r/dementia

Vent!
My dad has vascular dementia. My mom is pretty nonchalant with it and will only directly address it when it impacts her.
I moved in a few years ago to help with care. With me, I brought more than a hundred houseplants. They were all well cared for and beautiful. I loved propagating them and giving them as gifts.
As my dad’s needs started to rise, my attention had to be drawn from my plants. There are only so many hours in the day and I have an intense job, a needy cat, and I would like to leave the house once in awhile. You know, normal things.
My Hoya carnosa died this week. It went from a dozen thick green vines to…. One pale yellow sickly thing.
It’s one plant in many that I’ve neglected because my dad needs the attention more.
But instead, so cruelly, he turns to me today and says, “I don’t want anyone to look after me who can’t even keep a plant alive.”
It stung. I walked out of the house. I didn’t even take the knobs off the oven before I left, which is something I always do.
It’s been two hours, and now I’m sitting in my driveway, and I can see the front door is open. He doesn’t wander, he just has a weird thing about locking and locking doors, and my cat will open the doors. But that means my cat got out. My cat has a tracker. Not the end of the world. I can find him. The house will feel like the surface of the sun inside because we’re in central Florida and who knows how long the door was open.
Just problem. Problem. Problem.
And I just really want to go to the plant store and get a new Hoya, live in my own little world with my cat and plants, and be like, see! I can keep my plants alive! 😩

My dad had a stroke that took him from being 100% healthy, independent and capable to being bedbound with advanced vascular dementia in a matter of days.
I’m now trying to sort out his finances, and I honestly don’t know where to begin. My dad is unfortunately no longer mentally capable, and I am his POA.
The biggest problem is that I don’t even know where everything is. I don’t know which banks he had accounts with, where his investments are held, or what other accounts/assets he may have.
I have his wallet, so I can see the bank and credit cards he carried. I’ve been able to call the automated number to check his credit card balances and make the necessary payments. But he didn’t receive any paper bank, investment or credit card statements, so I assume everything was online.
I don’t have access to his Apple ID or his computer login, which means I can’t get into his email or any of his online accounts to figure out what he had.
For anyone who has been through something similar: how did you go about finding all of your parent’s bank accounts, investments and other financial assets when you didn’t already know where they were held? Is there some sort of process or search that can be done as POA?
I feel a little dumb even posting this because I’m a CPA and feel like I should be able to figure it out. But the last eight months have been consumed with taking care of my dad and dealing with much more immediate issues, so this is something I’ve unfortunately let slide.
Please be kind in your responses. This has been an incredibly difficult transition for our family.
We are in Ontario, Canada, so Canadian/Ontario-specific advice would be especially appreciated.

Just got a call from the MC phone. Mom is freaking out because everyone is telling her husband that his name is not his name. She is completely totally sure her memory care boyfriend is my father. She was so animated and driving the poor man so crazy they called me to distract her. Spent 1.5 hours trying to get her to change the subject. Apparently she has hidden the family pictures from herself so asking her to look at those didn't work. I read his obituary and thst didn't work. Eventually I said that she better not tell anyone that he's alive because they'd both go to jail or god forbid they put another body in that casket. That worked in the moment, we'll see how this goes.

My dad has vascular dementia and we are losing him day by day. It has been about 2 years since we realized he is not just forgetful but has a disease that is going to steal everything from him. Visits are devastatingly sad or maddening. I keep trying to find ways to entertain and connect with him but he just can't concentrate/understand - not books, puzzles, movies, conversation. One thing that has helped me is to write his obituary - I have been taking my time with it and asking the occasional questions of my mom and of him to fill in the blanks. I don't tell them why I'm asking. (He has very strong memories of certain events and I plan to include these in the obituary as they are clearly so essential to who he is that the memories live on despite his damaged brain). The process has really helped me to see him not as he is now or even what he was like just before dementia but who he was over the course of 88 years. These last years won't make it into the obituary. They do not define him even if they define his day to day life for this sad period of time. Loving someone with dementia forces a long, drawn out mourning period. Writing his obituary has helped me acknowledge that I have entered that period. When I feel sad about his situation - and ours - I pull up the obituary and read it a few times, tweak it. It always makes me smile and I feel proud of him. I recently added a picture that I thought captured him during his happiest years. It feels like a powerful way to push back on the horror of dementia.

Hoping someone of you can help me. My dad is elderly and has LBD. He’s not quite end of life but he is for sure late stage and sooner than later we think he’ll be in his last few weeks. When he is alone in his chair at his nursing home and has nothing stimulating to do- basically sitting doing nothing because he can’t and he cannot communicate very well- what is going through his mind. Is he thinking gee I’m here alone and where is my family. Is he lonely and wondering why he’s there? I spend every mid morning thru 2 pm with him every day and then another family member comes at 3 til bed time so he is always supported and very loved. But the time he was at 6am to eat at 8 am he sits alone. I was floored when I showed up today at 7am and saw him sitting alone with no busy mat or anything to fidget with. What goes through his mind when he’s left alone.no other residents were with him and cna was by herself sitting in a hallway far away. It broke my heart but I can’t be there from 6am to 2pm- what I am doing right now is killing me mentally and physically just being there 10-2.

I wish I understood better how much they know. With Lewy body he doesn’t lose his memory so much like other types. He doesn’t have great short term memory but he still knows me and still has memory somewhat. He can sometimes say short sentences and I know what he is saying but few and far between.

I mean is he ok not being stimulated? He can’t follow tv or read. He just likes things to fidget with. I’m working on making sure he gets things going forward.

My father is 90 years old, and is in a rehab at the moment. He had dementia before going to the rehab, but it's gotten really pronounced since he's been there. Many times, he's not even able to speak, thus we have to guess what's going on with him in those moments. It's a lot like "The baby is crying. What's wrong? Is he wet? Is he hungry?". This disease has robbed him of so much. He essentially has the mentality of a 1 year-old. He even needs a pacifier (which for him, takes the form of a beverage with a straw in it), which he has to nurse on all day long, even if he finished the drink long before. I'm not even sure why I'm posting this. I guess I just need to vent. It's been (and continues to be) quite a journey.

My mom is 84, lives at home with my sister. She adamantly refuses to admit that she has early stages of dementia which was diagnosed by neurologist a couple of years ago. The problem we are having with her is that she refuses basic hygiene. She will not bathe, wash her hair, brush her teeth, even wash her hands after going to the bathroom. She has trouble walking, but she refuses any walk aids because “those are for old people.” I handle all her financial affairs, but I live about an hour and a half away from her so I can’t really help with those basic things. My sister has been unsuccessful in getting her to do any of those things and she refuses any sort of caregiver. And the thought of going to an assisted living place is completely out of the question. She’s very difficult and I really don’t know at this point what I can do. Does anyone have any advice?

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.

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.

What have you found that removes urine stains? Mother is now bedfast and in transition. She is wearing diapers. Some urine got on her “lifter” - the thick, waterproof pad that we use to pull her up in bed. I pretreated it with laundry stain remover and washed it in the washing machine on hot water, along with some sheets and gowns. The stain was lightened but not removed. I did not put it in the dryer. Instead, I treated it again and scrubbed it with a brush and soaked it overnight in the washer with oxyclean and hot water. I ran it through the washer the next day. Still stained. I hung it on a clothesline to dry.

What should I try next?

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 😢.

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?

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 ❤️

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.

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?

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 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?

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.