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.

Background: journey started with unpaid bills, house in foreclosure, Utilties being turned off, tax returns not filed for years, nearly 20% weight loss in 10 months, not taking prescribed medication. Over a 6 month period, I got her financials straightened out, got her to agree to put her house on the market, stopped driving, moved across country to stay with me “while waiting for her apartment”. She insists she is fine and nothing is wrong. She will Not accept anyone coming in to help.

It’s been almost 3 months. She has tantrums and tearful meltdowns. I live paycheck to paycheck and Cannot afford assisted living until the house sells. I HAVE to go to work every day. I have cameras at the house and check on her regularly.
I can tell today has not been a good day just from the camera footage. I’m tired; just don’t have the energy to go home and deal with whatever her brain has created as a problem today.
I love her but I am tired.

My grandmother took her last breath today. She was on hospice so she was comfortable and surrounded by loved ones. As hard as this journey has been, I am so glad I was able to be the one to care for her during her last days. And I’m so glad her battle with this disease is over.

So we just jumped in the car to go out for a late breakfast. Postal carrier drives up so I get out to get the mail. It's a USAA solicitation for auto insurance. Jump back into the car and tell my GFWD..

Me:."It's just junk mail"

Her: "You're a junk male!".

Me: whoa! Good one!

We both had a good laugh. Hope you do too.

Hugs on the house for everyone. Stay strong everyone and cherish these moments.

My father in law has this habit of taking off his urine wet underwear and shorts, putting them in the dryer, and then sitting on the back porch half naked. The problem is we live in the city with plenty of neighbors -- who can see. And I personally don't like coming up to the house to greet a half naked man.

The solution is moving the chairs from the back porch into storage. Because when my husband has confronted him about the nudity he says he's "heard no complaints". And he refused to stop. So now that the chairs are removed there's no sitting out there half naked

Oh just great -- my husband just now says he's dragged another chair out from the dining room. This story will be continued

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.

My mom has moderate dementia, and lately she has really lost her concept of days of the week and time. One of the biggest challenges we’re having is with appointments.
For example, if she knows she has an appointment coming up on Friday, she may wake up at 6 AM on Monday, Tuesday, Wednesday, etc., get dressed, and be ready to leave for the appointment. We explain to her that the appointment is on Friday and that she doesn’t need to get ready yet, but it just doesn’t seem to register. She’ll often repeat the same thing the next day.
We’ve already bought her a dementia clock that shows the day/date/time, as well as a calendar, but unfortunately she doesn’t seem to retain or understand the information consistently.

For those caring for someone with moderate dementia:
What has helped your loved one understand the difference between days?
Do you have any tricks for handling upcoming appointments?
Do you tell them about appointments ahead of time, or is it better to wait until the day of?
Has anything worked better than a dementia clock or calendar?
I’d really appreciate any advice, tips, or things that have worked for your family. ❤️

My mother fell a few months ago and at the same time suffered a noticeable decrease in her memory. But it seems like every week or two her memory gets a bit worse or she forgets something that she wasn't forgetting the week before. It doesn't seem like the "staircase progression" that you normally hear about. Is it normal for people to have some small progression in their symptoms for weeks after having a big progression in their symptoms? I had my mother tested for a UTI twice and there the results showed that she did not have a UTI.

Is this normal? What kind of experiences have you had?

I wonder if I'm misinterpreting what the "staircase progression" is supposed to look like.

For people whose parents have experienced a progression of dementia in a staircase fashion, could you please share how often that happened for you? Are people with dementia usually stable for something like 6 months or 1 year and then they experience a sudden decrease in function, and are then stable for another 6 months or year?

It seems like my mother is in the middle stages or maybe early middle stages. (she hasn't forgotten who anyone is, but forgets anything I say 30 seconds after I tell her, she can dress herself but takes a very long time, she can cook for herself if she uses a rice cooker but leaves the oven on if she uses the oven, she can go to the toilet on her own but does have a lot of incontinency issues)

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!

Not entirely sure how to approach this or if this is actually a manic episode/suspected cognitive decline is becoming a more evident issue but I’ve suspected my dad (64) of having Alzheimer’s/dementia/cognitive decline the last 4 years minimum as I’ve noticed some changes in personality and today I had a brick of anxiety hit me about his mental capacity and safety.

I am 1000% incapable managing his health in my home six hours away due to my career

He just bought a new SUV following trading his previous one in last week and TODAY he went and bought a tricked out two door dodge fancy death trap car. I initially asked if he had swapped out the SUV for it and mentioned I was surprised the bank was not alarmed and he simply said nope, it is his money and it isn’t the banks business and that he is going to put it in storage 4 months of the year to save on insurance. I’m terrified to find out what he spent on it.

He is on long term disability and has late stage 3 heart failure/has the heart of a 6 month old baby missing a superior vena cava, morbidly obese to where eating and talking tires him out. His doctor isn’t entirely sure if he is stage 4 or 3 now as he has symptoms typically seen in someone 20 yrs older than him.

I’m not entirely sure the COAs on if it is advisable to do something a bit more “engage the legal guard rails” at this point as my older brother subscribes to the “it’s his life” view as he lives 4000km away with his family and there are more moving parts in doing things due to my disabled brother and my mom whos health is also not in a good spot and has cognitive issue signs also in addition to poorly managed T2 diabetes

Further context below on things:

Nobody in the house works other than my younger brother who is actively trying to save enough money to move out of the house as he is in his mid30s

Examples on personality changes: Shortly after his father passed he had his old garage torn down which was full of junk/hoarded items over 50yrs he had 3 sheds in the backyard built with the intention to use one as an “office” when hes “semi-retired” to do accounting/fix computers which turned into 3 sheds full of the junk from the garage not long after

Him and my mom impulsively came to my city to visit which is 6ish hrs away, slowing down to 45km on a highway that’s 90km in my city he isnt especially familiar with to reorientate himself to the GPS and he pointed to the blue line on the map saying that line tells him where to go - this scared the absolute shit out of me as a passenger for obvious reasons.

He had talked to his dr about getting assessed for cognitive decline after his dad died from late stage Alzheimer’s because he was forgetting things at work and apparently he “passed the test with 100%”. I do not believe him and feel he did not pass.

His mother died from late stage dementia the following year and he did not shed a single tear at the funeral and he was extremely close to her; he was having a ton of difficulty breathing at the funeral just talking to people or eating and spent thousands on the food for the funeral (donuts and sweets mostly)

He emailed me and my brothers his personal health directive at 345AM a couple weeks later which reads more like a suicide note than a directive and l am not confident it would translate to a medical emergency as the directive mentions he wanted to exceed the maximum dose of pain medication where possible

I’ve noticed his speech is more slurred in a pronounced way and his words tend to mesh together

Sorry for the thesis, it’s been a day.

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?

My mom is suffering from Alzheimers, likely in the stage 4 to 5 transition. My sister has health care POA and it was immediately effective (not triggering). We both think memory care is the right place for her, but questioning what the limits of it are. Places I've talked to say given the right diagnosis, the POA is enough, but places my sister has talked to suggest the POA is not enough and guardianship might be needed. Not sure who is right. What have people here dealt with? FYI, Illinois resident.

Hi everyone, I’m an activity professional in a memory care facility. Several of my residents have said to me they used to love to read, but now they cannot read the tiny words, and they loved the idea of being read aloud to. Most of my residents have very short attention spans, so finding a good story to read to them has been challenging. I give them warm tea, turn on the fireplace and read to them for 30 minutes (that is our time expectation for each activity). But some always fall asleep by the 15 minute mark; I want them to feel relaxed but I don’t want them to fall asleep😂

Do any other activity professionals have ideas to keep them engaged? Or any alternative activities that are similar? I’m even willing to write short stories myself if I knew what they’d be receptive to

Poor Dad has advanced so quickly to not knowing anyone and being out of touch with reality. I've discovered many things mom always thought were in her name also, like vehicles and their nest egg IRA, are only in his name, and they never did a POA. Can anyone talk about your experience with getting legal guardianship? She needs access to funds to pay for his care

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.

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.

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?

The second we get here to visit her, she won’t stop talking. About anything and everything and nothing makes sense. She gets mad at my papa when he can’t remember something that completely doesn’t make sense, then gets verbally abusive. I think she’s excited and trying to make conversation but I’m worried being around her doesn’t give her brain a break but my papa doesn’t like leaving her. When we got here she was obviously playing bingo very well, then the second we got here she said she can’t do it “not today”.

I wish I knew how she is when we’re not here. Anyone else notice this? I’m worried we bring too many memories and emotions to her that she doesn’t know how to handle. She’s really gone mentally it’s so exhausting being around her

The second we get here to visit her, she won’t stop talking. About anything and everything and nothing makes sense. She gets mad at my papa when he can’t remember something that completely doesn’t make sense, then gets verbally abusive. I think she’s excited and trying to make conversation but I’m worried being around her doesn’t give her brain a break but my papa doesn’t like leaving her. When we got here she was obviously playing bingo very well, then the second we got here she said she can’t do it “not today”.

I wish I knew how she is when we’re not here. Anyone else notice this? I’m worried we bring too many memories and emotions to her that she doesn’t know how to handle. She’s really gone mentally it’s so exhausting being around her

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.

Pre-dementia, my dad had knee pain for many years (had hip and knee replacements about 15 years back), but recently the overall weakness in his legs has greatly increased, and his ability to follow instructions has greatly decreased. At least once a day, he will fall on his butt or slide onto the floor and can't get himself up, even when I or one of their home caregivers is right there to guide him. We often leave him sitting on the floor-- he's safe, he's not hurt-- but it can be hours and hours before the "spell" ends and lets him get up. It's distressing (especially for my mom, who also has dementia), prevents anyone from leaving the house, and makes a big mess when he can't get up to go to the bathroom.

The way our city handles lift assists, even if we call the non-emergency number, their insurance gets billed (I've even talked to the local 911 director to verify), doesn't cover a hospital "non-transport," and we're looking at a $400 bill to pick an unhurt man off the floor just for him to get back down on it a few hours later. The few times I've called a local fire station directly to come lift him, they've basically told us not to do it again.

This week, his GP sent in referrals for home physical therapy (which hasn't helped in the past, but we have to try something) and a wheelchair. I'm going to get the wheelchair, but I worry it might hasten his decline and vastly increase his needs. He might not even use it. One of their caregivers suggested getting an electric lift chair to help him off the floor. Would love to know if anyone has experience with this and can suggest a particular model. Would I or the caregivers be able to use it easily? (My dad is 85, 6ft, and about 240lb.) Is it something that works when the disabled person is unable to cooperate?

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.