r/dementia

My mom was diagnosed at around age 85, her twin sister a few years before, and their elder sister quite recently, at around 90. They did all start showing symptoms after living a sedentary lifestyle. (My mom lives with dad but they can’t stand each other so they don’t really talk. Mom stopped leaving home alone since pandemic.)

I am close to 50 years old now, female, going through perimenopause and starting to forget names and stuff. I still have a young child who is 10, and really want to stay mentally and physically healthy for her (and of course for myself).

I eat healthy, lead a rather healthy lifestyle. Am on HRT. But, I can’t help but worry all the time that I’ll be like my mom and her sisters. I know my daughter is also scared, seeing how my mom became like this.

Is there reason to worry? Anything else I can do to try to minimize chance of getting it in the future?

I’m looking for advice from others who have been through this with a loved one. My stepdad has dementia, and over the last year his symptoms have progressed significantly. He has become extremely paranoid and has developed fixed false beliefs. He frequently accuses my mom of lying, says he can’t believe anything she tells him, and often creates elaborate stories or scenarios that never happened. It’s heartbreaking and exhausting because no amount of reasoning or explaining seems to change his mind. Most of the time it’s impossible to redirect him once he’s fixated on something. Has anyone else experienced this? If so, how do you cope, and what has helped you handle these episodes while keeping everyone as calm as possible?

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.

My 81‑year‑old mother is currently in a skilled nursing facility. She has dementia and severe asthma. My brother visits her 1–2 days a week, and I visit every other Saturday due to distance.

Lately she’s been asking us to bring her an inhaler she can physically hold “just in case.” The SNF already administers a nebulizer every four hours when her breathing gets tight, and they do have her inhaler on standby. But she doesn’t feel safe unless she’s literally holding it. It’s become a fixation — part medical, part anxiety from the dementia.

The problem is that the facility prohibits any outside medications from being brought in, even if it’s the same prescription she already has. So we can’t give her one to keep at her bedside.

I’m planning to talk to the facility’s social services team to see if there’s a workaround — maybe a rapid-call device, a comfort-access plan, or even a non-medicated dummy inhaler she can hold for reassurance. I’m trying to find something that helps her feel safe without breaking rules or putting her at risk.

Has anyone dealt with this kind of anxiety around breathing or medication access in dementia? Any strategies that worked for your loved one? I’d really appreciate hearing what helped.

For this question, you have to suspend disbelief …. my decline will start out uneventful. But I know that’s very unlikely, so no need to reply and tell me it won’t.

Diagnosed but still working. I will resign my job when I get to the cusp of feeling that I can no longer adequately represent my clients (which may be sooner than when I would truly unable to work).
When I resign I won’t have health insurance. In early stages and in a perfect world are there any major medical expenses? I’ve had all the tests, scans, etc.

It’s good that I have the opportunity to plan for what’s to come, but it’s kind of f**ked up.

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.

Sorry if this has been already asked. Could you share the link for the answers if so?

My mom 87 who is at moderate stages of dementia when she was more lucid and hospitalized following a seizure asked to go full code.

As her health care proxy, I was against it but felt under pressure to agree bc my brother the POA was there. Now I am worrying during the next crisis (she had a stroke in May) that doctors / EMTs will take such measures that only increase her suffering. She does not want to suffer. I know we talked about this over the decades when she was well.

I also know she doesn’t want to leave us.

As her health care proxy can I override her MOLST and change it to DNR? Do I need her to sign off? I know she hates hospitals, conceptually wants to die at home, she hates needles. Why would I subject her to cracking her ribs with CPR and all the rest.

This keeps me up at night.

EDIT Documents from 2019 name me as her health care agent, but her MOLST from 2026
says that she is NOT DNR.

As far as I can tell, my authority on this matter is minimal??

The whole family (other than Mom) agrees that she shouldn't be living on her own. But my aunt and uncle (her brother and sister) who do most of the caring (since I'm out of state and an only child) have just kinda given up on her. She refuses any kind of help, won't even discuss moving to a home, won't discuss having a nursing aide, and won't even go to the doctor...they had been making appointments for her, but she kept canceling them at the last minute. To add to it, Mom is a very negative person, and the fact she's having delusions or confabulations or whatever's making her believe these crazy things about family members (much of which is unflattering) has just sort of made the rest of the family throw up their hands and say there's nothing they can do.

I wish I could just move down there and take over her care, but that's a terrible idea and everyone who I talk to agrees. I have had treatment resistant depression and anxiety for the past 15 or so years, and moving to a different state to take care of Mom would mean getting rid of my whole treatment team and finding a new therapist, psychiatrist, pcp, etc, while also caring for mom, which would be a high stress situation in itself. Me moving down there seems like it'd be a recipe to end up with me in crisis, too. But it feels like she's got nobody else in the world who's willing to fight for her right now.

Like, this is a woman who gets lost in her own neighborhood, doesn't know where shopping centers she's lived down the street from for decades are, couldn't figure out her age last time she had a birthday (she thought that after 78 was 88), compulsively gets rid of stuff in her house for no reason, gets bizarre ideas on her head about family members (often involving them hating her or wanting nothing to do with her), etc, etc...having her live by herself with minimal assistance from relatives seems like a recipe for disaster, and everyone else agrees, but they seem to see no way out except to let disaster happen. I want to help her, but I have no idea what to do...I don't feel like I can just tell my aunt and uncle to start treating her less like an adult, to hide the appointments from her until the last minute or to claim they're just visiting Betty to have her move into the home she's pretty clearly going to move into sooner or later. The family's miserable, I'm miserable, Mom's miserable...is there any way out? There's part of me that secretly hopes she just gets into a car accident and dies, just so she's spared the long, miserable end of life without her primary support (my dad, who died a couple of years ago). (Oh yeah, did I mention she's still driving?)

When Hubby and I got married, he told me he would prefer if I stayed home and let him provide for us, although he would understand if I wanted to work, and it was my choice. I tried the SAHM thing, but it drove me nuts, so after a few years I found a job I loved. I worked full time for about 20 years, then Hubby was diagnosed with vascular dementia and the neurologist was worried about his safety being home alone all day. We went through the intake process to get a home health aide for him, but the first time the aide showed up at the door Hubby, who is very introverted, threw him out. Getting another home health aide was out of the question so I left my job and found a part time one where I only work about four hours a day, three or four times a week.

The job is a back office job and is pretty mundane, but I like my coworkers, and it gets me out of the house and makes me feel useful. I make sure Hubby is up and has breakfast and morning meds before I leave, and he makes his own lunch when I am gone. I make dinner and give him his evening meds when I get home. This has worked well for awhile, but his dementia is progressing. Now when I come home, I often find scorched food left in the pots from when he made lunch, spills on the counter and floor, and dirty dishes all over the house. He is not a wanderer, so I am not worried about him leaving the house and getting lost, and he is not a fall risk, although he is moving around a lot slower.

I am feeling pretty stressed right now because on the one hand, I feel like hubby needs me at home, but on the other hand I need to be around other people and feel productive and useful. He needs me to quit my job, but working outside of the house is better for my mental health. Financially we'd be OK if I stopped working, as Hubby's retirement and SSA cover the bills. (I'd have to cut way down on my Amazon purchases, though. 😄)

Is it selfish to want to keep working? What other options do I have, though?

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.

So, my grandmother was trying to "light up the oven." She used a ton of paper plates to try and light the oven by placing them over the stove burners and it got out of hand... Thank goodness my mom, her main caregiver, was home at the time. She called the fire department, and they unhooked the gas line to the stove.

There's no reason for my grandmother to even be trying to cook, my mom gets food delivered, and my mom cooks too. Anyway, I told my mother if this wasn't the sign to get an aide or find a care home for her, idk what else could possibly convince her. She almost burned down the house! What if she hadn't been there?

Idk what else to say to her. She is retired, has all the time in the world to find a caretaker or a care home, but just won't bite the bullet. I know it's not an easy decision, it's the last thing anyone wants to do, but it would be best for both of them, mentally and physically.

I helped my mom make the decision to move from full code to DNR and get the paperwork in place. She lives in skilled nursing long term care and I was surprised her status was full code, since her advanced directive turns down interventions. I’m glad we got it sorted out, it’s just a pain that this was never part of her care plan meetings, which they schedule to be only 15 minutes. I noticed her full code status listed on paperwork they printed out for a doctor’s appointment.

I know there are reasons for it but it’s just kind of maddening that full code is the default for an 80 year old person with a clear advanced directive who has dementia and is very frail and very unlikely to meaningfully survive CPR. What are we doing here?

Luckily she has passed to a different stage of the Alzheimers now, but for a while my grandmother would call me almost every day, saying she wanted to be DNR'd and she wished for it all to be over. She wouldnt call any of the other grandchildren with this, nor would she be honest about it to her sons(my dad and uncle, who I kept in the loop). The doc did put in the DNR in her file after multiple meetings with psychs and my dad, but I just had to listen to her day in, day out. Saying she wanted to die. Sometimes I would just... let the phone ring. I couldn't take it anymore. I feel guilty about that.

It's now gone to her just calling me and telling me the same story 5 times, which is ok. I will gladly listen to her talk about her tandem bike ride with one of the volunteers 5 times in a row. I love her, and I love the volunteers for being there when I can't. (I am chronically ill myself.)

Just... had to vent that. I hope its allowed.

ETA: I typed this while crying and totally messed up the title.

My mom passed peacefully last night. Seven years after her diagnosis. I’m so happy she is finally done with this horrible desease. But I miss her so much. We made it to the finish mom. Jesus called her home.