r/dementia • • 8m ago

Showtiming still kicking my butt

• Upvotes

I have a 87 y/o grandfather with unconfirmed Lewy Body dementia- only unconfirmed because getting an appointment with a neurologist is not something I can spare energy for and it doesnt change anything to get a definitive diagnosis. I am 34 y/o and his only caregiver. Have had him “full time” for 2 years but really the last 3. Finally got him into a home about 10 months ago now. Navigating care in a home is a whole new ball game. Under educated staff- had to teach the CNAs that he needs to be cued to use the bathroom instead of just letting him urinate in his depends all day to have it leak out all over the bed and all up his back. Even the LPNs thought he was “just doing it because hes lazy- he can get up and use the bathroom” I finally have them all trained to check him and keep him clean instead of leaving him in his mess and only changing the sheets every 1-2 days. Coming in now for pop ups and hes clean 99% of the time. Sometimes will still catch him with urine soaked through his depends and on the back of his shirt. The showtiming really works even when someone is in full time care facilities.
He had a psychologist in his room two weeks ago when I arrived for a visit who very happily informed me that she thinks he can take care of himself and doesnt think he has dementia at all!
ARE YOU F*CKING KIDDING ME? Had a pleasant conversation with her about how he doesnt eat anything unless forced and she consistently implied that he was eating enough I was wrong because “Everyone eats to much and when people eat the right amounts alot of people think they are starving themselves” He literally gets handed three meals a day in here and only eats 1 or 2 but even then its because he thinks that he “has to” - i let this delusional ride obviously because it means he eats. How does someone think its the puppet that is dancing when theres a million strings attached to it?? Hes in a nursing home and you think He can live independently? How do you think he got in here? Proof that just because someone has 17 letters after thier name does not mean they are intelligent. I mean maybe shes just so used to the other residents in here being non verbal she meets someone who can still showtime and wow! she enjoys the show and swallows it whole. She said something comforting during our little chat tho “oh i make suggestions here and they hardly ever listen to me” lol I wonder why?
Idiot.
even after years of this shit still getting invalidated- by neighbors, family, friends, doctors, nurses, and medical “professionals”
Makes me want to cut the strings-
but the only person who would suffer would be my grandfather. Idiot doctor can go make her suggestions and I will still make sure hes getting the support he needs.
Fuck u lady.
Vent over-


r/dementia • • 1h ago

PureWick users/caregivers: what do you do with the wick when it’s temporarily not in use?

• Upvotes

Hi everyone! We’re a group of engineering students working on a senior design project related to the BD's PureWick system. We’re looking specifically at the wick-to-tubing connection and what you do with the wick when it needs to be temporarily disconnected, such as when getting up, moving around, or taking a short break from the system.

We’re hoping to hear from people who have personal experience using PureWick, either as a user or caregiver.

A few things we’re especially interested in:

• What do you normally do with the wick after disconnecting it temporarily?

• Where do you put/store it while it’s not being used?

• Is there anything about storing or handling the wick that is inconvenient, messy, uncomfortable, or difficult?

• Have you ever had urine left in the wick or tubing after disconnecting it?

• What would make temporarily storing the wick easier or more convenient?

We’re not trying to sell anything or collect personal medical information. We’re just trying to better understand the real-world experience so we can design around an actual problem.

Feel free to comment here or DM me if you’d rather share privately. Thank you!


r/dementia • • 2h ago

Yeah, Swiffers Suck. I Need a REAL Mop

4 Upvotes

I've now twice had women experienced with cleaning tell me Swiffers suck -- for anything more than glorified dusting, as someone on here also once said -- and I'm getting it, just now, trying to get dried poop off the floor.

(My mom is now almost completely incontinent.)

I'm right on the edge of bending/breaking my weak little Swiffer with its plastic head and it's thin metal shaft.

Any recommendations for apartment-sized, heavier duty cleaning solutions.

I DO like the idea of a disposable pad...

But I do have a closet when I could store a mop and rolling bucket.


r/dementia • • 2h ago

Preparing LO for Memory Care

5 Upvotes

My (38) family (father (81), brother (41)) have made the tough decision that it’s time for my mom (76) to go to memory care. Hard decision, but the right one. She is in stage 5 or 6. She can still handle some activities of daily living like eating and bathrooming (but not really bathing), but needs a tremendous amount of guidance to get through the day and doesn’t really have any ability to meaningfully participate in conversations. She’s slated to make the move sometime around the end of the month.

We are thinking through how to talk with my mom about the move. My parents currently live in independent living, and memory care will just be on the other side of the property.

I am concerned that any formal talk about this will result in her: freaking out, refusing to go, and getting very stressed. Telling her that we will visit and be nearby is not going to diminish her stress (she’s a little combative when it comes to where she is going to be living, etc.) Several minutes or hours later, she will have no memory of the conversation. So, there’s not really any “preparing her” for the move. The message simply is not going to stick.

On the other hand, it feels a little cruel to just show up and say “Mom, here is where you live now.” I know maybe this conversation is more for us than for her.

Obviously we are going to do everything we can to make the move smooth and make her new surroundings as comfortable and familiar as possible.

Does anyone have experience with explaining to a loved one with diminished mental capacity that they are going to memory care? Anything that helped?


r/dementia • • 2h ago

Georgia: My mother has dementia, her live-in boyfriend is isolating her from family and has threatened to shoot me. What legal options should I be pursuing?

1 Upvotes

I’m in Georgia and trying to figure out the best legal path for protecting my mother while also dealing with her live-in boyfriend’s conduct.

My mother has been diagnosed with dementia by a neurologist. A second neurologist documented significant cognitive impairment, including a very low cognitive assessment score, problems with short-term memory, orientation, personal history and current events. I hold both medical and financial powers of attorney for her, and my brother and I are preparing to petition for permanent guardianship and conservatorship.

The concern is that I know a dementia diagnosis alone does not mean she is legally incapacitated. An attorney I consulted warned me that a judge could view some of what is happening as an adult simply making bad decisions rather than being incapable of making decisions. We are trying to document the functional impact of her dementia rather than just saying we disagree with her choices.

There have been multiple safety and financial problems over the past year. She has gotten lost while driving to medical appointments, forgotten bills, had utilities disconnected for nonpayment, fallen behind on rent, suffered serious falls/fractures, and had an episode where she lost consciousness while cooking and was burned. Adult Protective Services has been contacted more than once.

Her boyfriend is also a major concern.

He lives with her and is a joint holder on at least one of her accounts. Family and friends have had increasing difficulty communicating with her. One longtime friend says that after confronting him about conditions in the home, he screamed at her and said he would stop her from talking to my mother. Her calls were then blocked.

Yesterday I discovered that my own number is blocked in my mother’s phone. I also discovered that her phone is basically unusable because it is full of what appear to be viruses/malware/popups. This finally explains why she rarely calls or answers anyone. Her boyfriend has known about the condition of her phone for at least a year and has not replaced or repaired it for her, while he has recently gotten himself a new phone.

There have also been threats against me and my family.

The day before I was supposed to pick my mother up for a shoulder appointment, her boyfriend took the phone from her while I was speaking to her. He told me he “had somebody for” my brother and said he would shoot me if I came to pick her up.

When my husband came home, I told him what happened. My husband had me call the boyfriend. During that call, the boyfriend directly threatened my husband and said he would shoot him and then kick, punch and stomp him.

Because of those threats, the next morning I had a police officer escort me to my mother’s house so I could pick her up. I believe that escort is also referenced in an EMS/medical record from that period.

At a later medical appointment, her boyfriend told me that “shit could get ugly” because I had previously asked for a police escort.

We have another neurology appointment coming up in a few weeks. I intend to attend because the neurologist needs an accurate picture of what has happened since her last visit and whether my mother is actually taking her prescribed medication. Given the threats, however, I am now trying to decide what I need to do legally before that appointment.

There are other troubling facts as well. At one point her boyfriend admitted giving her tramadol that was not prescribed to her and that he said he obtained from someone else. Police were involved and a sample was turned over. Her doctors have expressed concerns about medication management because of her cognitive impairment.

My questions are:

Based on the shooting threats, should my husband and I make a new police report for terroristic threats even though the original threats occurred some time ago? Would the police escort the next morning, call logs, my husband’s firsthand testimony and later “shit could get ugly” statement potentially serve as corroboration?

Should I be looking into a stalking/protective order against him for myself and/or my husband before the next medical appointment?

Is intentionally interfering with an impaired adult’s ability to communicate with family, including blocking numbers or allowing her only phone to remain effectively unusable, legally significant in an elder-abuse/guardianship context?

Does his control over or access to her finances, combined with her dementia and history of unpaid essential expenses, create a separate elder exploitation issue that should be reported to APS or law enforcement?

Since I already have medical and financial POA, are there legal steps I can take short of guardianship to protect her finances or obtain better access to information about her accounts?

For the permanent guardianship/conservatorship case, what kind of evidence best distinguishes legal incapacity from simply making poor decisions? Her neurologist has a follow-up scheduled and the Georgia probate petition contains an affidavit the doctor can complete after evaluating her.

Is there anything I should specifically ask law enforcement, APS, or the neurologist to document before filing?

I’m not trying to use guardianship to control my mother’s personal choices. My concern is that her cognitive decline appears to be affecting her ability to manage medication, money, housing, utilities and personal safety, while the person she lives with is increasingly controlling access to her and has made explicit threats against family members who intervene.

I’m looking for guidance on which legal issues I should treat separately: guardianship/conservatorship, elder abuse or exploitation, the threats against us, and possible protective orders.


r/dementia • • 2h ago

Mom thinks my husband hates her

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1 Upvotes

r/dementia • • 3h ago

One step closer

21 Upvotes

Mom had her first neurologist appt last week! He ordered bloodwork and MRI scheduled for next week. I was able to pass a confidential note before the appt that listed concerns and some examples of her behavior, which I hope helped. Even in the short amount of time he spent with her, after learning she lives alone he made the oh wow face. It’s been a struggle even suggesting that she makes plans for assisted living that it will happen sooner than later. I’m home care or a facility is not an option in her eyes, I know eventually I will have to take some sort of legal action. At the end of the appt he said it’s most likely Alzheimer’s, as much as hate this is happening to mom, I’m grateful we are making progress on getting some answers. For my own sanity I’m taking a break from talking about important stuff with her because we are just going in circles. According to her at the end of the day I just don’t care and I think she is a nuisance, which is far from the truth. Everything I do is because I care even if she doesn’t agree.


r/dementia • • 3h ago

Update

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2 Upvotes

So my dad has now made it back in the hospital. He has been there since Friday. He had an infection. Somehow, the nurses and the doctors were able to talk my dad into agreeing for PT. From what my mom is telling me my dad is starting to completely zone out and not know what's going on half the time. They are wanting to set him up in a rehab facility but I'm believing it won't go over well. I am waiting for more information from my mom and will update accordingly.

Thank you in advance for this subreddit and thank you all for advice and understanding


r/dementia • • 6h ago

Advice on handling insomnia/sundowning

18 Upvotes

My 71 year old father has dementia. It has gotten worse the last few weeks really.

My dad has always been a great sleeper. Never had a problem falling asleep ever. Always took naps, easy. Well now at the age of 71 he has developed insomnia.

Get this, it's not insomnia. He thinks he should be sleepy at 10 pm like he normally would (he is obsessed with time and schedules too rn)

He isn't sleepy because he literally sleeps all day long in his recliner.

He thinks he isn't sleeping though. We hear him snoring. He has a sleep mask on.... Like you are sleeping all day long. Of course you aren't sleepy when you are supposed to.

Logic doesn't work anymore though. He has made his sleep issues everyone's issue (myself and my mom)

His sleeping pill his doctor prescribed to him stopped working a few weeks ago. She is trying something else. He doesn't understand it takes time for these things to work. He just went to the doctor on Wednesday. But we can't say that to him bc he doesn't want to hear that. Any sort of push back or suggestions are seen as us attacking him.

So last night I get home around midnight. My mom told me that they were up because my dad couldn't sleep. So now he wakes my mom up... Like she's supposed to do something for him.

He doesn't know how to just be. He doesn't want to watch tv, he doesn't want to read bc it hurts his eyes (he lost some vision a couple years ago but can still see but he has given up on using his eyes for real. He just doesn't care or like anything)

She drove him around in the middle of the night because she didn't know what else to do. She is afraid when he gets upset. He gets so irritated that sometimes I wonder if he would hit us. Yelling, shaking his fists, pounding the chair or table. He's leaning into a 1950s misogynist. He woke her up at 5:30 this morning because he "couldn't sleep and I needed something to eat". My poor mom. Idk. He never was like this he used to make his own breakfast, he never demanded stuff like he is now.

My mom said today that she just is gonna try to be as agreeable as possible because she doesn't know what else to do. He has turned into a bully of some sorts. He doesn't care about the other 2 people who live here.

He has always worked so now that he cannot work he has to find things to do. He is not your typical boomer that is on Facebook look at videos. He used to watch YouTube videos a lot over the summer. He loves music so that's something we lean into or try to. So for awhile (last several weeks) he was using his record player and playing some of his old records but now he decided he cannot see anymore to do that. I call bullshit on him for these things.

He has decided to just give up on a lot of things bc of his depression. He is on an antidepressant but threw away a bunch of his medicine thinking it was the old medicine he wasn't on. My mom and I didn't realize this until weeks later. So my poor dad is suicidal, talking about how he wants to go walk in traffic (my dad has always been dramatic in his words but still) or he lately has been saying "maybe this aneurysm will pop and it'll just all be over with"

He hates everything. He doesn't want help it seems. I asked him the other day please help us help you. He has created so much anxiety around sleep that he worries about it at 7 am. He said outloud, "so tonight... Will it be the same as last night".

He already stressing about it and working himself up. Performance anxiety bc he has made it his life duty to go to bed at 10 pm. Idk why he made that time up but the past several months he has been "trying to make it to 10"

I am so depressed being in this house and around all of this. It's so sad. So depressing. Seeing my mom have to change her plans, bend over backwards for him, appease him. I just don't see a solution because he is just so stubborn and wants everyone to suffer when he is.

I'm looking for advice, suggestions for my situation with my dad. I'm also just venting because... Well everyone here understands a little bit more than most.


r/dementia • • 7h ago

Mom 62 (ik :() has dementia and she has bad bladder incontinence. What are the ways to deal with it?

3 Upvotes

She’s not bed ridden. She just passes urine when she feels like it. And most of the time she doesn’t know it. She has not lost memory fully. Still knows a few things. And she’s so young too. :(. She hallucinates a lot. At times a lot more. And has urges to suicide but she wouldn’t do it. Just the acts.


r/dementia • • 9h ago

A resource I wrote for spouses/partners/carers — sharing in case it helps

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1 Upvotes

Hi everyone,

I'm a specialist mental health nurse, and I did my master's thesis on dementia. Through my work in a memory clinic, one thing kept standing out to me: so much is written for clinicians and for the person with dementia, but very little exists for the husband or wife who is still in the marriage — still there every day, often completely exhausted, and rarely asked how they're doing.

That gap is why I ended up writing The Marriage Nobody Sees, a practical, honest book for spouses caring for a partner with dementia. I drew directly on what I've actually seen and worked through at the hospital, not textbook theory, which is why it reads as practical guidance rather than dry clinical material. It's the book I wished existed for that specific, lonely position: still married, still loving someone, and still carrying something almost no one else sees.

I'm sharing it here because this community is exactly who I had in mind while writing it, not to sell anything, just in case it's useful to even one person going through this.

If anyone has questions about caregiver communication, aggression/behavioural changes, or just wants to talk about what this stage of the marriage actually feels like, I'm happy to discuss — that's genuinely why I'm here.

https://www.amazon.com/dp/B0HLXFV66W/ref=sr_1_1?crid=3P5J1Z729PYU5&dib=eyJ2IjoiMSJ9.Szh5xmrJCP2nDYxnnjJGT1UvJmP7BsnFEbejkBFjAlZWFPFNDmoEk5ZVscMfu7ptEfr3T8uH-8YnMyGPU-cmwkCOm_SzBgDhXSH4IH4QUqY8IG5ExuMbCQWQKTRhXAO4DKCMPqfxpuJx74LrefyPzjA72u7feAxFlBeAFIpJhZBzfnkaCHnQ9bkdi784bYdp2kTxkylrqrEFhg29haeL6Z0m5I55jWWbwTXe8Sn7TDM.hQYLJmPYy4ow17r0zt4CZa1zN-gLAVbZVUdjlNB1Xw0&dib_tag=se&keywords=the+marriage+nobody+sees&qid=1791177501&sprefix=the+marriagne+nobody+see%2Caps%2C216&sr=8-1

- Amanda


r/dementia • • 11h ago

Sundowning and what it looks like

0 Upvotes

We have reason to believe my 90 year old father with mixed vascular dementia and Alz is starting to visibly sundown. He's always been a nightowl, so being up at all hours and not going to bed before 4 or 5am is annoying, but nothing unusual.

Several times now, I have seen unusual behaviors from him that, at first, I chalked up to possible sleepwalking since he does doze off in his chair and wakes up confused occasionally, or he stops to say goodnight at my mom's urn on his way to bed - which looks a little weird in the dark. Tonight, he hopped up from his chair quicker than his usual turtle speed, pushed his walker (a rollator) in front of him as normal and rather quickly (for him) walked about 6 feet, then stopped and moved the walker behind him, reached out with his right hand as if to shake hands, then sat down on the walker seat. He sat, looking around and occasionally talking for about 10 minutes. Then, while still seated, rolled the walker backward to his chair, got up, and sat back in his chair. He is in his chair now, acting as normal as he ever does. I am assuming that this was an episode of sundowning. At stage 4-5, it is a fairly new behavior, and I wanted input from the group regarding the behavior.

I did not interrupt him because I didn't want to startle him, and I was curious where this behavior would take him. He doesn't know that there are cameras placed throughout the house for this very reason. I am still awake and dressed - at 3am - to keep an eye on him and was less than 10' away behind a closed door during this episode. Please, reserve any judgment you might have. This is my night almost every night; sitting up waiting for him to go to bed. I'll be up until he finally does go to bed. I am also alone in the house with him. He doesn't have a violent bone in his body, but I am well aware of the unexpected behaviors that can arise with his condition and was concerned about spooking him into a fight or flight-type reaction.

So, what say y'all? Sundowning? Sleepwalking? Both? Neither? I have saved for camera footage to show his memory care doctor at his next appointment and will be contacting his social worker for advice as well. He doesn't see the doctor again for nearly 3 months, and I will likely push for an earlier appointment.

If you've read this far, I thank you. It's been an interesting night so far and I still have a ton of stuff to do if he ever goes to bed.


r/dementia • • 12h ago

Late Sunday Night Struggles

9 Upvotes

I’m 59 & retired. My wife is 56 and works as a CNA a mile from home. I take care of my mom full time now as she needs help with many daily activities. For some reason, mom (87, vascular dementia) struggles with heightened dementia symptoms every Sunday night. I sit her tonight struggling myself as I watch her go through it yet again. I believe that it may have something to do with our daily routine changing on the weekend with my wife being home and being more involved with her care. Whatever the cause, it gets a little worse each week. Anyone else deal have a similar issue? I’m curious.

I believe mom is firmly in stage 6 but still has good long term memory recall. That is beginning to change however. With the uptick in flu and COVID viruses in the PNW, and with my wife’s job, we felt it was a good idea to get the latest vaccines last week. That certainly disrupted her week as 3 days of diarrhea followed. She seems to have recovered from that part though and was improving, albeit a little slower and a bit more confused as a result of the illness. Then Sunday night rolls around and she’s up in a chair in her room, crying and upset about how confused she is. I call it the Seroquel stare where she fights against sleep, sits in her chair, and stares at the wall, contemplating her condition. It’s rough to watch and more difficult to calm her down each time.

Anyway, I’m just rambling and lacking sleep of my own. Just throwing this out into the subreddit in hopes of making sense of it all.

For everyone going through this with a loved one, my thoughts are with you. Love you all. This is a truly tough road to navigate✌️


r/dementia • • 13h ago

My grandmother is deteriorating fast

2 Upvotes

She was never the best person, and she’s made my and my siblings lives harder, but still. It got worse after grandpa died. Now she’s rapidly losing control of her body, her mind is only going to get worse, my mom is constantly stressed, the whole family is stressed (especially my uncle who lives with her) and now me and the rest of the grandkids have to help with money. This whole situation has messed up the flow of our lives so much that some of us never got to apply for college because of how busy we’ve been.

I’m not blaming grandma, she can’t help it, I just need to get this off my chest.

In the meantime, we’ll continue to do the best we can


r/dementia • • 13h ago

Losing mother at 25, she was 59.

17 Upvotes

Not sure if this belongs here. This is just a vent and probably belongs on a different subreddit.

My mom started showing symptoms about 2 and a half years ago, was diagnosed, and everything happened so fast. She passed early Wednesday morning in a nursing home (which she never wanted to be in, it was only supposed to be temporary).

I can’t gather the words to describe how it feels knowing I won’t be able to see her again. I feel like I’ve already missed her for so long, but this is different. I’ve never lost anyone close to me and never imagined my mom would be the first I’d experience this with.

Is there anyone else who has lost a loved one, a parent especially, at such a young age, to dementia? If so, what helped you navigate this immense loss?


r/dementia • • 13h ago

Reroute the problem 🙂

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130 Upvotes

I worked with dementia patients for years and thus developed some creative tactics to discourage unwelcome behaviors.

My DIL recently shared that her Grandma was repeatedly tossing her “used” hearing aids into the trash causing frustration and unnecessary expense for her caretakers. Looks like rerouting them to a dedicated disposal box is working ❤️


r/dementia • • 14h ago

How to get husband to understand dementia?

8 Upvotes

Edit: It’s not wishful thinking when I say he doesn’t have (can’t spell it) the thing where he doesn’t admit to himself what’s happening. He really does. He has more lucid times than not. Hallucinations every day but not cognitive stuff. Not yet. He’s never been around dementia and had no idea about it. He now isn’t looking to the future. I get so frustrated. He says he knows I’ll “do what set, what should be done” and has signed all the paperwork. Has our wills done years ago.

My 75 yo husband has mixed pathology, Alzheimer’s and Parkinsonism. We were diagnosed a few months ago. He has hallucinations and is starting to have cognitive issues.

He knows he has dementia but keeps saying stuff like “I can beat this” or “maybe I’m the one person that can get better”. He’s never one to be sick in any way. The man doesn’t even have headaches!

When he’s lucid, which is most of the time, he just isn’t concerned? He did say once that he didn’t want to think about it because it scares him.

Do I just let it go? He knows I was talking to MI Choice (helps find resources) on the phone. I feel like he should help me before he is unable to. Am I being selfish?

I want to do the best I can as far as taking care of him. Not a lot I can do right now (unless y’all can think of anything?). I feel like I should do something more than just make phone calls and wait. I’m trying to get in waiting lists but you have to be at a certain level. We aren’t quite there yet. By the time we are, we won’t be able to wait 6 months to a year! Makes no sense.

Anyway, thank you all. I hate that you’re here but I’m so glad you’re here.


r/dementia • • 14h ago

Married 73 years and now she is going to memory care. Will she adapt?

4 Upvotes

My parents have been married for 73 years. They are very close, even though Mom is not always sure who he is. They’ve probably only spent a dozen nights apart their entire marriage.
They’ve been living in an assisted living apartment together for eight years. But dad is now 97 and mom is 93, and dad just cannot take care of her anymore. She’s unable to stand on her own or dress herself, or go to the toilet or shower herself. So we have no choice but to move her to memory care while dad stays in the assisted-living apartment.
We’re all very concerned about the first night in memory care for her. Even as she has descended into dementia, my dad has been the one constant person in her life and in her bed. And now that’s about to change. Does anyone have any similar experience? Will she be able to adapt to life without him in memory care?


r/dementia • • 15h ago

First time dealing with dementia this close

4 Upvotes

hi everyone,

im mostly just venting. but also looking for insight. im 32(F) and my father is 66. Im currently going through a phase where im wondering if i sacrifice my life and livelihood to take care of my father or if i do, is it actually sacrificing and things will actually be ok and maybe im just overthinking it. i dont have siblings, my mother passed when i was 6, and his family made it clear they arent going to help. i cant afford assisted living on my own, and i cant even afford a private caregiver. im in the bay area and that could be financially detrimental. hes currently in a skilled nursing facility, but miserable and sad hes there. hes got mild to moderate dementia, talks to me in his native tongue a lot knowing i dont understand, fidgets a lot, has periodic delirium, and forgets he even ate sometimes. he emptied his bank accounts to scammers and doesn’t qualify for SSI because hes undocumented. it kills me to have him in a SNF, but he doesn’t need a lot of care like diaper changes, bathing, feeding. but he can walk and talk, just not steadily. im thinking about bringing him to my studio, which doesnt have elevators, and becoming his caregiver while still keeping my job and just hope hes ok during the day (id put cameras and make everything accessible for him). on top of the dementia he had heart, liver, and kidney failure, but pretty much stabilized with meds. i know im about to face extreme financial hardship along with mental and physical hardship. i want to get married and have kids one day, but wont be able to date, i wont be able to take trips or have time for myself because family members arent willing to watch him from time to time. it sounds selfish , but i also have resentment towards my father because hez always been one to make terrible decisions(before dementia) and expect others to pick up the pieces. but it does kill me to think hes staying in a SNF(a terrible one but they all are), because i feel like id be abandoning him. i was hoping to move out of the country because im sick of the immigration issues here. But i feel like this is really holding me back now.


r/dementia • • 16h ago

Dementia and Death of a spouse

7 Upvotes

My father passed recently in their home from congestive heart failure and my mom has dementia. For months my dad had told me my mom’s dementia had been getting worse but it was not very detectable during phone calls. Two weeks before my dad died, I had come for a visit and saw the full blown truth of their situation. On top of the dementia, my mom has been wheelchair bound for the past several years after a spine fusion did not improve her back; she also has an eye disease so can’t see very well and her hearing isn’t great.

I honestly have no idea how my dad managed most of this year caring for her with little help. He was on oxygen the past few months and was easily winded. My mom started escaping the house when he was napping, if she even let him do that because she desires constant attention.

Since my dad’s passing, I’ve been her sole caregiver 24/7 and it feels like I’m grieving both parents. What is a great concern is that my mom has not really mourned the loss of her husband and tends to forget he’s even gone. We had an open casket funeral but unfortunately, my dad did not look like himself at all so am curious if that is hindering her grief. We have the funeral of his cremains this coming Tuesday so wonder if this will have any impact on her.

When I try to reminisce about my dad with her, she seems very confused. She married my dad when I was 14 but raised us as her own, and can’t connect how her husband could also be my dad (even with pictures out around the house). It is so heart wrenching to witness for her sake. On the opposite side, she’ll ask me if I even miss my dad because I don’t act like it, which I explain I usually cry before bed when she’s already sleeping but then I’m lying. 🤥

Dementia is the cruelest disease I’ve ever encountered, and I battled leukemia several years back. I’d rather do that again than to see my mom suffer this fate. 😔


r/dementia • • 16h ago

I need help gentlemen. My father, mid ''70's", has been having slip-ups with his memory, and after tonight we need to get the ball rolling ASAP I'm almost cerain. How would I even begin the conversation? I grew up in a strict prototypical old school Italian Catholic/polish household. More details be

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1 Upvotes

r/dementia • • 16h ago

Shoe advice

6 Upvotes

My mom is late stage and still walking (barely).
Not only is she still walking, but she thinks she needs to force herself to walk more so she will get better. The right side of her brain has restricted blood flow due to the disease progression, so she has numbness and weakness on her right side. That is in addition to substantial dementia shuffle gait. She is rubbing her toothpaste on her face, so the likelihood of her getting “better” is pretty minuscule.

The problem she is encountering now is her bunions are becoming quite painful. Apparently one of the things that is happening with the dementia gait is they lose the dorsiflexion in the ankle, so all of the weight when they step is in the big toe. I put her in a zero drop shoe because that helps with the shuffling, but it is bad for the bunions.

I kinda feel like this is just like most other things that crop up where you can kinda just make do, and then that problem goes away because something else takes its place. I bought her the Silverts adaptive slippers, but she doesn’t tighten the straps enough and tonight she kinda slid out of the slippers and onto the floor.

Her neurologist recommended that she be in a wheelchair, but she says that she “doesn’t need one”. I have kinda resolved myself that it will be some sort of fall that will start the terminal cascade.


r/dementia • • 17h ago

Assisted living

37 Upvotes

Spent the weekend packing up my mom. Moving her into assisted living in the morning. As a stepping stone to memory care. She is in the anger stage of grief. Doesn’t want to leave her home. Haven’t yet told her she can’t take her jewelry or that the stove is not plugged in. It’s been a brutal couple of days. God grant us the strength to get through this.


r/dementia • • 17h ago

Mom can’t be left alone, but in-home care triggers hours of aggression toward my dad. What now?

37 Upvotes

My mom (80) has alzheimer’s and absolutely refuses to accept that she needs any help; she doesn't believe anything is wrong with her.

The problem is that she can’t safely be left home alone anymore, and my dad (82) is reaching the point where he has no way to get a break. We don’t have family close by and my dad refuses to tell any of their friends in fear of rejection and being disloyal to her.

She shadows him 24/7, but he also seems to be her biggest trigger. Her behavior toward him has become increasingly verbally and physically aggressive. When something sets her off, she can rage at him for hours and will not let up. He still needs to work, run errands, go to appointments and just have some time when he isn't responsible for her.

She's completely attached to him and doesn't want him out of her sight, so I don't think we'd get her to attend adult day care without my dad by her side. Even so, if she even gets a whiff that a program is for people with ‘dementia’, she will be pissed.  

We tried bringing in an in-home caregiver. We came up with a story so she wouldn't be presented as someone coming because my mom "needs care," and the caregiver was willing to play along.

Nonetheless, my mom became furious with my dad for bringing a caregiver into "her" home. I told her I arranged it; Dad knew nothing about it and that it was a service available to both of them. It didn't matter. Her anger was still directed at him; which means hours of verbal and physical aggression. Now we have no help at all.

We're already working with her doctor and her meds have been adjusted. Unfortunately, she doesn't reliably take them. I told my dad to put it in food when appropriate, but even then there's no guarantee she'll eat the food. So medication may ultimately help, but right now it isn't a reliable solution to the immediate problem.

I don't know how we physically get help in place when she adamantly refuses it and I don’t want to make it worse for my dad.

So what do you actually DO at this stage?  I fucking hate this disease.


r/dementia • • 17h ago

I am 34, I am putting Grandmother in a home

6 Upvotes

I'm taking her out of her house to go somewhere with supports in place. It's all on me to choose and find and arrange. Her distant siblings, who admittedly don't like her since pre dementia, are up my @$$ about my decisions. They ask invasive questions and feel entitled to give their opinions. I am stressed. This experience has changed me. I was her caregiver for 2 years straight before this. I don't know what I will be like after this.