She moved last month and so far she LOVES it. Previously she was home with my dad who has cared for her diligently for the last 8 years. He was very tired very depressed and she was lonely and following him around everywhere. Now she is surrounded by people. She is a social butterfly and just loves hearing the noises around her. She tells us that she feels safe there because she knows there’s always someone around and she’s never alone. She says the food is great. It helps that she gets dessert with every meal and often cookies passed around throughout the day) there are cats in the home and she loves that too. Other visitors bring dogs and there is always something happenning there. Music, singing, games etc Once she told me she is surrounded by her family. (She’s not,but the fact that she thinks of the staff and other residents as her family makes me so happy).

I have never posted on this sub but I figured reaching out to others who are dealing or have dealt with caregiving might help me. Five years ago I started noticing that my mom was forgetting things and repeating herself. Fast forward those 5 years, she is currently in a bed on her last days. My mom was living independently with an aide a month ago, she was still walking and talking incoherently but still being able to feed herself. I moved her into an Alf as it was becoming harder to keep her at home with just an aide during the day. My mom has always been a very strong-willed person so my biggest fear was that she would just shut down when being taken out of her apartment and put in a living facility. It has been nothing but a disaster from the moment I moved her into the ALF, within 3 days of being there she stopped eating I had to take her to the hospital for dehydration, in the hospital they barely did any kind of care I had to fight just so that she could receive an IV, she wasn't eating in the hospital either I could only get her to drink ensures. She was discharged from the hospital and sent back to the ALF and she just kept declining she wouldn't accept the shakes or the water anymore. They started thickening her water and she was holding it in her cheeks, she lost her ability to swallow and now I am just watching her wither away. The moment I saw her decline I applied for long-term care, which is why she had an aide at home but she had a hospital stay in March and she was sent home with hospice at home. So she already has hospice services, I don't even know if this post is more to just get my feelings out there because it seems like those around me just don't get it they keep telling me what I should do but none of them have been there during this time. I have been grieving my mom for the last 3 years, and soon I'll have to grieve her permanent loss. I was told if I sent her back to the hospital that maybe I could convince the doctors to do a feeding tube but I decided against it because I don't think that that would have helped bring her back. I don't know if I made the right choice. The hardest part of this all is that she has progressed so fast, she went from just forgetting things quickly and repeating herself to incontinence, delirium, aggressiveness to this, where she now is shutting down. I feel guilty that I wasn't her caregiver, that I didn't try to take care of her myself. And I don't know if this is a common feeling or not, I have two small children which made taking care of her a difficulty and I knew that which is why I didn't take on the immediate caregiving role to begin with. I don't know I feel like I'm rambling in this post and I'm sorry, I just have so many emotions and I don't really know who to talk to about them.

Hello all,

My 94 year old mother has always been the most docile, quiet, sweet mother you could have.

We had to place her in a memory care unit because she had started wandering and was no longer safe at home. She didn’t like memory care and did have a couple incidents with aggression. She cornered a worker and wouldn’t let her leave and grabbed another resident’s walker. They prescribed Sertraline and she seemed better.

Well she had a seizure and went to the ER. She was out of it for about 12 hours and when she came out of she was so violent. She was hitting, kicking, spitting and staff and myself. They put mitts on her to soften the blows and prevent her from pulling her IVS out. She was insulting everyone, calling names, said we were liars and cruel. After 8 hours of this I had to leave. They had to restrain her overnight, but she was quite sleepy this morning. I am sure she is exhausted

Has anyone Loved one’s experienced this? Is there hope she might mellow out a bit?

The kicker is her memory care facility says they won’t take her back due to the seizure diagnosis and to be honest I don’t want her back there when she is this violent.

The hospital said it is up to us to find her a new facility and they don’t want to keep her cause the only thing wrong with her is the behavior. They put her on seizure meds and figured that solved the seizure problem. We’ll see.

I am worried they will discharge her to our house or just send try to send her to the memory care center that doesn’t want her. It takes time to find a new place and I don’t know that the hospital will give us that time.

Any suggestions, and thank you for reading if you made it the whole way through.

Trying to find law in the state of Florida!! Any legal help here or can show me the Iink under FL State law for 911 rules... Question: If 911 is called for a caregiver/spouse person who is incapacitated, is the ambulance required to transport the ALZ spouse in the ambulance too? And then, is the hospital required to care for the AZL patient while their spouse is incapacitated, etc? Trying to find another reason to tell our dad that he needs a professional caregiver for his ALZ wife. He thinks if he had a stroke or heart attack, an ambulance would welcome her into the transport, and then watch over her till someone can come get her... Signed, a daughter that lives 2000 miles away. Any FL legal info is appreciated.

I posted a few days ago about my MIL who wandered and left the house (She came back). Fast-forward to yesterday, her agitation just continues to grow. She was in a bout of delusion and no longer recognized her son,to the point where she was convinced he was an intruder trying to harm our son. We tried to reassure her, distract her, give her some food, etc. She was not convinced and her anger and agitation grew. She started yelling at him to leave the house and told us she was going to take him out. She found an empty bottle and hid it like a weapon that she said she was going to hit him over the head. This continued to escalate eventually we had to call police bc she wasnt backing down from him need to get out. They took her to the ER and ran labs, no UTI and discharged her.

We hoped we had more time before we got to this juncture. But with our young son at home, we need to find a different arrangement. We are going to start looking into memory care or some other alternative arrangements. We also have a follow up with her pcp in Monday.

I guess my reason for posting this was more of vent and needing a little validation that you all would make the same choice. We moved her here in hopes of making some a few more good memories before the disease took her but she's now a danger to herself and others and our options are running out.

Hi everyone, my mom recently got diagnosed with Alzheimer’s and I’m hoping anyone can share information and/or experiences that may be helpful for me as I want to be prepared in the best way to help her. I am currently a college student but I want to help in any way I can. Currently it is very early in the disease and she just has short term memory loss and forgets conversations we have had. Please share any and all information you guys might find helpful including coping with the diagnosis. Thank you and have a great day everyone.

the neurologist suspects my mom (48) has early onset. i don’t even know what to think or do right now. how can i get through this? and how can i help? i just can’t believe its happened to her so early in life. i’ve already noticed that she’s a different person. much more dependent, very anxious, sleep problems. she’ll wake up at 3/4am and just not know what to do. she also hyper focuses on one task she has to do (therapy at 2pm) all day until it’s time. i’ve been trying to take her on walks in the morning, meditate, take her out to lunch. she gets in these really happy moods after we do something or after she talks to a friend or her therapist. at first i thought this was menopause, but i was abroad in spain for a year and just moved back home when i realized how drastic her change has been. my heart is so heavy rn. i guess im grateful to have some time with her. it’s hard though because i feel like i’m already grieving the version of herself that’s already kinda gone.

Hey guys, new to this forum and just wanted to vent a little bit. My dad (74) was diagnosed with both Alzheimer’s and Parkinson’s. I’ve known about the Alzheimer’s for a few years now, approximately since right before I went to college. I’m 23 now and live about 3 hours away working my post grad job but I visit every other week or so.

Recently my grandmother has had a few falls while under his watch and I think that the guilt has worsened his condition. Last week when I came home he was hallucinating and extremely confused. It was so scary to see him like this - usually the extreme confusion is only right after he wakes up and goes away pretty soon. Of course the slowness and movement/ memory changes are noticeable all the time but this was an extreme change. We found out he wasn’t taking his meds for a few days and since then he’s improved a little bit, but all I keep thinking about is when the time comes that he’s in this state and it doesn’t go away.

My mom currently cares for him but she works and isn’t able to be around 24/7. We’re currently in the process of finding a caretaker for the future when we decide he definitely needs one.

I guess I just needed to talk about how scared and angry and sad I feel about everything. My dad was and is one of the smartest, funniest and most caring people I know. I can’t believe that this horrible disease is changing the fundamentals of who he is. Every once in a while he’ll get so angry out of nowhere and I’ll think how he would’ve never had that reaction before. He was the most gentle person I knew. Or he’ll make a joke that doesn’t really make too much sense and I’ll think about how quick-witted he would always be. There was a time growing up when my mom and I were always fighting and he was truly the closest person in the world to me. My brother passed away when I was young so I’m an only child now and that makes everything ten times more difficult. Just to feel that no one understands this gradual feeling of loss, even my friends who I love but aren’t going through anything like this. And to top that off I’m right in the middle of applying for med school and I honestly can’t even focus on anything.

Does anyone have any advice or even just words of support? I feel like every day gets harder and I just don’t know what to do.

I’ve spent a bit of time in this community. A lot of shared experiences and grief. I’d like to thank those that have taken the time to ask questions or share their experiences. Reading these posts helped, a lot.

For my father, the process has finally completed.

A few notes from my experience to share:

Burnout is real, especially caring/visiting - it’s better to spend time together in small doses consistently rather than do too much and feel fatigued or fearful that you don’t visit at all.

For those that think keeping your loved ones at home is the right thing to do -

This disease doesn’t just rid you of your memories. It’s brain damage, you loose your mobility, you fall, you break bones, you eventually need full time transfers between bed, toilet, eating etc

The changes aren’t linear, tomorrow can be very different to today. Which presents danger to your loved ones.

For those who can seek a nursing home - it is by grace that you do so. It is not selfish, it is the right thing to do.

For those that are unable to find a nursing home or full time care. My heart goes out to you, I wish I could help.

I feel guilt, a lot of guilt. I think it’s inevitable to feel this way for something we can’t control.

Anyway, Thanks again to this community.
Best wishes to all.

Is it wrong for me to secretly hope and pray that my grandma who has dementia passes away so that my mother, her full time and only caretaker, can finally have a break and get back to living her life?

My wife has been diagnosed. Right now we are doing fine at home. I am 82 with some health issues. We do not have long term care insurance. She has no children so if I pass her sister will probably have to put her in a home. What does a home cost? In Southern Cal? Thanks

My mom (diagnosed in 2019 at 66) is currently in late stage 6 of the disease. She is still fairly mobile, but her walking and posture have become more uncertain over the past six months (stooping over, shuffling). She requires full assistance for pretty much all ADLs, and really can’t communicate anymore, just a lot of word salad.

She was put on 4mg of abilify last summer by her neurologist at the Dolby Brain Health clinic after a serious bout of agitation, and it really did seem to help until the last few months. But holy hell, getting her off a previous med (amitryptaline) and onto abilify was a literal 6 week nightmare where she got so much worse while she adjusted to it and coming off the other med.

Recently, her geriatric psychiatrist visited and voiced concerns that she was experiencing some side effects from the abilify, namely akithisia and tardive dyskenesia, which can cause restlessness—something we’ve noticed in the last few months, but without the previous agitation. She recommended that at the least, we reduce her abilify dose, and more importantly, that we switch her to Rexulti or risperidone.

1. I’m DREADING the idea of taking her off a medication and putting her on another one after our last experience with withdrawals, especially since she can’t really communicate.
2. I’m not sure whose opinion I should trust more here—neurologist or geriatric psychiatrist? They don’t really work within the same network, so I will need to facilitate everyone getting on the same page. But what if they disagree?

Has anyone experienced a crossroads like this?

In year 6 of this and I’m…tired on every level. My dad has advanced Parkinson’s so I’ve gotten a crash course in these diseases but it’s still so hard to predict and make good decisions.

Husband (70 years old) diagnosed 4 months ago, recently has become very quick to anger. I went to the grocery store and came back 40 minutes later and he accused me of being with my boyfriend. I went to the bathroom and came back into the living room and he asked if I put perfume on. He said something is off. I was pretty pissed as I have never ever cheated (and what would I do at a grocery store!).

At voting yesterday he got angry because they had a "challenger" table which is part of our election set-up (law). I was able to get him to vote and leave before he melted down.

I don't know how to do this. He's always had a quick temper (not with me) but it's getting worse already. So frustrated, thanks for listening.

Hello! We are at the point for my mother that we will have to move her to memory care very soon. I am wondering what to expect in terms of her emotions - of course I anticipate a rough transition, but will she eventually become happy to see us when we visit? What do we say if she is mad? Right now she has extreme agitation toward my dad who is her full time caretaker, is there a chance this could improve her perspective toward him?

Any and all insight is welcome. It is an extremely difficult decision but past the point that we need to do this for her health and safety.

​

....but a mountain none the less.

My father fell hard on his shoulder over a month ago. Had him checked out and it was just bruising.

Two weeks ago he fell again and expressed back pain. He was checked out at the hospital, cleared and sent home with no meds or anything.

I watched this man suffer in pain for two weeks until he could no longer stand and slept virtually all day curled up in a ball.

I sent him back to the hospital. Fracture of T12 vertebrae. Now we're waiting for a place in skilled nursing/rehab.

I'm pissed off as to why in the hell was a broke back missed 2 weeks ago and why no prescription meds? WTH?

When I was a little kid, I could count on two things at Grandma’s house: her pot roast and a package of Lorna Doone cookies waiting for me.

Later, dementia slowly took her mind. But it never took her eyes. Every time she looked at me, they told me I was loved.

She’s a big part of why I do this work. I want every family walking through dementia to know that the person they love is still in there, and that this time together still matters.

So here’s my ask: savor it. Sit with them. Eat the cookies. Take the pictures and videos, even on the hard days, even when it feels awkward. Record their laugh, their voice, the way they look at you.

Someday you’ll be so glad you did. I would give anything for one more video of my grandma in her kitchen.

My father in law was diagnosed yesterday with "preclinical alzheimer's". Minimal to no symptoms. We are devastated and overwhelmed. I know it's impossible to predict what the future holds, but the doctor seemed optimistic given how early we caught this. We are still so scared. I would really love to hear what you wish you knew at the beginning of this. Advice on medical decisions, clinical trials, lifestyle changes, family dynamic changes, anything that will help start to process and start figuring out our next steps.

Well I moved my mom to Memory Care and she has been there one full week. Aside from feeling depressed and sad that I had to move her there I feel like my stress hasn't gone anywhere. Since she has been there she has managed to fall almost every day. The staff have increased their intervals of checking on her - even keeping her in the living area so they can keep an eye on her and yet she has still managed to fall down. She's increasingly confused and agitated - which I did expect somewhat with her being new to the location but I did not expect her to fall so much. It's gotten to the point where I dread seeing the facility's phone number pop up on my phone because I already know it's going to be another fall report. The first weekend she spent there she was sent to the ER because she hit her head. Thankfully, there was nothing wrong with her but still. It didn't exactly help her ease into this whole thing. I will be visiting her on Saturday to try to spruce up her room but I guess I thought this move would actually be a relief and so far it has been nothing but stress.

I'm 31, an only son and have been taking care of my mom for the past 4 years since she was diagnosed with early onset dementia in her mid 50s. Thankfully I've had some really great caregivers helping me along the way.

She's declined a lot over the past year, especially after a bad fall this summer. At this point she's almost completely nonverbal, bedridden or in a wheelchair, incontinent and needs help with pretty much everything. She still eats but very slowly and mostly pureed food. Every now and then she'll recognize me and smile or babble something which is always nice to see.

Her current caregiver has been amazing but I can tell she's struggling with how demanding things have become. After a lot of searching and a few rejections, we finally found a nursing home that accepted her and seems to have a pretty good reputation. The social worker who came to assess her yesterday also mentioned she may be ready for hospice.
I've pretty much made the decision to move her there but man it's hard. I keep thinking about how she's going to be in a completely different environment without the caregiver she's grown accustomed to, and obviously I won't always be there either.

I guess my biggest question is how much does the familiarity of her surroundings really matter at this stage? I know she still recognizes certain people but I have no idea how much she actually understands anymore. Part of me thinks she'll be better off with a full nursing staff looking after her, but another part of me worries about taking her away from the only environment she's known for years.

Idk what I'm really looking for here, just kinda sharing my situation as I don't have many people in my life who've gone through something similar. For those who've moved a parent into a facility at this stage, did you feel it was the right decision? Did they adjust okay?

I just want her to be comfortable and taken care of for however much time we have left together.

Does anyone have experience with CJD? My LO was diagnosed yesterday.

Hi guys. My mom (62F) was diagnosed this year. I’m looking for some good books on how to support her. I won’t be her primary caregiver but I want to know how to be there for her and how to support her.

My husband of 32 years (57 yo) was diagnosed with early onset in July after 18 months of my sons and I trying to get him to see a doctor for memory loss. He is still able to work full time at this point. I have spent the last few months learning about this disease and reading all of these wonderful posts. My issue is that he will not take the time to learn about it nor is he open to discuss it. He says ‘I’m going to die and that’s all I need to know’ The only thing he has been interested in was when the doctor explained Leqembi Infusions to him. He heard ‘slow the progression’ and that’s all he cared to hear. He has had 2 infusions and the first MRI showed no signs of ARIA. Any ideas on how to encourage him to learn what is happening to him and to take an active approach in his care?