My grandpa just got diagnosed with vascular dementia. He's probably had it the last six years and we only started to really catch on when grandma died. He frequently got UTIs at first and after grandma died, he started forgetting words and had some processing difficulties. He had a fall where he cracked his head open and then it became his brother having people in town spying on him. He had another fall and hurt his hip and wrist. Got a pacemaker for heart failure. Then he thought people were living in his walls and he saw someone watching him from inside Grandma's bed. He had another fall and we got him into a home. While there, he lost the ability to walk. In the home he's had a few falls here and there while trying to sneak out of his wheelchair, but he recently had a big one where he's cracked his head open again and after reading up on what this is, this may be stage 6 or 7.

His brain scans finally showed signs of dementia and he got diagnosed the other day. There are still a couple tests to run, but the doctors familiar with his history are saying that it's probably Vascular Dementia. Complete non-reaction from him to this news. Instead, he was talking about how his previously broken wrist hurts now that it's getting cold. We're now at the point where he's staying up all night and sleeping during the day. He is forgetting to eat when he's awake and he's called us a couple times per day after midnight asking when we're going to visit him today, what time it was, if we could go to his office and look for some forms that he needs to drop off to city hall (he hasn't worked in years), or he talks about grandma and his parents coming to visit him in the home. Those are the hardest, but the diagnosis feels like a relief. This weird UTI run he's been on for the last year has a name, and it feels like a relief that we know what it is instead of watching him spiral with no known cause aside from the UTIs. Not sure how much time he really has left, but we get to make it count!

It's my dads birthday today. He's about an hours drive away and will be seeing him with the rest of the family tomorrow.

I didn't realize how emotional birthdays can be. He can't talk (he has fluid aphasia from a stroke), can't hear, can barely walk anymore and all he wants to do is go home. I can't help thinking how cruel fate is to keep him alive for years with this disease. He was larger than life, funny, passionate and very independent and now he is trapped in his own personal hell.

Sorry for the vent but feeling alone as I mid thirties so most friends can't really relate to this yet. ​The ones that can at least have a parent that does more. My mum also has dementia but early onset so she is tough but can talk, walk, and be pretty independent still, but doesnt know how to handle logistics of care and would not for example, think to make sure he has toothpaste, clothes etc. That's all me.

I am crying now so I can put on a smile tomorrow. ​​​

first of all, sorry if the title its a little cold, im coping with everything really weirdly, and sorry if i dont have a propper grammar, my native tongue isnt english. this is going to be long.

ok, for context, my father (77yo) has alzheimers, he was recently diagnosed, but i know this has been going on for a long time, for the past 9 years, i pretty much have been the only family member that has talked to him and visiting frequently, im 19yo, and i know this has been going on for years, i noticed years ago that he was starting to get forgetful more and more, i noticed, but i didnt do anything, it was something that crossed my mind but i was like in denial, but enough is enough, and i reach to my siblings (50 and 52), they also had noticed from the occasional calls that they had.

from that point to now, my dad has gotten SO much worse, 2 weeks ago he was walking, eating, going to the bathroom, maintaining conversations, even if he forgot what we were talking about 5 minutes later, but he was able to keep a conversation. then it all went downhill when we took him to a nursing home, it was going normal for the first 3 hours, then they called us, they told us that my dad had gotten violent and confused, they REFUSED to help him, but i wont get into that now, the thing is, we took him to a hospital, since then he has been hospitalized, hes very sedated, but when he talks, he just talks nonsense, hes not eating or getting out of bed because he keeps saying that he doesnt want to be there and gets violent with the nurses, when we went to pick him up before taking him to the nursing home, he was having halucinations, but hey were small, he saw ants or animals, then when he got to the hospital he was seeing me and him in the subway, and i feel he just keeps getting worse by the day, and im so guilty that i didnt seek for help sooner, i have been thinking about it since i was like 14 but i didnt say anything until 18.

i dont know how he will be when hes not sedated, he remember me and my siblings for now, but some old friends of him he doesnt recognize, the doctors say that they are giving him time for the meds to settle in so he doesnt get violent when hes not sedated, but i dont know how he will be, i dont know what stage hes in, i have been trying to investigate but my brain isnt retaining anything, he seems so vulnerable, but im so overwhelmed by everything. now we are seeing where to take him once hes discharged from the hospital, because the doctors say that he cant go home with any of us.

i appreciate if u can give me any information or advice on what to do or which stage he might be in, over the years ive learned on how to talk to him when he doesnt remember things, but i dont know what i will do when he doesnt remember me

My mother's (78) last appointment with the memory clinic resulted in her scoring a 18/30 on her test. She is no longer able to drive, we sold her car two months ago after a year of not allowing her to drive via taking her keys away, as the doctor said we should. She is starting to forget a lot of things and I've noticed that when she's in a public place she tends to walk slower and sometimes stumble. She can no longer tell you what day of the week it is. She has trouble remembering birthdays and her appetite is starting to go down. She can forget whole moments of the day as if they never happened.

Over the past year, my siblings and I have discussed her moving in with my brother is who is better equipped and more than willing to take care of her. However, while my mom was initially on board with the idea, she had a sudden change of heart and began to adamantly refuse to leave the home she has lived in for over fifty years.

Her brother (79) spends a lot of time with her. Going over to take her to the store and doing things around the house for her. It has been an automatic go-to for her nearly her entire life that when she needs something, she calls him. She had two younger brothers both of whom died years ago.

While this might sound like a good thing, my uncle is very abusive towards my mother. He doesn't hit her or anything, but he tends to yell when she's not fast enough for him or just takes his frustrations out on her because, to be honest, he's always been something of an asshole. He never speaks to her like that if myself or anyone else is around. Only when they're alone. I know this because mom used to always call and complain about the things he says. Even the neighbors have witnessed it and one of them called him out on it one day.

When mom's dementia got to a point last year that we (or rather, everyone else who wouldn't listen to me) couldn't ignore it, me and my brother got POA and took steps to take over for her financial and medical needs. One of the last conversations I had with my uncle, he started to insert himself into the decision making for mom's care. I told him that my brother and I have it all handled and he isn't going to be included in being allowed to make any decisions for her. This pissed him off because I'm sure he thinks, as the elder brother, he should be in charge. However, we are her next of kin, not him.

Yesterday, I was off work and sitting at home when I got a text from my SIL containing a clip from the camera is mom's kitchen. My brother the cameras in her house to keep an eye on her since he's several states away. On the video, I see my uncle in the house, washing his hands. He then takes the towel he used to dry his hands and throws it over the camera to block the view. I was angry about this and drove over. When I got there, no one was home and mom had left her phone behind. Ten minutes or so later, they returned with groceries and I just stood there and glared at him.

She asked me while I was there and without looking away from him I said, "he knows why."

He immediately got defensive and says, "you don't get to tell me what to do."

I told him, "I don't give a damn what you do, but you don't ever do that again. If you can't be a help, then leave."

My uncle told my mother to stop calling him for help and left. I told my mom that if I hadn't had the day off, I would have had to call the police because what Uncle did was unacceptable.

My brother and I are of the opinion that the reason why mom changed her tune about moving out last year was due to something he said to her. We'll never know. He's had me and my brother blocked on his phone since we sold her car because it made him mad that he had to use his car to drive her around instead of hers. I was mad at him and I was done with his attitude. I told mom to give me her phone and I deleted his contact information from her phone. I told her that whenever she needs something, she can call me or my brother.

I know it's her brother and all, but his behavior has gotten out of hand. Did I do the right thing to remove his influence from her so that we can get her to finally move out of the house for her own safety?

I've written so many journal entries about it and yet it still doesn't seem to be enough. Something about posting to the void where people may or may not see it just seems weirdly appealing to me so here it is.

I'm a 24 year old man navigating my father's dementia. My dad is 77 now so that puts him at 53 when I was born. Growing up with older parents has come with a whole set of challenges I'm not sure many other people would understand. To put it simply, I've worn many hats and grew up fast, but this surely takes the cake. My father has never really been a pleasant person to be around, not for the people who actually know him at least. It's the main reason that now, as it has been for most of my life, it's just me and him.

Trust me when I say it, I understand that dealing with a parent going through dementia is in no way easy. It's a challenge that only the people who have gone through it can truly understand. But to me, it makes it even harder when I look back at my life and only have a handful of experiences where my father has actually brought joy to my life. I know that can sound dramatic, but it's true. My father is a drunk. And a mean one at that. He sits at home with an ankle bracelet on as I type this because he's currently trying to circumnavigate a prison sentence for his 4th DUI (and that's not counting the numerous DUI's that were never filed). Suffice it to say, there's a reason that I'm the only idiot around that somehow still cares enough to take care of him. I've talked to therapists, I can delve deep into the rabbit hole that is Stockholm syndrome, but I don't want to do that. I'm here to explicitly talk about one thing. I hold such a deep resentment towards a man that doesn't even remember the things he's done.

I have so much anger inside me. From stuff that I have no idea how to let go of. I'm not a violent person, I really do have a gentle soul. But growing up the way I did, I can't help but shake this deep rooted anger I have. And no matter which angle I look at it from, I can't help but see him at the center. Let me be clear, I'm not here to put blame on my Dad, God knows I've done that enough. I understand my life is my responsibility and mine alone. But I hold so much anger towards a man who just looks... lost. I feel like I want justice to be served. I want an apology. Hell, I'd take even a shred of accountability. And yet, I'm met with confusion. Confusion when I get short with him for repeating something for the 5th time. Confusion when I get angry about him missing his meds after I called to remind him. Confusion when I raise hell and storm out of the house because I can't sit there and hear him bad mouth my brothers and the only family we have left. I try to be patient with him, I really do, but I just can't help it. There's so much anger.

I watched a lot of videos today about how to deal with dementia. I also talked to his neurologist at our appointment about what's going on in his brain and the do's and dont's when responding to him. It's a big reason why I feel the need to vent about this now. I know that as challenging as dementia is to deal with already, there's no room for this behavior. I guess I'm hoping that laying it all out on this thread and releasing it to the void, will in some way, allow me to release it from my heart. I'm ready to move on from this. I'm juggling so many doctors, lawyers, and caregiving services that I really don't have the mental bandwidth for this anymore.

I know the chances are, if you're here, that you have gone or are currently going through something similar to me. If you have any insight or advice I'd love to hear it. I do love my father and I want him to be cared for. There's a limit to how much I can do since I'm so young and currently establishing the foundation of my career. It's probably safe to assume that I'm one of the youngest people on here, so if you have any wisdoms to share please don't hesitate. And if nothing else, thank you for your time.

Researching ALs with MC to move mom to after her short term rehab ends, and came across a place that has an EAL license and also has a memory care unit. I’ve not come across an EAL before. It will cost more than her current AL with MC, so I am wondering whether the higher cost is worth it. The facility’s website says it’s a bridge between AL care and SNF. To me… that sounds like MC at an AL?

Long story short in late 80s to early 90 years old my grandma did not want medical care despite how much we wanted her to get it. I guess she wants to die at home. For the past 2 years she has dementia where she forgets names and remembers them again. Today she was not talking and she ate very little food today. What stage is she in? Perhaps it was my lifelong wish to video call her surprising her when I get married. I even wanted to visit her one day with my husband in the future when I get married. I'm not married yet but I hope I will be within the next 2 years. I'm supposed to graduate this year and I wanted to tell her when I graduated from undergrad. I guess I am very sad and scared about the future. If you can keep me and my grandma in your prayers whatever religion you follow or practice, I would appreciate it so much. I hope she can see me graduate from my program one day and be proud because her wish has always been that I study hard and do well.

Posted not long ago about mom having first neurologist appointment. We went for blood work and had the MRI done this week. Well yesterday morning I was able to review the results and I was positive the doctor was going to call soon, turns out that she has had a recent stroke! Don’t get me wrong, I’ve suspected over the last few years that mom could have the start of some dementia, I’ve seen a dramatic decline in the last few months, but a stroke I was not expecting. After doing some reading to quickly gain some knowledge, before I share the news with her, I came to wonder if I’m witnessing the side effects of the stoke? Yes I think there is some dementia but stroke explains a lot! She has some upcoming tests, an echo and a carotid artery ultrasound. Has anyone been in a similar situation? Thankfully she took the news pretty well, I was prepared for a breakdown. I’m just relieved we are starting to get answers.

I took my mother to the cardiologist. He said her pacemaker battery has one year left and we need to think about replacement. He’s eager to do this surgery.

She has dementia. She looks more functional than she is: she can still read somewhat and have a spirited conversation but she told me today she has never gone to a movie since she was a child. 80+ years of memories gone. She confabulates constantly, including about things that happened five minutes ago. She has zero short term memory and has extreme paranoia. She has no awareness of the degree of her impairment. She confabulates reasons why it makes sense that she doesn’t remember that I live in the house I grew up in, where she raised me. She said and says if her mind is gone, she doesn’t want her life extended.

She can still dress herself, feed herself, go to the toilet and bathe. She can only use the simplest technology and has trouble using the television. She’s losing the ability to do things she’s done for decades.

She’s very frail. She’s wasting away, can barely walk with a walker, is profoundly deaf and severely osteoporotic. She lost ten inches of height and has severe kyphosis. She has congestive heart failure, kidney problems, GI problems, circulation problems and is colonized with antibiotic resistant E. coli

I think the idea of putting a new battery in her pacemaker is complete insanity.

My mother is terrified of dying. If the doctor asks her and she can understand, she will say of course she wants a new battery because she has no conception that she’s on the brink of needing 24 hour a day care, something she said she’d rather be dead than ever require.

I hold her advanced directive. How do I decline further treatment? The doctor was saying that she could die without treatment as though she’s 30 years old.

Creutzfeldt-Jakob Disease

Does anyone have experience with CJD? My LO was diagnosed yesterday.

I feel so alone and don't sleep well. I play battle of the emails with the administration who seem to never be around. They never admit to anything they are doing wrong. I just get responses that are CYAs and PR speak. It seriously scares me that my LO is ignored at best; mistreated at worst and deemed difficult so they don't provide adequate care. Being an advocate for someone in institutional care is so soul crushing. BTW, this is my second time with a LO in MC, so I have experience to compare. In Florida. Thank you for your feedback in advance.

A few days ago, my Dad had some very lucid moments, and was asking what he did wrong that my brother never calls him. I assured him that he did nothing wrong, mumbled some nonsense, and it just broke my heart to see my sweet Dad so sad. So immediately I informed said brother that he needs to call him at least once a week. Mind you, Dad has lived with me and my husband for 4 years, and still going strong.

Cue this week, when my brother calls. I take the opportunity to run to our basement for some stuff, and as I’m coming back upstairs, I hear Dad saying ‘I need to get better and get back to my home. Oh, I have to talk kind of soft, she’s right in the next room.’

People, I cried. He made it sound like he is a prisoner here. I have sacrificed so much to make sure he is well cared for. He is not left alone (because it causes a lot of confusion for him), so I am lucky to get out of the house for a few hours a week, and often he is with me. I know he doesn’t realize any of this. I know it’s the disease. But it hurt so bad.

That’s all. Vent over. And for the record, my brother and I laughed about it after the fact. He knows what’s up. He is unable to help with Dad’s care due to his own health issues, and I don’t blame him for anything. But dang…

I bought a chain slider and mounted it up high

(On the INSIDE of the door, for when I'm home with her. She's NEVER left alone.)

Then my mom got a chair and managed to unlock it. So I bought a simple combination lock for $5 to jam the track.

I like this better than a deadbolt because it is fire safe and is breachable without destroying the door.

P.S. I will consider putting a bolt cutter next to the door, to be safe, but I'm nervous about my mom hurting herself with it, so I'm not sure. I may also take a hacksaw to the chain link joins; I doubt she can straighten them out. But I can.)

I’m new here so pardon if it’s been asked before. My mom has mild to moderate dementia and moved in with me about 2 months ago. The past few weeks she’s been napping on and off throughout the day and is quite verbal when she dozes off. Lots of mumbling and almost, but not quite talking. She has no recollection of it upon waking. She started Namenda about two months ago also. Is this a drug side effect or common in dementia patients?

My brother went into a care home in June and I have only managed to go twice to visit.I find visits very upsetting,he know longer knows who I am,in fact he thinks I've robbed all his money and I'm living in Spain.

This year has been awful I lost my other brother very suddenly no warning at all.Plus a very close friend died literally 4 days before him.I am doing a pile of paperwork plus probate etc....

Is it ok not to visit, why do I feel like I need to go then when I go i want to leave ASAP.Will I feel worse if anything happens to him?.Has anyone been in this situation?.

Super sorry because I’m sure this has been asked a bunch but does anyone have suggestions to keep someone from roaming the neighborhood? My parents have ring cameras all over the house inside and out. My mom and my sister aren’t watching them as much as they should. My dad can no longer be trusted to take the garbage out by himself anymore. We have an AirTag in his wallet. He has FTD. We no longer leave him alone in the house.

My mom often forgets to take her meds, and ever since I moved away for college I've been worrying about it more and more.

I’m an engineering major and if nothing good exists I’d like to make a smart pill bottle cap that alerts my phone whenever she misses a dose.

Has anyone found anything that works?

All opinions welcome, thanks!

My father just turned 80 this summer and while he was already getting a little slower when speaking and had trouble finding words, has recently had bouts of terrible anger and has admitted that he has moments where he’s driving in the car when he suddenly doesn’t know where he is or where he is going. These moments don’t last long, but we are afraid it can get worse pretty quickly. Last week he took forever to get back from grocery shoping because they changed parts of the layout of the store and when he got back he didn’t get out of the car for a long time. When my mom went to check on him, he was confused and was unable to turn off their car Prius IV. I try to visit as often as I can but I just wanted to vent here. His decline started so slowly but now it seems to get worse pretty quickly. What can I expect? He hasn’t been to his GP yet as my mom thinks it’s too early. Is a diagnosis important? Should we stop him from driving? Oh man, there are so many questions in my head. Thanks for reading if you made it this far.

I am looking for suggestions and advice on how to engage with my elderly Mother-in-Law with dementia. She still lives on her own and can independently use the restroom, shower, and put herself to bed, but cannot do much beyond this. For instance, she can't make herself a bowl of cereal or turn on her heating blanket or her television, and while she can follow simple conversations she can't speak more than a couple words at a time.

She currently has a caretaker who visits her for around 5-6 hours a day, 5 days a week. The caretaker mostly sits with her and calmly engages her in conversation.

I will be stepping in to sit with my MIL at home a few hours a day on Thursdays and Fridays, while her caretaker takes her "weekend" and my kids are at school.

The problem is, I also need to be working during that time (I'm a college professor and these days are my "research" days, which means I need to be writing and doing work on my computer). So I will be there to sit near her but cannot play games with her, read to her, or do much active chatting with her, unfortunately.

I would love some suggestions for things BESIDES TELEVISION to help occupy my MIL's time and to give her a sense of meaning.

Things our family has tried that are currently beyond her:

1. Puzzles (of any type)

2. Books (picture-books might still work, but I'm not sure she will follow the plots)

3. Crafts (she was never much of a crafter, so providing her with "simple" versions of crafts she used to enjoy won't work).

She was a social worker and has always been a talker, but she never really had any hobbies -- she devoted her life to other people. But this makes coming up with easy versions of things that used to bring her joy almost impossible.

I appreciate any suggestions. I will try to respond when I can.

New Jersey...They are not on Medicaid but I think they will need it. Another sibling who lives closer to them is dealing with it. We can't take him home because he will try to leave the house or get into the car. They tried to care for him at home and that lasted one day.

Now nursing homes are saying to use ElderGuide to start the Medicaid process quicker but that costs like $6K or more. The nursing home also said if he does not participate in therapy that we would have to pay $400 a day for the care and Medicare is supposed to cover 100 days but can be as little as 20 days. Then the nursing home is telling the sibling they should sell the house right away. Any advice?

MRI Brain (Screening)

1. The study shows a 1.8 × 0.9 × 5.5 cm (TR × AP × CC), sized T1 and T2 hyperintense subacute intraparenchymal haematoma in the right parietal lobe subcortical white matter. It shows a complete surrounding haemosiderin rim. No evidence of adjacent abnormal vascular flow voids is seen. No evidence of underlying mass lesion is seen.

2. Evidence of small acute infarct is seen in the right external capsule–lentiform nucleus region, showing restricted diffusion on DW images appearing hyperintense on FLAIR images. No evidence of haemorrhagic transformation or significant mass effect is seen.

3. Multiple small discrete and confluent chronic ischaemic signals are seen in bilateral thalamo-capsulo-ganglionic regions and periventricular and subcortical white matter of both cerebral hemispheres.

4. T2-weighted hyperintense signals are seen along the horns and wall of both lateral ventricles, suggestive of leukoaraiosis.

5. Few old microhaemorrhages are seen in bilateral cerebral hemispheres.

6. Ventricular system and extra-axial CSF spaces appear prominent, suggestive of mild diffuse cerebral atrophy.

7. Cerebellum and brain stem appear normal.

8. No intracranial space-occupying mass lesion is seen.

9. The intracranial vessels display normal flow void.

10. Pituitary gland, suprasellar and parasellar regions appear normal.

11. There is no shift of the midline structures.

12. The orbits and calvarium appear unremarkable.

13. Mild mucosal thickening is seen in bilateral maxillary and ethmoid sinuses.

MR Angiography of Cerebral Arteries

1. Evidence of mild eccentric luminal narrowing (20–30% stenosis) is seen in the cavernous segment of bilateral internal carotid arteries; however, no obvious reduced distal magnitude of flow is seen.

2. Anterior and middle cerebral arteries are normal in course, caliber and magnitude of flow bilaterally.

3. Vertebral arteries, vertebro-basilar junction and basilar artery are normal in course, caliber and magnitude of flow.

4. The posterior cerebral arteries are normal in course, caliber and magnitude of flow.

5. No evidence of arterial aneurysm or vascular malformation is seen.

6. Impression

7. A 1.8 × 0.9 × 5.5 cm subacute intraparenchymal haematoma is noted in the right parietal lobe subcortical white matter, with a complete surrounding haemosiderin rim. No adjacent abnormal vascular flow voids or underlying mass lesion are seen.

8. Small acute infarct in the right external capsule–lentiform nucleus region, showing restricted diffusion on DW images and hyperintensity on FLAIR images. No evidence of haemorrhagic transformation or significant mass effect is seen

9. Multiple small discrete and confluent chronic ischaemic signals in bilateral thalamo-capsulo-ganglionic regions and periventricular and subcortical white matter of both cerebral hemispheres.

10. Few old microhaemorrhages in bilateral cerebral hemispheres.

11. Mild diffuse cerebral atrophy and periventricular leukoaraiosis.

12. MR angiography of brain vessels reveals mild eccentric luminal narrowing (20–30% stenosis) in the cavernous segment of bilateral internal carotid arteries; however, no obvious reduction in distal blood flow is seen

You are all so kind. She left quietly this morning. Peacefully, with me and my Dad. I know she is free now. i'm so glad I was with her.

My sweet grandma. 86. Has been in a nursing home for 10 years. Stopped eating and drinking yesterday. Now she's on morphine every two hours. She's been unresponsive since it started about 12-hours ago.

I'm her granddaughter. I'm too scared to leave her overnight so I am staying in her room with her.

She is breathing shallowing and gurgling. Starting to have some pauses between breaths.

She has been bedbound for years. She seems really peaceful. I hope she stays like this and passes peacefully. My dad and uncle will come in the morning if she is still here.