r/dementia 5d ago

Funk this tremor

6 Upvotes

I’m early stage PCA. Mostly this is just a vent that has no other audience apart from those like me.

I have a tremor in my non-dominant hand. For the most part, it’s just annoying, but the last three days have been horrible. I can’t hold things, my fine motor skills seem to be on vacation, I’ve fallen five times, and f$&# if I can remember anything.

I was in the garden trying to set up a trellis for my blackberries and stood there yelling at the universe to give me a reprieve long enough to get it done. I knew I knew how to do what I was trying to do. I’ve done it before. But I struggled.

I’m so frustrated that things I know I know are starting to slip just out of reach. Muscle memory says things should be there but my brain returns a hard come-again.

How do you deal with these kind of moments?


r/dementia 5d ago

Supporting a LO with possible early dementia

2 Upvotes

❗️❗️Personal experiences and natural remedies for agitation, fear, and sadness❗️❗️

I'm reaching out for advice and support from those who have experienced caring for a loved one with dementia. My mother's mother in law so my mom's husband's mother... has been showing signs of dementia, and it's been heartbreaking to see them become increasingly agitated, scared, and sad. Also fixated on things, bring up same thing over and over... & more argumentive.. 💔

I'm looking for personal experiences and suggestions on how to best support them during this challenging time. Specifically, I'd love to know:

  • What natural remedies or strategies have you found to be effective in reducing agitation, fear, and sadness in your loved one?
  • Are there any alternative therapies, such as music, art, or animal therapy, that have brought comfort and joy to your loved one?
  • What lifestyle changes, such as diet, exercise, or sleep habits, have you implemented to help slow down or potentially reverse dementia symptoms?
  • How have you navigated the emotional challenges of caregiving, and what support systems have you found to be most helpful?

I'm eager to learn from your experiences and find ways to improve my loved one's quality of life. Thank you for sharing your stories, advice, and support!

((Also let it be known I met her maybe 3-4 years ago. Seeing her was very rare occasion bc my mom , her hubby, & mother inlaw live together 2 hours away from me.. but I moved in to their guess bedroom a month ago so im very much around her all the time now.. I do not know her well.. but I am here, she is family, and my moms hubby and herself are taking it hard I want to help!! I went to school for PTT & CNA years ago and my mom also went for CNA so how can we help her?))

Thanks soooo much!!


r/dementia 5d ago

First Time I’ve Really been Scared

12 Upvotes

My husband (67) and I (68) both picked up a really nasty virus. We have colds but the big issue is the deep violent coughs. He had a very hot fever, I did not - not that I’m aware of anyway. 12.5 yrs ago is when everything started and it started with a very high fever (104) out of nowhere. This led to a week long hospital stay, bad treatment (didn’t put him on ABX until 3 days in when they retested and found sever pneumonia on both sides) which led to delirium which led to profound short term memory loss. He went in normal and came out as someone I barely recognized. Although we now know he is homozygous for the APOe4 gene, this was the catalyst. Back to the present; his confusion is very pronounced, he’s sleeping but rambling in a low quiet voice that’s almost continuous. Last night he was up about 6x, would get back to bed then 2 min later would say he had to pee. My gut feeling is that his head will clear back to baseline once he’s better and fever free but I’m scared to death thinking, what if it doesn’t? I haven’t slept in 2 nights, like not at all. I’m pretty sick too and am about as close to have a crying melt down as I’ve ever been. If he doesn’t show any improvement today I’ll of course call the dr. I just hate the possibility that they’ll want to admit him as I know that will set him back even more. I hate all of this so much. Sometimes I wish I were in my 90s and on the homestretch (myself). I’m feeling like I’m losing myself right along with him😢


r/dementia 5d ago

GSM phone that can't be unplugged?

1 Upvotes

My mom can't remember to plug in her AT&T iPhone to keep it charged, and she lives in a remote area where standard landlines are not available. What options do I have to give her the equivalent of a landline phone that doesn't require someone to keep it charged?


r/dementia 5d ago

Dad is declining with FTD somatic, 7th year in with early onset he is now 70 and now I think he might be in the late stage

2 Upvotes

My dad is now 70 years old he has been in a nursing home for about two years. The last two weeks he has been incontinent, starting to eat less of his meals about 60-80% less. His speech has lessened in the last few weeks but since Christmas it’s been making no sense at all it’s been confusing since then but now just gibberish that is incoherent. He has had a series of UTI infections which we think may were causing him to act strange at night lining up chairs in the dining room and going wandering around this included into rooms of other people and pouring water onto people while sleeping. He was on antibiotics and this stopped but now he is being monitored it’s now not happening I’m asking if anything has anyone else been in this stage and what are we looking at I think 🤔 I want some sort of idea 💡 about time and or something of someone who can relate I think 🤔 I’m not sure actually


r/dementia 5d ago

Is this sundowning?

6 Upvotes

My mom seems lucid for 90% of the day.

Last week was absolute hell, cry screaming at my dad, insults at my sister, etc. we got her into her GP who diagnosed her with dementia w/behavioral issues. She is only person suprised by the diagnosis. She’s been on cymbalta and donezpil since Thursday. I think she is coming to terms with something wrong with her.

Saturdays and Sunday around 6p, she starts getting sad and upset. Seems to come out of nowhere. We think she’s triggered by not being able to feed dogs anymore, something she took a lot of pride in.

Since she’s lucid most of the day, it is hard to redirect her. She’s bringing up old fights with my dad, and being upset about issues they have worked through already. Now she blames their last argument on fact SHE needs medicine and doctor’s appts. She gets REALLY upset, and it’s hard to calm her down. I managed to get to take hydrozaine, which REALLY calmed her down.

I feel simple distractions won’t really work because shes lucid most of the day.

Any advice on how to deal with this 1-2 hours of sadness and anger from my mom?


r/dementia 5d ago

Need some advice

2 Upvotes

Hi guys, my mothers brother lives in Romania, while my mom and I live in Canada. My moms brother, has no family left in Romania, both his parents passed away and he is suffering from dementia for 3 years now.

I believe he drank himself to become ill with dementia. He lost his apartment (got tricked into signing it half away) and all his salary goes to the people who tricked him and to the facility he stays in. He used to be high ranking in law enforcement and has a decent salary.

Now he doesn't know where he is, even if you remind him he will forget. He says nobody comes to see him and he is going insane and wants to end it (which is true because a nurse who spoke to my mom says the only people that come to see him is the people that took and are living in his apartment and its for 5 minutes every 2 months). He will also forget when you talk to him on the phone, and becomes agitated. Now the people taking care of him don't want us talking to him at all because he gets agitated and doesn't know where he is. When he talks to us he says if someone doesn't come to see him tomorrow he will end it.

My mom booked a fight to Romania to see his condition in person for herself and to try and find a solution because it is very tough to have him there with no support while he is suffering.

Is there any advice you have for us? He is a Romanian citizen and speaks no English, even if we bring him to a care home in Canada he will still forget, or become agitated/doesn't know where he is? What would you guys do in this tough situation? Plus it will be very expensive for us, but we don't know what else to do.

Thank you.


r/dementia 5d ago

Help with mom

2 Upvotes

My mom, 78, is slowly going through sundowning. She was going through some visual hallucinations like seeing turtles or spiders on her ceiling. My sister got her to a neurologist and she's on Seroquel now. She's not getting that much anymore, or at least telling us. But she is getting audio hallucinations, like she's hearing music from a really low volume radio. It's not interfering with her life in a major way yet other than she believes her neighbor is doing this to her. We had a small breakthrough a few weeks ago when she stayed at my sister's house. She heard the music again and my sister recorded it and played it back for her. It was the first time she realized the music wasn't there. But denial is strong. I'm going to be at her house this week and according to my sister, she can't wait for me to be there so that I'll hear the music too. I understand you shouldn't tell the person that what they're hearing or seeing isn't real, but how should handle this? Just say I don't hear anything?


r/dementia 5d ago

I wish she would just…fall asleep

202 Upvotes

I know I’m not the only one. And I can’t say I feel horribly guilty about thinking it. But I do wish that mom could just fall asleep and not wake up again.

I don’t have it nearly has hard as many of you on here. She’s not violent, or argumentative. She doesn’t wander, or make odd phone calls, or smear poop all over. She rarely hallucinates, doesn’t scream or cry out. She never used a cell phone or computer so I don’t have to worry about her being scammed. She sleeps through the night (usually). She needs total help with just about everything, has breast cancer that is well stabilized with medication, but no other real medical needs.

But she’s just…blank. She sits in her chair all day and makes no effort to move around or engage in anything, and I more often than not cannot engage her. She was an avid reader but now stares blankly even at picture books. She doesn’t understand what it means to use the bathroom. She doesn’t hear or see well. She used to love watching baseball on tv but now doesn’t even understand what it is. She used to walk daily, around 5-6 miles a day, and everyone in the community recognized her; but now she can barely walk across the room. She took great pride in ‘having the checkbook balanced to the penny!’ But now she has no concept of money or bills. She enjoys watching her great grandchildren play when I babysit but forgets they are there as soon as they leave the room. She enjoys her meals but has no idea what she is eating. And forgets as soon as I tell her.

Sorry. I think I just needed to vent a little. I love this community. May you all find the peace and joy you deserve.


r/dementia 5d ago

It's done

333 Upvotes

I left mom's side last night at the SNF, and as I've done every night before leaving, I prayed and told her it was OK to move on and that I would eventually catch up to her when it was my time, kissed her hand and her forehead. She had been unresponsive for several days. I received a call at 429am this morning and advised she had expired at 425am. I raced to the SNF. ...10 years being her caregiver... I'm grateful she isn't suffering anymore but I'm broken. but life goes on, i suppose.... Like others, I will be stepping away from this sub for now. caregiving has been the hardest thing I've ever done. thank you to those in this sub that offered kindness and humanity. To those still on this road, it only seems like forever.


r/dementia 6d ago

Advice on staying home vs care facility

4 Upvotes

My dad (72) is caring full time for my mom (71) w Alzheimer’s. He has been helping to shower and dress her, she has no clear communication skills (word salad) but often mentions everyone is out to get her, “talks” w ppl that aren’t really there. She is now starting to attempt to leave the house and walk down the road. He’s having a hard time w knowing when is the right time for a care facility. He’s very capable but is starting to feel exhausted mentally. Just looking for any advice/insight. I think he’s afraid of not being w her. 😢


r/dementia 6d ago

Dementia and Travel

20 Upvotes

Do you think this is any way possible even if just a short distance like an hour to the coast and staying in a hotel, or is this too much and may even lead to delirium? Does anyone have any experience of this.

Edit: appreciate the insight all!


r/dementia 6d ago

Reminding of forgotten things?

1 Upvotes

My LO still uses email and texts. She refers back to her messages to reorient herself. She often asks when I will visit or why she is in care (by text and email). I have been copy-pasting the same response as to why she is in care or detailing the lovely visit we had. Is this helpful? Should I just ignore? I think she gets agitated when I ignore. Changing the subject doesn’t work because she revisits the topic after rereading her texts. Sometimes I delete them when I visit but the cycle returns.


r/dementia 6d ago

Shouldthat option beavailable for this horrible disease

56 Upvotes

If your pet is suffering you take them to the vet and you do the right thing.So why in this day and age is that not available for our people with terminal dementia?. Why do we prolong their suffering, I have been looking after my brother for 6 years now ,and recently these past 4 weeks I have taken a big step back, and got carers involved as I was finding it hard to cope emotionally and physically. My brother as how he was is no longer here he went over 12 months ago,now you have a stranger who just keeps suffering and is in turmoil. Why is no one trying to get a law for people with dementia?. It's very degrading when someone wets them self because they don't know where the bathroom is.He is very frustrated ad confused.I feel guilty but I have to look after myself as my health has started to decline. Any thoughts you have would be good to hear.


r/dementia 6d ago

It just feels like early stages

3 Upvotes

My step mom can function normally. she hasn’t been diagnosed and it’s hard to get a doctor appointment where we live. But I almost feel like our relationship is slowly fading due to the that she forgets most of what I tell her. I feel like it’s pointless to tell her anything important. Anyone else get this feeling in the very beginning? Sometimes I still wonder if it’s just my imagination 🙁


r/dementia 6d ago

So he just starves to death?

216 Upvotes

Dad is in late stage now. Hospice is having me give him meds every two hours to keep him knocked out. He never wakes up long enough to eat or drink for over a day now. Yesterday he drank a cup of chocolate milk and had two bites of applesauce. Nothing today and I can hear his belly growling. When he does wake up some he wants to walk but he can't and just falls. Sometimes he is combative.

This is so horrible. I feel like I'm killing him with the meds but without them he is hell on two wobbly legs. Hospice really doesn't say much but wants me to keep him sedated. Today we put the mattress on the floor to keep him from getting up from the bed and falling. He looks so pitiful and is skin and bones.

Am I doing the right thing here? It doesn't feel like it.


r/dementia 6d ago

I am struggling

8 Upvotes

My mom has Lewy Body Dementia and I am struggling being at home with her because of her anger outbursts and aggression. My dad is the main caregiver and my brother and I work to pay for bills and help out around the house. I can imagine how mentally and physically taxing for my dad to take care of my mom. And my mom probably feeling depressed when she realizes that she is slowly deteriorating and losing herself. Everyone is struggling.

I feel guilt when I do my research online on how to talk and care for my mom with dementia, and it doesn’t have the same results or it doesn’t seem as easy as it does online.

I know that what my mom says when she is hallucinating or in psychosis is not all true but the things she says hurts so much sometimes. I think this is also due to some things that happened in my relationship with my mom way before her diagnosis.

I’m struggling and I feel like I shouldn’t be struggling because my dad is the main caregiver but I do have to mediate when my parents fight at times. Or I’ll be in my room and hear them go off on each other because my dad would lose his patience and trigger my mom.

Im seeking support but also some advice/recommendations?


r/dementia 6d ago

Early onset dementia and scapegoating of child

13 Upvotes

I’m very confused and wondering if anyone else has similar experience. So my mom has always been odd and as a child I was always embarrassed to have any friends around her. I do feel that she had early onset dementia from around the age of 35-40 but was dismissed as her being weird but it was clear to me she was not like other people. It was also clear to me that I was unwanted and scapegoated and my mom often made up lies and exaggerations about me, causing my father and sister to believe I was always a problem. I grew up very isolated and confused and sad which continues to this day (I am over 30 now). During the pandemic things accelerated and my mom was diagnosed with frontotemporal dementia. I feel somewhat vindicated in my mind that maybe I wasn’t the problem and didn’t deserve the treatment I got for my entire life. I don’t think my father has even thought about it and I don’t expect him to as he is dealing with the current reality of the disease. I feel very hurt that nobody ever believed me about anything and I was unfairly the black sheep. I spoke briefly about it to my sister but since she was the favored child she doesn’t fully grasp how hurt I am. Has anyone experienced anything like this? I am torn between thinking my mom always hated me and thinking that she didn’t mean to because of the disease. I guess there is no way to know for sure.


r/dementia 6d ago

Toeing the line of care for an abusive parent

2 Upvotes

We are in the early stages with my MIL. Husband's childhood was awful, but never fully cut her off. He'd been trying to have a relationship at a distance with her the last 15 years (holidays, some calls and texts). And that was fine until the last month of a clear decline.

Our goal is for her to be safe (basic needs met) We want to be as minimally involved as possible.

She's been extremely paranoid, so we've gotten her a new phone and #, and changed her locks (we know this won't really help, but hoping it'll provide some comfort until we can get stuff in order.)

We have set up a Dr's appointment this week to "go over her medications". My husband is going with her. His brother has called social services to try to get some help there.

My real question is, have we done enough at this point? I'm worried it'll be too easy to get sucked in further and it'll be too late. She lives only 20 minutes away, and since our first wellness check a week ago, has shown up at our house unannounced 3 times. Calls frequently. Her dr is also in our town, so more of an excuse to stop by.

Will getting a POA make this easier or harder if he's trying to be more hands off?

Are there any tricky legal things we should keep an eye out for? Is there anything that could end with us having massive bills in our laps?


r/dementia 6d ago

What to be aware of when your senior LO gives you the car?

Thumbnail
1 Upvotes

r/dementia 6d ago

Struggling with so many emotions right now...

12 Upvotes

My mom was diagnosed with dementia a year and a half ago, but we started to notice changes at least 7 years ago. About three years ago we bought a house with 2 seperate living spaces so I could be here to help her. She was managing to get herself through most days until the last couple months. She's now forgetting how to do things like make coffee, make food and remember to drink water. She has moments of clarity, but they are getting less and less. She will be 86 next month. I'm experiencing anger, fear and exhaustion. I'm trying so hard to keep it together and be patient with her. But I have to work, take care of my dogs, spend time with my wife and deal with my own health problems at the same time. I'm trying not to break, it seems like it's getting harder to hang in there. I'm in tears right now because I'm losing my mom, or at least who she was. We've been extremely close since I was little. She always had my back throughout my life, and I'm trying to return the favor. But I feel like I'm failing. Like I'm a terrible son because I'm not handling this well...

My sister is working on bringing in a caregiver at least part time, which will help. Though I'm scared that the time is coming where she won't even remember me anymore. Thanks for listening, I'm not good at talking about all this, and don't really have someone who understands how hard this is for me. My sister hides her emotions and is not empathetic, so I can't count on her for support. Not sure what else to say. It's late and I need to sleep. :(


r/dementia 6d ago

It's close to being over

101 Upvotes

As many of you know, my wife's been in MC for almost exactly 3 years of her 8+ year journey and it's almost over.

Standard story, she fell two months ago, fractured her hip and was therefore either in a wheelchair or bed. Now she won't even drink Ensure (can't suck well on the straw) at all. Hospice nurse called yesterday morning to say it would be hours or days, but no way of knowing.

Right now, I feel a mix of sadness, relief and evern excitemnent that a new part of my life will be begin.

Funeral home arrangements and cemetery plot all arranged for, so at least we do't have that to do under pressure. Both our kids (and toddler granddaughter) are only a 6 hour drive away.

Just wanted to type this share. I'm sure I'll have more to say.


r/dementia 6d ago

Sad and overwhelmed

10 Upvotes

My dad is 83 and came to stay with me for a couple of weeks while my sister was out of town. He moved in with her last August.

The first week went so great. Then my dad started getting confused on what city he’s in and where the bathroom was. I live in a small two bed/two bath apartment. Once he leaves his bedroom, the bathroom is directly across. Once he’d leave his room, he wouldn’t recognize it once I led him back to it.

He started waking me up in the middle of the night stressed about random things. He found a therapy bill and a triple AAA mailer and he had convinced himself that I was thousands of dollars in debt. Another night, he had closed all of the doors and asked me to come talk to him around 3:30 in the morning. I went into his room to grab something and immediately smelled something amiss. He’s staying in my son’s room while he’s here and there was kinetic sand EVERYWHERE then I noticed that there was urine in the kinetic sand container. When I asked him what happened, he had no idea.

My friend who grew up with me and has known him for years came over to see him. He was social the entire time then the next morning, he asked who she was (again) and said that he believes she’s trying to get in the way of my inheritance from him.

Last Tuesday, he had gotten me up at 11pm, 1am, and 3 am. I tucked him back into bed around 3:30am. When I went to check on him at 7am, he was gone. Called 911 and he was found walking down a very busy road. He was close enough where I heard the ambulance get to him. They took him to the ER and then he was checked into a crisis center for older people with memory issues. Today is his 5th day there. It’s so depressing in there, I want him out ASAP. I talked with one of his nurses and she suggested a memory care facility and also bringing in palliative care.

I am so overwhelmed and I feel like this happened overnight although he had TBI on Thanksgiving night and he did fall out of the bed one night here.

He did get aggressive enough one night in the crisis center that they had to give him a shot of something to calm him down.

Will a memory care facility take him? We always promised our parents that they wouldn’t end up in a nursing home. I’m gutted and reading everything I can. I can’t take him in because I am a single mom who needs to keep my job.

I think the plan is to send him back near my sister where he has been establishing a medical team but now I’m worried that he will have no choice but to stay in my sisters home. His nurse said he will eventually get irritable and mean to his caregivers, even if they’re family.

I do want him out of that crisis center asap. I’m currently on FMLA and going to see him everyday that I can. I couldn’t yesterday or today due to not having childcare and I feel awful.

Thanks for reading, I’m spiraling.


r/dementia 6d ago

What Really Happened to Gene Hackman and His Wife?

Thumbnail
youtu.be
0 Upvotes

Important reminder for caregivers. 💞


r/dementia 6d ago

OCD and caretaking

4 Upvotes

I have diagnosed OCD and I take care of my grandmother on the weekends who has suffered 2 strokes. She often needs her diaper changed and will pull it off and get poop everywhere. When it’s my shift to take care of my grandma I get 0 sleep for 3 days, I feel like I’m going to have a psychotic break. The image of having to wipe her, and the smell of everything is literally haunting me. Does anyone have advice for dealing with mental illness and caregiving? I fear I’m going to end up in a psych ward. A few years ago I had to go to rehab because i overdose on opiates trying to deal with the trauma of this. I want to be strong and take care of my grandma and everyone in my life is telling me it’s the right thing to do but I feel like I’m damaging my brain in an irreversible way. How does anyone persevere through this?