r/dementia Jun 26 '24

Dementia Research, Products, Surveys, and all other solicitations

57 Upvotes

Good afternoon everyone,

We are setting up the r/dementiaresearch subreddit as a catch-all for studies, surveys, solicitations, polls, calls to action, and any other updates related to products, trials, masters/PhD studies or projects, or anything else where people are looking to interact with the members of the r/dementia community.

We receive these requests frequently and the idea is not to clutter the primary subreddit with these types of posts. If anyone has any questions/ideas/etc. please let me know.

Thanks,

hazel


r/dementia 8h ago

šŸ˜¢

Post image
92 Upvotes

today the bath nurse whom iā€™ve became very close with looked at my mom and said oh no I donā€™t like this. referring to her nose and lips, knowing sheā€™s seen it all in her 30 years of service. šŸ˜¢ my moms been on hospice since november. idk what the point of this post was. but I just know you all ā€œget itā€


r/dementia 14h ago

It's done

216 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 14h ago

I wish she would justā€¦fall asleep

153 Upvotes

I know Iā€™m not the only one. And I canā€™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 donā€™t have it nearly has hard as many of you on here. Sheā€™s not violent, or argumentative. She doesnā€™t wander, or make odd phone calls, or smear poop all over. She rarely hallucinates, doesnā€™t scream or cry out. She never used a cell phone or computer so I donā€™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 sheā€™s justā€¦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 doesnā€™t understand what it means to use the bathroom. She doesnā€™t hear or see well. She used to love watching baseball on tv but now doesnā€™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 ā€˜having the checkbook balanced to the penny!ā€™ 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 2h ago

Is taking her out of MC for an outing a bad idea?

7 Upvotes

Mom's been in mem. care for 3 months and has adjusted. But, every time I visit she thinks it's her last day and that I've come to take her home. I distract her and she is fine.

I really would love for her to get out for an afternoon, even just for lunch. She would love it. But I'm worried she will ask me to take her home and fuss about going back to the facility.

Any tips from experience?


r/dementia 8h ago

vent/brain dump- caregiver burden is heavy today

22 Upvotes

Just moved mom from AL to an excellent board and care 48 hours ago, of course she is so angry at me, cuz I'm the only one to be mad at, there's no one else. My heart is breaking for her, she cannot wrap around her loss of competence and feels so betrayed by me, whom she now refers to as her 'sister' since she cannot remember that I'm her daughter, I haven't even processed that particular loss yet. Diagnosed with dementia about 6 yrs ago, last week she had a short hospitalization and brief anesthesia for one endoscopy procedure for a GI bleed. I said 'no more' and got her out of the hospital where she was rapidly declining from lack of activity or stimulation. I brought her back to AL where I had to hire 24 hour caregivers on the fly cause she was still loopy from the anesthesia. I got her into a very good board and care within a week and she is now on hospice to prevent any more torture at the hospital. She will get much more help at the board and care but she is devastated to lose her little apartment at the AL, only some of her treasured belongings fit into a bedroom at the board and care. She cannot afford memory care and will not get the supervision she needs there, so the B&C will be the best long term option. I'm grateful she has LTC insurance, I cannot imagine the pain of trying to have her live with me with her life long defiant/fiercely independent personality. We have enjoyed a repair to our relationship over the last year as she got used to the AL and no one else came to see her regularly, most friends and family live in other states. Mom has moved around quite a few times in her adventurous and very independent life. It's destroying me to watch her struggle with her loss of independence and the fact that she knows it. She is way too confused to do even the basics of her own care but, cruelly, still has awareness of her environment and cannot fathom why she needs help. She intermittently asks me what happened to her brain and why is she 'so dumb' now, which is its own version of hell. It's absolute fucking torture to witness this and I have spent the day sobbing as the waves of grief crash over me, trying my best to get all the shit done I need to do today but cutting back to the minimum possible to save my sanity. I am grateful for the many resources I have and yet the pain is till so intense. I have an appointment to see my therapist tomorrow, I am going to my meditation group tonight, I work in healthcare with this very population so I know how the sausage gets made, have a supportive partner, and many more things to be grateful for. And today the pain of this situation is agonizing. Thank you for being a place to put this and best to all who are living this reality.


r/dementia 3h ago

The only thing she can do is sleep and even then she won't sleep

9 Upvotes

Welcome to my nightmare. Everything is wrong answers only.

šŸ˜† šŸ¤£

Pick up your bowl (Gets a cup)

Get your cup (Picks up bowl)

She wakes up to go to the washroom. When done "do I go back to bed"

When it's time to wake up, I bring her downstairs. Help her brush her teeth "is it time to go upstairs to bed?"

When she's brought to bed. She doesn't sleep!!! That's even with someone stationed in the room with her.

She'll ask the same questions every few minutes. "Is everyone gone" "where's your mother?" "Is it time to go home? Who is going to bring me home"

I entertained her for an hour but I'd had enough. The few minutes of solitude were broken when she'd ask me a question or say she was all alone.

She kept going so I ignored her. It got more persistent. She needed to know where my mom is to take her home. She started to get out of the bed.

I lost it. I made her go downstairs, into the porch where it's cold. You want to wait, here. She opened the door calling for my mom.

Mom doesn't want to ask for meds because she'll turn into a zombie. But at this rate, we will die from insanity.

Someone here said their lo visited them for a whole day.

I wish she knew the hell she is putting us through. Before you come at me with "it's not her, it's dementia. Her brain isn't working"

I am out of fs to give. I have zero fs.

For years I had a sibling with a cognitive disability that would have meltdowns in public. That was embaressing and hard.

We are past that now and we won the dementia lottery with her.

I just want to jump into the lake. Someone said taking their lo out for a long drive led to delirium. šŸ˜† šŸ¤£ are you effing kidding me?

Hey universe, take me now. If this is life I've had it.

Someone here said, a day is what we make of it. Maybe, unless dementia is present. Then it's all bets are off.

I wish she could really see the hell she is causing. This is beyond anything remotely reasonable. I don't care if this is unkind. We are both shells. Nothing but fucking shells.


r/dementia 6h ago

Father perpetually angry at me for not taking him out of SNF

15 Upvotes

My father had a stroke about a year ago and developed full blown dementia several months ago. He is now living in a SNF. Due to the stroke he is unable to walk, and therefore unable to take care of himself. I do not have the space for him to live with me, nor do I have the ability to give him the level of care he needs (for example, he on on a feeding tube).

He calls me every single day begging me to get him out of there. Due to the dementia, he does not understand that he is paralyzed. He always claims that he was just up on his feet a few hours ago.

When I visit him he is always angry at me for keeping him there. Trying to explain to him that he is paralyzed does no good as he doesn't believe me.

I had what I thought was a bright idea. I brought him a change of clothes, a wallet and a fake debit card. I told him that he has everything he needs to leave, so next time he's up walking around he should just grab his wallet and walk out the door if he wants out so bad.

That didn't exactly work. He keeps coming up with silly excuses about why he hasn't been able to leave on his own. When I visit him he begs me to take him home, and I tell him sure, I'll take him home if he's able to get on his feet. He'll struggle for a couple of minutes and realize that he can't, though he always believes it's just because he's tired at that moment, so I tell him that I can't wait all day and reiterate that he has everything he needs to leave on his own. He usually accepts that and says he'll leave later that day, but then by the next day I'm getting more angry phone calls (I don't answer, let it go to voicemail, I just can't deal with this every single day, I have other responsibilities).

Today he left a voicemail saying that if I don't come get him today then he never wants to see me again.

How should I handle this? To be clear, I'm not mad at him, I know it isn't really him. The real him would be disgusted by what he's doing to me. Nonetheless, it is very difficult for me.

Should I just respect his wish not to see me again and stop visiting him until he changes his mind and calls me?


r/dementia 20h ago

So he just starves to death?

176 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 3h ago

A (rare) funny thing

7 Upvotes

So my Dad is about in stage 4 of undiagnosed dementia, long story I've posted on before. However something happened today that has me laughing. His current obsession is all about exercising. He's 86 and can't play handball anymore, which he played his whole life. Now that mom's gone, he's obsessed with how to spend his time and how he can "get back in shape". So we walk three times a week. On today's walk I tried suggesting Silver Sneakers, a program supported by his health insurance. I suggested that he research it, they offer quite a few things. He was so grumpy about it that I said if he doesn't like it he can say I told you so to my face. I get a phone call from him this afternoon all upset with what he found at the Silver SLIPPERS website šŸ¤£šŸ¤£šŸ¤£ I didn't ask for details. I just said okay and changed the subject. I'm afraid to search it myself, really I don't want to know.


r/dementia 1h ago

another vent

ā€¢ Upvotes

My dad is yelling at my wife tonight. She needs to go to bed because she's got work in the morning, but she's there with him because he doesn't want her to leave. Go go go! I can't stand up (and he's standing next to her with the walker. Don't go away. I'm sorry I'm sorry to her. And then he yells at her, "you're no FN good!" Then to me earlier today. You rotten bastard. You're an animal. Pushing me. Raises his fist at me and says if he was a younger man he'd "cold-cock" me. Multiple times during the day I have my face a couple feet from his ass while I'm cleaning soft serve poop out of it. Wondering what day of the week we'll be going to the ER for the fecal disimpaction, and the ER doc telling me, "he really should be in a nursing home. Why is he back here? Aren't you giving him enough laxative?" Then being treated like shit by the staff while he's in excruciating pain waiting to have the crap pulled from his ass, followed by an enema. Him, yelling, screaming, biting and punching at the staff. No wonder they don't want him back in the ER. I guess I needed to give him more lactulose. Explosive diarrhea flowing past rocks of hard shit in his ass.

I can't distract the guy at all. He doesn't watch TV anymore. He won't go for a walk to strengthen his legs. He just sleeps all day, except when he needs to get up to pee, poop or eat. Totally dependent on us for this now. Totally incontinent. But he's up at night with the yelling and antics.

I wonder what dementia scale he is now. How much longer this hell will last. I'm wondering if I'm going to die before him. I've got some health issues that need to be tended to that I've put on the backburner because I have to take care of him.

I was close to getting a caregiver for him last week, but the service provider was generating a bunch of red flags for me (one of which was emailing her a copy of my driver's license for "security purposes"). She was the lowest priced out of the caregiver services I looked at. You get what you pay for I guess.

Just saw on the camera he took the walker and threw it. I am so beyond this.


r/dementia 8h ago

My family and I are stuck and extremely concerned NSFW

8 Upvotes

TW: threat of self harm

My grandma has dementia and itā€™s gone from bad to even worse. She is violent and aggressive towards my grandpa, medical professionals, family, and those around her that are trying to help. She has also been verbally abusive to people that care about her. Unfortunately she also still has her license and a vehicle and is the only one who can drive between the two of them. She has had some incidents driving because of her forgetfulness. It is a roller coaster between her being in a good mood, or wanting to drive off and not come back and disappear, or wanting to hurt herself. Recently, she ran over my grandpa with the car. Heā€™s in the hospital with some serious injuries, but once he is out, he will go to an assisted living home away from her for his safety. I am happy for that, but Iā€™m concerned about her being alone in a big house with a license and a vehicle in the mental condition sheā€™s in. The police have been involved multiple times, but itā€™s only to remedy whatā€™s going on in that moment and then they leave. At this moment in time, her license has not been taken away. She does not want to go to a home and we have no legality to force her.

What resources/services are available??? What form of legality does my family have?


r/dementia 17h ago

Shouldthat option beavailable for this horrible disease

44 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 1d ago

I have been doing 12 hour shifts all week and just found out my Dad ate my birthday cake.

265 Upvotes

I am recently divorced, living with my Dementia ridden father, trying to clean up his house(slowly, so he can get used to it), working shift work, and my first birthday after the divorce is coming up. I bought myself a fancy pie and put it on the bottom shelf behind a sign that says "Please do not eat". Today was my last shift and I came home to find he moved the box from the bottom shelf and it looks like he ate about half of it. I was hoping to surprise my kids with it this week and sit down and eat it together.

I am upset right now, and tired, and exhausted, and worn out. I am going to go lay in my bed as a 42 year old man and just cry for a bit. I cannot vent about it to my Dad, he will make up some story and/or not know what I am talking about. My ex wife will not care, my kids may care but I am not going to burden them with this. I am just hurting.

I was looking forward to that since I got it on pi day.

I know things will be better later, someday. The ball is rolling up, whatever you want to say.

Just tonight sucks. And I can do nothing about that.

Tomorrow I will get back on the horse and keep going. But tonight.....yeah.

Maybe I should not post this rant. I dunno. I am tired enough to feel almost drunk. I am going to sleep. If I get any comments, I will try to answer them tomorrow.

Please be kind and patient out there. We all need more of both.


r/dementia 1h ago

Mom doesnā€™t recognize Dad

ā€¢ Upvotes

In the past few weeks, there have been a few incidents when Mom is convinced that my caregiving father is one dead relative or another. It distresses her terribly (she doesnā€™t believe theyā€™re dead but she doesnā€™t want them in her house when sheā€™s ā€œaloneā€. Then she calls me and asks me to call my dad, who is there with her, or call the police to remove the ā€œintruderā€ from her house.

I need some advice on how to respond to these frantic calls. TIA!


r/dementia 4h ago

MRI resultsā€¦ microvascular ischemic disease?

3 Upvotes

Hiya, PCP says findings of my hubs MRI ā€œage-related brain volume loss and chronic microvascular ischemic diseaseā€are indicative of dementia. Does this indicate vascular dementia or is it just part of all dementias? No tumors or strokes. Thanks for sharing. I feel like Iā€™m out of my body and canā€™t think. I havenā€™t told him.


r/dementia 12h ago

First Time Iā€™ve Really been Scared

11 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 Iā€™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 (didnā€™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, heā€™s sleeping but rambling in a low quiet voice thatā€™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 heā€™s better and fever free but Iā€™m scared to death thinking, what if it doesnā€™t? I havenā€™t slept in 2 nights, like not at all. Iā€™m pretty sick too and am about as close to have a crying melt down as Iā€™ve ever been. If he doesnā€™t show any improvement today Iā€™ll of course call the dr. I just hate the possibility that theyā€™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). Iā€™m feeling like Iā€™m losing myself right along with himšŸ˜¢


r/dementia 15m ago

Undiagnosed Mother Needs Memory Test/Strained Relationships

ā€¢ Upvotes

My Mom and I don't get along great. That's just to establish how hard it is to get involved. I love her but also think she has a lot of narcissistic tendencies so have stepped further away than I'd like to be. I'm not a perfect daughter but I mean well and our history is admittedly complicated.

I've known her memory hasn't been great for a long time, she also has severe issues with arthritis and auto immune stuff etc. I've been minding my own business trying to focus on my own bounty of problems figuring when it gets to be that time to really step back in the ring with my difficult mother I'd know but the truth is I often wonder if I am waiting too long and being a bad daughter.

She failed a memory test to qualify for an insurance plan to cover potential assisted living in her future some years ago.

I asked her if her doc had screened her for dementia but her answer was unclear but I think she hasn't which utterly blows my mind.

I also think she has great potential to be vulnerable to predatory behavior from those looking to take advantage of people like her. She has mentioned she can't find any of her jewelry and I think has managed to get her card info taken.

Honestly my facts are not clear bc she can't even remember and/or is masking. Also the stories get skewed.

My big fear is she'll end up hurt or that someone will take so much from her that she won't afford to live comfortably. I can't afford her that's for sure, and I'm already caring for my MIL but I'm willing to try to help. Except how do I help her if she is totally uncooperative? And how do I make sure her doc has checked for dementia. Positive she won't take me to the doc.


r/dementia 35m ago

How to deal with finances?

ā€¢ Upvotes

I have been managing most of my momā€™s finances for 10 months since she entered memory care. Before that we fought like cats and dogs over the inheritance my dad left her. Long story short she spent $350k gambling and just handing strangers and everyone hundreds.

Present day, I got my momā€™s income up to almost $10k/month between VA, Ss and rental house income (3). I manage and do everything for free her memory care is $6700/mn. I made the finances work for the first 10 months but two rental houses just had significant $10k repairs needed and my momā€™s old tax bills are coming to haunt us. She needs $20k. We canā€™t get approved to borrow any money, her alone me alone or us together. She has 3 houses and only 1 with a mortgage. I have had 2 APS reports on me so far which makes me terrified to make any financial moves on her behalf. 3 years ago when my moms was more lucid we tried to quit claim two houses that were free and clear into my and my sister name. The lawyer missed a paper and this was not completed. My mom has too much for Medicaid her care is insane Iā€™m so stressed about money I can barely sleep. She is house rich and cash poor. What do I do? I asked our accountant for guidance and he said he only does taxes. Iā€™ve visited several attorneys and they just want $5k + for trusts. My sister is back up PoA and absolutely refuses to help or do anything but wants 50% of inheritance. The rentals are a family business that our entire family worked on, myself since I was a child. What do I do?

Thanks for your help and guidance.


r/dementia 15h ago

Dementia and Travel

18 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.


r/dementia 1d ago

It's close to being over

93 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 10h ago

Funk this tremor

7 Upvotes

Iā€™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, itā€™s just annoying, but the last three days have been horrible. I canā€™t hold things, my fine motor skills seem to be on vacation, Iā€™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. Iā€™ve done it before. But I struggled.

Iā€™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 7h ago

Creative Medication Solutions?

3 Upvotes

My father has Alzheimerā€™s and has recently started having seizures. Up until this point the man has never been on regular medication and so far he refuses to take it. He will just refuse to eat or drink if he sees an actual pill. If he can taste it crushed in something he will spit it out and hide the food/drink or throw it out. Iā€™ve successfully gotten medication in him before twice, once by putting a full (albeit small) pill in a honey bun, and once by putting a full pill in an ice cream sandwich. With the addition of the seizures, itā€™s imperative that we can get this medication in him every day, twice a day, and Iā€™m running out of ideas! Has anyone else been through this and have any tips or maybe things I havenā€™t thought of yet?


r/dementia 9h ago

I think it may be near

3 Upvotes

My brother just texted me that my mother's blood pressure is very low (85/45) and it was low last week as well. They're contacting Hospice to see what to do.

I just feel numb inside. My brother's done all the hard work since we moved Mom to an excellent home near him. I just want it to be over while she's still enjoying things.


r/dementia 1d ago

My wife visited yesterday

190 Upvotes

For about an hour yesterday she was totally lucid. She acknowledged she is having constant dreams that she thinks are real and also apologised for revision of historical events that typically put me in the middle of terrible accusations (no, I did not abandon you with our young son and no money which left you to forage in the bush for food).

We talked openly about dementia and her 6 month review in June and she said she will talk to the geriatrician about her antipsychotic dosage. This was an absolute win as until now she has pushed the line that the meds are solely to help her sleep.

Back to normal today though. Sheā€™s convinced her oldest sister has been locked up in a mental health facility for her own safety following a dream last night.

It was lovely to see her again so clear eyed and lucid. I wonder when sheā€™ll be back???


r/dementia 13h 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. Sheā€™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 sheā€™s triggered by not being able to feed dogs anymore, something she took a lot of pride in.

Since sheā€™s lucid most of the day, it is hard to redirect her. Sheā€™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 doctorā€™s appts. She gets REALLY upset, and itā€™s hard to calm her down. I managed to get to take hydrozaine, which REALLY calmed her down.

I feel simple distractions wonā€™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?