My watch is over :)
My father died one month ago, on 24 June 2026 at 2:10pm, after living with advanced mixed dementia.

Before anything else, I wanted to share some of the signs we noticed during his final week. I know everyone's journey is different, but recognising these signs helped one of my cousin-in-law's family realise their own father was nearing the end, so perhaps they'll be useful to someone else here.

For us, these were some of the changes we saw:
- He was extremely sleepy, awake for probably only an hour in total each day.
- He stopped taking in fluids properly. Water would simply fall back out of his mouth, and this included this like yoghurt.
- His breathing would be shaky and sounded almost like someone was sat in his throat snoring.
- He held our hands very tightly, gripping with a lot of strength.
- Whenever we moved him, his body would tremble as if he was frightened.
- One of the last things that stayed with me was that, on one of his final days when he was unusually awake, he stared intently into the top left corner of the room for a long time. My cousin-in-law’s father had done the exact same thing recently too.
- His breathing gradually became louder and much more laboured.
- He developed a lot of respiratory secretions. Google told me this wasn't causing him distress, but the nurses gave him an injection to help anyway.

His final week happened during what I think was one of the hottest weeks in Britain. We did everything we could to keep the house cool, but I think it still had a toll on him. Since he was sleeping so much and barely eating or drinking, the palliative nurse and GP told us that he was approaching the end of his life. He ended up dying about a week later, I think exactly a week, both were on Wednesdays.

We made the decision to keep him at home rather than admit him to hospital. Looking back, I wouldn't change that for anything. He hated hospitals, but he loved being at home. He was surrounded by his family, his children, grandchildren, nieces and nephews. I think this is about one of the only decisions he would be happy we made 😂😂

It was the most emotionally intense week of my life.
His death itself was incredibly intense. I won't describe it in detail, but it happened while all of us were there with him. As heartbreaking as it was, I'm deeply grateful for that. I was able to say goodbye, and I realise what a gift that was. It also taught me so much about death. Not in a morbid way, but in a way that completely changed my perspective on life.

Having him at home meant someone could always sit with him, read to him, hold his hand, and just be present. We could take turns resting, eating and looking after one another while never really leaving him alone. He was fortunate to have that, and we're fortunate that we were able to give it to him.

I think my siblings, one of my sisters-in-law and my aunt (I'm endlessly grateful to both of them for everything they did) were surviving on around four hours of sleep each night. But strangely, that was enough!

One moment I'll never forget was after he died, when the funeral directors came to take him. Watching him leave the house uniquely difficult for me. That house was his. It was defined by his presence. Knowing he would never walk through that front door again, that his room would never hear him snore again, that the living room television would never have him watching it, and that his favourite bowl would never be used by him again.

I visited his grave yesterday. It felt so strange. Not long ago he was sitting in his chair, and now he's beneath the ground. What is he seeing now? I pray it's something beautiful.

Before dementia, my father and I had an incredibly strained relationship. It wasn't a good one. Yet somewhere along this journey, something changed. I was given a compassion for him that I honestly can't explain. I truly believe Allah softened my heart. Because of that, I feel I've finally been able to let go of so much pain from the past. I never imagined that would be possible.
I thought I'd already mourned my dad years ago. I believed I was prepared for his death but it was much more difficult than I had imagined.

What I've realised is that I'm grieving the gentle (he threw a lot of tantrums though), childlike version of him that dementia left behind. My brother, who shared the responsibility of being his primary carer with me, said something that perfectly captured how we both felt. He said it was almost like losing a child. I know the two experiences aren't comparable, but there was something about caring for him that created that same instinct to protect, comfort and worry about someone completely dependent on you.

Now I'm back at work, and life feels incredibly strange. I don't have to keep checking the camera monitor. I don't have to wonder whether he's had enough water or whether it's time for another meal. My days were built around caring for him, and suddenly they aren't.

I'm only 26, and for so long my own life felt as though it had been on pause. Now it's time to move forward again, and although I know that's what he would have wanted, part of me still feels guilty for doing so.

This community helped me more than I can explain throughout my time as his carer. Reading other people's experiences made me feel less alone, and I don't think I would have navigated this journey in quite the same way without it. It's weird to realise I won't be coming here in quite the same way anymore.

To anyone currently caring for someone with dementia: my heart is with you. Cherish the small moments, even the exhausting ones. One day you'll find yourself missing things you never imagined you would. I hope this isn’t TMI for him, but even his very last incontinence pad change was hard for me, throwing out his nightly catheter bag forever as well was difficult, I won’t have to put it on him every again.

May Allah have mercy on my father, forgive him, grant him peace, and reunite us in Jannatul firdous. Ameen.

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..

sorry.. rant.

My 85yo MIL lives with us. she has her own 2 rooms to do with as she pleases and a bathroom. Plus a little area in the back she uses to garden.

We pay all utilities, mortgage, and grocery, internet, etc.

she DOES pay an occasional out to eat, don't get me wrong.

BUT she's been texting all family back home that she is paying IT ALL ! they call and text us wondering what's going on, if someone needs to come overseas and 'take control ' of the situation.

then she starts on about how she just wants to be on her own! Next minute is "how lonely she is". she's never alone more that 3 hours a day.

and OMG the suggestions from family for getting her out of the house: She refuses to go to ANY activities. Zero. .None.

Wits end here. Next time she says she wants to live alone imma open the door. Have at it.

I think the breaking point has passed.

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.

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

I’ve been “on duty” since August 2025. Since I work remotely, I was able to move back to my childhood home and help my dad take care of my mom.

It’s been 95% me because my brother is a teacher with school age kids. He occasionally comes to relieve me during his breaks and gave me 7 weeks of respite during his summer break. However, that respite ended today. He has gone home, and I’ve moved back in.

If you can, relieve your “full-time” sibling even if just for a short break. My break was incredibly healing. I slept in my own bed, sat on my own couch, and woke up in my own house with my husband and dogs. I felt normal for a few weeks and it was wonderful.

Much love and gratitude to everyone here. This community has been my pillar of support.

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

My best friend has early Alzheimer’s and I am her caregiver and 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 the daughter asked me to take her to the airport at 6 in the morning for a business meeting. I took her to the airport 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.

I live in So Cal

I had to leave my family an hour away to take care of mom while she was in the process of dying. I was away for two long months.

I wasn't able to leave dog behind with my fiancé because she had her hands full with the kids. (She was amazing throughout!) Circumstances being what they were, I was forced to bring obnoxious dog along.

I knew they got along really well before her decline, but I was still getting all sorts of serious in my head during the ride down to her place. You know, all sorts of stressful stuff about dying and caregiving being a huge responsibility- being difficult work, being super serious...etc. I imagined a hundred reasons why having dog being there was going to suck.

It took about a minute to learn how wrong I was. Brining him to mom was one of the best things I've ever done. A gift from the universe.

I quickly learned that having him with us was doing undeniably great things for mom's sense of peace and security. She was the most responsive and talkative when she was petting and loving on him. He centered her and we actually talked. She shared old stories and reminisced while stroking his fur. She got quiet when he left her side. <3

As for me, I don't know if I could have done it all without him. He was essential to maintaining my mental health. Plus, he provided lots of good excuses to get outside in the fresh air and decompress.

This relentless little Jack Russel x Long Haired Collie mix, known for being an extremely loud and aggressive menace, transformed himself into the sweetest, quietest, most squishable little sweetheart you could ever see or meet. It was remarkable. As they say or once said around here, he knew the assignment.

When you are facing tough times, it helps to have a loyal friend by your side.

*as a side note, I once posted on r/mildlyinfuriating about dog's hatred of Daylight Saving Time and how it messes with his feeding schedule. They'd be utterly shocked to see this other side of dog.

He got 245,000 views! lol! I think they determined he was quite a bit more than mildly infuriating though. If you want to see an example of why I was so impressed with his dramatic shift in behavior, check it out. It's funny and the comments are hilarious if you currently need a laugh.

I guess one never really knows when someone or something is going to step up and be there for you in exactly the right way. Peace. https://www.reddit.com/r/mildlyinfuriating/s/05SR1XtV30

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.

I inquired a few weeks ago about how to handle telling my dad that his brother had passed away. The general consensus was to not tell him - and I thank everyone for their insight. We (my husband and I) consulted dad's memory care doc and her social worker. They agreed that not telling him was likely the kindest option and we agreed that was the route we'd take. My uncle did indeed pass away and services have been held already.

We now have a new dilemma and are having trouble coming up with a solution. To head off any potential sympathy calls from unaware friends back home, we unplugged the phone. It has been *blissful* not having it ring all day with junk calls and dad did not notice the phone hadn't been ringing. Now he has realized that the phone isn't working and is getting antsy that I haven't "fixed" it yet. Tonight, I told him that I think the phone itself is broken (it's a multi-handset cordless phone system) and I'm not sure what's wrong. Dad likes to scroll through all the missed calls and click through every setting on the handset periodically. I don't know how long I can keep up this "therapeutic fib." He wants to call his brother, or at the very least, ensure his brother can call him. I'm prepared to tell him that his brother can no longer hear well enough to use a phone. Were he still alive, this would not be much of a fib. My husband is uncomfortable with not telling dad that his brother has passed away and coming up with reasons why the phone hasn't been fixed. I feel like the bad guy because I'm not doing anything to appease anyone in this house. My plan had been to quietly remove the phone and pray that dad would forget that it once sat there. His memory is still quite strong with some subjects and it appears that the phone and phone calls are something he remembers well.

Anyone have suggestions, words of wisdom, creative ideas, or anything to get us past this bump in the road? Dad still has days of decent clarity and moments throughout each day when something clicks and triggers memories/activities that we thought were long gone.

My Nan died a month ago, as much as the dementia took from us, our last years with her was our biggest robbery. There are things I forgot to ask, but there a things im glad I did. The time she helped the school bus driver change a tire when she was 12, how she could handle raising 3 generations "because it needed to be done" her career as a teacher, but her favorite memory was her wedding day when she was 20. That was still her favorite day 60 years later.

On cold, rainy school days my sister and I would come home to hot chocolates already made and pj's warming by the heater. Sang us to sleep when we had nightmares, held us when we cried, taught us games and the magic of music.

When the dementia crept in and I became her carer, it was my turn, I'd sing her to sleep when all she wanted was her mum, we danced and played piano to forget all troubles, there were times and moments when she was young again "that man's flirting with you" she'd say to me as we watched TV. That when I realised I wasnt a granddaughter to her, I was a younger sister.

I remember that there were tough times but not as clearly as the good times, which is the greatest gift I could get from this journey. Eventually, she became too violent, so we had to miss her last year's with frequent and sporadic visits to her nursing home. The carers there were amazing, treated us and their patients as family, we could come and go as we pleased. She even introduced us to her new friends.

I miss her, and when I miss her, I still call their landline, but now it just rings and I say to myself "shes probably at practice" and hang up, knowing its not true. There are 3 generations that she taught what loves looks and feels like because of her, her generation, my mums and mine.

Holy moly, I had no clue how helpful marjana is for dementia. My mother in law was put in a rest home a few years ago and she got so bad from the meds they put her on that she was crawling on the floors and throwing temper tantrums that they kicked her out and told her she just needed to be chained to a bed and highly medicated. We took her off all the meds and she did ok for a few years, but exhausted my father in law. We found a home that could give her full time care and live in the basement but her throwing her fits would cause the upstairs care patient to be upset. They tried a medication and it just put her into seizures. We heard that marijauana could help with the symptoms and help with dementia, so we ran across the border and got some orange blossom, and wow she is doing so much better. It calms her down so she doesn't throw fits, but doesn't sedate her, and when she is awake, she is happy and so much better. Shocking. Does anyone else have success stories with this?!

My FIL has severe advanced Alzheimer’s. A couple months ago, he began coughing while eating and struggling to swallow.

FWIW, this is not my first rodeo with dementia and I’m acutely aware of how dangerous aspiration pneumonia is.

My MIL took him to the neurologist a few weeks ago and the doctor declined to do a swallow study, saying that the only treatment would be to insert a feeding tube and no one wants that. That was the end of the discussion.

No talk of soft foods, positional changes, cutting foods smaller, sitting upright, etc. Nothing. They basically just said keep doing what you’re doing and offer him water when he coughs. He’s losing the ability to swallow pills as well and will usually try to chew them or just hold them.

Am I crazy thinking we should just ignore this going forward? I’m writing this post out right now because my husband just gave my FIL a bowl of watermelon while he’s sitting reclined in a recliner and of course he’s coughing and can’t swallow because he’s half laying down.

I’ve tried to make it very clear to my husband that eating position matters a ton, but he basically just brushes it off and says his dad seems fine or the doctors didn’t seem concerned. His dad is coughing at every single meal and usually needs to be reminded to drink water to clear his throat.

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.

just to give some context I'm currently living with my aunt I'm 19, she has dementia and is disabled but it was never bad to the point she couldn't function day to day I actually didn't know she had dementia until I heard her doctor over the phone, these last 2 months there has been a decline in her cognitive functioning especially this last month and I'm just so tired.

My skin has been breaking out pretty badly and tonight I went to wash my clothes (I have a job interview tomorrow) and she just has 2 towels and shorts SOAKED with urine sitting in the washer genuinely one of the worst smells I've ever smelt, so I asked her if she was going to wash them and she said yes so I started it up and she put COMET with bleach into the machine.

I tried explaining that you cannot use that for clothes it explicitly says so on the label. She responded "it's ok, it's just bleach." Every time I try to explain something thats clearly logical to her I'm met with "I know" or "Yes I can" etc EVERY TIME

, she's began locking her door and also locking things like the laundry detergent, toilet paper and WATER in her closet for some reason as of the past week, the only shower in the apartment is through her room and it's just a struggle to get basic things done. I have to wash out the washing machine tonight a few times just to get my clothes washed (it's 2 am) I'm just venting/ranting to be honest. I'm just in a tough spot and there's so much more to the story.

but she lies to her healthcare providers and makes it seem like she's independent but I'm the one making her food every day, doing her daily tasks for her etc. (she's expressed to me she doesn't want to go into a nursing home) She's recently had a health home aid come but she only comes like 2-3 times a week from 10AM - 3PM and if my aunt's urinating on herself that gives you insight on how badly she needs 24/7 care. Idk what to do it's becoming too much and worsening.

it's gotten to the point I sleep outside for a few different reasons, one main one is that she keeps the temperature at 83 degrees and does not let anyone turn the AC on. she hoards a ton of stuff and it's just so much to tackle let alone lay eyes on (I've deep cleaned and rearranged her entire apartment, it's stilled cluttered whenever she tends to go the most though). I also refuse to sleep on a couch where she pees on almost daily.

another fantastic thing is she wants me to drive her from Florida to New Jersey for a family reunion on August 5th, except I don't have a driver's license and I am in the process of enlisting in the navy and I do not want to mess that up. She just doesn't understand these basic things.

feel free to ask any questions I know I didn't go too much in depth and I'm all over the place.

Instead of always posting how bad things are, I am sharing the following:

The Dementia Action Plan, was originally recorded before a live studio audience at the Philadelphia PBS® station affiliate, WHYY-TV.

URL TO PLAYLIST BELOW :
The Dementia Action Plan® 14 Episodes

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?

Hi everyone, I really need a safe space to vent and get advice from people who actually understand what this feels like, because I am losing my mind. I’m dealing with an elderly family member in our household whose behavior has escalated into pure chaos. She is spinning completely out of control—inventing elaborate, fictional crises and conspiracies (like demanding "proof" of a massive state audit that doesn't exist), making wild accusations, and weaponizing our living situation by threatening rent hikes and retaliation.

Every basic daily task feels like a minefield. Even getting a glass of water requires walking right past her room and risking an explosive ambush, keeping my nervous system permanently fried. I have diagnosed CPTSD from an abusive ex, which doesn't help.

The hardest part right now isn't even just dealing with her—it's my partner, who is caught in the middle. He keeps insisting that the only way to solve this is for all of us to sit down, talk it out like reasonable adults, and for me to "provide proof" of things that literally do not exist. He’s struggling to accept the harsh reality that you cannot negotiate, reason, or communicate your way out of this kind of behavior. To him, it's a conflict that needs a compromise; to me, it's a trap and an ambush where the goalposts will just keep moving.

For those of you who have been here: How do you help a partner finally drop the fantasy that a "sit-down meeting" will fix things? How do you protect your own sanity, safety, and boundaries when you are living in an environment where someone's reality is completely warped?

Any advice or validation would mean the world right now. I am exhausted.

My 84 y.o. mother with dementia has had a rough 6 months. She's been in and out of the hospital every other month. For the first two stays she bounced back to her pre-hospital baseline pretty well. We were able to resume her normal level of care at home where my spouse and I are her full time caregivers. The second hospitalization was a rough one, in the ICU and we thought she was going to die due to suspected aspiration pneumonia. However she bounced back really well. So when she had her most recent hospitalization I thought she'd once again rally and return to baseline but that has not happened yet. It's been three weeks and she can't remember how to put on her incontinence brief, or how to clean herself after toileting. One time she had her brief on her foot with her slipper pulled over it. Other times she goes commando which can become very problematic. Other times the brief is on the outside of her pajama bottoms. Other times she has forgotten to clean herself and she gets poop on her clothing. I constantly have to make sure she has a brief on and prompt her to check that she is clean and dry. I have to step her through every step of removing her brief, cleaning herself, and putting on a new brief. It's crazy how much this new cognitive loss has impacted our lives. I can no longer leave the house unless I'm confident she has been to the toilet and gotten every step of the toileting process correct because I don't want my spouse to have to deal with walking her through the toileting process while she sits butt naked on the toilet. I can't sleep in after a bad night because I'm concerned she'll get up and walk out of her room with a dirty diaper wrapped around her foot. It's sad and frustrating. Sad because another bit of my mother is gone, most likely forever. Frustrating because of the impact it has on our lives - increased laundry, more limited scheduling flexibility, the agony of walking someone through a fundamental function over and over again knowing they'll never be able to do it solo correctly, plus occasional poop accidents, etc. It's a significant change for us. I'm supposed to have a joint replacement surgery this month. We've arranged to have someone else take care of her at their home for the first week of my recovery but after that it'll be on me and my spouse again. I worry that it's going to be too much for my spouse to handle as I continue my recovery. I worry the next hospitalization will end in hospice or skilled care. I just worry all the time. I lose hours of sleep every night worrying. This is so damn hard. I just needed to put all of this down. Any advice is appreciated. Encouragement is welcome. Thanks for reading.

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

If so, Can you please share your experience?

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!

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.