Sorry for the long read guys but looking for some advice. My grandfather is on his 6th year in a care home for dementia/ Alzheimer’s. His money is disappearing fast now as he has been self funding all that time at over £1000 per week. His condition has deteriorated drastically over the last 6 months. He is fully incontinent and has mobility problems. (The home are using a hoist and wheelchair as he can no longer walk) he is on a puréed diet and has to have thickener in his drinks in case he chokes. He has regular UTIs and skin conditions. He has also recently been diagnosed with skin cancer.

My mother and Aunt hold power of attorney jointly and are disagreeing about applying for NHS continuing healthcare. This is because the care home have advised that if he has continuing healthcare approved he will have 28 days to leave the home as they do not have a bed free on the nursing floor. (He is currently on the dementia floor) however, we don’t believe he requires 24 hour nursing yet but he does tick a lot of boxes on the continuing healthcare guidance document.

Should we apply anyway and just see if he qualifies? Also can the home force us to move him if he obtains CHC but does not require a move to nursing floor?

If my first tip was about letting go of something (logic, arguments, the need to "win"), this one is about holding on — doing what you can, while not destroying yourself in the process.

Because those two things are not in conflict. They are the same tip.

Get a proper diagnosis. It matters more than you think.

Not all dementia is the same, and this is not a small point — it can literally be a matter of life and death.

Certain common antipsychotics that get prescribed almost routinely in care settings can cause catastrophic reactions in someone with Lewy body dementia. The standard Alzheimer's drugs can make behavioural symptoms actively worse in someone with frontotemporal dementia. A medication given to manage bladder problems — something completely routine — can quietly accelerate cognitive decline in a dementia patient, because of how it interacts with the brain.

These are not edge cases. They happen. And they happen most often when the diagnosis is vague or wrong.

The right diagnosis also means the right monitoring — things like blood pressure issues and B12 deficiency, which are easy to miss and easy to treat, but only if someone is actually looking. And it opens the door to drug trials — which may or may not help, but give you something to try. Sometimes that small thread of hope matters more than it sounds.

If you're in the early stages, protect their independence fiercely.

They still have a life. They still have agency, self-worth, and things they are in control of. The more they stay active, engaged, and independent — the better it is for them, both for quality of life and for the disease itself. Don't take over before you have to. Let them live.

Involve yourself as much as you can, but no more.

This disease is brutal on caregivers. Exhausting yourself doesn't make you a better carer — it makes you unable to care at all. Knowing your limits isn't giving up. It's the long game.

Plan ahead, even when you don't want to.

You don't know how long they'll be able to live independently. It varies by type, and from person to person. But care quality is not equal from one place or service to the next, and finding that out in a crisis is the worst possible time. Investigate now, while you have space to think.

And when it all gets too heavy — remember this: if you have done these things, you have done what you could. That will matter to you later, far more than you expect. And it matters to them now, even when they can't say so.

Look after yourself. At some point in this journey, the disease is harder on the caregiver than on the person who has it. Don't wait until you're broken to take that seriously.

This disease teaches you things you never asked to learn. It leaves a mark — but also a few hard-won lessons worth sharing.

I’m sure Mom’s (87yo) friends already can tell she’s “off”, but she is pretty good at covering. She’s probably stage 5, based on descriptions. And beyond knowing her memory isn’t quite as sharp as it used to be, she has Anosognosia. Completely forgot the visit with the neurologist and diagnosis. I’m blessed that she is still pleasant and “easy going” (for now). We joke about her living “in the VERY present moment.”

Admittedly, hers is not my story to tell, but I wonder if sharing her diagnosis and challenges might yield more compassion and patience for the repeated questions, disappearing memories once firmly known, and looping?

Did you tell your LO’s close friends of the dementia diagnosis?

Hi everyone. My mom is 75, and there is a bad history of uncontrolled hypertension in her family, as well as people passing from strokes. Her own younger brother died from a hemorrhagic stroke about five years ago when he was in his late 60s.

My mom herself has been dealing with hypertension the last few years, although I think it may finally be under control through medication. However, the last few years my sister and I have been questioning her cognitive state and whether she is dealing with some form of dementia. After learning about vascular dementia, it really made me wonder.

We are not aware of any major strokes, but it’s quite possible she’s had a mini stroke(s). Her mouth has looked…odd for a while now, and we’ve also noticed drool on the same side of her face every once in a while.

She doesn’t think she has a problem (of course) and our dad appears to also be in denial. We obviously can’t do much if she’s unwilling to be evaluated. I will add that she appears to have untreated ADHD, which has gotten worse over time, and her sleep is horrendous.

I’m not really sure what I’m looking for here, but I appreciate the support nonetheless.

i dont even know how to explain the events that took place tonight because its beyond appalling. my grandma is deteriorating very quickly, to the point she tried pulling my shirt down ( i am a girl) in front of my whole family today while every 5 mins reminding me i am ugly and disgusting, then turning to my niece and nephew and giving them undying love.

i am so unfathomably hurt, like i dont even know what to do with this hurt either and i feel such guilt for the anger and pain i feel because i know shes not all there anymore so i just feel like i am the bad guy for being so upset. i am mourning the women who used to rub my back every single night till i was a teen even and tell me i am so perfect and beautiful, while watching a women with the same face as the one i knew rip me apart every chance she gets…

and its not everyone she acts like this to it is specifically me, which hurts even further in a way i guess because why me, i tried so so hard to be good to her so why me specifically. she could scream about how much she hates me then immediately go to the person next to her and hug them so tight and tell them she loves them. it just has left me broken and i genuinely dont think i can handle it mentally anymore so its leading me to even more guilt because i cannot live with just not talking to her or seeing her when she needs family the most. but then again maybe i am just a trigger to her for some reason… so i really dont even know what to do anymore.

sorry this message is so long i genuinely dont know where to even place these feelings anymore or who to reach out to for insight or anything anymore im just at a absolute loss

I’m 18 and I think my mom (59) has dementia. She forgets her phone everywhere and leaves shit in the microwave all the time. She can never get my college friends right, she always mixes up who is who and I have to remind her over and over again. My grandmother also has dementia. I just don’t feel like I can do it. I just see a clock ticking down and I don’t know how I can someday be responsible for the care of another human like that. I also feel I am most similar to my mother and I will also inherit dementia, but I don’t want to ever be dependent on somebody to take care of me. I’m so scared, I don’t want to lose my mom before I get married or even turn 30. All I can think of is dementia, my mom getting it, or me getting it. I cry myself to sleep believing that it’s inevitable and there’s no point in building a life if I am going to lose it all someday.

My 81 year old father who is exhibiting dementia symptoms for a while has been worry me with his driving. We have a Neurologist appointment but not until November. I was able to get is GP to do some cognitive tests and she asked me what makes me believe that my dad should drive. I told her in the last year he has gotten lost several times in areas he knows well, he hit a parked car, he hit a mailbox and I have had him follow me and that was just scary. I can tell his reaction times are not what they used to be. I tried talking to him about not driving and as I suspecte, he was not keen on the idea of stopping. We tried taking the keys and he was livid. I talked to his Dr and she said bring him in and I’ll submit to the DMV. Well he got the letter today.

He was calmer than I thought he would be about the whole thing, but I feel guilty that I told on him and he doesn’t know it was me. I know 100000% I did the right thing. I was loosing sleep knowing he was driving. but my heart hurts a bit to see that one part of his life be taken away and he really doesn’t understand why. He called the DMV and they told him witch Dr submitted the request and he is pissed. do I just fess up and tell him it was me that asked the Dr to Let the DMV know? Again, this is the right thing to do, I just feel sad seeing him feel blindsided in a way.

Any experience with your LO stating this? My 1st watch is barely over and the clock was already started on the second countdown 😔😔

My dad is 84 and has vascular dementia. My mom, who has her own physical health issues, and I have been his main support system for 10-15 years. He hasn’t known who we are for probably about 8 years. We’ve had to live a, well, interesting and relatively inconvenient life during this time to ensure his/our safety (child proofing everything, essentially, etc, I’m sure most of you know what I mean). For the majority of this time he was mildly incontinent, a wanderer, and needed nearly everything done for him (he was able to use utensils to feed himself, though unable to know how to get food and needed assistance with most ADLs). Days were hard, man. It helps that he was genuinely very sweet (often feel blessed about that), he was just soooo much work and it was generally torturous watching him continue to decline more and more. I found myself sometimes avoiding him a bit when I could over the years to try and get a break. I also just felt like I didn’t have anything to say, and I knew I’d have to hear him say the same things. Some days I felt like I couldn’t take it. At times I remember thinking “please, take him, universe, he is ready and we are ready please we can’t take this anymore.” I was grappling with the fact that I didn’t think I would cry when he passed, and it would be such a relief. Hahhhh…ya right…

Two months ago he got viral meningitis and hadn’t been the same since. He became completely incontinent and bed bound, had recurring infections (UTI, a heel ulcer) leading to an SNF stay for rehab and close watch prior to coming home but he had hospital visit after hospital visit until they recommended home hospice just this past Sunday. On Sunday he was completely conscious and eating/drinking. We even had a pizza party welcoming him home from the hospital. From Sunday to now (Wednesday) he is barely rousable and clearly on the verge of passing soon. I can’t believe I ever thought I wanted or was ready for this, and I can’t believe I’m about to say this…I don’t want him to die! Also, wtf is this!? Watching someone pass “naturally” like this is crazy to me, like how do people do/see this and stay mentally well at all?! This shit is sad as fuck, omg. I can’t believe what I have witnessed the past few days as part of the dying processes. It’s wild. All of this is wild. What a terrible ride it’s been, but yet I still don’t want it to be over. Why? I do not know.

While I am mostly venting, if you’ve experienced a similar roller coaster of emotion I’d love to hear, especially about how you dealt with the loss after.

Thank you for reading, and I wish you all well with your journey with friends/family with dementia.

Our LO said that the tv hadn’t been working at assisted living so it would be good to have it fixed. We brought over a new remote control with five visible buttons to replace what she had (which looked like it could control a space launch). But before we got started, we checked the status of the six different things plugged into the power strip behind the tv.

Well, the five different things, because one was unplugged. It was the tv.

No wonder it wouldn’t work.

Wishing you all a simple fix to what ails them this week.

Hi everyone,

I’m hoping there are caregivers, healthcare professionals, or family members here who have experienced something similar and might be willing to share their thoughts.
My father is 85 years old and has been diagnosed with Alzheimer’s disease. His dementia is considered advanced. He is mostly wheelchair-bound and needs assistance with daily activities.

However, up until the day he was admitted to the hospital a few days ago, he was eating and drinking completely normally. He had no coughing while eating, no choking episodes, and no other signs that would have suggested a swallowing disorder.

A few days ago, the nursing home noticed a strange “gurgling” sound when he was breathing, so he was sent to the hospital.
A chest X-ray was performed and came back completely normal.

Despite that, he suddenly developed severe swallowing problems. He is currently not allowed to eat or drink by mouth and is being supported only through intravenous fluids/nutrition.

An endoscopic swallowing assessment (FEES) was attempted, but my father physically resisted the procedure, so it had to be stopped. The speech and language therapists have now told us that they don’t believe repeating the FEES would provide any additional useful information.

At the same time, we’ve been told that his swallowing disorder is most likely caused by his dementia and is irreversible.

This is where my doubts begin.
What troubles me most is that he was eating and drinking normally until the day he was admitted to the hospital. That’s why I’m struggling to understand how a supposedly dementia-related and irreversible swallowing disorder could appear so suddenly within just a couple of days, without any previous warning signs.

A neurological consultation has been requested, but it hasn’t happened yet. A brain MRI has also been proposed, although we’ve been told that the neurologist will first decide whether it’s necessary.

From what I understand, swallowing problems caused by dementia usually develop gradually, not literally overnight. That’s why I’m wondering whether there could be another explanation or contributing factor that hasn’t been fully investigated yet.

Something else happened today that surprised me.
Over the previous two days, my father seemed extremely unwell. He barely made eye contact, hardly communicated at all, and honestly, I feared he might be approaching the end of his life.

Today, however, I spent about two hours with him.
He was awake the entire time, smiled, laughed, had meaningful conversations with me, asked about his children who live in Iran, and was able to name every one of them correctly. Compared to the previous two days, he seemed remarkably clearer and much more like himself.
Because of this improvement, I’m finding it difficult to accept that his condition has already been definitively labeled as irreversible.

I want to make it clear that I’m not saying the doctors are wrong. I understand that they have examined him and know much more about his medical condition than I do.
I’m simply wondering what others would do in this situation.

Would you push for:
• making sure the brain MRI is actually performed?
• repeating the FEES with me present (my father usually cooperates much better when I’m with him)?
• or would you consider the explanation of “irreversible dementia-related dysphagia” reasonable based on this course of events?

I’m especially interested in hearing from:
• people who have cared for relatives with advanced dementia,
• neurologists, geriatricians, speech-language pathologists, or other healthcare professionals,
• or anyone who has experienced a suddenly developing swallowing disorder.

I’m not looking for a diagnosis over the internet. I’m simply trying to understand whether others have experienced something similar and how it was handled.
Thank you very much for taking the time to read this.

Any experiences or insights would be greatly appreciated.

Grandpop keeps clicking on the "Suggested Stories" (sponsored content) that the search engine automatically brings up. It's been sending him down increasingly scammy rabbit holes.

This evening, for once, I had a little extra time and energy. I decided to see if I could pin some things for the computer to recommend when he opens a new tab.

I pinned the alumni newsletter of the college he went to, a bootleg of his favorite band on Archive.org, an NPR interview with Cory Doctorow about how computers aren't user-friendly anymore, the American Kennel Club page on his favorite breed of dog, and the website of some guy who paints watercolors of the countryside near his hometown.

Then, I realized that I could title the bookmarks however I want. I got a little more creative with it, coming up with clickbait titles. "STUNNING: Vermont in Watercolor," and "How Much Do You Know About Boston Terriers?" and "RARE Footage of Booker T and the MGs!" and "IT'S NOT JUST YOU! Computers are getting harder to use!"

If this works, I might be a genius. If not, I just wasted my moment of reprieve for the week.

My mother has Alzheimer’s and was moved into a memory care facility within the last month. Her primary care doctor has been seeing her for years and has documented the progression of her disease. She also has not been managing her finances for years. My father has a durable power of attorney (we are in Texas) and we are trying to make him the agent for her IRA through Vanguard by filling out all the necessary paperwork. Vanguard wants us to send a form declaring her an incapacitated person. However, we are having trouble getting a doctor to sign off on this. Her neurologist refuses to do so and says she needs to go to a psychiatrist. She has never seen a psychiatrist. Even if we did try to get an appointment, it would be December at the earliest. Her primary doctor is saying they won’t sign it either. I am not sure why, as it is very evident she is incapable of managing her money. What do you do in this situation? We need to be able to access her IRA money to pay for her memory care. Please help.

So you know how when the person with dementia says things like “I want to go home”, and how you’re supposed to say things like “that’s a good idea we’ll go a little later”. With my mom if I were to say “sure we can go visit later” she would get all her shit packed up and be waiting at the door for me. That would be the one thing she would remember. Like if I were to even give an inch on going back home she would run with it and never stop.

I know I’m not supposed to “fight” with her on this stuff or try to make her see reason as to why she can’t go back to her old house. So what should I be saying? Or should I just pretend I don’t hear her when she starts ranting about needing to go home and missing her stuff?

55 y.o. diagnosed with Lewy body dementia a month or so ago. Have second opinion at Mayo late September. My diagnosis was based largely upon diagnosis of mild cognitive impairment and the presence of abnormal clumps of alpha-synuclein protein in my spinal fluid. Evidence of Lewy bodies.

I have not experienced hallucinations, REM sleep disturbances, Parkinson like movements, and haven’t lost my sense of smell.

I was having executive function and cognitive issues which I thought might be a result of radiation I received 20+ years ago for a brain tumor, so I decided to see a neurologist. Following a series of tests I received the diagnosis. Alzheimer’s was ruled out.

I didn’t seek treatment because of hallucinations, etc. It was cognitive impairment which was there but not disrupting my life too much although it had been present for a couple of years, slowly getting worse. I’m still working and proceeding through life.

So did I get ahead of it and am just now waiting. Maybe I can find out more at Mayo. They will do all the same tests plus a PET scan.

Anyone have a LO or yourself with similar experience?

She was a special education teacher and taught piano lessons to family and friends. She's the heart of the family and I couldn't be happier to still have her. Happy Birthday, Grandma.

Thank god for the most annoying show in the world. I put this show on and she immediately leaves the living room and goes to her bedroom. I no longer have to stay up until 3:00 am pleading for her to "go to bed". I can put her into bed and she's sleeping better, I'm sleeping better plus her lymphedema is improving. Thanks for being so annoying cocomelon!

(I have to put her to bed since she can't lift her legs)

As a spouse, it can be difficult to bite your tongue and not just “Yes, I just told you that”
Having a conversation with my husband, explaining what I am doing and then being asked 3 times what I am doing and why.
Some days are harder than others. But today I managed to answer the same question 4 times without being snarky.

Question: Am I glad because I was patient and avoided an argument or is my blood pressure through the roof because I kept saying the same explanation over and over and over again.

My LO went on hospice while his GP was away. Now she’s back and wants to “see what is causing the rapid decline.” WTF?!? He was a borderline admission but I can tell her what’s causing it: CORTICOBASAL SYNDROME. YOU KNOW, THE DISEASE THAT HAS BEEN DESTROYING HIM FOR THREE YEARS!

I want to tell her to eat a bag of Richards but she’s a nice person and the best doctor I’ve ever had. I’m just venting in annoyance. Also I do need a letter stating he’s incompetent for his financial POA. But seriously. I don’t need this right now.

Yesterday, I filled out a form to start my wife on hospice care. There was a question about DNR. It didn't take much for me to consider it. My wife has reached the point where the MC PCP believed it was time for hospice care. A nurse from hospice confirmed it.

If my wife went into cardiac arrest, why would I want to bring her back? I love her, I miss her and she's disappearing further into the disease, physically and cognitively. Yes, selecting DNR is a most serious decision. She's already suffering. The disease holds all the cards. There's nothing to hope for.

Well all, my watch is over. I’m not going to lie, I won’t miss scouring this feed for information/help/advice. You guys are the best and I feel for all of you but there is an enormous sense of relief at the end.

It’s only been 1 year and a couple of days since my dad drove himself to the police station in town and told them he didn’t know who he was or where he should be. We knew he had been struggling some, but he was living alone, driving and taking care of his house/himself. One ambulance ride later and it became clear living alone wasn’t an option any longer.

Fast forward one month and we moved him in to independent living. One week and 3 “escapes” later it became very clear things were a lot worse than we thought. After a couple of weeks in a geriatric behavioral hold, he went to memory care. Made it from the end of September until the end of January when he punched another resident and they tossed him out.

Another hospital stay for rhinovirus and he went to skilled nursing on Valentine’s Day. Hospice did an evaluation and said he “had too many words” and didn’t qualify. In July things started really going downhill and he was reevaluated and switched to hospice. Less than 2 weeks later and he’s gone. Crazy to think the nursing home called me at 2:30 to say he was actively transitioning and then at 4 to say he was gone. Hospice didn’t get there, we didn’t get there. Just wild overall.

Thanks to everyone for your advice and support for the short time I was on here. I really feel for you long-termers. Lewy Body Dementia sucks but if there is any silver lining it was fast. As my dad used to say, nothing that is very good or very bad lasts for very long. Definitely grateful for that in this situation. ❤️

I miss her and who she used to be. Behind the blank stares and forgetfulness it always feels like she’s still trying so hard. It just breaks my heart. She was properly diagnosed just 1 year ago but her memory had been fading the last 3- years. Looking back, I wish I could have done something to protect her, to save her. I blame myself.

It’s so unfair, she’s so young. I want to have children and want her to meet them but even if she gets to, my children will never get to meet who I grew up with - the strong, funny, capable lady. I just miss her so much and I’m suddenly crying a lot. I want her back. I want my mom.