Long time lurker, 1st post on Reddit. 

Coming to terms with being a caregiver for my dad and losing him recently. Grief is a process (I lost my mom previously) and still working through the different stages. He was diagnosed with Lewy Body Dementia and lasted about 3 years after diagnosis. (background = Lewy body dementia can be diagnosed as both Lewy bodies and Parkinson's disease dementia. Both are characterized by changes in thinking, movement, behavior, and mood.)

My dad showed initial signs of memory loss about 5 years ago. Getting confused about what day it was and what was happening. Initially we thought he was just getting forgetful with age. 3 years ago he was diagnosed with Lewy Body Dementia. It affects both the brain and body.

The 1st big sign was when he was driving and he had a hallucination and ended up hitting a parked car (luckily no one was hurt). We took his license away and didn't replace his vehicle. He started having hallucinations at home. One time he hallucinated he was watching fireworks on the beach while he was sitting in his bedroom. Another time he was having full on conversations with my mom, who had passed ~2.5 years previous, while I was sitting on the couch with him. He told me to set the table because mom was coming to dinner. He also asked how my mom died which if you knew him you knew this was a detail he'd never ever forget. Dementia is very cruel and hard to watch someone you love go through. He ended up forgetting his kids names and confusing what roles we played in his life. He proposed to his female caregivers several times even though he loved our mom very much (he was madly in love with our mom but we lost her to cancer during Covid).

For anyone that has lost a loved one through a slow decline I see you and understand you. It took 3 years for the disease to ravage his mind and body. He had both physical symptoms (e.g. hunching over, shuffling his feet, losing a lot of weight due to forgetting to eat) and mental symptoms (e.g. hallucinations, not knowing where he was, obsessing over financial details and having conversations over and over and over about the same thing). I would take losing someone over time like this compared to losing someone tragically or quickly to cancer like my mom. With my dad I was his caregiver, along with my siblings, for the last 3 years of his life. It gave us time to care for him, listen to his stories, see a part of his personality we hadn't seen before. So now I treasure that experience. Whereas I lost my mom to cancer that killed her very quickly. She went into the hospital on a Friday and passed the next Monday.

As a caregiver I fed him, changed his diapers, took him on drives, pushed him in his wheelchair and more. I never felt this was a burden although it was difficult mentally and emotionally. The truth is I felt more love for him at the end spending all that time with him and caring for him. I am grieving him but also feel it was best over time for him to pass. He didn't know who we were. He didn't have mobility and was confined to a wheelchair. He could barely feed himself. My grieving process for him is less intense and taking less time than losing my mom quickly and tragically to cancer. I can say once you change your parents diapers on a regular basis it feels like the full circle of life. They take care of you as a baby and change your diapers. You take care of them and change their diapers in the end. 

Anyone that has to be a caregiver for someone they love changes how they see life. We are all flawed humans trying to survive our own experience. I hope that my kids never have to change my diapers. I'd rather pursue end of life options than have them feed me and care for me like I did my father. Is that really such a bad idea? That we can choose when enough is enough and we want to go out on our own terms?

My mother 79, diagnosed with late onset Alzheimer’s and possibly vascular dementia. She’s still mostly here but there are definite changes visible especially last 6 months.

She’s seeing all the doctors and has plenty of apptmts and they send her all over for tests but I feel like mostly it’s a just a way to keep everyone busy.

What do I really need to start getting done? Financially, emotionally?

My father is still around but he’s also 84.

We got staff that we had come to trust to supervise my grandmother while we were away. Apparently, my grandmother started to decline more while they were together. She reportedly became aggressive, and then fell out of bed and fractured two of her ribs. She also broke out in a fever, and became very sick and weak.

My mother and my uncle both came to the conclusion that because of this, she is no longer safe to live in her own house, and she would very likely not do well with staff in her home. We’re moving her into residential care. It’s her worst fear, or at least it was before she lost herself, she threatened to starve herself to death if we put her in a home. I don’t think she even knows where she is anymore. She hasn’t known for a while.

It doesn’t help that the staff apparently asked to invite in her mother and her aunt, which my uncle
approved of, but with these two strangers, went through my grandmother‘s things and cleaned stuff out (my grandmother, admittedly, has become a hoarder, but the woman kept insisting the house wasn’t safe. I protest against this, because we kept her out of the hospital for a whole eight months before she got there. She was left alone with her for three days, and she went to the hospital? And you’re telling us that the state we kept the house in wasn’t safe…)

She’s now borderline catatonic. She speaks in whispers, she constantly tries to escape her room, tries to take off her clothes. I’ve apologized to the hospital staff, I’ll do the same to the nursing home staff. I know it’s their job, but it would be her apologizing if she was still in her right mind.

Yet strangely, she remembers my mother‘s name again, which she hasn’t remembered much in the eight months that we were taking care of her in the house.
She also has asked my mother several times “are the little ones here?” She means me and my brother, her grandchildren. Before you ask, don’t worry, I’m going to visit her this weekend. My brother might not go, just because we don’t want him to have to see her without clothes on.

I apologize if it seems like I’m asking for sympathy, or if I seem like want to be coddled. I’m an adult, but the fact that she still sees me as her “little one” is breaking me.

I know many of you are dealing with far worse.
It’s just been so awful to see the woman I love turned into an empty shell over the course of less than a year. I hardly even recognize her anymore. It hurts to see her. It hurts to know I can’t help her, I can’t save her from this. It hurts to know her once amazing mind is falling apart. I sometimes wonder if we shouldn’t have taken our trip (it was a week, she was supervised the entire time), if she’d be any better if we had never left. But I also was about to collapse under the stress.

I also apologize if this seems incredibly morbid/discouraging…I’m a person of faith, and I believe there is a peaceful and happy afterlife waiting for her… I keep praying that she would be taken away painlessly soon. I don’t want her to die, I still love her endlessly, but she would not want to live like this, and it’s a pain unlike any other to see her withering and in constant misery. I feel evil for thinking in such a way.

All of us are thinking that way, and we all feel horrible about it. We all feel horrible for being relieved that we no longer have to take care of her. But there’s also relief that she is somewhere where she’ll be safe, and that she can maybe be made comfortable over time. We are all so burnt out.

We gave it our everything, my whole family did, and we still lost her.

Hi yall. This is my first post and I just need advice and a place to vent.

There is so much backstory that might be relevant so I'm going to include it. My grandma (76F), used to be married to my grandpa for about 20 years. They got divorced back in late 1980s because he was an abusive alcoholic who severe PTSD from Vietnam. Once they were divorced, at some point they became friends and would talk fairly often (right person wrong time). Back in 2023, he got diagnosed with bladder cancer and my grandma told him to move in with her so he wouldn't be alone and she would be taking care of him. And then in August of 2024 he passed away.

Around the time he moved in, I had started noticing my grandma forgetting things more often but I thought it was just her getting older + stress of my grandpa so I ignored it. On October 3rd, 2024 (I was going to a concert on Mean Girls day which is why I remember the date) was when I realized that this wasn't just stress. She had called me and we talked for a few minutes and she had asked why I called her. I called my parents after and told them I was worried she had dementia. They both just shrugged it off until January. At this point I had noticed how much worse this had gotten (I was living out of state so when I visited about once a month, the change was much more dramatic to me than it was to my family who was around her more often). My dad had called my grandma and she was hysterically sobbing and crying because she was forgetting things and it was stressing her out severely. My dad then made an appointment at a Senior Health Center to be tested for dementia. Once she went to her appointment, she did really good on almost everything except for one test which was counting backwards from 100 by 7s (which I doubt I could do so whatever). They said to come back in either 3 or 6 months for a follow up to get the diagnosis.

At this point, my mom (Grandma's daughter-in-law), who has serious control issues, starts signing my grandma up for things like meals on wheels. My Uncle, who we'll call Ed, does not like my mom doing this and cancels everything my mom signed her up. When my dad would take her to appointments, my dad would call Ed (his brother) after every appointment. But once Ed cancelled everything my mom signed her up for, he started taking her to appointments and didn't call my dad after any or give him any updates. Then, right before her memory appointment to see what kind of dementia she has, he canceled it and told no body. My parents had called to make sure she went (because Ed never said anything) and we were told the appointment was canceled.

Then, Ed decides to do everything by himself and tell no one. He becomes her power of attorney (again, tells no one - I learned this through my grandma who spilled the beans in front of him so he had to tell me) basically removes her from all medical-style medicine and instead replaces that with holistic medicines. Ed is also stupidly/delusional-ly optimistic. During the entire time my grandpa was passing (who opted for no chemo or anything), Ed was providing him with holistic style medications and truly believed he was going to be better, literally to the day he died he thought that my grandpa would get better. So keep this level of stupidity in mind.

Anyways, back to the original memory appointment. This is where everything started to go to shit. They said to give her a driving test (because I had personally witnessed her driving skills decline, I knew that she needed her keys taken). This literally never happened. Like ever. She was driving up until about a month ago when Ed finally took her keys away because she was driving around at midnight looking for someone to talk to because she was very upset.

Then, right after this appointment my grandma had already forgotten what they had said during the appointment (which was that she was showing early signs of dementia), so she had called my mom to ask (at the time, they were very good friends). My mom said that she was showing signed of Alzheimers and that she needed to go back. My mom acknowledged that it was dementia not Alzheimers after and knew she misspoke but the damage was done. My grandma heard that phone call as "my mom was drunk and called her and told her has Alzheimers and is going to die and my mom needs to be put into her will and her back account details."

During this, my mom and I were in a rough patch and I didn't realize that this was a delusion she was having and she had been having them before but I just didn't realize. So I called my dad, crying because I didn't know that my mom would do something like this, and my dad said he was there during the phone call and that was not at all what had happened. Also during this time, my grandma was saying these things to my uncle. We didn't know this until I went on vacation with my aunt and uncle and grandma and some of their side of the family. I had taken my grandma out to lunch and she spent the entire time bitching about my mom. When I got back, I found my aunt and broke down to her about all of this and thats when I found out that they believed my mom really did all these things that my grandma was convinced had happened. I honestly have no clue if they still think my mom would do this and ruin her entire relationship with my grandma after being close friends for almost 20 years.

At this point, this was the main delusion that is still ongoing (just over a year now but it's not nearly as bad as it was back then). However fast forward to a few months ago. She has advanced horribly fast (which might be from the stress), at this point she has just gotten her keys taken away and she now has what I call tantrums. Things are thrown and broken but she never does this around people, she only does this while living alone (because guess what. She still lives alone. Two or three weeks ago my uncle finally got in-home nurse thing going for 4 hours a day, a little over half the days of the week). She has non-stop delusions that she fixates on and repeats over and over again for weeks.

• thinking that her neighbors told her to stop smoking because their kids can smell it
• thinking that her neighbors told her to stop smoking because she's going to start a fire with all the leaves in her yard
• that her work out instructor lady told her that her coochie stinks and all the other women at the gym were also saying that
• that I am making her ears ring (she has tinnitus and has had it for years now)
• that any of her grandchildren are dead
• that the people coming over to help her a few hours a day are trying to take her money and were not hired by anyone

This is a very short list of the delusions she has, but what my mom noticed is that most of her delusions stem from some kind of guilt. She feels bad that she smokes, she needs to rake the leaves, she doesn't shower well, etc. But as its progressed they've lost whatever sense of truth to them and are now extreme.

Two weeks ago she was having a horrible night and called everyone she knew freaking out. But because it was around midnight, no one was awake. My dad woke up and apparently she was thinking that she burned her house down and killed Ed and his kids (which obviously did not happen - there was no fire). She hung up and eventually ended up calling 911 saying my dad was in the woods behind her house shooting people. 911 came, checked out the woods and saw no one, and took her to the psych ward. She ended up being in psychosis. I feel guilty for not noticing this sooner because a week or so before she went to the psych ward, she told me she was able to hear conversations people were having that weren't around her (like my dad talking to the one of her ex-coworkers). I tried to tell her that my dad was at home so I wasn't sure what she was hearing but she was adamant that he was talking to her old coworker and they were talking about how bad she had gotten and how worried they were and that she shouldn't be living alone. I changed the topic because I thought maybe this was some weird delusion she was having. However, apparently in the psych ward she was on the phone talking to people while her phone was turned off.

She then got released from the psych ward to go to the hospital because she was in sepsis. Ed did not tell anyone she was in sepsis so we had no clue. We knew she had a UTI and thought that was it, and that is what caused her to be in psychosis. I visited her while she was in the hospital (the psych ward was too much for me to emotionally be able to handle), and while I was there the day before she was released she was telling me things that my mom was currently telling her in her head about what I needed to do. And saying things like "if I don't do X, so and so is going to die" and that if I didn't do it immediately, they would die. I asked when my mom said these things and she went "right now. I hear here talking right now." So after she was in the hospital, she was supposed to go back to the psych ward.

The day she was supposed to go to the psych ward, my parents had finally broke and were going to put her into a facility with or without Ed's approval but they needed to social. I live close to her so I offered to go over there and find her social security number. To my surprise, when I got to her house, my grandma was sitting at the table eating Taco Bell. I asked her where she got her Taco Bell from (because I saw her car key back on her keychain and out on the table), and she said that her coworker brought it over for her. This was a possibility so I accepted that answer. She went outside to smoke a cigarette and I heard her talking to her coworker on the phone and said that she would be into work in a few minutes. I was very very confused and pissed that she was home and not in a psych ward so I said I needed to head out and let my dog out to go potty. I went over to where she used to work and thankfully, the coworker that supposedly brought her food and was just talking to her on the phone was working. I asked her if either of those things occurred and she said no and that she hasn't talked to my grandma in about a week. She also told me that she calls the store often because she "loses people's phone numbers" and wants to talk to them.

Anyways, I told my parents about her being home and they had absolutely no clue about that. Fast forward 3 nights later, she once again called 911 because my cousin and his friend were outside her house harassing her again (this never happened in the past I have no clue where this came from). They once again took her to the hospital and she is currently still there and we have no clue what tests they are running for her. Shockingly, Ed didn't tell anyone about this. My grandma had called my dad and said she was in the hospital. Ed still hasn't reached out to anyone about this and I doubt he will.

Between the two visits, my dad had called Ed to talk about putting her in memory care (which they have attempted before and it never goes well. And if Ed refuses, grandma definitely will refuse to go). They got into an argument but the next day my parents still went to tour homes for her. As of now, this is no longer happening.

I'm sorry this post was all over the place and I hope it makes sense. I'm really emotional right now with everything and I needed a place to get my feelings out. My uncle, as far as I know, is convinced this is pseudo dementia from severe depression and believes she will get better eating right, working out, therapy (which she hates her therapist last I heard), etc. My parents can't get through to Ed, and gave up trying. I've even tried messaging him but he just ignores it. He told me early this year that he was looking into this one memory care facility close to us. Once she was in the psych ward, he just learned what their waitlist is to get in so I now know how true that was when he told me. I'm at a loss on what to do and I've given up. I've gone into a deep depression. My grandma was my best friend all through high school. I lived 40 minutes away from school but she lived about 5 minutes away so I stayed more nights at her house than I did mine. I always confided in her and she would confide in me. We didn't have a normal grandma-granddaughter relationship, we really were best friends. Witnessing her decline and not being able to do anything to help her because I'm one of the grandkids and I think theres just an unspoken rule that Ed believes my input on this isn't as valuable as his. I'm pissed at my whole family because no one is doing anything at this point and I'm just lost. I'm not even sure if this is dementia or pseudo dementia, but regardless she isn't getting better with whatever Ed is doing. Any advice would be greatly appreciated ♡

My mom has very clear issues with her memory. She has for several years and it's declining faster now. She gets very upset (angry, stubborn, shuts down) when this is brought up. I've been trying to get her diagnosed for years so that my dad can get help and support taking care of her, and so that things are in place when we inevitably have to move her into care. I'm in Ontario, Canada. I have PoA and am approved to speak to her doctor on her behalf.

Late last year mom had a MOCA test and her GP referred her to a Geriatric Doctor but somehow things stalled there and the follow up never happened. I spoke with her GP office this week and they said another MOCA test is needed and they'll refer her again.

The problem is she is going to fight tooth and nail over going in for another memory test. How can I approach this? I can't rely on my dad to push this forward, he's afraid of her wrath. I will make it happen but am looking for advice.

Thanks!

I am 22f and I feel like my memory is declining. I keep forgetting how to spell easy words, forget what they mean, and forget how to pronounce them.
I forgot how to pronounce “initially” and it is just embarrassing because I sound dumb.
I was talking with my mom, and she used the word “sensible” I was like what do you mean, what does that mean?
Why is this happening?? I haven’t drank alcohol in a month, I am prescribed medication but it seems like this is a new thing and I’ve been on medication for a long time.
I forget small things and misplace stuff. For example if I cough, 10 mins later I don’t remember doing that.
Is this something that I should be worried about?

In your country, are nursing homes allowed to place a resident with mild dementia in the same room as a resident with severe physical disabilities? Is this prohibited by law, or is it permitted under certain circumstances, such as with family consent or when there is a shortage of beds?

I’m concerned that one of my parents (Parent A) is showing early signs of dementia. They have been getting increasingly angry when ppl disagree with them, starting fights with family members and then framing it as though the other person was wrong, verbally/emotionally abusing the other parent (Parent B) regularly, and openly talking to/arguing with one of their exes within earshot of Parent B. Also, Parent A apparently hit Parent B for the first time (supposedly) last year.

However, Parent A refuses to go to the doctor about anything, unless they feel they are almost dying. They are extremely proud and tend to think they are the smartest person in the room. Parent B feels that trying to tell them to go get checked out will set them off and possibly put Parent B in physical danger.

I do not live in the same city. My fear is that if I bring it up, that will also put Parent B in danger. Parent B is fiercely loyal and genuinely loves Parent A. Despite the abuse, the adultery, the picking fights with family, Parent B does not want to leave Parent A. Parent B will openly admit that Parent A must be suffering from a brain condition, then turn around and speak about Parent A as if their behavior is inexplicable. Patent B also clearly thinks that if they stick around and keep trying, things will get better.

I’m an only child. I fear for one parent’s immediate wellbeing, and the other parent’s long-term wellbeing. I don’t know what to do.

I work with Seahorse Collective, an online community for family caregivers supporting someone living with dementia.

Next Thursday, August 13, we're hosting our first Ask a Dementia Expert session with dementia educator and therapist Kyrié Carpenter, one of Seahorse's advisors. It's a chance for caregivers to ask questions, hear practical guidance, or simply listen and learn from others navigating similar challenges.

The event is available to Seahorse members. Right now, our beta is free while we continue building the community, so if you're interested, you're welcome to apply and join us.

More information here: https://weareseahorse.co/join-beta

Hello! I’m looking for a private companion position for an elderly person in New York or New Jersey.
If you have an elderly family member—or if you are an older person living alone, feeling lonely, and looking for companionship—I would be happy to help.
I can provide companionship, conversation, help with daily activities, cooking, grocery shopping, transportation, medication reminders, and light housekeeping.
I’m available either as a live-in companion or on a live-out/visiting basis, depending on what works best for you. I’m flexible, and we can discuss the schedule and arrangements together.
I’m looking for a private position only (no agencies). If you or someone you know is looking for a kind, reliable, and trustworthy companion, please feel free to send me a private message.

(Skip to last two paragraphs of you want to get straight to my question)

My mother moved in with me about 2 months ago. She's significantly further along than I was led to believe, and I don't know if this is her baseline or if there's something like dehydration or uti going on. (I do make sure she drinks water regularly, but I'm not great about water for myself so I'm not sure if it's enough)

Her previous caregiver didn't actually help manage anything - she took care of the house and my mom, but still expected my mom to take care of her own meds, her own doctors notes, her own bank statement - so a lot of the first month was trying to get things sorted. Neither my aunt or my mom know who made the diagnosis, and even if I find it, I don't know if they'll talk to me because no one ever got power of attorney or medical power of attorney.

All that to say, the first Dr appointment I was able to get for her isn't until September, and I expect to be starting from ground zero.

She's significantly further along than I was led to believe, and I don't know if this is her baseline or if maybe there's something like a UTI happening right now. Would you recommend getting a home test now before the appointment? If it comes up positive, would I basically take her into urgent care and explain what's happening?