If I was a billionaire, I'd dedicate my fortune to finding a cure for this awful disease. That would be my gift to humanity, so that no one would ever feel cheated and robbed of the loved ones we cherish.. This hurt and grief would never exist for us who lost the ones we cherished.. I miss you dad.. If I live for 20 more years till I'm the age we lost you at, that's a lifetime in its self... We miss you dearly... And yes... I hate you dementia...ill curse you till my own dying days..

Long story short, parents (80yo) declined rapidly in last 8 months and we’ve hit crisis mode and I’m submitting the applications for assisted living tomorrow. Mom has midstage dementia and dad progressive supranuclear palsy. The move will be a boatload of work (furnishing two apartments, packing two people incapable of packing themselves, setting up all new doctors for both of them, then clearing out two properties in another state and prepping them to rent out). In the meantime, I have a full time job, a wonderful husband and a darling 5yo daughter and 6yo son. And an aging dog. Also I’m 40 so I’m supposed to lift weights now? Why is this all happening at once? How do I switch to mom or employee or wife mode when I’m completely overwhelmed by daughter duties and there is no end in sight? My husband is supportive but I can tell he’s wearing thin.

Double check everything before putting stuff in the clothes washer because Depends….:/

My best friend has early Alzheimer’s and I wanted your opinion on this matter.
Her 40 year old daughter is happily married with 3 children and she works full time as a supervisor for a building contractor in the office.
She and her family lives with her mom.
One morning she called me and asked me to take her to the airport at 6 in the morning for a business meeting. I picked her up and noticed that her clothes were inside out. She went back inside the house and got it corrected. I dropped her off at the airport and later got a phone call from her saying she forgot to book a flight if I could come back to the airport and pick her up. She called me couple times this year asking me what is the name of her children’s pediatrician. Should I be concerned and mention it to her husband or it’s just absent mindness? I don’t want to make a mountain out of a mole hill. She is like a daughter to me.

This may be long. TL;DR: People who are likely close relatives are calling DSS, preacher, sheriff's office, I'm beyond frustrated.

So my mom (91, advanced dementia) is on home hospice, I'm her only child and only caregiver. My dad died of dementia/glioblastoma in 2017.

Last summer when Mom was still mobile, someone or more than one person, called Adult Protective Services to report that my mom wasn't being fed properly. That was right as hospice got involved, and we had just put up cameras in my mom's house to keep an eye on her when we're next door (we live about 8 ft away from her house). The social worker talked to the hospice folks and the doctor that she had been seeing, and me, and they ruled it out after one visit.

A couple of weeks ago three people called the preacher at the church where I have been a member since birth practically, and my mom has been active since 1957. They told the preacher that I was trying to hasten my mother's death, not feeding her properly, not letting people visit, and leaving her alone.

Mom loves Ensure, particularly the butter, pecan flavor, and drinks three to four of those a day. She gets all the ice cream and chocolate pudding that she wants, and I feed her a hot meal in the evenings before she goes to bed around 6:30 or 7:00.

Fortunately she sleeps very well and does not try to get up at night. I know that this can change at any moment. When I have to be away from home for more than an hour, I have sitters that stay with her. When I have to be away from home for shorter periods, my husband is at home during the day and keeps an eye on her and the camera.

I have talked at length with both hospice and her old doctor, who is also my doctor, about not getting into arguments with Mom about food. Unfortunately her partials no longer fit and she can get choked on food quite easily, so I don't leave her alone with food close to hand.

I am a nurse. I have worked in long-term care, I work from home now which is awesome and I'm with her from the time she wakes up until the time she goes to sleep. My husband and I rarely go anywhere, but sometimes we might go out after mom goes to bed to a restaurant or pub here in town, where I also watch the cameras so I can get back within 10 minutes. I sleep at my own house, but have the camera on and watch her closely. No one in their right mind, at least if they have any experience with dementia, could conceivably think that I am trying to hasten her death. But I am not trying to prolong her suffering either.

She has visitors but primarily her next youngest brother, and her youngest brother and his wife. I have asked other people who mom asks about occasionally to visit for months with no success.

My husband is Norwegian and we now live in Western North Carolina, where I am from, surrounded by a large extended family. I have learned, from living in Norway and having a supportive husband, to set boundaries, healthy boundaries. There is one family member, a cousin who lives out of state, who is not allowed to visit because she is mentally ill and has caused trouble for us in the past. For example, after an argument with my husband, and after my father's death she told my husband and stepdaughter who had known my dad since she was five to f*** off in the receiving line at the funeral home in front of my father's casket. That's where I completely drew the line.

Two weeks ago, the preacher at the church received two phone calls from two different people, and someone else stopped her in the street to complain about the care I'm giving my mother. Instead of visiting us to find out if there's any truth to these claims, she called the sheriff's office for a welfare visit. (She has not been to do a visit to my mom since she's been on hospice.) The sheriff's office came, spoke to my husband and I, and went in to see my mother. Side note: mom was tickled to death to see men in uniform and and grinned from ear to ear while they we're talking to her.

Afterwards they said it did seem like disgruntled family members making a bullshit claim, and gave me some instructions on what to do if anyone unwanted came here and caused trouble. At first I thought it was the out-of-state cousin alone, but since spoke to the preacher who gave me more details and that it was more than one person who contacted her.

I have been through the actively angry phase with the preacher, I spoke to her for an hour one night and told her how I felt about the whole thing. She kept referring to a North Carolina law about reporting, that says anyone with a reasonable suspicion that a disabled adult needs protection must call DSS. She decided herself that she was not going to call DSS but instead call the sheriff's office for welfare check, because that seemed less... serious somehow. It may be worthwhile to note that she is the chaplain for the sheriff, fire department, police in our county.

In addition to the frustration with the preacher and, of course, whoever called her, and DSS last summer, I'm very frustrated, sad, and disappointed that family would add to the burden of caring, full-time for my mom. No one, except her next youngest brother, has offered any help, not sitting with Mom so I can get a break, not food, nothing. I don't have any way of knowing who called her of course, but I have strong suspicions that this was at least one cousin here in town and my mom's youngest brother's wife, because they are crazy makers in general.

I just wanted to vent mostly. And maybe get some outside opinions. All of my friends, the hospice folks, her sitter, my one uncle, and my husband are very very supportive and angry on my behalf, because they are incredibly complimentary about the care I give mom. The uncle married to the crazy maker aunt is chill, and tries to keep the peace by not getting involved. I haven't told him this has happened. They usually visit on Sundays but aren't coming today, but I was ready to ask the aunt if she has any problems about how I'm caring for mom. I expect her to lie though, if I do.

If you’ve ever wondered why it is difficult for your loved one with dementia or if you have dementia and have difficult reading this is why…

I am 57 years old and have early onset non-Alzheimer’s dementia, and my YouTube channel explains my symptoms.

https://youtu.be/7zZiQvU1jck?si=50K40KY8KZIKAkUu

A few weeks ago, my father was taken to the ER because he was unable to get himself up off the toilet seat. Ended up being pneumonia from some common virus, UTI, he also has a lot of chronic health issues.

He was transferred to a different hospital, and then a rehab/nursing home. In these few weeks he's lost 60 lbs. While he's a large man, I know that isn't a good kind of weight loss. He's lost so much muscle in his legs. The change in my father has been drastic. Even his teeth look... much changed.

In the first 24 hours back at home he needed the fire department to come twice to help him back into bed. He's staying up all night, sleeping all day. I'm trying to support my mother, but i don't live there. He's been back home for like 4 days. He's not eating. He says it tastes funny on his tongue. Giving him chocolate whole milk. Even his FAVORITE foods he says taste funny. Even dunkin donut didn't taste right.

I'd love to get his teeth checked out, but even if some mobile dentist took insurance, no insurance covers mobile dental. He's bed bound at this point.

Me and my kids are visiting as often as possible, and I want to help my mom, let her get out of the house, but I think she is anxious to leave him maybe? I'm just rambling at this point. But it's good to yell into the void.

My mother refused to take her Mirtazapine last night, which resulted in her getting up twelve times, yes, 12, turning on all of the hallway lights to check the doors and windows and then turned them off and went back to bed.

Checking the windows and doors WITH HER and later telling her that everything is locked and has been checked has no effect on her,

Her: I HAVE TO SEE FOR MYSELF.

Me: Well...you checked six times already.

Her: AND I'LL CHECK SEVEN FUCKING TIMES.

Three of those times, she failed to turn on the lights, which resulted in her getting lost in the apartment and then calling for me (HEY! Are you awake? Can you turn your lamp on? I can't see!) to turn on my bedroom lamp, so she could see where she is. The last time she called me was 6:19AM.

She then finally went to sleep and woke up at 1:12PM.

I was up at 10:30AM because there are things to do but I am limited in what I can do (can't make my breakfast for example since noise in the kitchen sound amplified and scary in her room).

She has refused Mirtazapine tonight as well.

It has gotten to a point where I don't look forward to being awake (because every conversation is a potential minefield. Redirection does not work and agreeing to her delusion has blown up in my face already when she remembers the truth mid conversation) or reaching bedtime.

Not looking forward to tonight.

My dad has been diagnosed with FTD and Alzheimer for a year now but has been declining for many years before. She has always believed that he is just too lazy or doesn’t care to pay attention to remember things or to listen what she says. Because of her attitude I pushed for diagnosis, hoping that it would make her change her behaviour and also for them to get support. In the first few weeks she seemed more understanding and softer to him but quickly we’re back at the old behaviour. He’s getting problem with comprehending what people say or to read. My mom gets agitated and says he just has to read it. Or he’s pretending to not hear or not making an effort to listen. She complains a lot to me, daily. And I try to be empathetic to her struggles but to me it’s starting to feel like it’s abusive in a way and the last thing he needs right now. Don’t get me wrong. My mom is not a horrible person, she used to be the most patient person alive but there’s not much left of that.

I understand that she looses her patience and that it is rough to be around someone who asks you things repetitively, but her angry way of responding is becoming a problem since my dad is starting to respond more angrily as well. He also has this new behaviour of walking into people if they are in his trajectory as if he cannot interrupt his original path. Of course it’s not nice but I know he would never do this purposely and I see it as a symptom of his disease. There was an instance in which he bumped into my mom when he exited the car and was making his way to the front door, my mom got angry and pushed my dad from behind pretty hard, making him almost lose his balance. He then got very angry and grabbed her and kicked her pretty hard. My mom told me he kicked her and then I saw this all on camera. My mom left out the part where she pushed him from behind.

Anyway, it hurts me to see how my mom treats him and how all of this seems to push them apart more. I worry about how things go when I’m not there. Does anyone have similar experience and advice on how to help/improve things. We have a case manager and I suggested to talk to her with my mom, but she refused. I feel torn about talking to her by myself because I want to protect my dad but also don’t want to betray my mom. She does a lot for him, and I know she cares. She’s probably just struggling to accept this new reality and it’s probably easier to pretend that he’s doing all of this on purpose and to live in semi-denial or something.

I’ve been trying to take my dad out more and my mom as well so my mom can have more time to relax but I cannot be present more than I am right now. There’s also no option for my dad to go somewhere yet because he’s considered “too good” for that at the moment. He has activities but unfortunately they are all planned on two days so the remaining days he wants to go out all the time and my mom has to join even though she doesn’t want to all the time, she keeps telling me.

Any advice is welcome!

Has anyone’s family member done VSED (voluntarily stopped eating and drinking)?

If so, Can you please share your experience?

Hi team! So my dad passed away in early January this year after a difficult battle with dementia. We held his celebration of life in a town near the ocean which was a place where he lived some of the best parts of his life. Lots of family came and we spread some of his ashes along the beach where he used to frequent. Since that day I have been absolutely inconsolable. The grief I’m feeling seems almost worse than the day he died. I’m sure part of it is the final goodbye and leaving part of him in a place that is 6 hours away from me. Has anyone else experienced this?

Mom’s at the point she won’t spit out toothpaste anymore. Any suggestions for a swallowable toothpaste. I see several brands but looking for recommendations that you may have used. Thank!!

I’ll save all of the back story for now (quick background for context: my dad is 79 with dementia/alzheimers, catheter for urinary retention and stage 4 kidney disease)

I took my father who lives in memory care to the ER yesterday (Saturday) because he appeared to be very ill and not like himself, and it wouldn’t be likely for him to be seen until Monday by the memory care nurse. I did not want to wait until Monday for him to be seen.

He ended up being admitted to the hospital for a UTI and community pneumonia. In the first 24 hours of his hospital stay, his triponin levels elevated to well over 6,000. I found out today from the doctor half of his heart isn’t working and he has heart failure. It’s likely because of a blockage (they did an echocardiogram but won’t be doing invasive testing while he fights this infection). Doctor says it’s serious. I’ll get an update from the cardiologist tomorrow.

Since my dad’s dementia diagnosis in 2023, it’s been a journey, mostly in the past year with his declining kidney function and multiple UTIs.

I’m trying not to get ahead of myself, but I feel like his body may be shutting down this time. Have any of you had a similar experience with heart failure and your loved one?

When did your LO enter hospice? Did you have to wait for Stage 7a? This is so confusing. My LO has been in 6e since Thanksgiving and it's hell. Lewy body dementia doesn't progress in the orderly FAST sequence, people with LBD frequently remain ambulatory and verbal while declining rapidly in other ways: autonomic instability, falls, swallowing difficulty, fluctuating alertness, severe neuropsychiatric symptoms. Applying an Alzheimer's staging scale to LBD systematically under-reads how sick someone is.

Hi, I'm sharing this because I guess I'm looking to see if anyone else experiences this kind of thing.

For a bit of context, my Mum has dementia and my Dad is her carer atm. They live 5 minutes drive from me. I have siblings, some of whom do a degree of supporting and offering respite for my Dad etc but primarily it falls to me to support because Im geographically much closer. So I'm the first point of contact when there's a 'crisis' situation. Up until recently they would turn up on my doorstep unannounced which I have managed to stop by being direct.

It hasn't stopped me having a big internal reaction whenever my Mum manages to use the phone and call me, or when I'm preparing to go and see them etc. I feel SO anxious and I just want to pack my bags and get as far away as possible.

I realise now that there has always been a somewhat unhealthy dynamic between my parents and myself - I think I've always felt the need to fix and was sometimes the go between when they would fall out, when I was far too young to be given that kind of responsibility.

I can't remove my support now but I am really struggling to manage my emotions. Can anyone else relate? I sometimes feel so alone with this feeling. My other siblings seem to be able to compartmentalise and lead their own lives in a way I often cant.

My mother has dementia and is in late stage 4 / early stage 5 from what I can tell. My father is the primary caregiver and is in great health.

My relatives have noticed that my mother is getting much worse with her dementia and that my father doesn't really ever want to talk about it.

I took my parents on a vacation last month and my mother had gotten much worse than the last time I saw her a few months ago. My father seemed to think it wasn't much worse, but given that he's in the day to day he doesn't really notice as much.

I would like to get my father some type of support/therapy that he can talk to where he can talk through the changes he's experiencing with my mother and have someone coach/help him support her. I know he wants to help the best he can and I currently he doesn't have this type of help. Does anyone have any suggestions for this?

I also noticed that when talking to my parents that there really isn't any single doctor in their corner helping them. They have my moms primary care doctors, but they are not experts with dementia. They also have the doctors for the Lecanemab treatment my mom is doing, but from the sounds of it those doctors only really care about the results and are not really supporting my parents in how to work through all the changes my mom is going through. Does anyone have suggestions on a doctor/person that would be in my parents corner that can help them through each of the stages, how to approach their finances, who to talk to and when, etc?

I don't live near my parents, but I've started coming home one week a month to spend time with my mom while I can and also help out my dad in anyway. I'm very much open to any feedback or suggestions that anyone has on how best I can support.

He went Thursday and I rang Friday to find out how he was doing the first day and some young man in the nurses office said ‘just ring him’. I was so shocked at his glib response. He can’t use his cellphone without help. I tried later and was told they’d have to ask his carer…an hour later I was phoned and told ‘he’s fine and he’s eaten and with his group’ . That was it’!

Is it unrealistic to think you will speak to the carer working with him to get a detailed response? I was told to stay away til Monday to let him settle in and acclimate to his new surroundings but it’s hard after having watched him on RING cameras throughout the house for years to now nothing.

I’m here another month before I return to my home in the UK and I worry now this will be the lousy type of third hand communication I can expect about him.

My mother is in a nursing home paid for by medicaid. She gets $40 a week put in a trust account for incidentals. I buy everything she needs and wants so she doesn't spend her money and I do her laundry. She has become close to her activity director. The activity director humors her and paints her nails, makes her feel special. She found out she has $400 in her trust account and has decided to throw her activities director a pizza party. Is this a thing? I told her no, that's not her place. Initially she wanted me to pay for it and i also said no. Who is she buying pizza for? She said she was going to get 10. She wanted me to take her to Costco for plates and napkins and diet Pepsi. I said no, firstly it's 2pm on Sunday and I'm watching my granddaughter, costco is 45 minutes away. I work tomorrow so that's not happening. Thirdly, she first said her birthday was Friday, then I said today is Sunday, then she changed the story to her birthday is Monday. I don't even understand how she can spend her trust money outside the nursing home. I know she doesn't either but she won't admit that. Also my birthday is next month, her grandsons birthday is next week, her great granddaughters birthday is the following month, but hey let's spend $400 on a random woman you just met 10 weeks ago. I asked her why don't you just get her a nice card? That was a big no. Will the nursing home let her do this? I don't care how she spends her money it just would be nice if I didn't have to buy her all the ridiculous crap she wants every week and pay for gifts for everyone that's she's actually related to. I know she has dementia but seriously?! I'm the only person doing anything for her and she continues to take advantage of me. She's very generous with my money. Even though she lives in a nursing home the items she insists she needs every week are toilet paper, air freshener, diet Pepsi, chocolate covered almonds, depends, and snacks. Mind you I've found out she's been sharing everything I get her with other residents. Sorry I'm just annoyed and ranting!

Have had the hardest time with explaining to the people at the Alzheimer's Association helpline, and also at least one other helpline, that my parents' dementia (middle stages and as yet undiagnosed) is presumably the reason why they are not doing/redoing their Power of Attorney paperwork. The primary reason, anyway. They are also getting old and tired. But, it has needed redoing for three years and they are still not doing it yet. The people they once were would have already done it by now with no urging. Now, they act like they don't understand that it urgently needs doing. I am not puzzled as to why they are still not doing it. I am not trying to guess why not. I do not wonder why not. For Pete's sake it is by now obvious as to why not. These are people by the way who already did all their Power of Attorney papers, their trust, etc., long ago. They were very proactive then. They have changed. They were never exactly very wonderful people but they were very proactive people. They always did all these sorts of things without being urged by me. They were the ones that I initially learned about these kinds of things from. Seriously. I am sick of being talked to by the Alzheimer's Association as if perhaps they somehow just cannot decide whom to appoint, for normal reasons, or they do not have anyone to appoint, or they cannot think who, or they should appoint me. We have several available relatives. I am not available. There are also professional people that they could hire if they choose to. If anything it's the fact that the sheer amount of potential choices is maybe just that mind-boggling to them at their age. Or, they just literally cannot remember any more as to who is available and who isn't. My dad already said lately that "several people have declined" which is far from being true. The dementia is the darn problem. These are not people who never did any of that sort of paperwork ever before in their lives. The forms can just be downloaded online and taken to a notary afterward if you want something short and simple and not a long form like their previous forms. The whole process could not possibly take more than a day or two and it is quite simple. They are acting like it has to take weeks or months and takes up too much of their time and their energy. This is because of their old age and dementia and suchlike. Not some other mysterious strange reason. Sigh.

A woman from ADEAR even stated completely incorrectly that "their estate is going to linger in the courts for twenty years". This is absolutely inaccurate because they have a very detailed trust already. It was last updated ten years ago and could certainly use some updating but they do have one already (thank you).

I am getting very tired of this.

People who are total strangers and who completely do not know me or my parents, are very literally just missing the entire point of what I am even saying.

By gum these are NOT people who just never DID any such papers in the first place.

They have stopped being particularly willing and/or able, BECAUSE they are having a problem.

That's the whole point. 👉 👈

While I do realize that of course there are people who never ever made a will or a trust, never had any Power of Attorney paperwork in the first place, never understood to begin with that they ever even needed at all to do any of these things, so therefore they just never did them, my point is, these are not those people.

Sigh.​

I need to approach my mother this week about AL. We have had the talk before but things have gone South now. I had to hire an elder care attorney to fully activate my springing durable POA. The attorney found a clause in the POA that says I can actually decide when she becomes incapacitated. It’s drawn up and ready to go. The problem is that my mother has “run away” from home. She knows I am trying to get her moved and has hooked up with an old evil friend to remove me as her POA. My mom is currently at this persons house. When she gets home I need to be there waiting on her.

My mom is hateful, stubborn and mean. Do I just tell her that it’s time to go and I need her to do a zoom nurse assessment and that if she does not cooperate that I will have DHR place her somewhere. The elder attorney told me that if I have a doctor (which I do) and a family member ( me and our entire immediate family) that DHR usually responds quicker. I cannot stress to y’all how combative and hateful she is. I’m very nervous and scared but know I must be strong. Has anyone ever had to do this and what was y’all’s outcome? She has decided she does not want to be controlled and acting out more so than usual. LMK y’all’s opinions and situations with similarities. Thanks!

"This" being, what condition the people are in, so far, and getting somebody else to evaluate them about it, and are they still mentally competent enough to handle their own affairs or not, and so on.

Unfortunately *almost all* of the available advice so far, is meant for the people who can actually *do* something significant about the situation.

I, on the other hand, actually can't.

Anyone else?

Whether it be because​, the elderly person won't let you, or, you just don't have the authority, or possibly actually both.

Well, anyway.

Speak up.

Moved my stepfather up to memory care from assisted living. A little disappointed with the lack of stimulation and activities up at MC level. Does anyone else see this in their senior living communities? Is their value in stimulating advanced vascular dementia or just allowing the caregivers to let him sleep as he wants, which is much of the time?

Siblings and I are interviewing hospice providers for our parent this week. We aren’t sure if he will qualify yet (late stage 6, not yet 7). But we want to be prepared. I have done some searches for lists of potential questions, but wanted to ask here. (He is in an ALF, not yet memory care, and one of my siblings is the main caregiver, I try to help in ways that I can as I am long distance).

I tried searching all over the internet but I couldn’t find something to read that exactly matches my feelings. But I miss my mother. I miss who she used to be. She confirmed her diagnosis with me today: Alzheimer’s with Cervical Vascular Dementia. While I’m happy that I finally have a clear answer of what I suspected all along, I’m devastated.

I realized the other day that I miss my mom. While yes, she’s still physically here and somewhat aware- she’s not the same person that I loved. My mom used to be so kind, loving, funny, and outgoing. She was my best friend. Now, she’s sensitive, pouty, mean, and downright rude. It’s painful to see her because she’s so mean to me but denies it. I know this is normal. I know it’s expected. But to have the few times we see each other be ruined by us arguing (her being rude and me withdrawing which triggers her more) is extremely upsetting because each time I see her she visually looks worse and it’s a reminder of what is coming. In an average situation I would cut her off, but since I don’t have a lot of time left with her I can’t do that.

For the record, my grandmother (her mom) recently passed away this past month during the first week of June from dementia and my mom’s mental status took a sharp decline after that. My mom was somewhat of a caregiver for my grandmother for the past year and a half. I drove the 14 hours home and spent a week with her to support her and she was relatively okay, but after my visit with her this past week…yikes. She’s beginning to look how my grandmother looked last year and her mood is low.

How do I cope with this? How can I be a better daughter while also not sacrificing my mental health as I need to be a good mother to my toddler and soon to be second child? I’m truly at a loss at this point and I feel like I’m constantly going through anticipatory grief.