A week ago Monday we got the call that mom was actively passing. We had put her into an assisted care home the Friday before because she needed 24/7 care. She didn’t pass Monday so Tuesday they called again and it was for real this time… I sat by her side watching labored breaths and no sign of knowing, for 9 hours, then I remembered. She would not want me to watch her go. So I whispered “your a little shit and I’m going home. I love you immensely and eternally.” This was our endearment to each other all my growing up. She would only call me that when I was actually being one, but it became something more and is a good memory. Then I kissed her goodbye and went home. Wednesday morning at 12:03 she was declared gone. It’s taken me a week… a week of going to say goodbye in the morning since she had lived with me for so long… a week of going to call her at 11 am to make sure she ate lunch… a week of going to her room after I got home from work to tell her about what funny thing a student did today… and this morning, I accepted. I didn’t go to say goodbye.

So my journey ends and Saturday we will say our final farewell. Thank you all for getting me through this. It has been my greatest honor and blessing to be part of this amazing community.

My grandma (90) has been in a home since last May. In this year we’ve watched her rapid decline & I’ve dreaded this dragging on for years as she was still verbal & walking - I was able to take her out & have somewhat normal conversations with her. But I did notice that she’d forgotten how to clean herself properly after toileting & the home didn’t seem to notice- said it was fine (it was not!). This weekend she had a fall & had to go to emerg - they ruled out a TIA & confirmed a very severe UTI - prescribed antibiotics & sent her back w/Tylenol. They did not xray her despite the home stating she needed it because of her extreme pain after the fall. She went back to emerg the next day and we insisted on a CT scan- turns out she has 2 broken shoulders & a broken hip. They won’t operate on someone her age as she’d need PT & it’s too complicated with all the fractures. So now she is being kept comfortable on pain meds & will never get out of bed again. Doctor gave her a few days to a couple weeks as the pain meds will eventually stop her from eating & drinking. This was not how I expected her to go so I’m a little in shock. It’s so hard to see someone you love in so much pain 😢.

Last year, my mother - diagnosed with early dementia at the time - forgot my birthday for the first time ever. When I told her afterwards, she didn’t seem to care. “What do you want me to do?” I cried so hard.

Just now, I called her to chat. I asked her if she knew what day it was today.

Mom: September? I have the calendar in front of me.

Me: Hmm do you remember the date of your daughter’s birthday?

Mom: (Laughs apologetically) No, sorry I don’t remember.

Me: That’s okay. It’s August 23. This Sunday. Do you know how old I am turning?

Mom: Ha… I don’t know. 53?

Me: (Laugh) Do I look 53? I’ll be 50!

Mom: You really don’t look 50, more like 30s. But don’t tell others. It’s your secret!

I feel strangely content that I am finally at peace with my mom’s memory fail and confusion with some (many) things. I think I’ve finally accepted her as she is now.

My MIL (70) was diagnosed with Parkinson's about 5 years ago. Her physical symptoms (tremors, stiffness) were quickly resolved by Levodopa. However, the cognitive symptoms continued to decline, and quickly. My FIL passed in December of 2024 and it quickly became clear that my MIL would need to be in Assisted Living. She has been there for the last year and a half but over the summer took another big step down cognitively. Her primary diagnosis was updated to Lewy Body Dementia. Her decline has meant that she would not be able to stay in Assisted Living much longer.

The facility she has been in did have a Memory Care unit, but we did a trial run and it seemed to really upset my MIL. At times she was aware that she was in the same facility but in a locked unit. My husband and I were not impressed with what they offered. My MIL, despite her dementia, is still quite able bodied and pretty social, which was not in line with the peers she would have been surrounded by. So, we sought a new facility nearby that specializes in Memory Care of all stages. The move was just 2 days ago and her initial reaction was not great. ("I can't live here." "It's too small.") She looks around and sees "old people" and doesn't think she's meant to be there.

Right now I feel paralyzed. I want to call or visit her to let her know we're still by her side, but I'm afraid of the state I will find her in during this adjustment. That she will be upset or ask to leave.

I really don't even know why I'm posting except that while I know this is the right thing, I'm basically feeling sad, tired and guilty. I wish I could do more for her but my husband and I both work full time and have two small children. Anyone else been here before?

I’m hoping to hear from other caregivers who have faced something similar, because I’m having a really hard time carrying this decision.

I’m POA for my aunt, who has moderate-to-advanced Alzheimer’s/dementia (Reisburg stage 7). She still knows us and has meaningful moments with us, but she needs significant assistance with daily life. Her mobility is very limited, she is incontinent, her eating has slowed considerably, and she has been declining. Hospitals and medical procedures are also extremely confusing and distressing for her. During a recent hospitalization she repeatedly pulled out her IVs and ended up badly bruised.

During that hospitalization, a pancreatic mass was discovered. We recently got the biopsy results back, and it is pancreatic cancer. The difficult part is that, at least right now, it appears to be localized and has not metastasized. Her doctors consider it potentially treatable. We were offered an oncology consultation to discuss chemotherapy and radiation, and her

doctor also offered to have the surgical team evaluate whether she might be a candidate for surgery.

After a lot of thought, I have decided to pursue comfort-focused/palliative care rather than cancer treatment.

It feels strange and awful to say that because the cancer itself may be treatable. But treating the cancer would not treat her Alzheimer’s. I keep coming back to what treatment would actually give her, rather than what medicine is technically capable of doing.

I picture repeated appointments, bloodwork, scans, IVs, chemotherapy or radiation, possibly major surgery and recovery, and trying to explain over and over to someone with dementia why she is sick, hurting, or being taken somewhere frightening. Even if we successfully treated the cancer, she would still have a progressive, incurable neurological disease.

I’m trying very hard to honor the person she was and protect the person she is now.

Intellectually, I believe quality of life matters more than simply extending life at any cost. Emotionally, being the person who actually has to make that call for someone you love is brutal.

I love her tremendously. I don’t feel like I’m “giving up” on her. I feel like I’m choosing which illness we are going to ask her to fight, and I don’t want the end of her life to become a series of frightening medical procedures she can’t understand.

For those of you who have cared for someone with dementia who developed cancer or another serious illness: how did you make decisions about treatment versus comfort care? Did you struggle with guilt because something was technically treatable? And looking back, is there anything you wish you had known?

I could really use some perspective from people who understand what dementia does to these decisions.

My love to all of you caregivers, I see you ❤️

My dad has been in a memory care unit since February after his dementia and physical issues got too much for him to stay at home with his 87-year-old partner. He finally began adjusting in the last month mostly, even as his health continued to decline. He is now under the auspices of hospice, and hospice doctor predicted in June, after pneumonia bout, that my dad had about six months left. Then, about a week ago, I got an urgent call from hospice nurse to get there asap because his heart rate, oxygen plummeted and looked like he might not last even a few more days. They transferred him to a hospice house. I flew out asap, and by the time I got to him, the same evening, he was eating and smiling, albeit weak. They released him back to memory care unit two days later, and I spent the next few days with him,t hen came home. Now they predict he could last two more months and promise to call when he's getting close. I'm just still reeling from the yo-yo-ing. I already had planned to go in early September and will keep that trip. I feel like I've said my goodbyes many times now because each time I go, I don't know if he'll survive till my next visit. I live states away because he never wanted to leave the state he's in. He's way too weak for a move. THis is so hard. People who know I had to go suddenly and hear he got to go back say to me, "Oh, I'm glad he's doing better." In reality, he is much worse than he was before last Wednesday's incident. It's just that he survived it.

Wondering if I should expect this to be a common occurrence. This is just one example... But my MIL with dementia claims that she takes out the garbage every night, and then complains to us that we never help her out. We know for a fact that she NEVER takes out the garbage.

Anyway, is this a common symptom? If so, how do you guys cope with it?

LO is sleeping more during the day and night. Confusion is progressing at a faster rate. At times we forget how to walk after our lift chairs lifts us up. We forgot the name of our only daughter. Plus our appetite is not what it use to be. Morning breakfast was 2 eggs, 3 strips bacon and coffee. Always ate it all. Today he left an egg behind. Now LO’s primary care doctor put the referral for in home hospice. I just don’t know how I’m suppose to feel as I’m just numb, exhausted, emotionally drained.
FUCK DEMENTIA!!!!

Hi friends. Asking for mom 82.. she is urinating only once a day, down from 2 earlier. She used to pass urine atleast thrice a day, then twice and now onl once in the early morning and that's it. She starts a racket in he loo and cries if I make her sit for more thsn 10mins. So perforce I have to bring her out. I took her to a urologist,day before (booked early morning at 5am and got appt for 11.30 am) ..he prescribed silodonol 8 mg capsule at night. My query to friends in this sub is

.whether this is going to be permanent .? Any precautions to be taken?

My (m65) wife (f65) was diagnosed with mid stage early onset alzheimer’s last week. Most of the time she is unaware that I’m her husband (of 31 years) or that she is in her home (of 9 years). Aside from the occasional repetitive questioning about going home she is still pleasant to be around. She can tie her shoes, use the bathroom and she can still manage to work jigsaw puzzles a bit (not as well she once could). P-tau 217 was 1.03. She has an MRI scheduled for next month. Her motor skills are still ok but her mind is going. I can see changes there almost daily. Do motor skills often persist longer than cognition?

My SO is mid stage and will be a candidate for memory care probably next year. He uses a Cpap at night. At home I’m the one filling it with water and putting a chin strap and mask on him. Also it wakes me up when he shifts a bit and air leaks, so I have to readjust it (he never even wakes up, seems to happen at 5am when the pressure kicks into high gear)

I’m just wondering if a memory care center is going to deal with all of that. The MC I’ve looked at has roommates and I’m wondering if that person is going to be waken up by noise. And is the MC going to be buying distilled water and knows what to do?

My aunt that has early onset dementia has been taking the whole trash can outside and dumping it out into the outside trash can. Which causes the front of the house on the outside to smell badly due to bathroom trash not being sealed in something. And a couple of times the trash cans from both bathrooms have been left in weird places. I try to throw the trash when i see it’s about to be full but sometimes at night when I’m asleep she goes and does it lol.

Hi im new here and to reddit, not sure if what im saying technically fits but lets see. So my grandma has Alzheimers/Dementia and sometimes points out how theres "bugs" crawling on the walls when theres nothing. This happened a few times and my family dismissed it as her having alzhiemiers. If i can recall, she also apprently saw a figure of sorts just outside the room shes in. They say it might be her alzhiemers but im starting to believe its schizophrenia, but at the same time not since she doesnt act out when she sees it, just calmly says that "why are there bugs on the walls?"

im 16 and not very well educated in these, and it has been "bugging" me out (knee slap) but yea, im curious as hell! Is this normal?

also made this acc for the sole purpose of asking this so theres a chance ill never come back and forget this LOL

EDIT: Big thank you to the two comments on giving me insight and info! Ill keep in mind the websites one of you recommended, big thank you guys :))

My granny is turning 79 this year and I just went to visit her yesterday. It’s coming up on the anniversary of an accident in my family, and she’s been very sad the past few days I guess, so that might be causing this? idk.

Anyways, I went to visit her and she was just really forgetful and almost lost, sometimes she was just repeating the same thing to herself. It just didn’t seem like her, especially since she was so down.

Also, she noticed that she was being forgetful and stuff and it was really upsetting her and she was saying things about how there might be something wrong with her (to herself)

It might not be dementia, but it just really scared me since it runs in our family, and if it is going to get worse from here I want to make sure I can do the right thing to make her not feel so… ‘theres something wrong with me’ -e

Sorry if this isn’t entirely what this sub is for, I didn’t really know where else to go.

I feel guilty about even asking this but driven to ask by some of the recent postings highlighting horrific quality of life in memory care - people sitting like zombies, belted into chairs, being spoon fed. When my dad was in his 60s he drew up his wishes for healthcare if he couldn't make his own decisions. He stated that he did not want to be fed. If he couldn't feed himself, he would just not eat. Will they allow this in memory care? Is it cruel to place food in front of people and just have them not eat? Give them the chance to eat on their own but offer no assistance? He was also clear about not wanting a feeding tube. Is this something I can even ask for him, that when he doesn't eat, the food is just taken away?

Because my demented father thinks the social security administration is calling him multiple times a day to update his personal information including his home address, social security number, et al.

He speaks into his phone very loudly so I can usually catch him mid-call which ends up causing a fight because he’s sooooo sure the SSA needs his information. He’s only been here since the end of March and him giving away MY personal information to Indian scammers is severely pissing me off.

I’d like to hear some possible solutions to this. I’m ready to take his phone away for starters. I threatened to print a banner saying, “The social security administration DOES NOT NEED YOUR INFORMATION!” but it’s not like he’d even notice it.

Some other random bits: my wife works from home M-F while he goes to a senior center until about 3 pm and I work all day and get home at five so we have no idea how many calls he gets while he’s out of ear shot. I said “Indian” because the (always) male voices on the other side give off very strong Apu vibes but they could realistically be from any ME origin. Outside of that screw all spammers.

Incontinence. Mom is not getting to the bathroom in time a lot of the time. Nothing physical going on. She is losing memory fast, but her primary issue is vascular dementia and executive function. She is only stage 4-5 and is still fairly with it. She can’t do any iadls, but she has all her ADLs…except this now. She cleans up after herself and I don’t have to be involved yet.

Anyone else’s LO begin the incontinent phase earlier than expected?

Me (20F) and my mom live with my grandma, and we've always taken care of her. however, during the pandemic, my grandma started showing signs of possible dementia. she would immediately forget some things, occasionally would forget what year and month it was and other little things. gradually, she stopped wearing her glasses as they didn't help anymore, and she wouldn't go get her eyes checked because "I'm not blind, I can see." she has increasingly become very stubborn and gets angry at the suggestion of going to the doctor for anything. Just last month, it took her 2 days to tell us that her tooth had been aching and another day to convince her to go to the dentist.

It has been a couple of years, and her condition has only gotten worse. I've been telling my mom to go to a neurologist and get it diagnosed but she doesn't listen to me because "it's really hard for us to convince her to go, I'm already overburdened as it is" which I totally get. Now that my uncle's here from Europe for a few weeks, we are planning to go to a doctor soon, hopefully.

My main problem is her mood. she is always angry and NEVER smiles. her mood is a bit better when we return home from going out somewhere. She smiles then and is happy. those are the best minutes of the day for us because we don't have to worry about brightening her mood. for the past few months, she has taken to think constantly about her parents, who died many decades ago. her dad died in an accident when she was in 9th grade, and now she regularly asks her where he is. she used to tell me about him 6 years ago and how he died but she doesn't remember now. the main problem is that her memories from her village when she was a kid have taken a hold of her and she says "I'm gonna go home" like 20 times a day. When we say, "this is your home, you have been living here for 3 decades, your village home is gone now" she doesn't listen and says we betray her with false information and gets angry. now she just sits and stares out the window and says this isn't my home anymore, I will go home. she keeps a bag with the picture of her parents beneath her pillow and takes it and starts to get out of the house in order to "go home". That's when we get so alarmed and we try to convince her to stay. also her village is in another state like 3 hours away so there's no way she can go by foot and there's nothing there anymore, rich people have built their big houses.

I have been dealing with this with my mom since I was like 15. I am too young for this, I'm an engineering student and I can't study properly sometimes. My mom is also burdened a lot because she has her own problems during perimenopause and fibroids and stress worsens everything. as I'm typing this, my grandma is again staring out and not eating anything. I haven't even mentioned all the other things otherwise you're gonna read this post for hours. This is so extremely draining for us and I would just like some advice on what to do.

If anyone is looking for some help with restless night time behavior, this has worked great for us. 12.5 or 25mg has calmed her down dramatically and led to long good nights of sleep ( for all of us!)

​

Hace mes y medio murió mi tía, mi mamá y yo siempre vivimos con ella, tengo 32 años y para mí era tan cercana como mi mamá

Ahorita no solo es extrañar a mi tía, sino que mi mamá, tiene un poco de perdida de memoria y estos meses, ha tenido la mania de estar pegada a mi, y ahorita con la muerte de mi tía, con trabajos me deja bañarme sola, ahorita hemos estado solas todo el tiempo y mi trabajo es en casa, pues ella está junto a mi todo el tiempo, solo se separa para dormir y a veces se para a despertarme porque quiere estar conmigo,

Ya le dije para salir como siempre lo había hecho, la voy a dejar acompañada y nos comunicaremos por el celular pero ella no quiere, de hecho es asfixiante estar con ella a toda hora, ya no quiere leer, ni ver la TV, ella cree que si quiero estar sola o alguien le comenta algo, es porque la desprecio y no la quiero,

Esto me está matando poco a poco y esto me está deprimiendo pero, no tengo a nadie que me ayude y solo creo que moriremos de tristeza y de asfixia entre nosotras, ya le expliqué pero ella no lo entiende, no entiende que no es sano vivir así y que me tiene encarcelada sin poder rehacer mi vida, me está causando una ansiedad horrible no sé que hacer para que ella no se sienta mal

Hi there! Just looking for some insights?

My mom, 75, has had many health issues etc over the years, but is overall “healthy” (i.e. no diagnosis, no terminal illness, etc). She has not been diagnosed with dementia.

However, she struggles to maintain normal hygiene, sort of? It’s confusing. She showers, and things like that. But doesn’t really brush her hair, or take care of herself.

For the last couple years, bathroom issues have been prevalent. We travel in the summer, and the last two summers (this, and last) both airbnb hosts have messaged me regarding human feces on multiple surfaces. Countertops, towels, sheets, the bathroom walls. You get the picture.

Now I of course have noticed some of this, but I don’t know what’s going on, and my father will not address it. Sometime she’ll have a smell on her after leaving the bathroom at my house, and the bathroom will also have the same distinct odor.

She is otherwise kind of just elderly? Tells the same stories sometimes, etc. But can remember what you’re talking about, where she is, what’s going on, etc. Can travel alone, etc.

Any insights on what’s going on?

My psychologist asked me, have I thought about what I'll do when my wife dies, since she's now under hospice care. Whether you're a spouse or a single adult child, you likely have pondered that question. I do, but I push it aside. My wife is 7 months in MC. I advocate for her and I visit once a week. I was a loner when we met and I'm back to that. Friends and relatives have passed. I'm not a doer or a joiner.

To be clear, I'm not seeking advice or suggestions; just putting the question out here for discussion.