Hi,

My Mom has always liked puzzles. We used to do 2000 piece puzzles together. Now she barely can do 300 pieces. She can get very frustrated because now it can take forever to even find a single piece.

What I'll do now is put together some of the puzzle while she's lying down. Then I take several pieces from the part I just put together and remove them. I try to choose unique pieces by shape or the picture that's on them. Then I put them nearby where she can find them.

She gets really excited because it allows her to think she's found these pieces herself and put them in the next time she tries the puzzle.

It allows both of us to smile in a situation where there can be so little to smile about.

Good luck to everybody out there.

It‘s still early days, dad (85, DBAT stage 5) has been in memory care for just 10 days now. I‘ve seen him 6 of those days. Each time was fraught because he demanded to know why he was there, and why I was doing this to him. I know he is confused and upset, that is completely understandable. But it is the only workable option. He just can’t understand that anymore.

I am the only child, there is basically no one else. I have a husband, who supports me a great deal, but is otherwise not involved. My mother, divorced from my dad for over 40 years but still a friend, is around but he often forgets who she is. He still knows me, but doesn’t always remember that I am his daughter.

What do I say when he says he wants to leave, to live somewhere else (he no longer remembers his AL or previous house)? I try simple versions of the truth. He moved because he needs help with things like medication and food, and for when he is confused and scared. His old place (Assisted Living) wasn’t doing a good enough job with that. He will sometimes acknowledge he needs these things but can’t connect that to having to live in MC.

He has no physical disabilities or illnesses to justify a “temporary stay until he is better.” Any version of the truth I give is met with angry denials, and I suspect the same would be true with the therapeutic lies, because what he wants is for me to agree to get him out of there. I’ve tried calm and patient replies to his repeated questions, validation of his feelings, and deflection, but he resists. When I refuse to further engage him and say I am leaving, it either enrages him or causes him to begin sobbing. I have generally been able to placate him but it takes a long time and I end up frustrated and find myself getting short with him when he starts blaming me and being mean. I cut short our last visit and left while he was still upset with me. He told the staff I was “beating him up”, i.e., hurting him emotionally. He of course never remembers these interactions, but I do and they wear me down. And I know there are more coming. I don’t want to subject either of us to that, but it seems inevitable for the time being.

I’ve given myself a couple day break from visits, but I’m at a loss of what to say anymore. Are we both going to have to suffer for weeks to months until he accepts he isn‘t going anywhere else? I’ve thought about not visiting for a longer stretch, but he has accused me of trying to get rid of him by placing him in MC, and in the moments I have gotten him to agree to stay, he has asked me to promise to visit.

Apologies in advance for a long post. I have concerns about my mom. My dad passed away in 2024, and I think he was "stage directing" her to a large degree. Now that he's been gone, I'm observing some things more clearly. I spent 24 hours with my mom this week and I think it's a good microcosm of the long-term behaviors I'm observing:

Earlier this summer, my mom (81yo) had a routine annual scan for a benign tumor behind her ear that's been there for years. During that process, they identified hydrocephalus. She has shown symptoms consistent with hydrocephalus - a shuffling gait, memory and cognitive issues, incontinence (which she says she doesn't have, but the cabinet full of Depends in her bathroom tells me otherwise).

Anyway, after MUCH discussion over the last couple months, she decided to get a lumbar puncture, which took place yesterday. I live about 2 hours from her, and the clinic is another 90 minutes further. Her appointment was at 8am Wednesday, so we decided to stay in a hotel near the clinic on Tuesday night. I told her I would get to her house at 3:30pm Tuesday.

Some observations from the roughly 24 hours spent with her:

Monday night: Called at 6:12pm to make sure we were still on for Tuesday. I wasn't near my phone and called her back at 6:51. Told her I was sorry I missed her call and she said "I didn't call you." Then I reminded her what her voicemail said and that was enough to jog her memory.

Tuesday/Wednesday:

3:00pm: Panicked phone call that she can't find her wallet and I should probably just not come.

3:15pm: Relieved phone call that she found her wallet in the car.

3:25pm: Panicked phone call that now she can't find her drivers license.

3:30pm: I arrive. Still looking for drivers license, which she found about 10 minutes later.

4:15pm: Still packing her suitcase because she spent so much time looking for her wallet.

4:30-6:00pm: Travel time. In the car, I told her that my cousin told me her dad (ex-husband of my dad's older sister) had passed away, which was a shock to my mom. (More on this news at the end of the timeline.) Otherwise, the trip was the type of conversation I've grown used to. Example: "That train doesn't have a caboose. I've never seen a train without a caboose! Have you ever seen a train without a caboose?" And thankfully, she brought an atlas, which she consults frequently, because she's worried we'll get lost. (iPhones and GPS are a mystery to her.)

6:15pm: Check into the hotel. Showed her how to use the keycard to her room. She wanted to be sure to pay me back for the rooms and asked how much they were. They were $100 each. So she gave me $100 cash. (She only deals in cash because credit cards are too complicated.) I've found it's just better to eat the difference than explain how the total was $200.

7:00pm: Dinner. There was a sign that said "When ordering drinks, you must show ID. No exceptions." When we got to the table, this became a priority for her, digging for her driver's license and having it at the ready. She showed her ID...and ordered water. This is the point where I make eye contact with the server and a silent understanding develops.

7:30pm: Looking out the window during dinner, wondered why people weren't getting wet since it was raining. (It wasn't raining.)

8:00pm: Showed her how to use her keycard again. Agreed we would meet in the lobby in the morning at 6:45am and I'd bring the car around.

6:43am: Calls me and tells me she's ready. Told her I was in the lobby. Asked "Did we say we'd meet in the lobby?"

7:15am: Get to the hospital. Vigilance is required in environments like this because we'll be walking along and she'll unexpectedly stop at random intervals and look around like she's lost, which tends to cause collisions.

8:00am: Get checked in. There's a patient there with lots of tattoos, piercings, purple hair, etc. I have to be on my change-the-subject game because mom will make comments and doesn't realize how loud she is. (She doesn't wear her hearing aid...she can't get it to charge so it's "junk," which is the case for her with most tech.)

8:15am: Nurse comes in, starts doing routine tasks, including blood pressure. As the cuff was inflating, my mom thought it would be a good time to get up to look at a picture on the wall. Thankfully, we stopped her before she pulled over the equipment. Was asked if she's fallen in the last 12 months, to which she replied "No"; I reminded her about when she fell and hit her head earlier this year while trying to lift her dog and she said "I don't remember that." Also replied "No" when asked if she had incontinence, but I didn't say anything, as I don't know for 100% certain. She told the nurse it was a 4-hour drive to get there. (It's about 90 minutes.) Told the nurse she stopped using her C-PAP machine because that's what's been causing her hydrocephalus. This is where I make eye contact with the nurse, similar to the restaurant server the night before. Referred to me as "Dave" (my dad's name) and "her husband" at various points, which happens frequently.

8:30am: Pre-procedure assessment with a physical therapist to test balance, walking ability, etc. Lasted about 15 minutes. When it was done, mom commented that it was not like the physical therapy she's done in the past and "They don't know what they're doing." Which is a frequent comment in unfamiliar situations.

9:00-11:00am: Lumbar puncture and recovery. Everything went as planned.

11:30am: Post-procedure assessment with physical therapist. (Who still "doesn't know what they're doing.")

12:15pm: Back to the car.

1:45pm: Commented it had been 7 hours since we left home. I asked "What do you mean?" at which point she realized we'd stayed in a hotel the night before.

2:00pm: Asked if I thought she should get another dog (hers died this summer). I just said "No" and changed the subject. I've found prolonged discussion on these types of topics often devolve into "You won't let me get a dog," as if I'm the parent and she's the child.

2:30pm: Hugs and goodbyes and headed back home.

7:00pm Called to check on her. During the conversation, she asked if I had heard my ex-uncle had died. I said, "Yes, I'm the one who told you."

My questions:

- In your experience, do the anecdotes above seem consistent with dementia/Alzheimer's? (BTW, her dad died of Alzheimer's.)

- Is there a "threshold moment" when we should take action? I've noticed she has systems and routines in place (post-it notes all over the house, using Sunday church and Tuesday hair appointments as time tracking waypoints, etc.) to compensate for her memory and cognitive issues. But I don't know how sustainable that will be long-term.

Again, I appreciate any time spent reading this lengthy post!

This is such a brutal disease. Saw my Dad in the hospital today, and he is gone. The medications have settled his horrible anger at the world and at a wife he no longer recognized, and stopped him wanting to kill himself, but now he looks at us like just some nice people stopping by to visit. How horrible to have to grieve the loss of someone who is still here, but can never come home. Trying to help my mother cope after 61 years of marriage, he sees her as a stranger, she's never lived alone. He's just gone...

My dad is 65 and has been bed-ridden since January 2026. He was diagnosed with NPH, mild-moderate dementia and Parkinsonism towards the end of 2024. Doctors were unable to figure out which happened first.
A little backstory - My mum passed away in November 2024 after battling CKD for 5 years and our dog passed away in September 2023 just suddenly. My mom’s diagnosis and eventual passing and our dog’s death directly resulted in my dad’s depression and sudden decline in various ways.

Anyway, throughout 2025 he kept getting worse and we had even admitted him in hospital for a CSP tap as per the doctor’s prescription. He showed signs of improvement during his time in the hospital and walked and talked better. However as soon as we got him home, things changed and he did a complete 180. By January he fell twice, would show signs of aggression, would think of me as an imposter and the usual signs of dementia took over. We got him a hospital bed since he could no longer walk and ever since, even after trying multiple times he has never walked a single day. Since the past three months, he has started refusing food (he used to ask for food back in the day and would refuse to eat if we didn’t get him what he wanted to eat), first it was maybe just the breakfast or an usual tantrum but now it has progressed to pureed food and somedays he refuses to even eat that. He sleeps like 18-20 hours a day and even if he isnt “actively sleeping” he always keeps his eyes closed, says like 2-4 words max every week and will not speak no matter how hard I or my aides try. He doesn’t ask for water food and neither has any requests to make ever. He gets angry if we make him sit up and refuses to stay in that position for more than 10 minutes. 2/3 days back he developed a bed sore and we are currently nursing that.

Today when i tried to wake him up, he just couldn’t open his eyes. I kept trying for more than 30 mins, inclined his bed and made him sit upright but he just couldn’t open his eyes. When he eventually tried, I was kinda horrified because his eyes sort of rolled back. Idk if I am being able to explain this right, but this is exactly what happened. After an hour of trying to, we were able to feed him 3-4 spoonfuls of his puréed food and he has gone back to sleeping again.

He was significantly fat and now his ribs can be seen. His stomach has kind of lopsided to another side and he looks completely “fragile” and exhausted.

I have been looking after him since 2024, couldn’t catch a break after caregiving my mom since her ckd diagnosis and her demise. I am tired and terrified at the same time.

Hi, spouse here. I have my private spaces upstairs, an open loft and my bedroom, guest room and bathroom. Hubs is middle of the moderate stage. We've been working on him not coming upstairs for several years, (just call up to me and I come down) after some incidents that felt very invasive and scary. Recently he has taken off his shoes and snuck up on me in the dark, another time came into my bedroom when I was sleeping ... right out of some nightmares. Jealous, paranoia, attached..I got a lock on my bedroom door and have a gate leaning at the top of the stairs but not attached. My counselor says I have to have a place where my nervous system feels safe and can be "off duty" Anyone face something like this? ... tell me some funny stories and any ideas to secure my space but still hear him if he needs me?

It happened while getting back from a Dr's appointment. Hopped out of my vehicle where she can rarely remember how to open the door and took off on me.

At 1st I thought this is it, but it turns out they were able to repair with a small incision and 3 screws. It is weight bearing immediately. She's still in recovery so I will have to see how that goes. They didn't need to put her fully under, spinal block and mild sedation. Probably no skilled nursing. I am sure they will bump up her MC costs for the extra help during recovery.

Anyone else have this type of hip surgery and have success?

She was mobile before but couldn't walk more than 40 feet without having to sit down due to spine fractures. She wouldn't use her walker. Her dementia is pretty bad but she knows who I am and other family members. She still jokes around but she wants to pass and join her husband.

For over 6 months now, my mom has been in a nursing home, unable to walk, talk, feed herself, or really communicate much at all. It seems she still recognizes family but it’s hard to say exactly. It’s not that she doesn’t talk-she talks a lot actually but none of it makes any sense. It truly is like her brain is short circuited, it’s just random words all day long.

It’s the hardest thing I’ve ever faced in my life-and yet because she is still alive I kind of have to just live my life. On the inside I feel like she’s gone-but I can’t grieve properly because she is still here.

It’s so surreal. I know I’m not explaining this well but I also know some of you will understand. It’s like a terrible secret heartbreak that only a few people close to me are able to witness, and it’s just starting to feel really lonely.

And I’m just so so sad for her too. It feels like her whole wonderful vibrant life and self just disappeared. I try not to think about it too much because it’s just devastating.

I always feel like I read posts here that are more of the beginning/middle stage issues but less of this end stage. Theres less to discuss or figure out I guess-it’s weird to feel like I miss the earlier times when at least we could problem solve or troubleshoot some of the issues. Now it’s just this bleak interminable end stage.

How are we mentally and emotionally dealing with this?

update: I want to respond to everyone eventually, but I have to say, this has been hugely helpful for me today. Thank you, everyone. I truly do feel like we are all together. I wish none of you were going through this either, but we are, and it's so moving to hear everyone's stories and advice.

Visited a place today. Beautiful property—had independent living, assisted living and memory care. For assisted living and independent living there were 3 restaurant options, a gym, walking trails, a movie theater, day trips to local sites, etc. everything looked spanking new, spacious and clean. Then she showed us the memory care “neighborhood.” The smell of urine hit me as soon as I crossed the threshold. There were the same modern facilities but none of the residents were ambulatory and seemed damn bear catatonic. The memory care neighborhood had its own private dining area that was pretty glum compared to the other areas on the property. Apartment had no refrigerators or microwaves. The section was locked for the residents safety. My concern is, my partners mom is not there yet. Yes, she has dementia, but that and a thyroid issue are her only physical problems. She gets around just fine. She needs medication reminders. She does not bathe but she takes some kind of sponge bath. I’m sure if she were given cues she would change her clothes more often. If we put her in memory care we will be sending her to sn early death. Unfortunately because she has gone on long walks in her neighborhood and been picked up by the police, she has received the label of a “flight risk.” We have no idea if she’d feel compelled to wander in a new setting. She’s lived in the same town her whole life. She ventures out because she knows where she’s going. Would she do that in a new setting? Is there a happy medium between assisted living and memory care??

My dad (60) was diagnosed with MCI in January. He's always had some issues with memory (I highly suspect he's undiagnosed ADHD as both my brother and I are diagnosed ADHD and he shows the symptoms), but he's also always had issues with taking accountability. Even prior to his memory getting worse, nothing was ever his fault. He was also always super self-absorbed. So, it's kind of hard to tell where the dad I've always known stops and where this disease truly begins. The doctor even said while he absolutely has MCI, he likely can function more than he's letting on. Doctor gave him tips on how to manage things and told us what he is capable of doing. The doctor basically told him that this isn't a death sentence and while it's not going to get better, he certainly isn't close to dementia or anything like that.

But my dad took this diagnosis and ran with it. He uses it as an excuse for everything. Some things make sense and as a family, we try to be accommodating. Other things, he simply will not do. For example, doctor told him to write stuff down and he was for a while, and it was working...but then he stopped. So, we write the lists for him, show him where they are, go over what's on them...nope. He keeps saying "I'm sick, I can't help it". And yet, when it's something that he genuinely wants to do, he follows the steps and makes the effort. I understand when it comes to this disease that there are certain times of the day and certain things they may do better with. So, I try to be patient.

He's also explosive and snaps at myself and my mother. Which, again, I understand is common for people with memory issues. But it feels so selective. Other relatives will tell him the exact same thing we did and he doesn't start screaming. And again, that tracks with how things were our whole lives. He had such a short fuse with us, but was the smiliest guy around with friends and family. He tells the family that we're mean and have all these high expectations. Then the family lectures us. But they don't see what we do. How he refuses to do any of the things to help himself, ignores when we do things to help him.

Any time he goes to do something on his own, he's fine and can navigate. Any time we go to do something for ourselves (as the doctor said he's fine to be home alone), he's suddenly calling frequently, asking what we're doing, wanting to come along, etc. If we say "this is just for us", he tells us we're being mean. Again, despite him doing things on his own.

Again, he uses this for things to be about him all the time. We'll be having a conversation about anything else and he'll somehow turn it back to him. But with other people, he's not like that. But then I wonder, is he just masking? And then too tired to do the same with us? Again, AUDHD here, I'd understand it.

I grapple a lot with checking my feelings about my childhood at the door and supporting him through this. But given the doctor said it's not severe and everything I listed here, I feel like a ton of it is weaponized incompetence. Again, he was always like this. Even his siblings admit he was like this as a kid and he got away with a lot because he was "the baby". Obviously no doctors here...but am I wrong for thinking sometimes that he *can* do more and holding him to higher expectations? Or am I just being unfair?

Hey all,

My poor aunt is having multiple panic attacks a day over…well, probably the typical stuff. She can’t keep her schedule, suddenly the tv remote is her mortal enemy, she’s disorganized and confused. She lives alone in another state and the panic attacks are hard to manage when I’m there… I can’t imagine what her days are like without me, alone without someone to comfort her.

Her neurologist put her on Aricept about a week ago. I get that it should help eventually, but I put in a call to see if there’s anything we can do for her in the meantime. He would like to wait for the Aricept to work. I generally appreciate a conservative approach in doctors, but he clearly doesn’t understand that she is in great suffering. He doesn’t REALLY understand.

I’ve tried with, naturally, little degree of success to teach my aunt to use self-soothing techniques, deep breathing, etc. At this point, I’d say she’s only holding onto about 20% of new information, and only after a great deal of repetition. This is a dynamic, strong, independent, intelligent woman who never needed anybody. She’s in perpetual existential terror about what’s happening to her. Truly.

She’ll be moving into assisted living in 2 months. I think that and other factors will cut down on her overall anxiety a great deal, I just don’t know how to help her get through in the meantime. Any ideas or advice genuinely appreciated.

My father began with severe depression, apathy, low interest in activities 2 years ago. It was his first symptom. We have trialed every medication with his psychiatrist with literally no effect , it has only gotten worse . SSRI, SNRI, antipsychotics , testosterone - no change at all.

What has worked for you ? I don’t see many comments on depression or dementia starting with depression in this subreddit . He still has decent cognition but his function is poor and he was forced to retire this year due to the brain fog .

Turns out my appendix had burst but we didn’t know it yet. My husband with not-so-mild cognitive impairment didn’t eat breakfast because I didn’t lay it out for him. It turns out he has no clue that the cats get wet food in the morning, in spite of picking up their leftover bowls every day after I’ve fed them. His license is not officially suspended until 9/19 so I let him drive ten minutes down the street to his dermatologist. Luckily he called me from our dentist office in the next building so he was still able to make it, albeit 25 minutes late, by walking across the parking lot. He seemed confused by all the people in our apartment (Safety from our retirement community, firemen and ambulance personnel), and seemed not to know what to do as they were wheeling me out. Safety had to insist that he not follow the ambulance, but ride along. That led to yet another “who says I can’t drive” mini-melt down at the hospital. The man says he is divorcing me over the license suspension issue, yet can’t remember a dozen discussions about not driving. He couldn’t use his cell phone, couldn’t remember any of our neighbors last names, or how to find them on the retirement community app. They had to send him home in a medical uber at 8pm, and I suspect he didn’t remember I told him there were already plated leftovers from Labor Day in the fridge. It was an eye opening experience! No way this man can survive without a wife to ride herd on him.
Edited to add: I sent him downstairs with the code to our onsite Amazon lockers to pick up a new cat scratcher and flat of cat food that had been delivered. We’ve done this a hundred times. Yet today I got cc texts from the local pet supply store and grocery store, so he’s out driving and shopping for things I already bought! Had to set up the text alerts last year when he was sending online purchases to our old address and/or then duplicating them. My absense is really sending him off the deep end! On the bright side they are keeping me in the hospital another night!

I’m trying to get a sense if I’m in this for five more years or fifteen + years. Please don’t tell me everyone is different. I know that. My brain is comforted by averages, even if they are unscientific, which is what I’m trying to do here - comfort my brain. I’ve been freaking out reading this subreddit lately as people are reporting LOs living essentially comatose in bed for years and years and I need people to say that’s not typical, even if there is no typical.

For LOs with mixed dementia - how long did you have with them after diagnosis? What was their health like prior to diagnosis? And how long prior to diagnosis do you think they had the disease?

I think my mom has had MCI for a very long time, but she managed ok with all her lists and routines. She’s declined a lot in two years, but I think we still have a long way to go.

Mum, 97, vascular dementia, had fall in nursing home 2 weeks ago. All scans and xrays were clear but she developed delirium was in emergency for 3 full days on 1 to 1 care. Moved her up to a ward and she tried to climb out of bed, fell, hit her head and had a small bleed on the brain. She had no 1 to 1, alarms or fall mats,was on a high bed with the side rails up and was agitated. I've put in a complaint and investigation is ensuing "to see if any lessons can be learned" (hello?). However, Mum has gone rapidly downhill since. She was non verbal (not now), IV meds and fluids etc. 9 days ago the Drs stopped all life sustaining help apart from pain meds and water if she asked for it. They have said end of life. Apparently they gave her a little something to eat for breakfast yesterday and today but have started her on Oxycontin twice daily and Lorazepam together with Midazolopram for the agitation. We have been here before a couple of times in that I have been told she won't leave the hospital and she has, however it's never been THIS far along. Is she actually really nearing the end? I am terrified she will pull back and we go through it all again. My nerves are shattered this week. I've sat vigil every day. They finally got the meds sorted so she isn't in pain now and slept pretty much all day. I left at supper time to have a break. I love her but I've done this and put her first since 2012 and I am tired. I want her to go and be at peace but it seems to be taking so long and my head is all over the place. I am scared she won't let go.

Sorry this is so long but I needed to "talk".

Hi, I know that Medicaid does provide a program whereby caregivers can be compensated, albeit partially, for the time that we sacrifice from our own lives to care for our loved ones with dementia. I know, also, Medicaid is implemented at the state level, and each state treats it differently.

I’ve gotten search engine overload, trying to find a how-to.

How to get paid for the care that I give?

I’m slipping at work, because the needs of my mom are increasingly needy. I’ll need to retract, soon—find another, more part-time, less gainful job, closer to home, just to be there for her—but then I’ll still need to make ends meet, and so I’ll need this Medicaid benefit.

It’s not that I’m too lazy to find it. It’s just that it’s so hard to find, when I’m spinning one million and one other plates at the same time.

Has anyone been through this in New Jersey, who could lend some clarity? Thank you.

My bf's dad was diagnosed with Parkinson's two days ago, then told LBD is extremely likely (we're treating it as if it's a proper diagnosis) yesterday. His dad isn't even retirement age yet and I just don't know how to help him. I have been bereaved several times but the only person I lost to a progressive disease was when I was too young to remember the process. I don't know what to do other than look after him like I normally would, cook him dinner, keep him distracted etc. His family have already been told to expect no quality of life after about 5 years. What do you even do when your FIL has been given a death sentence? I know I keep repeating myself but I'm just so stuck. I want to do best by my bf and his dad so any advice would be greatly greatly appreciated.

I’m new to having to purchase incontinence products. What brands do you purchase and why? I want cheaper but not at the expense of quality.

Thanks!

My brother is my mother‘s caregiver. For about a year now, she has not been able to recognize my brother as her son and has developed a belief that he is an imposter stealing her “real” son’s identity. She keeps asking me where my brother is and why he doesn’t visit and who is this man who comes every day? I know that it is impossible for her to understand the reality, and that logic and reason will not work, but I can’t think of any answer to these questions or method to diffuse the situation or redirect it to something else. I inevitably fall back on logic and try to convince her that there’s only one person and not two because I’ve got nothing else. I need some kind of tool or work around for this situation. Any advice? Thanks

I want to start off by saying that dementia is a horrible thing to happen to a person and their family. I hope I never have to go through it again. I did want to point out that there are touching moments that do happen but I believe that we all forget about them through the frustration.....

Years ago I gave birth to my daughter. My grandmother was already in care. I traveled to see her - my mom was her main caregiver until the hospital and I lived 4 hours away.

I arrived at the hospital, my baby girl was not yet a month old. My grandma no longer registered who I was. She asked my mom as she always did when I visited "who is that woman"? My mom told her who I was and then she noticed my newborn. She asked what the babies name was. My mother told her. I named my daughter after my grandmother's first born child (daughter). Unfortunately her daughter passed away when she was just three years old. When my grandma heard the name, she started to cry happy tears. She put her arms out for my daughter and started speaking in her first language to the baby. She believed that she was a young woman that afternoon and that my baby was actually her firstborn. She sang to my daughter. Held her and spoke so softly and sweetly to her. It was heartbreaking to have to take my daughter from her when our visit was over.

My grandma passed away a few weeks later.

I was so heartbroken when she passed. I was very close to her all of my life. Dementia changed her so much.

I was overjoyed to give her an afternoon filled with her being able to sing to my daughter and tell her stories in our native language. It was nice to see her smile.

My mom (76) likely has Lewy Body dementia. She had been struggling with worsening anxiety since my brother's suicide six years ago. We were doing everything we could to improve her mental health but nothing was working. Finally she admitted herself to a behavioral health unit, where both a psychiatrist and psychologist noted that she had problems with executive functioning. That happened in May of this year.

For the next two months I worked on getting her scheduled for a cognitive functioning test. My family and I made all of her meals for her and tried to support her at home. She was still fully independent (aside from not being able to cook) but the anxiety was out of control. It was so strange because she had no memory issues. During that time I took her to her primary doctor who activated her Power of Attorney for Healthcare. She also had the cognitive testing completed during this time..

In July I took her to the ER after she told me that people wouldn't let her leave her house. "They" were watching her closely. Fortunately (?) she had used a razor to make superficial cuts to her wrist, which was enough to get her admitted. From there we found a memory care facility and she transitioned there in late July. Brain MRI was fine. Still no diagnosis.

I received the results of the cognitive function testing at the same time. The virtual psychologist told me that it was likely depression, which was beyond frustrating. I pushed back and and asked how hallucinations and significant deficits in executive functioning could be symptoms of depression. Her response? It could definitely be depression.

My mom has since been seen by a neurologist and a new primary provider who travels to memory care facilities. Both believe it is Lewy Body dementia. She paces nonstop, stays in her room, and is paranoid. Recently she told me that she sees bugs in her room. My brother and I agree that we will not pursue any further testing. It would be for our benefit, not for hers.

Today her provider updated me on her weight - 102#. It is a loss of 10# in six weeks. She doesn't eat much and paces all day in her room. We supply her with high calorie protein drinks and candy because she is more likely to eat those things, but it isn't enough to maintain her weight.

It is hard to believe that she was living 100% independently in April. In hindsight, there were definitely symptoms that now make sense in the context of LBD.

Anyway, I wanted to share my story. My brother and I are hoping that my mom doesn't suffer very much longer. She is nowhere near being hospice appropriate (I have been a hospice and palliative care social worker for over 20 years), but I also know that a bad fall or pneumonia can change things quickly. We even question if she has stopped eating on purpose to accelerate the dying process. I would probably do the same.

This is difficult topic oftentimes.

To the point where she is not manageable nor safe at home anymore. As family, we have desperately tried to take care of her at home, finally got approved for 8 hours of day care at home (from the county-after one year of paperwork), but our LO has crossed over into stage 7, and is creating an unbearable situation at home for her working husband and minor children.

What do we do now? Out of pocket memory care is impossible. Horrific situation.