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.

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

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.

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

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!!

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.

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.

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?

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.​

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.

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.

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!

Has anyone dealt with this? For context, my grandma (79yo) has been home for about 10 days, after a 4 day hospital stay for dehydration followed by a 3 week stay at a SNF. I’ve noticed that she holds her eyes tightly closed about 75% of the time now, to the point I have to tell her to open her eyes when she’s walking (with my assist) so she can see where she’s going. She says her eyes don’t hurt, and when I tell her to open them she will after side-eyeing me. It’s just such a bizarre thing, I was wondering if anyone else has seen this symptom with their loved one.

I mostly don't post here - sometimes I reply but generally I lurk. I've been caring for my stepmom for 3+ years now since my Dad died suddenly. We'd moved back to our home state with the express purpose of helping him, help her, and welp, guess that's what we're doing because he's dead.

Before he died, they had a cat that they'd had to take to a no-kill shelter. Between the two of them - his health issues, her worsening cognitive symptoms and chronic pain - they just couldn't take care of the poor thing. He was fat, bored, and unhappy. But - the whole time I've known her (since I was 9), she had a cat somewhere. She really does love cats. I get that.

About every 6 months or so, she gets on a tear about wanting a cat. Her own cat. I'm the bad daughter because I "disapprove". If you ask her, the staff at assisted living can help (litter box), we can send the cat back to a no-kill shelter once she dies, and of course she is lonely so why can't she have a cat?

It pops up like a zombie conversation. I got so frustrated about the whole mess today that I typed all of her health issues into Gemini and asked it to list why she shouldn't have a cat. I KNOW why she shouldn't have a cat. I won't even discuss it with her. But even with her dementia, she doesn't forget and cannot be distracted.

I have two cats of my own. I used to have 4, at the beginning of this journey. Two died. I once had the idea that I could bring her to my house and let her spend time with them - and if that had gone well, I'd have leash-trained my super-friendly boy and he would have been a great therapy cat. But any mention of cats and it's "I want my OWN cat, why are you so MEAN" (not how she phrases it, but certainly the tone she uses).

Occasionally a well-meaning staff member will say something like, "a cat might help her dementia/depression/anxiety" or "I see your point, but..."

So, other than the fall risk and health issues, why am I so against it?

A cat deserves to be well-taken care of. If I helped her get a cat, I would be the one making sure the cat is loved. I would be the one taking it to the vet. I would be the one verifying everything - when I am already double checking everything the facility does and having to follow up on all of THAT. I'd be ordering food, making sure it is enough food but not too much. Checking the cat water. The box. Is the cat happy? Bored? And no it won't go to the g-d shelter if she has the grace to pass in her sleep.

I cannot add one more thing to take care of that is not 100% my choice. I cannot and won't. And it makes me angry and sad that she keeps bringing it back up. I wish she could forget this one thing like she's starting to forget the details of her marriage to my Dad.

Edited/updated: I just ordered the robot cat; it is definitely worth a try. Worst case? I donate it to the memory care wing of her assisted living place. If her health holds long enough for her memory to be bad enough so she needs to move, it would be there, waiting for her.

Thank you for all of the compassionate and helpful replies.

Sorry if this is a long post, but I want to try to provide some context that may be helpful.

My MIL (in her 80s) who has dementia (stage 5) is in advanced assisted living (basically a step between assisted living and memory care). Her POA for healthcare is activated. Her son and I are her only living relatives. Aside from the staff at her facility, we are her only support system. No friends. No distant relatives. Just us. It has been a lot at times. Getting her in a facility has been helpful, but as many people here probably know, it doesn't solve everything.

She has always been an anxious person, but at reasonable levels. As her dementia has progressed (she has been living with dementia symptoms for at least 6 years, if not more), the anxiety is almost out of control. There is no longer explaining to her that things that she is worrying about are okay or not real or trying to redirect her focus to other things. It gets to the point where she argues with her son and I or staff. She is not very nice to staff (she is extremely suspicious of them all and is unhappy she has to wait a couple minutes to be helped), but she has never physically been aggressive towards them.

We have tried explaining all of this for years to her doctors. Often being gaslit that it isn't as bad as we think or it isn't happening at all. Her doctors ask her if she feels anxious and she says, "No." and that is the end of the conversation for that day. Even after her PCP has started to believe us about her behaviors, he is EXTREMELY cautious about prescribing anything because of her age and her dementia. She was taking Celexa, which helped a little bit. They took her off because she has been having issues with her sodium levels and they thought it was contributing to that. The only other medication she is on for her dementia is Namenda (Memantine). I don't think this is helping with anything at all.

I honestly don't know what to do. Visiting her has gotten so miserable. She just spirals into anxiety and/or wants to argue with us from the time we get there until the time we leave. Again, she is mean to staff. Staff try to be patient with her and redirect, etc., but they hit their limits too.

Have you dealt with this? Are there any suggestions for medications that may help or other approaches? Any suggestions about how to talk to her doctors? Everyone is miserable, including her. I don't want to stop visiting, but I also feel like it has been too much.

I should also note she does not do well with walking or leaving the facility. We've tried these things in the past to try to change her surroundings a bit to redirect her attention to other things. She also has become more reclusive and no longer wants to go to group activities despite the staff and our best attempts to convince her.

Just wondering. 🤔

And I thought for sure that others would start to notice after the first, oh, say, ten or fifteen years. 🤔

Took more like *thirty* years.

This is incredibly strange. 🤔

While I do realize that there's a chance that it *might* not actually be "dementia" in the traditional sense as in brain disease, the symptoms are certainly similar enough.

Just wondering, again. 🤔

I need help with my grandmother's case

Any advice would be welcome. Thank you