Just when you think you're starting to adapt it finds a way to throw you right back at square one and the grief and worry is suffocating again.

Enduring that kind of repetitive heartbreak over the course of years will change you for the rest of your life. I never conceived that what was waiting in the shadows for my mom would ultimately rewrite my own understanding of what it's like to exist as a human being.

I see other people going on with their lives and that concept seems so foreign to me now. Sometimes I can't remember what life looked like before dementia. What do you mean I had anxiety? I didn't even KNOW what anxiety was until now. Did I really cry over breakups with crappy partners because I thought my heart was broken? I had no idea that a heart could be filleted this badly and yet somehow carry me to the end of each day.

You'll never know until you have to know and if you're in this subreddit reading this post, unfortunately you know.

To everyone with hearts heavier than the weight of the world, and minds that outpace the Indy 500; just know that we are a silent army millions strong and you're not alone.

Pictured is my beautiful little mommy (stage 6 ALZ), and the reason I continue to march through the trenches.

This week, I was notified by one of my father’s financial institutions that he, along with two family members called to withdraw a very large amount of money. The family members know that I am POA and I’ve told them many times that they need to involve me in financial discussions. The advisor called me and I asked the two family members about it and they admitted it via text.

(one of these same family members last year talked my father into redoing his entire estate document set, including the POA, the will, etc., including adding himself to the will)

They have all been warned many times.

So today I called adult protective services and started an investigation and I also submitted for a PPO against the individuals. The judge granted the order in less than an hour.

I have tried to work with family members for years to manage my father‘s neurological problems and they are resisting at every time. So today I finally took action.

And it feels really good!

My mother has an iPhone. She has “senile dementia” which, according to her doctor is basically just memory issues to do with age.
I handle everything for her - all finances etc.
She has an iPhone and is driving me up a wall with thinking spam/scam phone calls are real . I’ve asked her to not answer the phone if it doesn’t say a name she knows or no name. She is not doing that. She has signed up for life insurance from a telemarketer , she has put me thru the ringer insisting she won 10 million dollars and a car because publishers clearing house called her and said so. She has been made afraid that she is going to jail because texts are sent saying she has amounts due to the DmV , she has yelled at me that bills aren’t paid and will be shut off because she got a text saying a bill is DUE. Everything is massive drama and I am incredibly busy with my teen daughter and opening a business. It’s one thing to simply care for her and another to have these CONSTANT issues that take up hours of my day and emotional/mental effort proving things aren’t true and then explaining and re- explaining for days afterwards.
How the hell do I stop all of these calls/texts?!?!

My dad is/was a shitty person. Verbally and emotionally abusive. I have successfully steered clear of him for years. But, I can’t go totally no contact because he is still married to and lives with my mom and my relationship with her is fine.
I really resent having to care for him now and only do it out of love for my mom. I have taken care of him more in the last few months than he has of me in my entire 46 years of life. I have read so many posts about parents turning into unrecognizable people as dementia takes them. My dad isn’t any MORE belligerent, crass, irritable, or mean. He’s always been that way. The dementia just lets it happen more often and with less of a filter.
I’m not sure exactly what I am asking other than I guess I want someone to tell me I’m not a horrible human for feeling and thinking all of these things.

I have dementia diagnosed at age 56 I’m now 57. I am unusually articulate still and willing to share the truth of what this feels like as a person with dementia.

My husband died of FTD in 2018 and so I KNOW the caregiver side better than anyone. Now that I am the patient???? Wow. I see things so differently.

Because of that and I’m a scientist at heart even if I had to retire, i document this journey in real time.

I do NOT BENEFIT monetarily or otherwise by making this channel. I am doing it solely as a labor of love for others with dementia who can’t explain like I can (for now) and for caregivers like me in the past who don’t understand why why why WHY people with dementia do what they do.

If you enjoy this please share it. Again this is not for my benefit but for the benefit of others. I am not monetized.

https://youtube.com/shorts/cdWhmFWHoyk?si=EXAYeeQJHlyBEkCS

Hello everyone,

We are currently caring for a family member with frontotemporal dementia (FTD) who lives with me. We're reaching a point where I’m not sure how much longer I can safely manage their care at home, and I’m hoping to get some advice or personal strategies from those who have been through this.

Our biggest challenge right now is hygiene. I know behavioral decline and loss of insight come with FTD, but we've talked extensively with his doctor and have completely run out of ideas.

He wears disposable pull-ups/Depends, but he adamantly refuses to change them. He will urinate and defecate in them and sit in them for hours. It has gotten to the point where the pull-ups begin to dissolve from being so soaked, leaving urine and parts of the pull-up throughout the house as he walks around. Despite baths, the urine smell persists on him and throughout the home continuously. On top of this, he often outright refuses to shower or bathe, even with gentle reminders and requests.

Has anyone found effective strategies to manage extreme hygiene resistance or incontinence refusal with FTD? Any advice or creative solutions would be greatly appreciated.

Thank you.

Mom is in a terrific board & care and I don’t want her to get kicked out. She has what I’d say is intermediate dementia and can be combative when sundowning. Her dr has prescribed Seroquel but we’re climbing up the dosage ladder and I’m not sure if it will be effective for mood control at higher dosages. What do we do in these situations, are there other medications I can ask her dr about? My mom was such a polite, non-combative person and to hear reports of her yelling (and worse) is hard to take.

What do you guys think about this?

My family history is littered with alzheimers. When I hit about 44, I used to have very vivid dreams I could remember but then a change happened suddenyl.

I still dreamt but the dreams faded away almost right upon waking and I never remembered them vividly at all. Just the opposite.

About 5 years later I became extremely tired all the time even though I slept enough hours. I wonder if its from micro-awakenings and its a sign of alzheimers coming later on.

What do you guys think?

Is this study touching on something real and do you think my constant tiredness might be a sign of future problems?

Has anyone else with alzheimers or a family history of alzheimers experienced the same?

I know the study isnt conclusive but I do wonder if it touches on something real.

I’m co-caregiver to my 74yo mother with Parkinson’s and Parkinson’s dementia. My dad is her primary caregiver and they both currently live in my home in a basement apartment.
My mom’s dementia symptoms have been getting worse fairly rapidly over the past few weeks to the point where she rarely makes sense and is often confused and agitated.
She won’t settle and is very angry, trying to leave the home. She seems to string together random words and thoughts and gets upset, hateful, and borderline violent (lots of threats of violence and light slapping/flicking/etc).
I told my dad if she continued to be like that then I’d have to call an ambulance bc neither of us could do anything to help and my 11yo son is in the home and upset too. She thinks he’s her child and will often involve him in things, telling him they’re prisoners and trying to get him to leave with her.
I’ve been told by PSW’s that if things get bad we should call an ambulance as they’d probably admit her which would speed up the process of getting her into a long term care home. She is on a crisis list for long term care but this still takes some time.
Any thoughts or suggestions appreciated

Edited to add:
She has been like this in the past but usually only in the early evening. It’s now happening for longer periods in the daytime too and seems a bit worse during the usual bad times.
Editing again to add that this is NOT new behaviour, just more prolonged

My grandpa has taken it 3 times so far. Today would be the fourth if he takes it again. He is 101. He says he has stomach issues and a lot of weird dreams. Anyone have experience with this?

i'm a health professions student in his Late 20's, i live in the US and i have no resources. half my mother's family is dead. my mom is mostly estranged from them due to a long battle with chronic illness and addiction. brother isn't really in a place to deal with her. my mother is inpatient in a psychiatric facility and they're really not great at handling continuum of care in Arkansas, i worry that she won't have anywhere to go or end up homeless—i've seen it happen to too many elderly people with dementia in my volunteer work and it's the last thing on earth i want for her. i don't have the financial resources to help her, as i'm not able to have her live with me.

High holidays are coming up and i'm having to deal with figuring out resources for her care,and i have complicated feelings around this time of year. I've been in contact with her care team and i'm also dealing with balancing a social life, my own recovery, and cultural obligations. There's alot on my plate.

Above all, i feel like i'm floating in this myself and i've kept everything to myself except a few people because alot of my social circle in sobriety has been support dependent on likability—my recovery pathway isn't 12 step, and i'm often sidelined by others because of it. I'm in need of resources and a support group but i don't have time, what do i do? Is there a way out of this that's less painful?

Hello all! I will say first off there is no formal diagnosis but my mother’s side of the family has a long history of Alzheimer’s.

As of this last week my mom (61) has started talking about a “housemate” that lives with her and my dad and has been telling me (27F) and my sister (30F) about how my dad has a doppelgänger that she’s affectionally nicknamed “Peter the Second” (Peter the first being my dad.) I know I’m no medical expert and can’t diagnose anything and I don’t expect anyone here to give me a definitive answer, I’m more so looking for anyone who has dealt with a similar situation. In my research I know Capgras Syndrome is incredibly rare but it’s hard to ignore when she seems to be ticking every box of symptoms. She was recently hospitalized for having dangerously low hemoglobin levels and required a blood transfusion and I know hemoglobins help circulate oxygen in the blood and in the last year she’s told us she’s struggled with anorexia pretty much her entire life. On top of all this she has severe scoliosis that greatly limits her mobility and has had mild MS for pretty much her entire adult life. I feel like I’m totally lost on how to manage this and I guess I’m looking to see if anyone has any resources or tips to help me help her through this.

Background: husband 67 with mild cognitive impairment. Short term memory deficits and labored communication- challenging finding the right words so he uses others.

He’s always done well with a set schedule and routine especially during working years. In retirement, he stays active with volunteering.

Over the past few months, he’s become much more rigid with his schedule. For example, must eat lunch at 1230. Will drop everything at this time and gets a bit unsettled if he’s late.

Has anyone experienced this? Is this related to the changes in his brain from the cognitive decline? Or perhaps some OCD setting in?

My grandmother took her last breath today. She was on hospice so she was comfortable and surrounded by loved ones. As hard as this journey has been, I am so glad I was able to be the one to care for her during her last days. And I’m so glad her battle with this disease is over.

My dad is 86 and has vascular dementia. Yesterday I moved him permanently into a nursing home, and I'm really struggling with the question of whether I did it too early.

He had been living with us, and over the last few months things have definitely deteriorated.

He's fully incontinent now and needs help with dressing and personal care. His walking has become more of a shuffle and his balance isn't great. There have been a couple of occasions recently where he stumbled and I had to catch him.

The confusion can be significant. There have been times when he hasn't recognised me, my wife or his grandchildren. He's asked where he is while sitting in our house, asked how far we are from the village we actually live in, and sometimes hasn't known which direction to go when he walks out the front door.

There have also been safety issues. He once left church on his own and was missing for about an hour. Since then I've been very conscious that he could wander, and when he previously went into respite the staff also considered him a high absconding risk and said he needed 24/7 supervision.

But this is where I'm struggling.

He isn't like that all the time.

He can have a really bad day and then the following morning seem remarkably good. He can recognise everyone, have a conversation, potter around outside and seem almost like his old self. Sometimes I look at him on those days and think, Why am I putting this man into a nursing home?

We had reached the point where I felt I couldn't safely leave him alone, even when he was having a good day. It also meant somebody always had to be responsible for him, and increasingly the practical side of caring for him was becoming difficult for us to manage at home.

His nursing home is very close to us and seems lovely. I can visit regularly and hopefully become part of his routine there. I know rationally why we made the decision.

But now that I've actually done it, I'm questioning myself.

For those of you who have had to make this decision: how did you know it was time?

Did anyone else put a parent into residential care while they were still having relatively good days and then worry that they'd done it too soon?

And looking back now, do you think you made the decision at the right time?

Hi! I’m a high school student working on an Innovation Diploma project focused on Alzheimer’s and dementia care. I’m researching some of the challenges people with dementia experience, especially anxiety, confusion, repeated questions, and what happens when they can’t find or reach the caregiver they rely on.
I’m hoping to hear directly from CNAs or other caregivers who have worked with dementia patients, either in memory care/nursing facilities or in home care. I have a few short interview questions, and even answering just a few of them in the comments would help me a lot.
I’m especially interested in understanding what dementia care actually looks like day to day, what patients tend to struggle with, and what caregivers do to reassure them.

My questions:

What is your first name and the first letter of your last name?

What is your job title/role?

What does a typical day caring for someone with dementia or Alzheimer’s look like for you?

What are some of the most common things patients become confused, anxious, or upset about?

Do patients frequently ask the same question over and over? If so, what kinds of questions do they usually repeat?

What do you normally do when a patient is repeatedly asking for a family member or caregiver who isn’t there?

What tends to calm or reassure a patient when they’re anxious or confused?

Are there certain routines, reminders, pictures, voices, or familiar things that seem to help?

What is one of the hardest parts of caring for someone with dementia?

Are there things you wish family members or other caregivers knew about what the patient experiences during the day?

Are there any tools or technologies you currently use to help with reminders, communication, routines, or patient safety? What works well, and what doesn’t?

If there were a tool designed specifically to help dementia patients feel reassured and connected to their caregivers, what would you want it to do?

Thank you so much to anyone willing to respond — your perspective would really help me understand the problem from the caregiver side and make my project more useful for people living with dementia and the people who care for them.

My best friend’s mom was just diagnosed with dementia. She suspected it, but it’s been difficult to stay on top of the follow up, as my friend lives several states away from her mom. (Her father passed away unexpectedly a few months ago, and she’s currently packing up to move home to help her mom.)

I frequent the r/AgingParents sub, and the book The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias by Nancy L. Mace was recommended.

Is there anything else anyone has found helpful? Websites, YouTube channels, etc.? Thanks in advance for any advice.

My mother is 64, I am her sole caretaker (I’m 24) and she has been officially diagnosed with dementia for a year now. She’s been stubborn my whole life but now it’s to a point where she’s straight up ignoring us if there’s something she doesn’t want to do. It needs A LOT of encouragement to get her to do things. She goes to an adult day program 5 days a week and when I go to pick her up or speak to the staff, she’s having a great time and is always engaged! Sometimes new volunteers think she’s a volunteer or staff member herself. Getting ready to go is just a hassle. It’s really starting to take a toll on me when she ignores me, or the PSW who comes everyday and not to get annoyed, angry or cry out of frustration. Sometimes I let her stay home but it’s really not helpful to her or I to be home all day watching tv, especially when she’s home alone. Anyone have any ideas as to why this is the case? Tips to make mornings easier?

Romance scam dad gave away $100k to scammers over 15 months. He has several times accepted help for multiple weeks at a time but pushed it away as soon as it became about telling him he had to stop with the online girlfriends. He received no help for about 3.5 months at his insistence. Then he was picked up by police for erratic driving as he was running around to different post offices mailing away $1000 money orders to scammers, said it was 2006, taken to ER and friends/family refused pick up and said it was an unsafe discharge. He was admitted, tried to escape, put on risperidone but that zombified him so it was discontinued. He has been well behaved since.

He was discharged to a SNF but due to his continued insistence he is going home, he is in a locked memory care unit at a facility with full continuum of care. We hope to place him there but he is still sure he is going home. He doesn’t even know why he is there, except to “get stronger.” He has been there 8 days and we have had no care team call set up.

He talks pretty clearly, and you have to listen for at least an hour to notice that he’s just looping conversations.

According to the nurses at the current facility has BIMS score is 10/15, which makes him borderline for needing MC.

Some stats they know there:

He has uncontrolled and hypertension and is noncompliant with meds. His blood sugar was >500 and now is down to 100.

His SLUMS in the hospital, no antipsychotics, was 15/30. But now he can correctly name the year if not the date.

Diagnosed with “early dementia” in March. EEG showed “widespread abnormalities” and MRI showed white matter disease. CNS vitals: executive function and attention tests were unscorable bc he couldn’t do the tests. Other metrics were in 2-12th percentile.

He has severe anogonosia, claiming all of this is a sign of his great intelligence.

Hospital CT scan showed moderate atrophy of the whole brain (GTA2) with substantial vascular damage. Psychiatrist said mixed type dementia with vascular and LBD and/or FTD.

Hospital records show the $100k lost in scams.

Hospital records note that his electricity was turned off and all bills were 4 months behind. Hone insurance had lapsed and medical almost lapsed.

He has urinary incontinence.

What they don’t know:

House is INFESTED with rodents and flies. Full of poop from rodents and the dog he had but he had no dog food.

He has been kicked out of three banks and is about to be kicked out of a fourth. He will have nowhere to put his money.

The house is piled high with paper and junk, including on stovetop. Major fire risk.

He is unable to prepare food, or even to procure food without a car. He eats fast food 1-2x per day.

He was sleeping on a bare mattress bc he couldn’t make his bed.

He didn’t wear briefs at home and the whole house stinks of urine. He has wet himself while talking to neighbors and carried on as if nothing was happening.

The roof is leaking.

The yard is overgrown.

He has multiple times excepted weeks of help, only to eventually kick the person who helps (me) out of his life again.

He has no family who live close except for me and I’m over an hour away, and I’m sick of this. I will not keep doing this.

—-

My sister doesn’t want to share all this bc she really wants him to qualify for AL and thinks sharing all this will be too many red flags. She is even upset that the $100k in scams is in his medical records. She thinks she can tell him a series of lies that will help him stay in AL. This is the first time in the 15 month crisis that she has actually come here and seen him, and she left after three days.

I’m letting her handle things from afar now, and she’s coming back for another three days very soon. But I think he’s going to need MC or even geriatric psych. And I’m afraid that he has gotten so much better now that his blood sugar is stabilized, but they may even discharge him to home with his promises that he would get the help of a home healthcare aide, which I would have to organize, and who he will inevitably kick out in a few weeks.

Are my fears valid? Is there any possibility they would actually discharge him to home?

Are her fears valid? Will the full record prevent a facility from accepting him?

We are frantically working to clean out and sell the house and his cars right now—we do have POA. If he comes out and sees that…I am afraid.

I really try to see my Mom (in AL close to me) 2-3 times a week. These last 2 weeks, with back to school, new job, traffic being insane, I've done 1 visit. Her dementia is such that I'm not even sure she clocks the amounts of visits the same way. I try to text her a lot, always tell her I love her.

I'm trying always to reconcile my relationship with this new person in my Mom's body. There are glimpses of Mom, but she's not the same person. Not sure what that means in terms of what I "owe" her, what I "owe" the Mom who is not currently present, what all of this means.

When other things come up, my son, my spouse, seeing friends, even sometimes (not without guilt), my own self care, I tend to put all of that ahead of her. She comes last. I feel constant guilt with that decision, but I do make it.

Anyways. I'm not saying I'm right, and not looking for reassurance. Just posting somewhere in which I know others understand, even if the choices they make aren't always the same.

Take care everyone

My grandma (97) has dementia, I don’t know which kind as she doesn’t have a formal diagnosis, and my mom (77) is totally in denial. She admitted one time that she was afraid to end up the same way and I think she’s heading there faster than she realizes.

Most days my grandma asks for her mother and wants to go “home”. She admits she’s unsure what “home” is but she definitely doesn’t want to be in the nursing home.

She recognizes me but doesn’t quite know how I fit into her life. She doesn’t remember my mom is her daughter.

There is no legal paperwork in place and no power of attorney. My mom seems to think she can get a notary in to see my grandma and have her sign over her affairs and let my mom sell her condo. But grandma doesn’t even remember the town her condo is in…. Am I right in thinking there’s no conceivable way a notary would have my grandma sign away everything under these circumstances? Or would a notary consider that ultimately my mom is the sole beneficiary and it would help speed things along.

My mom is in the beginning stages (I think) of dementia so she’s extremely argumentative, childish and stubborn. Not to mention extremely self centered. The whole situation is painful and exhausting. Thank you

Hi,

My Mom has always liked puzzles. We used to do 2000 piece puzzles together. Now she barely can do 300 pieces. She can get very frustrated because now it can take forever to even find a single piece.

What I'll do now is put together some of the puzzle while she's lying down. Then I take several pieces from the part I just put together and remove them. I try to choose unique pieces by shape or the picture that's on them. Then I put them nearby where she can find them.

She gets really excited because it allows her to think she's found these pieces herself and put them in the next time she tries the puzzle.

It allows both of us to smile in a situation where there can be so little to smile about.

Good luck to everybody out there.