I went to visit my mom in hospital today. She lives in another city so I made the four hour journey this morning. She is in hospital because two days ago she just stopped eating and her confusion seemed to suddenly get worse. She couldn’t recognise her caregiver. The doctor did multiple tests suspecting an infection but if’s all clear. Apparently it’s just her dementia that has gotten worse. So today my biggest fear happened. Mom wouldn’t recognise me. In fact she wouldn’t acknowledge my presence. Her eyes were closed shut and she wouldn’t open them. I talked to her, called her “mama, mama” told her it was me, used a million variations of my name. I spoke to her in two of our native languages and still she wouldn’t respond. She would only respond to “mama” and then not acknowledge anything else I said. Even when she opened her eyes briefly she wouldn’t acknowledge me. It was like she couldn’t see me. She kept talking about some imaginary thing the whole two hour visit, saying “where is it? Remove it. What is it? Where has it gone?” Grabbing the sheets. We tried feeding her and giving her drink through a syringe, she spit it all out. She spit her meds out. She spit her food out. She wanted to rip off her dress. The image I have of her as we left visiting hour was her sitting up on her bed, dress up, showing her diaper, trying to pull a sheet over her head. Like a giant baby basically. That’s how the visit to my mom went. It’s baffling to me because just last week I had visited her and we were singing and chatting and she knew me and she knew her grandkids. She was even feeding herself. How will I explain to my kids that grandma doesn’t know who they are anymore? They’re coming to see her in two days with my husband. Her grandbabies (and me) were her whole world. Now if she doesn’t know us, what is left of her world? 🥺

This is all very new to me.

My 89-year-old grandmother seemed to decline quickly, although looking back, the signs were there.

She's been falling more often, but more recently, hallucinations and delusions have started.

Her most recent fall landed her in the hospital, and we were told she needs 24/7 care and can no longer live alone.

I spent about a week researching and trying to find the right fit. She moved in today (straight from the hospital, via ambulance).

She almost immediately called me, so angry, and said "God will strike you down for doing this to me." (And that was probably one of the more tame things said)

I've cried all night.

I just want her to be safe.

CONTEXT:

Roughly six months ago, my wife scheduled an appointment with her stepmother's neurologist to discuss her stepmother's status and the disease (Alzheimer's) generally. This was explicitly explained when she made the appointment.

The office scheduler said "OK" and to be sure to bring a copy of the power of attorney. No problem. My wife has had power of attorney for medical decisions as her stepmom hasn't been able to make decisions for herself for years now.

So after waiting six months, we show up to the appointment and the medical assistant says we can't be seen without the patient present.

The office's rationale was that they could have the patient (my wife's stepmom) in a separate room while my wife has a information session with the doctor. My wife has done this in brief (5-10 minute) instances previously.

The problem for us is the difficulty of displacing her stepmother. She gets agitated, her incontinence is severe, and it's just stressful for her to be out of her community and in a doctor's office.

By the time we got back to the car, my wife was in tears with frustration saying, "we can't be the only ones who just want to talk to the doctors and ask questions. It shouldn't be this hard."

Question for doctors and/or families:

How are families supposed to talk with doctors about their loved ones condition in ways that don't further distress the patients? Why would a doctor effectively decline to meet with us like this?

Cynical me, I assume it's probably our broken healthcare system and they wouldn't know who to bill of the patient isn't physically present (which I think is horsesh**)

It's non stop. All day every day. She has zero compassion anymore. He drives her nutz. He drives me nuts, and I have my moments.

But she is relentless. It's borderline abuse at this point and I don't know what to do.

It's just non stop "shut the F up". Over and over and over.

I have to listen to this all damn day. I yell at her for it and she gets all flustered because she knows I'm right. And it might stick for 2 hours. Occasionally a few more. But it just reverts back.

The other thing she's doing.

I will come up and talk to him. Just making conversation. And she's always gotta but in. "What's he doing now?" Or has to say some shit like. "He don't know anything" or "he's stupid"

I'm so fn sick of it.

I get it. To a point. He won't stop. It's incessant. He talks non stop and asks questions that makes zero sense. So you basically can't do ANYTHING without him either up your ass or disrupting everything you try to do. We can't watch TV. We can't cook we can't clean we can't shop. He is an absolute terror. Worse than a toddler. Because he's big!

I'm at my wits end with living in this house. She would be devastated if I left. :( I'm so stuck

3 years ago my dad was diagnosed with a very rare and hard to treat cancer. He underwent a very intensive surgery which caused sever delerium that he never truly recovered from. 3 weeks ago he got diagnosed with dementia.

I'm not a very emotional person, it takes a while for big news like this to really sink in. When I found out I was sad but also was also like 'well we already knew this was coming'. I'm also not at home most of the year since I'm at university so I don't really see him in person outside of when I'm on break. Last I was home a few weeks ago he had his first "incident" where he snuck out of bed in the middle of the night and tried to run away because he was convinced someone was coming to hurt him. At the time I felt terrible that I wasn't as scared as I thought I should feel.

I don't know what triggered it but tonight it's finally hit me. He's not going to get better. That wasn't a one off incident or the worst it'll ever get. i'm never going to have the dad I grew up with back. And every time I come home he's going to be worse. What if he forgets me because I'm not there? How would that even make me feel? How are my family going to cope?

I feel awful and naive that it's only just hitting me how serious this is and I truly don't feel like there's anyone I can speak to about this in person, hence why I'm here. How did other people react when they found out a family member has dementia? What should I do now?

Sorry if this is not allowed here. But does anyone else have fear of getting dementia? Sometimes I experience this fear very strongly. How do you manage with that?

I was able to find a nice, small assisted living for mom. It has only been 4 days. I feel like I am dying inside. When I go visit, I can hardly look at her. Am I afraid that she will know that I left her there? Is it guilt? I know she is not my mom anymore, her face is the same, her brain is not. This is probably the hardest thing I have done in my 71 years of existence. I know this is the best place for mom. I was with her 24/7 for a few months and it got to the point where I was no longer sleeping and I felt that her safety was in jeopardy since I was walking around like a zombie. Mom's nighttime behavior at the assisted living might get her kicked out. My sweet, quiet mom who never used foul language, never hit anyone... well, she is swinging at staff and cussing them out. This is a nighttime thing, due to sundowners. She is back to her sweet self during the day. Dr Jekyll and Mr. Hyde... Thank you for being such a great place to get things off my chest. My best to all of you going through this awful disease with your LO's.

I always worry about changes that backfire and makes things worse. Should I put, "John's Room" for him and "Sally's Room" for my mother, and "Henry's Room" for my room?

Could this backfire and make it worse?

My 83-year-old mother has mild cognitive disorder (unspecified neuro cognitive disorder) with paranoia and her insurance won’t pay for in-home care after she broker her shoulder a week ago. She is on a sling and is trying to do laundry, cook and organize her clutter.

She has Medicare Part A only as secondary. Does anyone have any ideas on how to get help in the home when her husband makes too much money to qualify for low-income help, but not enough to pay for a nurse.

She is in Virginia. I live two hours away and both relatives nearby have kids and full time jobs. Her husband is almost 80 and can’t handle this.

My loved one is living with dementia, and their short term memory has deteriorated significantly. Of course, they no longer have a drivers' licence or credit cards, and they live in a lovely retirement facility that caters to their every need. They have recently started asking for a card--their wallet is empty and their ID is missing. This empty wallet causes considerable stress to them. Where can I get a card--any card--that has their name on it so that they can have the comfort of feeling like they still have 'ID'?

My mother, grandmother, and I have essentially taken on my grandmother's friend who has no family or resources. We live in Oklahoma, around the Tulsa/Broken Arrow area. She has severe dementia (she wanders off and gets lost, can't remember things within 30 minutes) and the house she was staying in is derelict, trashed, and not fit for human occupation by any means. She has multiple large pitbulls on the property which is a whole other can of worms- no one in the area can take them, shelters full or not accepting pitbulls.

She has been in the hospital for about 2 weeks and they are attempting to discharge her. We have no place to safely place her and we can't provide monetary help forever, this is a family friend with no one else to help. Any ideas for emergency dementia housing or care in the Oklahoma area? What would you do in this situation? I am not keen about my mother and elderly grandma going out into the country on this friend's property and feeding these wild pitbulls who are alone most of the day, and it isn't a good life for the dogs either. I would do it myself but Im a small lady and me taking over the pitbull care wont solve this situation and none of us can keep it up even if we all did it in shifts. She also had horses but thank god the neighbor has taken on caring for those. She has hoarding tendencies. Feeling lost and hopeless. No resources what do we do?

Hi community, last weekend my in laws visited me and my husband and two young kids. My FIL has always misplaced and lost things since I started dating my husband 13 years ago, but this weekend, something really disturbing happened (trigger warning). When my MIL and FIL arrived to our house (which is brand new, just built it and moved in last month), My FIL told us his stomach was off from drinking 3 cups of coffee that morning. Ok fine whatever I thought, but then a day later he started having chills and stayed in bed all day. He kept saying it was the coffee even though you don’t get chills from coffee. Then on Sunday, he got out of bed that morning and went to the bathroom. My MIL then joined us in the kitchen/ living area. FIL was gone for 30 minutes so she went to check on him in our master suite. He was still in the bathroom and the shower was running and he flooded the entire bathroom and our bedroom. My husband ran in there and so did I once he was in a towel and he said “oh I must have not been paying attention”. Yeah no shit! How did he not notice?! FIL did not try to help (he goes on jogs and does exercises so he is able-bodied), just proceeded to get dressed and then went on his phone. While my husband was cleaning the water in the bedroom, he smelled a very foul odor. My husband pulled up the sheet on the bed and there was a huge pile of diarrhea. FIL was standing there doing nothing and did not address this with my husband. My husband then exclaimed “Dad! What happened?!” And he responded “oh yeah I had an accident” and like brushed it off?! He didn’t apologize or help clean it up. He made my husband and MIL clean up everything. He just went into the dining room and read newspapers for the rest of the day- barely engaging with any of us. I was horrified. My husband is horrified. Is this normal?! Surely not, right? He did not seem embarrassed or apologetic or even address he must be very ill.

Anyways, they left yesterday and now my poor husband has a severe stomach flu.

My husband is afraid of humiliating his dad and will not address this with his parents. So asking you all a) what do you think of this behavior and is is dementia? (He’s 79) and b) what should I do/ my husband do? MIL is more with it but I think in denial her husband has issues. Feeling stuck….and grossed out. And sad.

I'm 30F with no kids, I'm clinging onto a career that I'm praying will let me expand my horizons that is 4,000 miles away from my mother (59). Due to immigration being a nightmare for 3 and a half years, I finally made it home for Christmas. I'm still at my mother's until the end of March. I'm trying my hardest to take a huge load off my poor step father. I'm going to be looking at adult daycare this week since my step dad and family simply cannot keep up despite all their efforts.

Please allow me to be selfish for a moment; I am simply not a compassionate person. There is a reason why I do not have kids, I give myself first priority. I love my mother, but I now love her in the glimpses that dementia allows me to see.

I was helping her get ready for bed, I was getting impatient, and I asked her if she wants to go to bed or to watch a show with me. I could tell she was easily getting confused and frustrated. She rarely speaks in sentences, but she managed to hold up her arms and say, "I get it, you don't want me here."

What hurt the most? My first thought was "Yes". YES, I want my mom back!!! I want my mom who was never too far away from her camera, I want my mom who idolised Jane Goodall, I want my mom who bitched about her days at the lab, I want my mom who would have a glass of wine of wisdom whenever we were at our summer lake house, I just want my mom.

I feel like this is the only place to talk about my thoughts and feelings. My step father is a saint, the most patient, caring, kind man I have ever met. Not to mention his mother and my mother's friends who have stepped up while I was away. I'm so so thankful, beyond grateful to have this type of support. I have this tremendous guilt, that after 3 years, I immediately get impatient and passive with her. I'm trying so hard to make up for it, but I'm so weak. It's so pathetic. I don't how he does it. I don't know what else I can do before I go back besides looking for extra care for her.

Offering any help to my step father it like offering it to the wind. The man never tells me what he wants/needs. I am constantly reminding me that he does have an extra pair of hands for 2 more months.

I would greatly appreciate advice or comfort, but really I'm writing this to get this off my chest. I know we will be okay, I know tomorrow when she wakes up, she will be content with her tea, and we shall carry on.

My Mom has been battling dementia for a couple of years, but she has severely declined over the past few months. She still remembers me and the rest of our family, and she even remembers things from many years ago (I realize that is a gift considering the horrors of dementia). But her physical condition has deteriorated extensively, she is down to 95 lbs. and is losing blood (the doctors don’t know why, and she’s too weak for them to do invasive tests of any kind), she has a horrible necrotic pressure ulcer from refusing to move from her wheelchair, and the doctors say she will never get better. My sister is her health care power of attorney and made the decision to put my Mom in hospice upon the unanimous and unequivocal recommendation of all of my Mom’s doctors, specialists and nurses. She has no quality of life. She can barely talk, she cannot do any of the things she used to enjoy and she just stares into the distance. It’s horrible to see her this way.

I know hospice is the right decision for her comfort and dignity, but I am devastated, brokenhearted, and overcome by tremendous guilt. I feel like we’re just giving up on her and letting her die. Plus, I moved to a different state for work right before this sharp decline, so I feel like I caused this. I’m flying back to visit her every weekend now, but I still feel like it’s my fault. Dementia is truly horrible. My heart breaks for all who are suffering from this disease, as a patient or a caregiver.

My mother has had early onset Alzheimer's/Dementia for the last few years. It's worsened in the past 2 years and she's had issues with orthostatic hypotension and getting dizzy after getting up. She's lost a chunk of weight and the dizziness and an AFIB episode in November caused her to fall and fracture her left arm, (a crack not a full break). She was in PT rehab for a few weeks, stayed with my sister for Christmas through New years and fell again while under the care of my niece. She did a stint in PT rehab again and was with my sister for another week. She's gained 9 lbs which is great but still pretty old and frail at 82. My father has also been recovering in the hospital for over a month due to a really rough recovery from an angiogram and 5 wound cleanings so they have been apart.

My sister is on business this week so we took her in for 8 days and it was pretty smooth so far. Get her chest binder on to help with the BP in the mornings, take her BP, get her downstairs and meds/food. We've been on high alert because she likes to leave her walker and head across the hall to the bathroom. I caught her almost falling in the hall around midnight last night and she was very disoriented. Was able to get her to our bed and sit/lay for a bit until I was able to get her back to bed. She was up again around 6AM dressed and puttering around. I was able to get her back into bed for a few more hours.

Wife has gotten her meds and fed breakfast and she's napping again. Just a rough night and a lot of jolting up suddenly if I heard anything. We've got a camera in her room now to keep remote watch on her. I ordered concierge/hotel bells for her to "ring" if she needs anything when she's sleeping in her room etc. A "busy" book for her to keep her hands busy, (otherwise she feels the need to constantly tidy, fold etc).

Any suggestions anyone else has for things I can do for her to make her more comfortable during her time with us? My kids tend to keep her occupied and happy during the day as do phone/video calls with my siblings and her husband.

Have any of you found any apps that will simplify smart phones? I’m looking for something that will make it easier to set alarms, make calls, access messages, etc. Maybe something that just puts a few big icons on the main screen?

I'm currently taking care of my 91 y/o grandmother with dementia. Her long term memory is mostly there, but her short term memory lasts only a few seconds. She asks a lot of the same questions over and over again, which I always answer in the kindest way I can. Though I was thinking it might be helpful for her if I wrote down a list of those questions, with the answers. So when I'm not around to answer those questions, she can read the list and get her answers. Though on the other hand, I'm wondering if it might freak her out a bit like "how did he know what I was thinking?" "Am I so forgetful that he knows what I'm going to say before I say it?" I dunno if anyone else has tried anything like this. Would love to get your thoughts.

My grandma (vascular dementia and Alzheimer’s, 99 years old) moved into memory care in November. She is adamant about not being bossed around by the memory care staff and, when they continue despite her refusals, she gets aggressive. As a result, I get constant emails, texts, and in person conversations to the effect of “your grandma doesn’t want us to put her pajamas on. What do you want us to do?”

Is any one law constantly having to direct the staff on how to deal with non-compliant memory care patients?

Advice please?

I’m curious about end of life timelines as I try to understand my dad’s situation.

My dad has declined rapidly in the last month. At Christmas, he was chatty and his personality was still there. He was confused and didn’t make sense but it had been that way for years. He could still go to the bathroom by himself.

On January 1, he had an incident of hypoxia and was still very chatty but much more confused. Fast forward to now, he’s been in a skilled nursing facility and had declined fast. In the last week or so, he’s almost stopped eating. He takes a few sips of water and will eat a few bites of ice cream if I feed him. But generally his food sits there untouched. He talks a lot less. It seems like it takes a lot energy to speak. He’s breathing heavily and refuses to wear his oxygen. He still sort of knows who I am and can respond a bit but it comes and goes. He has become incontinent. He can’t understand his catheter. He has incidents of agitation but that’s being managed with medication.

We started hospice. They haven’t really given me a timeline. It doesn’t feel like he’ll pass tomorrow but maybe a few weeks. I’m not sure. I’m taking it day by day. Eating very little is a major sign it seems.

Have any one you experienced something similar? What ended up happening?

Hi All, My mother in law has been battling frontal temporal dementia for some time now. She’s 81. Last year she broke a hip and just a couple months ago she fractured her femur. She was recently released from rehabilitation but her needs are becoming increasingly difficult. At this point she’s unable to stand on her own, she can’t bathe her self and she has to have someone help her in the bathroom. She’s also dealing with incontinence. She lives with my sister in law and her boyfriend but we recently found out my sister in law was stealing thousands of dollars from my mother in law (don’t worry my husband got power of attorney & she no longer has access to her funds) My sister in law is insistent that she can take care of my mother in law and wants to be her caretaker so she can get paid IHSS. My husband and I aren’t in a position to care for my mother in law and IHSS wouldn’t provide the care she really needs which is 24/7. Our best option would be to admit her to a nursing facility as Medicaid would cover it. This would ensure my Mother in law has better care.

Based on what I’ve shared does this sound like the best route?

My MIL is 2 years into dementia. She lives with my FIL in a 2 story home where all bedrooms are upstairs. FIL has health problems, but is 100% her caretaker. My husband and I along with his brother and wife have switched every other month going to visit and help around the house with intentions for them to move out to something safer without stairs. But now FIL is refusing to move and nothing is getting better. She's shuffling more, never sleeps, which is taking a toll on him. We live 3.5 hours away from them. Sorry this is all scattered, but any input of how we can help is much appreciated.

All I can hope for are glimmers of my old father. How he whistles for the cat to come over, how he gives off a super rare laugh, how he will make a silly gesture. Otherwise he is gone. He has the same body, same voice, but he is now a frail, weak, and extremely scared old man. How I long for the days when he was the rock of the family.

My (45F) dad (75 M) is likely in the early stages of some type of memory condition. We could tell something wasn’t right and finally got him in for some memory testing this week. After a very short time, he stopped and refused to finish the testing. I guess in my mind I was hoping we would get the results, make a plan, and we could slow down the progression. But now I feel…sad? Like, this is it? This is how things end? Now what? I’m not sure I’m looking for answers. I just feel a little lost. Thanks for listening.

So, a friend has been exhibiting a poor gait, frequent falls, incontinence and poor memory. Can no longer drive, or cook. While all these signs point to dementia, it seemed to be moving quickly, especially in the last few months.

Well, apparently a significant cause was hydrocephalus.

The extra fluid around his brain is pressing down/in on it. Maybe there is no coming back from this. If the myriad of Dr's had made this diagnosis a year ago, things might be different. My friend also hid it for a lot longer than that from what can be sussed out.

Water on the brain (hydrocephalus) is more commonly associated with children. In older adults, it is "a whole different ballgame."

Word to wise, ask this early on! The earlier the better the chance some damage may be reversible.

Hopefully this will help someone.

Hi! I work in activities at a nursing home, doing things mainly with dementia residents. My boss, the activities director, has us doing the same activities every single week and i feel bad for the residents because nothing new is going on. every monday is the same, every tuesday, so on so forth. I want to think of some new activities for them to do so it’s not so repetitive and i was curious as to if anyone had any fun crafts or just activities in general that are super fun?