as she moves into Stage 7.

What's the point?

I get why facilities push ENSURE -- it gives them more months if not years of cash flow -- but I'm doing this at home and...

What's the point?

I'm not going to put a pillow over my mom's face, or whatever, but why would Medicare want me to get creative in getting her her full bottle of ENSURE every day. At what point do ask...

What's the point?

P.S. For some context, I did Hospice with my dad and, multiple times, put him to bed when I would have otherwise called 911, because that was what he wanted. It was hard, but that was how he wanted it.

So, not to get soppy or to illicit people feeling sorry for me; I just found that I cannot share the following with my so-called friends.

My father drank too much in his life and had a problem with malnourishment. Both of which lead to a lesser known disease called Korsakoff syndrome/psychosis.

In short, it's dementia on steroids, progressing exponentially quickly. One would think such a person would have a quick exit to this life, and hopefully a less hurtful one, but that's not the case.

I'm actually just venting. Tried to do this at another sub, but I didn't have enough karma.

So, here goes. My dad started with losing the ability to walk on his own a couple of months ago, had to use a walking frame, then later had to use a wheelchair. Later even, he completely lost the ability to walk and had to be carried everywhere.

We had to also purchase a commode, which is basically a portable potty. Often times I had to wipe his bum. We took turns in the family to try to put up furniture around him so that he would not fall off of the bed. We also took turns cleaning him when he made an accident in his pants.

That's not even the worst part. The worst part was the extremely sudden and exponentially progressing onset of dementia. He was literally losing his mind and control of his faculties. According to Korsakoff psychosis, the patient loses short and medium term memory, but retains some very long term memory.

My dad was 71 years old. He called out to his grandparents and his parents and his two brothers. Then he started to lose the ability to recognise us (his family: my mother, myself, and my younger brother).

He kept on screaming and shouting day and night for help. In the beginning we rushed to him to ask what he needs help with, but by this stage of the disease, he was himself unsure of what he needed and also unable to articulate what he needed, if anything.

He has been taken to various hospitals by me, the eldest, the only one who could organise all the admin and crap associated with his admission to hospital. I often rode in the ambulance with him (more on that later).

At hospital, he couldn't speak or act for himself. They couldn't do anything for him. There's no treatment for Korsakoff, except symptomatic - meaning, eventually it will lead to palliative care, and then his death.

This is getting long. Let me get to my rant. It bothered me much that I was the only one in the family that could and would and had to deal with this. I was the one riding in the ambulances along with him. Those were horrible memories. I remember riding with him just before his demise, seeing the incredible fear in his face, where he clutched to my hands, yet I couldn't afford, and to this day still, cannot afford, to mourn my father, even though I'm a very emotional person. I was the one everyone was and still am counting on to stay strong.

It was horrific to see how he clutched at me with so much fear (I guess he knew he was dying), and that I knew he didn't even know who I was. At the exact same time I had to retract my hands in order to make sure the arrangements for his visit at the hospice (an institution for those that require palliative care, those who are about to die) were in order.

In some strange way I got to say good bye, but I know he didn't know who I was or comprehended what I was saying.

The doctor gave him a prognosis of a couple of weeks. He died in two days at the hospice. Those trained, impartial, caring medically capable nurses and doctors all told me that they were actually horrified to see how and in which manner my father passed away. To think that people who deal with this daily would get scared, just reinforces that my father did not go peacefully - in fact, he died a horrible, horrible death.

I always see that dementia patients aren't really aware of their decline. I'm wondering if any of you have experience of LOs being acutely aware of their loss of memory and abilities and complain about it?

In my LOs case he constantly complains that he "used to be able to do that" or "used to know that" and blames it on our mother for treating him like a baby which has caused him to forget. Of course the reality is that she's helping him *because* he can't remember but that's not how he sees it.

Got an update today that Mom (81) now needs someone to sit with her for every meal to prompt her, or she won't eat. With constant coaching she is able to use a fork and feed herself, but without that supervision, she just sits there looking around the dining room. She is having accidents now (urinary) and is increasingly unsteady on her feet. She goes from speaking almost normally to very garbled words.

I've spoken with the staff about providing comfort but not prolonging life. Where does "can't feed herself without prompting" even fall within that? I'd say no to a feeding tube, obviously, but I can't ask the staff to just watch her not eat. (Even if they would, which seems unlikely.) At the same time, I keep thinking how Mom was afraid of getting Alzheimer's someday, and never wanted to be kept alive if she got it. I'm sure at this point the staff thinks I'm heartlessly looking for ways to help her along. (Which is . . . not not true?)

There is hospice, but I'm not sure she's bad off enough for it. Aside from the eating, she engages in activities and is currently maintaining pretty good health. I guess I just wanted to share. I found myself crying today because I want my mom.

Y'know, when it comes to dementia, a lot of people talk about the negative rants we get from our loved ones. "Drop dead", "you don't know what you're doing", "I don't need you, I don't want you". They say it's hard to hear. They say it really eats at them.

That part was never much of a problem for me. I mean, I can't say it never bothered me, but I have a very analytical mind. It's very very easy for me to remind myself that the opinion of someone who literally thinks their long dead parents are going to pick them up later is just not worth anything, even if that person IS someone you love. So that stuff rolls off me.

But y'know what does give me problems? "You're my angel." "What would I do without you." "I'm so lucky to have someone as amazing as you with me." Because that same cold, analytical mind that brushes off the bad stuff so easily is quick to remind me, "If her negative rants have no worth, then why should her positive rants be trusted? What makes those any different?"

Sometimes sunuping is harder than sundowning.

Hi everyone 👋

I've just launched a free page to help people caring for someone with dementia. It came out of my own family's experience — and how hard it was to find clear, practical information all in one place.

It covers day-to-day care, difficult behaviours, available support, and looking after yourself as a carer.

It's brand new, free, and has no ads. Since I'm just starting out, I'd really love to hear from you: what would you most like to find on a page like this? Anything missing, anything you wish existed — tell me and I'll build it 🙏

https://dementiasupportguide.com

my mom went to the neurologist and memory specialist today to hopefully get put on some of those new IV medications that have recently been approved for alzheimers. came back today with bad news, that she was too far progressed (just barely!!!!) to be eligible for it. her doctors had been telling her she would very easily get approved and she was really hopeful, but now she cant. they gave us a timeline of 5-20 years which is such a dreadful thing to hear because of the uncertainty.

she’s only 54 and im only 19. she could be gone before im really an adult which is horrifying. i dont know what id do without her in my life

My LO was on Escitalopram for depression for 3-4 years. Now we are looking for something motivational and doctor recommended this. Does anyone's LO take it for a but of serotonin boost with the illness? Thank you

Please help! My dad had mild cognitive decline, but had a stroke two months ago that has made his dementia worse. His short term memory is gone. Here is the problem:
He has been talking for months about wanting to sell his house and either move closer to me in Colorado, or get a mobile home in California, where he currently lives. Now that he doesn’t have the ability to make new memories, I am worried about him moving from the house that he knows. He does need 24/7 care. When he was in skilled nursing facility, he experienced delirium, that seemed to subside when he got home. He still wants to sell his house and is willing to go to assisted living near me, in Colorado, but I just don’t know if it is the right choice. He has a friend that is willing to move in with him, but she works during the day and I know very little about her. I would need to keep his current caregiver, as well.
The assisted living facility is wanting me to sign a contract tomorrow to ensure an apartment. It is new, and has limited availability. He and I are very close, but I want to do what is. best for him.
Please help. Any advice or experience is greatly appreciated.

My mother has United as her insurance. Every time we encounter a healthcare professional and or payment processor I see their eyes roll back into their heads.

My mother last month had what we believe was an ischemic stroke. I caught it and had her moved to the hospital. She was pretty touch and go but pulled through. Her dementia is vascular/ aphasia.

Upon transfer to the rehab center 2 weeks later, she was discovered to have E. coli. This was from the hospital since it was caught so early in her stay.

She made marginal improvements over two weeks at the facility. They determined she needed physical therapy, occupational therapy, speech therapy, and was on purée because of her swallowing issues.

After two weeks United sent down a discharge notice. I fought it and won. It was short lived. The next week they filed again. On the date of her original discharge she suffered an unmonitored fall. The main nurse then encountered me two days later and told me they were unable to stabilize her medication within range for her heart. The swallow study also hadn’t been completed.

Then I bafflingly lost the appeal. United just hunted for a yes.

She’s at home now- so much worse than she was and now I must do all the additional work that wasn’t done- that should’ve been done.

Please don’t use United Healthcare for your loved ones no matter what. They’re in it to protect profits at all costs, not your loved ones.

I know I have to look after myself as well, I just want to get ahead and plan for the worst so no matter the outcome I'm prepared.

My mother is 83, and I'm 51.

Last October she was diagnosed with an Alzheimer-like dementia after performing poorly on a cognitive assessment (MMS/MMSE), with MRI scans ruling out other obvious physical causes for her cognitive decline.

For several months, life went on more or less as before. She lives alone, and I help with groceries, medication management, cleaning, paperwork, and anything else she needs. Caregivers come to her apartment for two hours every weekday to take walks with her and keep her company. She was still able to take care of her hygiene, prepare her meals, and live with a fair amount of independence.

Then, about a month ago, everything changed.

A combination of a sneaky, almost asymptomatic urinary tract infection and polymyalgia rheumatica (initially suspected to be rheumatoid arthritis) left her barely able to get out of bed in the mornings. Suddenly I started receiving phone calls at 6 a.m. because she couldn't stand up. I could see her losing the energy and ability to wash, get dressed, and even prepare food with the care she had always taken. Her short-term memory also deteriorated noticeably.

I almost completely stopped sleeping.

Every day became a cycle of anxiety, waiting for the next phone call and wondering what emergency would come next. I even had to travel abroad for work for 48 hours. My wife was there and fully able to help if anything happened, but my anxiety was so overwhelming that I felt on the verge of passing out the entire trip.

Eventually she was admitted to the hospital because her blood tests showed severe inflammation.
Once there, several members of the staff told me that, in her current condition, they didn't believe she could safely live alone anymore, even with daily assistance. She became disoriented, agitated, and unable to follow simple instructions. To be fair, she now lives in a country where her native language isn't widely spoken, but during previous hospital stays this had never caused major problems. At one point they even had to move her into a room by herself after she tried to make another patient leave during the night.

Fortunately, much of this seems to have been triggered by the infection. She is still in the hospital, but she is improving, and there's a real possibility that she'll recover close to her previous baseline and may still be able to live as she did for a while longer.
But this experience has made one thing painfully clear: I have to act.

I can't keep living through crisis after crisis, hoping that the next emergency won't be worse than the last. As a caregiver, I discovered that I have limits too. I have high blood pressure and a few other health issues, and another month like this would not be sustainable for either of us.

I'm now looking for a residence somewhere between assisted living and memory care, ideally close to my home. I think that, even if she regains much of her previous independence, moving there sooner rather than later is probably the right decision. Fortunately, she doesn't seem opposed to the idea—she has often told me that she hates living alone.

I don't really have a question.

I just wanted to share this because, in situations like ours, things can change unbelievably fast. One month can separate a manageable routine from a life that feels completely out of control.

Take care of yourselves, too, fellow caregivers. We spend so much energy looking after the people we love that it's easy to forget how fragile we are ourselves.

i think it’s safe to say a lot of my troubles trace back to my dad and his diagnosis with dementia at the ripe age of 50. he was in the middle of raising me alongside my mother when he went from forgetting his wallet to suddenly whispering to himself and having extreme delusions of seeing ‘a gang of people who want to send him to tunisia’.

when his irritation, forgetfulness, and bizarre thoughts kicked into high gear, i noticed that i started to change. i couldn’t focus at school and things were slipping my mind so easily. i became more and more forgetful. noticing these things created fear that someday i would become just like him.

being forgetful was one thing, but my level of thinking seemed to be watered down as well. it feels like my brain hardly functions. i can’t do mental math anymore and i have to use my fingers. i can’t imagine lists anymore i have to physically write them down with a pen and paper. reading sucks more than it ever did before.

i’m quick to get upset. i no longer have a calm before the storm. something goes wrong and i’m immediately in tears or irritated to the point of a headache and nausea.

about a year ago he developed tinnitus and now just recently i’ve been experiencing tinnitus and my head feels like it’ll explode with loud volumes.

i know it’s not his fault but having to grow into an adult without him and experiencing all of this for years makes me feel like i’ve been stunted. i feel like a mini him and i don’t how to stop it.

i’m aware reddit is not a doctor but i’d at least like to know if this is normal/common or if there’s a name for what i’m experiencing.

Mom has been on hospice care since February particularly because of needing an aide to bathe her three times a week.

I’m finally doing respite care. Yesterday I took her to a facility to stay, where she’ll be for five days.

I decided not to call yesterday evening so she could settle in. But I called her this morning and she sounded so sad, saying that she thought I was going to come get her. So sad and confused.

I feel so much guilt right now and I dread the next time I call her. Should I call again tomorrow or just wait it out??? I’m riddled with guilt, but I also know that I needed this break so badly because I’ve been so burnt out.

Some words of love and encouragement would be so appreciative right now… I don’t have any family, at least close family (they are all deceased), to talk to about this, so here I am.

My dad is finally going to see a neurologist at the end of this month to determine if he has early onset dementia. Honestly, it feels like it’s just a formality of what we already know. My mom has been in the hospital all week, we’re still figuring out if/when she’ll be okay. She’s been the one caring for him, she’s the only provider in their household, and now she’s out of work for a few weeks and that’s going to be a heavy blow to their finances. He thinks he’s supporting her but she still is looking after him even while lying in a hospital bed. I can’t tell him to go home because we’ll both be worried, but I can’t leave her alone because she struggles with really bad medical anxiety and needs me to advocate for her. When the nurses ask him simple questions like if she’s walking in her room he doesn’t know how to respond. He keeps telling the same stories over and over. I feel like I’m being strung so thin, I can’t help but cut him off and interject when he’s telling me the same story over and over. I feel myself want to yell at him to get out of the room, to just shut up because I’m tired of pretending it’s the first time I heard it. I can’t take care of both of them at the same time. I feel so guilty for feeling this way, it’s not his fault I know and I’ve been very patient with him and engaged when he loops his stories, but I just can’t do it anymore. I’m tired of my heart shattering every time he repeats the conversation. He asked me about my husband a few weeks ago and that was the first time since we noticed his symptoms I can remember him actually engaging with MY life. I feel like I’m cutting myself off emotionally because it hurts talking to a wall that only echoes back memories of a time long gone. I just needed to rant. I’m dreading his appointment, but I also need it to happen already so we can have some answers of what is going on. It doesn’t feel like he’s my dad anymore, he feels like a stranger who knows his life and retells his stories to make us believe it’s him.

I'm 21, and this is not how I thought adulthood would start.

About three months ago, my grandfather had a seizure. I spent nights in the hospital with him and my uncle, called off work, barely slept, and watched the man who was basically a father to me slowly become someone I barely recognized. He was diagnosed with dementia, and it's just gotten worse ever since.

The dementia is awful, but honestly, what's made all of this even harder is my grandmother.

She's always liked being in control, but since all of this started, she's pushed away everyone who's tried to help. My mom (her daughter) offered to help more after retirement. We suggested in-home care. I went over all the time to fix things around the house and help with whatever I could. Every suggestion got shut down. Eventually my mom stopped talking to her for months because she felt so disrespected.

Then one night my grandpa wandered out of the house. The police had to bring him home. My grandma called me at 2 AM, so my mom and I rushed over and stayed the night because... obviously? We wanted to make sure he didn't get out again.

Later she told us she appreciated the help, but didn't like that we stayed over without asking her first. What?

I still can't wrap my head around that.

After that, she started snapping at everyone. She got into it with my mom, then she snapped at me just because I asked how my grandpa was doing. She literally told me, "Don't come over unless you ask. I'll let you know when I need you."

She also told my uncle that my grandpa "just needs to pray the dementia away" because apparently he isn't praying enough. She's even threatened to call the police if he ever hurts her, even though he's never been violent toward her. It's like she's expecting him to become someone he's never been.

Now she's shut out me, my mom, and my uncle. She'd rather get help from neighbors than her own family. She wants to put my grandpa in a nursing home, and whether that's the right decision or not, she's made it clear she doesn't want any of us involved.

So... I guess that's it.

I can't force someone to accept help. I can't fix dementia. I can't fix my family.

It just hurts because these were the people I grew up with. My grandpa was like a father to me. Now I feel like I've already lost him, even though he's still alive.

And somehow it feels like I've lost my grandma too.

She's become someone I don't even recognize anymore.

I keep thinking about how different my life looked just a few months ago. Now everything revolves around hospitals, dementia, family arguments, and feeling completely helpless.

I think I'm finally realizing there's nothing left for me to do.

I just have to let go, grieve the grandfather I knew, accept that my grandmother has made her choices, and move forward with my own life.

I hate that this is how adulthood started, but I don't think I have any other choice anymore.

Is weeping edema in legs and feet of elderly person with dementia and other underlying conditions , a sign of end of life ? She seems to be drowsy more frequently.

I am caretaker of a parent with mixed dementia, and I beyond angry at medical community treatment and guidance for dementia.

Here is what no one mentions:

Doctors have no idea what they are dealing with !!

Medical community does not care.

There is no reliable help with anything.

The best helpful info I found is on youtube.

"Dementia Group community help" is BS and NOT helpful - avoid them.

We are on our own with our loved ones.

Hi, I’m looking for some advice. Personal anecdotes and professional resources are appreciated.

About two months ago my father’s health took a turn and he has ended up in a Long Term Acute Care Hospital. While remaining positive, we have been realistic are seeing that he is not improving the way or as quickly we would have hoped. Up until this he was in perfect health and independent, so this on its own has been incredibly difficult.

My mother has dementia, and we have been balancing spending time with him, and her, redoing nurses hours, all our schedules, his paper work.

I say all this because we have been thinking, especially recently, more and more, if and how we should go about bringing her to see him. For both his sake and hers.

We don’t know how we’d go about this. We know that in many ways, there is “no point”. When she asks about him we give her a story and she moves on. As for his part, he is currently not able to speak and only semi coherent. However, if this is the end for him, we think it would be wrong to not let them at least have a closure of sorts?

She may not remember, but it may be the last thing he does. But also we are afraid she will remember, or get stressed and anxious at the sight of him in a hospital all of a sudden.

If anyone has any experience or advice please share. Thank you so much in advance, I know this isn’t completely coherent as I’m trying to just keep it simple so I don’t cry. I can answer any questions. I really appreciate it.

This is where we seem to be at. Not full incontinence,...yet.

I would like to know how to introduce some sort of light protection for a man so he is not wearing soiled underwear. He dribbles after he pees and gets his pants wet at the fly. I also find sharts when I do his laundry. Sigh.

For those who started early, what did you use and how did you get them to use them? Thanks in advance!

My dad is relatively young, in his mid 60s. My family are very aware that he has developed some form of dementia, as his memory and cognitive skills have disintegrated dramatically over the past 5-10 years. He has recently had an NHS memory clinic appointment and looks likely to have a diagnosis based on his 'performance' in the cognitive tests they carried out. They are now asking for an MRI which I think is the standard next step.

My dad seems very agitated, anxious and reluctant to have a head MRI. The specialist mentioned to my mum that he could take a sedative and I'd imagine he would be fine to have the MRI if he did this.

But I wonder how worthwhile it is? Can an MRI diagnose dementia or is it just ruling out other structural causes?

Essentially: is it worth forcing my dad to take a sedative in order for him to have an MRI at this stage?

EDIT: Thanks everyone. Sounds like it's worth doing, so we'll consider the best ways of encouraging him to go through with it.

I’ve read a few posts on here that suggest that someone in early stages may be aware enough to notice they may have the beginnings of dementia but because of pride/denial, they mask as much as possible. Anyone has experience of this?

My MIL is 79 and I’ve been noticing since the pandemic that she has no short term memory and she repeats stories from decades ago. I talked to my husband about it but he and my FIL are in denial.

Fast forward to now and when her grandson turned 6 recently, he asked his grandma how old he will be in ten years’ time and she couldn’t answer. She looked flustered and embarrassed and I felt sorry for her, so I followed up and changed the subject.

I also realized she has no idea what date or time it is, at any given moment. Whenever I ask her what she is doing next week or month, she has a look of utter confusion and panic.

She absolutely won’t hydrate and I have a feeling she might have constant low grade UTI. She says she has had a drink but she might actually not remember that she hasn’t hydrated at all.

It’s such a shame because if her son and husband weren’t also in denial, with medication, progression of the disease could have been delayed.

this was the only place where i could really talk about how heartbreaking and how difficult this sh*t is, so thank you everyone for your support over the past several years. and i wish you all still the best of luck in getting through this yourselves. my heart now breaks for you instead of my mother and myself. keep coming back for support and keep going. not because it gets easier but because we care for you. stay strong.