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.

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?

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.

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

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.

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.

​

....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.

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.

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?

I broke down crying in the dentist waiting room the other day.

My mom is mid to late stage and 87 years old. She has gotten much worse over the past 3 months or so. She sleeps more, eats less, has lost weight and is far less active now. I can sense that we are at some sort of crossroads after 3 or 4 years of mostly gradual declines.

I don't think I realized how much it was affecting me until I was at my own dentist appointment the other day and there was a woman who was all by herself in the waiting room. We started talking and she told me she was about to turn 89. I asked her if she drove herself to the appointment and she told me no, but she takes ubers all the time and book rides for herself. I also heard her interacting with the staff and she understood everything about the treatment plan, scheduling, her insurance...just a completely capable person regardless of age.

In contrast, before I left for the appointment, I had to argue with my mother for an hour about the fact that her underwear leaked and she had wet spots on her pants, and she needed to change her clothes and get cleaned up. She kept telling me I didn't know what I was talking about despite the wet spots on each side of her pants, the wet spots on the couch, and the stale urine smell.

Anyways, The woman asked me about my mom, I told her she had Alzheimer's and then I immediately broke down and started to cry in the waiting room. I had to get up and rush to the bathroom to try to compose myself and not make a scene.

Thankfully, no one said anything to me when I got back, I would have surely had to walk out of the office if they did.

I'm a 55 year old guy, and I've never lost my composure like that before in a public place. I'll never tell anyone I know about my reaction, but I did want to write it out so that I could try and process what I'm feeling in some way. And, this forum has made me feel not so alone when I read other's similar experiences dealing with being a caretaker.

With the holidays coming I thought it might be helpful to share a few items my loved one enjoys in case anyone is trying to find ideas for gifts. I’d love to hear things your loved ones enjoy also!

Loves National Geographic kids book with facts and pictures (doesn’t say “for kids” on cover which is bonus)

Bird feeders!

Lap blanket

New hard soled slippers

Sunday she was so agitated. We had dinner and night time drugs, started bed time around 8 like normal, and she couldn't stop pacing, chasing the dogs, fidgeting with her blankets and asking when "the people were coming". So around 1am I took her to the er. It's been months of this and I just lost it.

They admitted her, gave her 2mg more of Lorazepam and she was ready to jog a marathon. It was like trucker speed for her. Luckily she is very nice and mild mannered, everyone loves her, but man, they did a CT scan, and had to catheterize her for a urine sample. She ended up going to the psych ward so they could keep an eye on her and sent me home.

They kept for for two days, a lot of drugs and no sleep. None. Non stop playing with her ivs, folding laundry and trying to visit the teens who were committed to the ward.

Once they tried to send her home, and I asked for a Drs signed note she was cleared for full flights of stairs to even get into my house. Side note, no one will give you that lol

The patient advocates were really wonderful, and they have found a place for now. She gets 20ndays with Medicare and we are applying for Medicaid.

I slept through the night for the first time in 3 years

How do you diagnose Alzheimer’s disease? If an MRI is performed, what findings might be seen? Does it show brain shrinkage (atrophy), and if so, how severe is the shrinkage?

How is the patient doing now? Has there been any decline in memory or cognitive function?

MRI Brain (Screening)

1. The study shows a 1.8 × 0.9 × 5.5 cm (TR × AP × CC), sized T1 and T2 hyperintense subacute intraparenchymal haematoma in the right parietal lobe subcortical white matter. It shows a complete surrounding haemosiderin rim. No evidence of adjacent abnormal vascular flow voids is seen. No evidence of underlying mass lesion is seen.

2. Evidence of small acute infarct is seen in the right external capsule–lentiform nucleus region, showing restricted diffusion on DW images appearing hyperintense on FLAIR images. No evidence of haemorrhagic transformation or significant mass effect is seen.

3. Multiple small discrete and confluent chronic ischaemic signals are seen in bilateral thalamo-capsulo-ganglionic regions and periventricular and subcortical white matter of both cerebral hemispheres.

4. T2-weighted hyperintense signals are seen along the horns and wall of both lateral ventricles, suggestive of leukoaraiosis.

5. Few old microhaemorrhages are seen in bilateral cerebral hemispheres.

6. Ventricular system and extra-axial CSF spaces appear prominent, suggestive of mild diffuse cerebral atrophy.

7. Cerebellum and brain stem appear normal.

8. No intracranial space-occupying mass lesion is seen.

9. The intracranial vessels display normal flow void.

10. Pituitary gland, suprasellar and parasellar regions appear normal.

11. There is no shift of the midline structures.

12. The orbits and calvarium appear unremarkable.

13. Mild mucosal thickening is seen in bilateral maxillary and ethmoid sinuses.

MR Angiography of Cerebral Arteries

1. Evidence of mild eccentric luminal narrowing (20–30% stenosis) is seen in the cavernous segment of bilateral internal carotid arteries; however, no obvious reduced distal magnitude of flow is seen.

2. Anterior and middle cerebral arteries are normal in course, caliber and magnitude of flow bilaterally.

3. Vertebral arteries, vertebro-basilar junction and basilar artery are normal in course, caliber and magnitude of flow.

4. The posterior cerebral arteries are normal in course, caliber and magnitude of flow.

5. No evidence of arterial aneurysm or vascular malformation is seen.

6. Impression

7. A 1.8 × 0.9 × 5.5 cm subacute intraparenchymal haematoma is noted in the right parietal lobe subcortical white matter, with a complete surrounding haemosiderin rim. No adjacent abnormal vascular flow voids or underlying mass lesion are seen.

8. Small acute infarct in the right external capsule–lentiform nucleus region, showing restricted diffusion on DW images and hyperintensity on FLAIR images. No evidence of haemorrhagic transformation or significant mass effect is seen

9. Multiple small discrete and confluent chronic ischaemic signals in bilateral thalamo-capsulo-ganglionic regions and periventricular and subcortical white matter of both cerebral hemispheres.

10. Few old microhaemorrhages in bilateral cerebral hemispheres.

11. Mild diffuse cerebral atrophy and periventricular leukoaraiosis.

12. MR angiography of brain vessels reveals mild eccentric luminal narrowing (20–30% stenosis) in the cavernous segment of bilateral internal carotid arteries; however, no obvious reduction in distal blood flow is seen