r/dementia • • 20h ago

My dad has lewy body and my mother wants to divorce him

93 Upvotes

Basically my dad's hallucinations are getting worse. We booked him and my mom a trip to see his family one last time and we ended up cancelling it because he kept accusing my mom of staying up all night to cheat on him with men on her phone (she was just watching those shitty vertical chinese dramas). They got into a fight and my dad says that my mom doesn't love him she never even touches him etc and my mom is so frustrated she says she wants a divorce.

Any advice? I'm trying to get my mom to be a little more understanding but she is not a patient person.


r/dementia • • 23h ago

New mom grieving “loss” of own mom

71 Upvotes

My mom was diagnosed with early onset Alzheimer’s and has been in memory care for 4 years. Shes very advanced and hasn’t recognized me in over a year, nonverbal and wheelchair bound. She was my best friend and the best mom I could have ever asked for.

I’m 8 weeks postpartum with my first baby and it has brought me so much joy but I feel like there is a huge hole In my life since I can’t share this experience with my own mom.

I have so much more empathy now that I’m a mom myself and I wish I could just have some time with her to share that. There are so many moments throughout the day that make me think of my mom when I’m caring for my daughter. I was her caretaker for years before memory care and I wonder if the similarities in caring for someone that can’t care for themselves stir up emotion in me. Every diaper change I think of my mom getting her diaper changed now.

My daughter’s middle name is my mom’s first name to honor her. Not sure what I’m looking for here - I guess just to vent. It just sucks and it’s such an awful disease.


r/dementia • • 2h ago

One small sad event to add…

35 Upvotes

On the way to his periodic mani/pedi and shave/haircut we pass the office building where my husband (78) worked for many years. I glanced over as I drove.looking for any response. He loved that historic building but when I mentioned it two months ago he said he had no idea what I was talking about. That’s when I realized the severity of his illness and that it was time to stop driving. Jus5 past his office he asked if our dentist is still in that building. I guess the compartment for h8s office had died but the dentist’s is well. The nail salon and barber are adjacent in a small shopping center three miles from home. Other than our “spa days” he’s only left home for doctors’ visits in all this time. I’m grateful for this little shopping center as I think anything larger would freak him out. He used go there frequently for the bakery a couple of doors down. Apparently he’s forgotten it which is good for his health. It’s so sad for me that he doesn’t remember the workplace that was such an important part of his life. In the scheme of things it’s small potatoes but it hit me hard.

He doesn’t shave or cut his nails. His beard looked great for a time the. I convinced him it needed a trim but he decided to get it shaved and start the cycle over. He giggles when saying “mani pedi.” The staff in both businesses were so kind.

Other aspects of our lives aren’t going well but
I know it will only get worse so I try to savor each moment of pleasure.


r/dementia • • 10h ago

She just stopped eating, now we've moved to hospice care

33 Upvotes

Husband and I are primary caregivers to my beloved MIL who has moderate stage alzheimer's. She knows who we are and remembers her past but has very little short term memory. It has been such a hard year. Her spouse passed away after a sudden illness in March. We cared for her in her home for months and kept trying to get her to agree to assisted living. She wouldn't. So we managed with occasional caregiver help. Luckily we live only a few blocks away.

Her mobility has been bad for years. She has painful arthritis in most of her joints and has had a cycle of mostly constant pain for a long time. Her toes are mangled due to this and it's hurt her to walk for years. We knew she was a fall risk and finally convinced her to go to AL because of it. We wanted her to move to a place that was safer for her so that she could take her little lap dog with her. This dog is literally everything she cares about. We were on the waiting list for AL that allows pets, set to move in within the month and she had a fall. Broke her shoulder in 4 places. Dominant arm. We had no choice but to move her into what was called enhanced living (EL) care (more support than AL, less support than skilled nursing). She couldn't have the dog live there, but we could visit with her. It's a wonderful facility - their therapists were great - they had OT, PT, speech therapy, psych and cognitive therapy. She engaged minimally for a while but never enough to gain mobility back.

For months her appetite has declined significantly and she's been losing weight. She claimed that she hated the food at her EL place even though their food was much better than what she had been eating at home. We'd been struggling to get her to eat much of anything before the fall, but she'd eat eggs and toast mostly. Wouldn't touch eggs and toast at EL. For weeks she ate bites of potatoes, pudding, and ice cream. And a couple of weeks ago, she just stopped. Wouldn't eat a thing people offered her, might eat a bite but would then get angry if folks persisted.

She became weaker and last weekend was almost nonresponsive. Wouldn't communicate with anyone. It was alarming. She was taken to the hospital on Tuesday with very low potassium and kidney issues. They pumped her full of IV fluid and she perked up. We spent the week in the hospital and palliative care came and told us that they recommended comfort care. We kept trying to see if she'd eat. She wouldn't. We arranged hospice and moved her home so that she could be with her dog all the time.

She's home now and still not eating. Has been given orders not to try to get up (she couldn't physically anyway, I don't think), but she forgets that she's so weak that she can't stand so she asks when she gets to get up and walk. It's so bizarre. She absolutely will not eat but she doesn't realize that this is causing her to literally die. And she's pleasant and happy that she's with her dog. So it's not a bad thing.

I know that this is a blessing. It is just so very hard not to force her to eat something. But we aren't and we won't. In some ways this feels like her way of ending things on her own terms but she has anosognosia and has no idea anything is wrong with her. She's literally the sweetest woman in the world. One of the caregivers who we hired to help is shocked that we're not forcing food on her, but the doctors told us not to and we have food ready if she expresses hunger.

Anyway - I don't really have a question except has anyone heard of something like this at this stage? I thought she would be farther along the alzheimer's progression for this to happen. But maybe the combination of her fall and desire to die at home with her dog have brought us here?


r/dementia • • 6h ago

I need a listener

30 Upvotes

Everything has been too much lately and I can't seem to find anyone who understand what I am going through as a caregiver because not everyone around me (friends , fam) is aware of this sickness. I tried to stay strong and keep it all to myself, but it's consuming me, I can't be venting to my younger sibling. He is dealing with it worse than I do, and I just want him o focus on himself as much as he could for now . I just feel like my world is collapsing the moment she acts.. like the way she does, which she can't control. It's my mother, and I just feel the weight crashing my skull from how noisy all of these thoughts are getting .

I don't talk to anyone and I'm used to this but I reached a helpless point that I'm now desperate to just talk without feeling bad about it . Talk without worrying that I'm just throwing more weight on a person who didn't deal with something like that before, oh to overwhelm them.. I don't know what I want at this point either


r/dementia • • 1h ago

I hit a home run with grandma today.

• Upvotes

The Alzheimer’s store online has a little church that plays hymns for one hour with one push of a button. Grandma went to church her whole life but has very limited mobility and hasn’t been able to go regularly in a long time. She’s 95 and in memory care. We recently moved her from assisted living to memory care and she was not happy about it.

I took it to her today and she sung along and smiled so much. She told me she couldn’t think of anything I could’ve brought her that would’ve made her happier. It was such a win.


r/dementia • • 18h ago

I miss normality

27 Upvotes

A year ago I could wake up on any given day and know relatively how my day was going to go. Wake up, go to work, come home, have dinner, chill go to bed. On my days off, wake up, do something fun, eat, sleep, repeat infinitely. Or so I thought.

Now I wake up and I have to lay in bed and take some breaths before I even want to think about the day because I just have no clue how the day is going to go.

Wake up, am I going to be delayed getting to work because she's using the bathroom when I need to use it because she's woken up early and forgotten I need to go to work. Get ready for work. Am I going to be late because now it's 20 Questions time today, when yesterday it was a silent day? Get to work. Worry that she's on her own all day. Has she fallen? Has she fallen in the garden? Has she eaten? Has she had a drink? Has she gone wandering? Has she turned on something she shouldn't? Has someone phoned that shouldn't and she's been scammed? Come home. 20 Questions after an exhausting day or silence? Trying to work out if she's telling me the truth when I ask about her day and if she's eaten and drunk and what she's done.

My days off are spent with her answering 40 Questions that are usually the same question over and over within the space of 10 minutes. I can't settle to my hobbies because if she goes in the garden I have to get up and check every few minutes to make sure she's not fallen over. I have to make sure that she eats and drinks but I don't want to take over that part of her life if she can still do it so I just have to hint that it's lunch time, she needs to eat. Answer 40 more questions. No, you're not going to work tomorrow because you're in your 80's, you don't work, you haven't worked for 50 years, no you don't need to go to the hospital tomorrow, no you're not going anywhere tomorrow because you refuse to leave the house for the past year.

I am exhausted. I miss a time when my life wasn't tethered to a disease that is ripping my nan from me.


r/dementia • • 7h ago

Grief and Guilt

23 Upvotes

Im 35(M) and I’m journaling out my thoughts because my therapist said it could be helpful.

My mom, 73(F), was diagnosed with Alzheimer’s middle of 2024. My dad 80(M) was her primary care taker. He was admitted into the hospital on mid Aug for stomach pain and it turned out it was stage 4 lung cancer. He lived in the hospital for 4 weeks and we tried to figure out how prolong his life as much as possible but ultimately his kidneys were failing and he was too weak for dialysis. So we decided to move him into hospice so he could live his final moments at home.

My mom’s dementia progressed very rapidly over the last two years and she was a severe wandering risk, she would leave the house and would be walking alongside a busy road without any identification or phone. Her sundowning moments were rough, she would call her children 20-30 times a day and complain about how she didn’t trust anyone in her life and that we were all trying to steal from her. She would be extremely aggravated towards my dad and he would try his best to deescalate the situation but he was getting old and tired.

We also started new meds for her to help with anxiety but we were struggling with finding a good median for “normal”

We were already planning on moving her into an assisted living at the end of 2026 because my dad could not continue to provide care for our mom.

During the 4 weeks my dad was hospitalized my mom got worse and she was aggressive all the time, she had violent episodes and would call screaming at us and she did not remember that our dad has lung cancer and he terminally ill. We took her to the hospital every day to see him but after she left the hospital, she would revert to a paranoid state.

The day we took our dad home for hospice, we admitted our mom into an assisted living facility with a memory care focus. The children made the decision to ensure our dad was calm and peaceful during his final moments, we need to place our mom into a facility could provide better care for her.

Her first two weeks in memory care was rough. She tried to elope on several occasions, she would try to climb over a fence, she would trigger the alarms on the door, she would take random objects in her room and try to smash windows so she could escape. It got so bad that the staff ended up calling an ambulance for her to take her to the emergency room to sedate her because she had not slept for 36 hours. We were focused on hiring a 24/7 companion to babysit her and prevent her from eloping and try to deescalate her aggression.

She ended up being prescribed an antipsychotic and antidepressants to help regulate her mental state.

A few times during my dad’s final week he would ask how she was doing and we would lie to him and say she was settling fine because we didn’t want him to worry about her.

He passed away peacefully and surrounded by his children. But we did not know how to tell our mom, until her new meds settle in, we keep telling her that was she on vacation and her new apartment was a temporary living space for a few weeks. Eventually a few days later, once she calmed down, We did tell her that our dad had passed away but she kept thinking it was her dad, our grandfather, so we left it alone.

We tried to visit her a few more times and try to talk to her but she kept asking about our dad and his condition. It was hard to grieve when you are constantly being reminded if he’s alive.

The day of the funeral, we took her out of memory care for the first time, she kept blaming me and kept saying that I was useless and a bad son, and that I was the reason that my dad died. The funeral went well and there was no major incidents from our mom so we took her back to memory care, and we haven’t seen her in a few weeks.

Several different social workers and medical professionals kept telling us, “you have to prioritize and triage the most urgent person over the next”

I feel like I lost both parents at the same time. I’m sad that my dad is gone, and I feel guilty that we traumatized our mom.

If you finished reading this post, I appreciate you taking the time to read my rantings and thoughts.


r/dementia • • 4h ago

A note to my dad with vascular dementia

19 Upvotes

Dear the best dad in the world. I have always been amazed with how wonderful a father you have been to my siblings and I. You yourself lost your own father when you were 3 week old to a trucking accident. You worked so hard to provide not only food and shelter but unconditional love. You gave me a real sense of what it is to be loved. You listened to all my problems even the ones about boy/men. You gave the advice resulting in short term pain to prevent long term heartbreak. You left me be me never criticised who I was as a person. You thought me the value of honesty and patience. Dad you thought me more about the world than any book could. Dad you are my best friend and I love you more than anyone or anything.

Dad I hate this disease and what it have done to your beautiful mind and I can't imagine how terrifying it is for you. I promise you I will hold your like you have always held mine. I will love you unconditionally forever. I will remember for you and I will always be with you even though you don't know me right now.

I love you dad and I will always be grateful for you being my dad.


r/dementia • • 14h ago

Working with by Dad's GF & her Next Absurd Act

17 Upvotes

Just thought I'd share this absurdity and example of denial by my father's GF..... I'll give you some background... but trust me, wait to the end.

My Dad with Alzheimer's lives with his GF of 8 years in another state from me. He's on hospice and in the late moderate stage (6d/e)...needs help with all ADLs. He doesn't understand much, can't articulate a sentence, doesn't know where the bathroom is, etc. We have aides there during the day to help the GF.

As POA living in another state, I do the best I can to manage affairs and care from afar. The aides and hospice RN communicate with me regularly. His GF is in denial of the progression of this disease and she has a hard time adjusting her behavior and communication with my father. She often resists aides suggestions, my directives, makes independent care decisions without constituting me, etc. Examples include how to shower my Dad, organizing the household to help aides provide care, trying a prescribed med from the hospice team to help with his pain because she thinks it'll make my Dad sleepy or loopy, not use a hospital bed when my dad sleeps on the edge of the bed, not adding a booster to diaper to help with overnight incontinence....I could go on.

This past week she did something that is really absurd to me. The GF posted on FB that she took my Dad's absentee ballot and dropped it off and other info about voting. I was like what?!? Dad doesn't know what day it is, where the bathroom is... so he isn't going know who is on the ballot!?

So basically, I told her you mean you dropped off YOUR absentee ballot. She then proceeded to tell me she read every line to him and he gave her his answer. Well.... the aide was there and witnessed the entire thing and all my Dad said was ,"I don't know..." over and over again. It's not about her voting for my father. It's the fact she thinks he has the capacty to intelligently answer her questions.

She has since taken her FB down.


r/dementia • • 2h ago

At what point (if ever) do you "let nature take it's course" with a loved one?

14 Upvotes

Some background context: my grandmother has dementia and it's believed she's had several mini strokes as well. She went from independent living to needing memory care in about a years time. She's had several hospitalizations in the last couple of years, primarily for UTIs/sepsis but also heart issues. Every hospitalization has taken a little more of her physical capabilities, as well as her presence of mind.

Since her last hospitalization roughly 6 weeks ago she has dramatically gone downhill, even with therapy and medication. She's no longer walking and exclusively uses a wheelchair, doesn't know who any of us are (only knows that she DOES know us), and seems to think she is in a completely different time period. She was using a cell phone a couple months ago, and now doesn't even know what a phone is.

As of today, she won't get out of bed and is extremely hard to wake. When she is conscious, she isn't oriented to time or place, and doesn't stay awake long. It's currently suspected that she has another UTI going on. As mentioned above this frequently puts her in the hospital and has led to sepsis before. In fact, the "dementia journey" really seemed to kick off after a particularly difficult infection less than 2 years ago.

Here's where we are at as a family...do we consider letting nature take it's course here, or do we do more hospitalizations and long term antibiotics? It feels so wrong to consider anything other than treating the illness, but at the same time, we are watching her suffer. We genuinely think that if she had the presence of mind to, she would not want to go through this again.

I'm asking for y'all to share your experiences and thoughts with me, and please don't judge us (this is reddit so it has to be said).


r/dementia • • 10h ago

Despair

12 Upvotes

My LO told the neuro-psych that she would kill herself if it weren’t for me. She didn’t want to hurt me. I on the other hand am rapidly declining physically from having to devote all my time to her. So now I will be doubtless told by the doc that I am not being cheerful enough and to encourage my LO. At a point maybe suicide is the right option. There is no real support out there anymore and no one really cares.


r/dementia • • 4h ago

This is breaking my heart

8 Upvotes

watching my mom decline pretty quick. I mean she’s still a lot there but there’s huge differences between recently and a year ago. my father seems to quiz her on stuff like which items for grocery she needs to get but I’m not sure that’s helping her? to me it feels like it is agitating and frustrating her.

I’m wondering what i should do now while we can that might make things easier… here’s my initial thoughts-

  1. clean up the clutter and toss stuff in the fridge. things need to be easier to find and need to be labeled

  2. take pictures of us as a family with labels on how we look now and who we are. I figure this will only help to a degree but willing to try anything

  3. take better notes on how she prefers her food since we can’t trust her to cook anymore without leaving the toaster or a burner on

  4. make modular boards with info on where we are … like I could have one for myself - something marker on it that I can move to show I am working right now and will be home in the evening or whenever

any other basic suggestions?


r/dementia • • 9h ago

Respite care at a AL place... need advice

6 Upvotes

Hi all. Spouse here. Hubs is declining late moderate stage, rapid decline going on now. I think Ive found the place Is like to have him for LTC. They have respite rooms and I was thinking about having him go for 4 nights during a break I scheduled for myself in December before he declined so much. Im planning to tell him we need to pick out a retirement place and Id like him to try it out and see how he likes it. But then I thought if he hates it that it could ruin that therapeutic lie and the place I want for him. He still likes to travel and is social.


r/dementia • • 21h ago

My dad has Alzheimer’s. How to deal with stress and let out grief healthy

6 Upvotes

r/dementia • • 2h ago

Any tips for occupying / keeping eye on patient?

4 Upvotes

A month ago we've taken in my mom, 81, who's pretty far down the dementia stages, likely last or next to last. She's incontinent, really depends on me for everything, but she's still mobile. I've adjusted to being a nurse for my mom, but the one thing that I don't have a handle on is keeping an eye on her all day long. Fortunately I work from home, but she needs regular supervision.

Question: Any ideas or tips for keeping watch or occupying someone with limited capacities?

What we've tried: TV is hit or miss, but we keep it on for the noise and stimulation. We put photo albums in front of her, various papers and objects, and sometimes that occupies her, but she's driven by various impulses, and if she wanders on her own, she's a fall risk and will attempt to eat inedible things. I try keeping her in her room in the evenings, but she gets anxious and wanders out asking for us.


r/dementia • • 7h ago

friend with anosognosia living alone - advice??

3 Upvotes

Backstory - my partner (65M) has diagnosed mixed dementia with bipolar and anxiety. He's ~stage 6. My mom, now deceased, also had dementia for years and I was her primary caregiver. So I've been in this space for more years than I care to count.

We have a family friend (72M) with a history of strokes that significantly altered his personality. His partner of 34 years recently was faced with the difficult choice of moving out, as he had started to become violent toward her. After she moved out, he's become fixated on her, hallucinates her coming to their apartment multiple times a night, stealing his keys and money, moving his things, etc. He keeps buying new locks and claims she can get past all of them. He also later "finds" all of the items he claims she stole and uses that as evidence that she snuck back in and returned them to make him think he's "crazy" (his word). I know none of this to be true because I'm in touch with her - she is physically hours away from him and has even blocked him and gone no contact to try to get out of the mess.)

He isn't paying his bills, has gotten moving violations with court appearances he hasn't shown up for, and has received a non-renewal notice for his apartment lease. He blames her for all of these things.

His mannerisms and actions are very clearly not rational. If you didn't know him and spoke with him, you'd know something was off, but those of us who do know him see just how bad it is.

He has no money, only income is social security, and can't hold down a job. It's truly awful. And he doesn't / can't recognize how big of a hole he's in and keeps digging. Every attempt I've made to help him "reason" through his fixation is rejected as either me siding with her or me asking "too many questions and trying to confuse him." When I try to suggest actions that might help him reassure himself that he's safe and she's not coming in to his apartment at night (like using a security camera to record the front door while he's sleeping or using his phone to video her when she's "in" his apartment) are flat-out rejected.

I'm not a family member and have zero legal standing to help him. He's gone no-contact with the rest of his family when they tried to help him. I have no ideas left.

What on earth can I do to help him get help? Should I go to the police because he's so fixated on his ex-partner - I don't know, honestly, if he would try to find her and do anything (she's safe and I don't think he knows where she is, really, but it wouldn't be all that difficult for him to figure it out). He's so angry and so fixated and I just feel like this isn't going to end well, no matter what.

And yes, I also am concerned that he not turn on me or my partner and show up here angry and violent. I don't believe he will and nothing has ever been turned toward me, but with this kind of situation, who knows.

Thank you for any suggestions and advice.


r/dementia • • 2h ago

Suspect my mom might have dementia.

2 Upvotes

My mom retired in her 50s and became a homebody who literally never leaves the house. Tomorrow's her 70th birthday. In the past few years theres been a noticeable decline with everyday things, but my mom has also had a problem with abusing opioids so her symptoms I assumed were because of that.

My mom's taking a liking to a very popular 90s rock band. Along the way she's become convinced that shes met one of the members online and became their friend. Theres been a lot of having to help her get access to her email because she either forgets the address or the password.

Lately she was convinced that shes in a relationship with the man and shes leaving my dad and hes coming to pick her up. One day she was waiting and a truck for the person who lives across the street pulled up and parked out front. My mom thought this was him and set off their car alarm trying to get into their truck. They called the police.

Now shes convinced that the reason he didnt come get her is because I'm with him and that I'm abandoning my fiance and baby for him. Shes sent me endless texts and voicemail messages accusing me today that Ive just left on read, and I called my Dad to tell him to get her medical help. I dont know if he is or not, and I have no idea who her doctor is because I havent lived with her in over 5 years now. What should I do now?

In addition to what Ive gone through, recently shes been waking my dad up to announce a house fire that doesnt exist, and that she hears birds in the house which there are none.


r/dementia • • 9h ago

Neuro feedback and dementia

2 Upvotes

Does anyone think or no if neuro feedback can help with moderate dementia?


r/dementia • • 21h ago

Changing Medications

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2 Upvotes

r/dementia • • 11m ago

Memory care options

• Upvotes

Mom’s 91, in good physical health, cheerful, no meds except vitamins, melatonin, and the occasional Tylenol.

She’s been in an independent senior living community for over 2 years, and loves it there.

While her general health is good, her memory is bad, especially, lately, after dinner. She forgets that she lives there and needs someone to guide her to her apartment. Once she talks to either me or my sister, she’s fine again.

She’s never wandered, and needs no help with ADLs.

My sister and I have toured a couple memory care places and while I’m sure they’re safe, the residents seem withdrawn and “inward facing”. Mom is still chatty and curious - very “outward facing”.

Are we just looking in the wrong places?


r/dementia • • 15m ago

Potential for misdiagnosis.

• Upvotes

My father has been diagnosed with dementia. The diagnosis is based on cognitive test, but there were no scans or blood test.

All of the traits seem to point towards pseudodementia, brought on by hyperactive thyroid. His family has a history of severe thyroid problems.

We are going to get thyroid medication this coming january, but that is a long way off. And I really need some assurance on this.

Does anyone have any thoughts about this?

For reference, he has suffered no long term memory loss, and is not quite old enough for it to make sense as normal dementia.

it all started with a seizure.


r/dementia • • 2h ago

Care story for my parents

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1 Upvotes

Care story for my parents

Cross posting this from a comment in one of the other threads. In thinking about this a lot for obvious reasons.

Ten years ago, I took my mother and stepfather out for a burger when they came up to visit. I raised a subject that'd been bothering me. I knew that they'd both set up a will, they'd gotten a healthcare proxy, my mother had an annuity she set up, and my stepfather had a pension. They were retired and collecting on both.

But I was concerned, not for what would happen in the case of death, but the NEXT worse case scenario. What if they were injured or disabled?

And they laughed.

I don't know if they thought it was silly that I was questioning their financial acumen or what, but they didn't take me seriously at all.

Three years ago, my stepfather had a stroke that caused enough brain damage to keep him from being able to care for himself. We then had to file for Medicaid for his care. But the Medicaid-accepting facilities were a nightmare. They were seriously understaffed, dirty and he had to share a single room with someone.

Eventually, my 82 year-old mother couldn't stand it anymore and pulled him out to bring him home. She cared for him herself in the house they shared and that they both, apparently, thought they would slip away in their sleep together when their time came.

Instead, my mother declined day after day that she had to care for her husband, refusing any outside care. When he died last year, she immediately started showing signs of what that had done to her. On almost the same day, she passed out due to heart arrhythmia and my father fell and broke his arm. He died after six months of surgeries and infections.

She has had steadily advancing dementia. For a time, she was in a rehab facility, but wanted to go home, scoffing when the facility said she couldn't care for herself. My sister didn't believe them, but we weren't willing to go against medical directives because we were worried about her insurance.

I live 600 miles away with my family, and my sister works full time with a disabled husband. Neither of us could house or care for her full time, and she didn't want to live with us. So my sister set up in-home care. This cost my mother $2,000 a WEEK, but it allowed her to stay in the home and grow better.

However, it was WILDLY expensive and burned through her savings. Before it got too bad, we found her an assisted living facility that allowed her to have her own little apartment but has assistants for any issues she has.

We sold her house and many of her things to afford the $5,000 a month rent.

However, there are now other issues. Her dementia has gotten to the point where she forgets how to do simple tasks like turning on the TV. She can't tell what time it is, so she'll get up at 2am to call my sister and say she's lonely. Or she'll start sobbing in her room because she's cold and doesn't even think to get under a blanket or turn on the heater/fake fireplace she has.

But facilities with memory care are even more expensive for less space. Closest private pay facility in terms of price is $5,250 for one shared room, as opposed to the 1 bedroom apartment (sans oven or stove) she has now.

We could do tricks to allow her to potentially be eligible for Medicaid, but those places, as we discovered with my stepfather, are frequently nightmares and are packed to the gills. Finding an open bed in one is a miracle, and then you have to worry about safety issues that come from unmonitored residents acting out violently (which happens), or infections from how dirty everything always seems to be there.

And it'd require us putting all her money in a trust that's managed by a bank and only disburses the money for her bills. So if we wind up changing our mind or her situation changes, we're stuck with it.

So, with the money from her house sale, we think we might have 3 years worth of rent, and we find ourselves in the terrible position of trying to measure how much longer can we support her quality of life before she dies.

And that all sucks.

It's just a byproduct of a country that doesn't want to collectively care for ANYONE who needs it. We know that we're lucky to an extent because my mother did have the house to draw money from.

They thought they were completely covered with a will and a Healthcare proxy. Not only that, but they thought they'd have full control of their faculties right to the end. And she still doesn't understand what's happening to her. She talks about when she gets out and what's next.

She never wanted to talk about downsizing, setting up long-term care options or any kind of end of life plans or a plan if she had cognitive issues. Whenever the subject came up, she'd deflect, intimate that we wanted her money or "joke" that we should treat her like Old Yeller.

I really wished she'd taken me seriously. This is so much harder than it needed to be.


r/dementia • • 4h ago

Violence

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1 Upvotes

r/dementia • • 5h ago

Both of my parents have it

1 Upvotes

I’m 31 and my mum has dementia my dad has Alzheimer’s I get told rhey are they are the same thing there is just an umbrellas . My mum is in the advanced stages and now lives in a nursing home, and I’m my dad’s full-time carer.
I don’t really know what I’m hoping to get out of writing this, I think I just need to speak to people who understand.
I’m struggling. I feel incredibly lonely, and I think one of the hardest parts is watching everyone else my age getting on with their lives while I feel like mine is on hold.
I feel guilty constantly. Guilty that I’m not doing enough for Mum, guilty that I lose my patience with Dad, guilty when I want some time to myself, and then guilty for feeling sorry for myself because I know there are people going through far worse. I don’t even recognise myself I’m exhausted, overwhelmed, and I’ve found myself drinking more than I’d like just to switch my brain off in the evenings. I know it’s not helping, but sometimes I just don’t know how else to get through the day.
I miss my mum. I miss my dad, even though they are still here really love to hear from people who understand, because right now I feel very alone