r/DementiaHelp

Toward the middle of my grandma's dementia, my mom was always looking for ways to keep her engaged, something to do during the day that wasn't just TV. Puzzles, old photos, simple games. Some days were better than others.

I always wondered if there was a way to make that easier, or even track whether the good days and bad days followed a pattern.

For those of you in this now, do you do any kind of activities or brain games with your loved one? Does anything seem to help, even a little? And do you notice patterns in their good vs. bad days that you wish you could track?

So, I’ve long been diagnosed with ADHD. Never hyperactive, but severely attention deficit. I would never remember your name, I lose my everything constantly, I talk over people, I’m always distracted, and I can’t hold a thought for more than a second. I’d venture to say it’s a foundation for everything I am. I’ve taken Adderall and other stimulant medications, but I’m not a fan, so I remain unmedicated. To get back to the losing and forgetting everything constantly, I forget absolutely everything. I forget I left the stove on, I forget where I put my keys, my wallet, which pile of mail it’s important, what I ate yesterday, you name it, I forget it. Recently though, I’ve been forgetting things that I feel like I should remember. Yesterday I went to pick up a curbside target order, and as the attendant walked up to my window, I couldn’t remember how to open it. I’ve owned this vehicle for 7 years, but as I looked at the controls, I did not know how to use them. For a good 30 seconds I stared at them in confusion before I suddenly remembered which button to push. Later when making dinner, I couldn’t remember how to use the can opener. At this point I’m scared for my brain. Is this ADHD or am I experiencing dementia? I’m only 45 years old. Has anyone experienced something similar and it was just their ADHD? I’ve never had this severity of forgetfulness and it’s freaking me out. Help!

Firstly, I just needed somewhere to get this off my mind/ vent about because there is some things I am struggling to deal with my bf’s mom and her Alzheimers/ Dementia. In the text I wrote that there’s been no final diagnosis yet but all the doctors they’ve been to have told my bf that his mom obviously has some form of dementia, most likely Alzheimers. It’s taken until now because my bf is the only one who takes care of his mom, the rest of the family doesn’t really want to get themselves involved.

Hi, so my boyfriends mother has Alzheimers. It’s been quite obvious for at least four years. My bf and I started dating 2 years ago and last year even his ex told me that it was obvious that his mom has Alzheimers but no one was willing to admit it/ confront themselves with it. My bf has been to doctors with her and until they do a brain scan/ MRI, the doctor can’t give her a certain diagnosis but it is clear she has it. She doesn’t want to admit it though/ denies it, which is often the case for people with Alzheimers. It’s at the stage where, at least in my opinion, she’s not capable of living by herself anymore. She doesn’t cook, does’t eat regularly and can’t properly buy groceries for herself. She doesn’t shower, even though she tells us she does, and she can’t dress herself properly anymore. She forgets to put on pieces of clothes or puts them on wrong or just generally doesn’t know how to put them on.

My bf is in college, he’s just starting out in his adult life and he is pretty much the only one who takes care of his mom. I help where I can and am there to support him with everything. Before I start venting, we are currently trying to get her assistance, eg someone who comes to check in on her daily, brings her food etc. We live about 20min away from her.

Recently it’s been getting more and more frustrating because I know it’s not her fault for needing help in her daily life with things that seem so easy to others but I can’t help but feel annoyed sometimes. When I or my bf receive phone calls late at night because her TV is too loud and she doesn’t know how to turn the volume down I can’t help but feel frustrated. Everyday, the phone calls and messages don’t stop. I feel bad for not answering every time but it’s just too much. And my bf has to take care of everything for her. Her doctors appointments, her paperwork, just her day to day life basically and it drains him. He doesn’t have any time for himself with college, work and his mom.

I do my best with always being patient and gentle with her. If I’m frustrated/ annoyed I don’t show it. Not to his mom and not to my bf either because I know that he has enough that burdens him already and I just want to be there to support him and be there for him. But right now I just need an outlet where I can vent about this because I’ve never talked about this with anyone.

One thought that I’ve been having I feel really bad for because it is unfair towards his mom but I can’t help but wonder why she would put him through this. Every time we see her she always says she knows she can be annoying and she doesn’t want to bother us all the time but she does it anyway. She refuses assisted living homes because she doesn’t want to be “put away with all the old people” and “she’s not ill, she’s fine. She can manage on her own and doesn’t need any help” which I understand, these homes can be really depressing but the one she could go to is really good and some of her friends live there - most of the caretakers there are her friends or acquaintances. And she always complains about her apartment, how it’s too much for her and how she doesn’t like it there. (Then she talks about wanting to live with us but sorry, no way. My bf doesn’t want that and i don’t either. Plus it’s just not possible, we’re both in college and in our early twenties.) But when she says she can manage on her own in one moment but the next she needs help because she says she lost her wallet/ phone everything but they were lying on the kitchen table the whole time I just can’t help but be annoyed. She know’s she’s burdening her son but she needs him to take care of her all the time. I know it’s so unfair because it’s the illness, not her but it’s so difficult to understand sometimes. It’s just so difficult to understand how this illness actually affects a persons brain, how they think and act. Things that are so normal and easy turn into huge problems that she cries about and i feel so sorry for her because sometimes she is so confused and so anxious and I know that she’s struggling with it all too.

And the one question I have in my mind that I think is really unfair is, why does she refuse to go to an assisted living care facility when she knows that she is a burden to everyone around her? She knows she can’t manage on her own. She says so herself. But then she doesn’t want to admit that she has Alzheimers and talks about not needing help. I know that people with Alzheimers often feel anxious and unsure about mundane things so I get why she calls us all the time but then she goes on saying how she’s so sorry to bother us but then she stresses about some imaginary things and needs us to come over and help her.

I know it’s not her, it’s the Alzheimers but how can a mother burden her son with having to completely take care of her every need. Of course, he does it no questions asked that’s his mom. I would do the same for mine but wouldn’t a mother not want to burden her child with having to take care of her for the rest of her life? Or atleast not to the extent to which he has to care for her now. Wouldn’t she not refuse assisted living so hard? She knows we have to take care of her all the time so why? I feel bad for even writing this because it is unfair but I can’t help but ask myself this and thinking that it’s so egoistical of her. I’m honestly ashamed of thinking it because I know she does none of it on purpose. She didn’t choose to get Alzheimers, her deteriorating memory, her confusion and her dependency are not something she chose for herself. I don’t know how she was before the symptoms started, I only know her how she is and sometimes I find it really hard not to be annoyed.
I even find it hard to like her at times because I feel like I’m not getting to know her as my (potential future-) mother-in-law, I’m getting to know her illness. I’m learning how to care for her, how to dress her when I take her shopping because I have to tell her she has to get undressed first before trying clothes on, then I have to help her with getting dressed because otherwise she would just stand there, not knowing what to do. I have to learn to clean after her when she uses a public toilet because she doesn’t know how to use them anymore and I can’t just leave the floor all wet…. I din’t tell my bf these things because I feel like this would just hurt him. Knowing that his mom needs help with things like going to the toilet is just not something I want him to have to deal with. It’s heartbreaking enough as it is. Though I think he knows either way, when we’re at her apartment he doesn’t want me going into the bathroom but he doesn’t have to know that I’ve had to clean up after her. I don’t tell her either that I clean up after her because I think she doesn’t know and I want to spare her the embarrassment.

If there’s even anyone reading this, I’m sorry if my english isn’t perfect, it’s not my first language and I’m writing this just to get it off my chest without paying close attention to grammar or even if my sentences make sense.

Hello, my mom is 81 and has been suffering from mild cognitive decline over the past few years.  Even before she had memory issues, she only went to the doctor when she was sick, refused to get a mammo, colonoscopy, flu shots, etc.   I coaxed her into going for a check-up with her PCP in December.  I called the office ahead time to let them know of our concerns.  The doctor said she has “significant memory loss” and referred her to a neurologist.  Mom does not believe there is anything wrong and the doctor is crazy! 

She lives with my Dad.  We had to move them in March out of necessity to a more affordable apartment.  She has declined significantly since the move.   Now she refuses to bathe or change her clothes.  Mom was an exceedingly difficult person to deal with even before her memory issues.  Lifelong undiagnosed chronic anxiety, and I suspect a non-specific personality disorder. 

I’ve consulted with everyone and there just doesn’t seem to be any answers.   Her doctor said you can’t force her to go to the doctor or take medicine.   I set up an appointment with local senior care elder services and had her meet with a care manger.  She is refusing all help and doesn’t think there is anything wrong.  Elder services said she has a right to refuse help.  Alzheimer’s association gave good referrals which don’t help if she doesn’t want help.

 I feel so helpless.  My Dad at 85 has no patience and is struggling to take care of her.  She is restless and wants to be outside all the time  Fortunately, she lives in an elderly (independent living) complex with nice grounds where she can sit on a bench and socialize with others who keep an eye on her. 

Sad to say, but I feel like I am waiting for her to fall or get lost before she gets help and those are difficult thoughts to live with.  I live an hour away from her and work full-time, so I can’t help as much as I would like to.  She is low-income and eligible for so much help but will not accept it.  Any advice?

No official diagnosis but her cognitive and physical abilities have been declining steadily for a few years. Still the doctors don't give an official diagnosis. She's extremely forgetful and sometimes does stuff that's a tad weird but nothing extreme.

She takes the same route to a neighbouring town to do her groceries. Our town has multiple, but she goes there because she used live there. She's still able to drive a car (although she shouldn't) but if there is a road block she will just get out of the car and call my father to come save her.

This is where my problem lies. The lack of diagnosis makes me feel like she's just not trying anymore. She doesn't take the effort to think. It feels like she has given up. She sleeps all day as well, doesn't go out or hang out with friends, barely eats. It feels more like a depression.

Is this dementia? If so, is the passivity towards life (i.e. her giving up) a common symptom? What do we have to do to get a diagnosis?

I am already experiencing cognitive problems and depression. Has anyone had success gaining some cognitive processing?

I am 31 years old. About 9 months ago I started noticing that my memory seemed to be getting worse, specifically in regards to remembering words. I would suddenly find it a regular occurrence where I couldn't remember a specific word for something, like it was on the tip of my tongue, but I couldn't remember. While it used to only happen every once in a while now it was happening several times a day, enough for me to notice that my memory had gotten worse. While this was concerning, what was more concerning was after some months later when I noticed I started having trouble speaking occasionally. I would find myself more often stumbling over my words, sometimes I would have difficulty even pronouncing normal everyday words. This again was concerning until about a month ago I noticed my reading ability seemed impacted too. I was starting to incorrectly read things, like reading sentences a bit out of order, frequently misreading the words in a sentence and having to reread to correct myself, and I've noticed that I misspell words more frequently than I used to. Around the same time I started to trip up in my speech more often too, and its now commonplace for me to accidentally combine words when speaking (for example saying "cleaking clearly" instead of saying "speaking clearly"). Eventually I got concerned enough to mention it to my doctor who ordered a brain MRI and referred me to a neurologist. I have done the MRI and did see the neurologist, they had said that the MRI looked normal and hes ordered a few tests for me in the meantime. That said I'm still worried about my condition because I can feel that theres something wrong with me thats seemingly getting worse but I have no idea what it could be. I am posting here because I am worried about the possibility of dementia and I was wondering if anyone here with experience could give insight into whether or not I might have it. Once again I have gotten an MRI that came back normal and I'm currently seeing a neurologist, but I wanted to hear what people on here think while I wait.

I take 25mg of hydrochlorothiazide, 80mg of valsartan once a day and 25mg of metoprolol twice a day. I also take 1.25mg of vitamin D2 once a week. I have hypertension and high blood pressure and high heart rate, which is what the medicine is for. I do not drink or smoke or use recreational drugs in any capacity. I've also been out of work for almost a year now.

I should add, another (possibly) related incident that happened about 2 weeks ago was is that I noticed that my eyesight was blurrier than normal, I wrote this off at first until a week ago where I went to the hospital after I seemed to have lost a bunch of vision in one eye after it got really blurry all of a sudden, I was sent home not long after when they determined that nothing was physically wrong with my eye and my vitals were normal. My eye had recovered since then but its still blurry and my eyesight isn't what it was before.

I am sorry if this isn't the appropriate place to ask.

My Mom has very clear dementia (she's just started having hallucinations, delusions, etc.). I have no idea where to begin. I just found out that she hasn't seen her doctor since the early days of the pandemic and that she lost her Medicare card (in addition to every other sort of health stuff she might need). For the past few days, I've had her planted in front of the tv while I try to figure out what to do next. I'm just looking for some guidance, maybe some kind of org. I can call to get point in a direction.

(ETA) I've moved back in with her so I can both take care of her and deal with legal stuff, etc. I'm in York County. Even a reputable adult day care would be an amazing start.

TW: Elder abuse, financial exploitation

I'm sorry this is so long. I'm just so lost.

My father-in-law has dementia. Against my wishes, he was moved into memory care last year. I researched the facility before he was moved and found they were being sued for overcharging, understaffing, and administering medications to patients and doctoring records after the fact. I brought all of this to the attention of the family (as did my SO), but they moved him in anyway. My mother-in-law doesn't want him back in the home because she doesn't want to change her life to accommodate his needs. My SO and I can't take him in and the other kids sided with Mom on the memory care move.

He's fallen 4 times since being there (he uses a walker but forgets to use it and staff doesn't make him). He's lost shoes, watches, glasses, hearing aids, clothes... They are chronically understaffed and never have enough people on the floor. They've changed directors 3 times in the 8 months he's been there. His arms are covered in bruises. They claim he falls and my mother-in-law makes excuses saying he bruises easily. We have a camera in his room but there are none in the common areas. The facility has overcharged for his care from day one with promises of fixing it, but it still hasn't changed. The facility hasn't had a dedicated wellness director (on staff nurse) since Thanksgiving. He "collapsed" in May and was hospitalized for two days. I learned today that the facility illegally changed his medication and care plan without getting a signature from my mother-in-law (his PoA) as required by their own contract and state law. They have a podiatrist who's supposed to come cut his nails, but I went yesterday and two of his toenails are rotting off, one was so long it was curling into the flesh of his toe, and his feet were so filthy I gagged when taking off his socks. I gave him a pedicure and washed his feet with antibacterial soap. I've brought all of this up multiple times. Neither me nor my SO have any say in the situation.

I'm a mental health professional and mandatory reporter in my state. Last week, the video surveillance in his room caught a caregiver verbally abusing him, man-handling him, and picking him up and dropping him forcefully onto his bed. This caregiver is easily 6'6, 350lbs. My father-in-law is 5'10 and weighs 136lbs. My SO and I were livid. We immediately confronted the director and were told the caregiver wouldn't be back. We looked my father-in-law over, took pictures, and were told the caregiver would be reported. The rest of the family said. "We'll file a report next week." By law, I have 72 hours to report an event. I'm not losing my license for these assholes, so my SO and I called the police and filed a report with the state agency. My mother-in-law had the audacity to be angry with me for "stepping in and calling the police when that was her job". I explained my situation and encouraged everyone else to file their own reports with the state. Today, we had a family meeting. No one else had filed a report. They all said, "Well, you did so why would we?" My SO and I asked to set up a schedule for watching the cameras so there's always an eye on Dad. It was meet with a lukewarm response and no surveillance schedule was set.

We've been going back through the video to get evidence of other times this caregiver has been rough with my father-in-law. I'm submitting all of this information to the police and the proper agencies. I'm just so beside myself that no one else cares. What the fuck is wrong with these people? I'm so sick of their terrible attitudes, but I'm so helpless in this situation. My SO and I have been totally shut out of any care decisions. My SO is upset, but he doesn't know what to do either. I'm not sure what I'm asking for help with. Maybe reassurance that I'm not overreacting? That I'm not crazy for thinking we should sue this place off the map? I brought up legal action during the family meeting but was immediately shot down.

New to this group and wanted to share what I have learned from taking care of my mom and oldest brother until their deaths from dementia and to now, having a middle brother with it and finding out I am positive for early early Alzheimer’s disease based on an MRI showing Beta-amyloid. Unlike my family I have the option to do something positive and met with a Neurologist. I was always told there is nothing that can be done, it's hereditary so it will run it's course, but that isn't necessarily always the case. I have started an IV Infusion program with Leqembi which is a prescription medicine used to treat people with early Alzheimer’s disease, which includes mild cognitive impairment (MCI) or mild dementia stage of disease. So far no side effects. According to what I have read it usually takes about 3 months to start seeing a reduction in Beta-amyloid. I guess we will see.

I’m a dementia nurse and I’m interested in understanding where family carers feel the biggest gaps in support are.

One thing I’ve noticed is that families are often left trying to navigate behaviours, hospital admissions, future planning, LPAs, communication difficulties and crisis situations largely on their own.

Looking back, what support do you wish you’d had earlier in your dementia journey?

What information would have made the biggest difference?

And if you could have sat down with an experienced dementia nurse for 1–2 hours to discuss anything, what would you have wanted help with?

I’m genuinely interested in learning from carers’ experiences.

Hi everyone,

I'm a neuroscience student and freelance writer, and I'm currently reporting a feature for Business Insider about a part of dementia caregiving that often goes unspoken: how adult children gradually become caretakers not just of a parent's daily needs, but of their sense of reality.

I'm interested in speaking with adults who have cared for a parent with dementia or significant memory loss. Some experiences I'm hoping to learn more about include:

• Repeating conversations or answering the same questions many times a day
• Deciding when to correct a false memory and when to let it stand
• Taking over finances, driving decisions, medications, or appointments
• Balancing caregiving with work, school, parenting, or other responsibilities
• The emotional experience of watching a parent forget important memories or aspects of your relationship
• Feeling as though you've become an interpreter between your parent and the world around them

The article will explore both the emotional and practical realities of caregiving, including the growing burden placed on families as long-term care becomes increasingly expensive and difficult to access.

Interviews would be really short and conducted by phone, Zoom, or email, depending on your preference. Business Insider is also interested in including family photos if participants are comfortable sharing them, though that's not required for an initial conversation.

If you're willing to speak or would like more information, please comment below or send me a direct message. You can also reach me at jpgendin@bu.edu.

I have a family member mid 60s who lives alone, several hours away in the UK that seems to be displaying some symptoms.

• They were speaking aloud and when questioned told another family member present that they were talking to the lady behind them. No one was there.
• They hinted on the phone that they believe others may have tried to poison them.
• Subsequently, I tried to contact them but they’d never answer. Other family members said they also couldn’t contact them and we discovered they had not been on any social media for several weeks.
• As a result we immediately sent authorities to do a check in at their house and they were there. Claimed they’d lost their phone and were fine.

I’m planning to make a trip to see what is going on but would like some advice from those with experience.

Many things spring to mind.

-What if they don’t answer the door to me?

-How do you tell them your suspicions?

-How do you get them to go for a diagnosis? What if they refuse?

-Is it better or worse to go visit alone?

-What would their future look like? I assume they‘d need some assisted living and have to agree to that.

Any advice welcome

Thanks

I have a close relative who is probably early/mid stages dementia. What can I be doing now to make things easier for them later? I’m trying to pay more attention to how they like their food and other things but I’m not sure how much that’ll help in the end :/ just want to lessen the confusion and uncomfortability if at all possible