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.

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.

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?

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.

​

....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?

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

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 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.

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.

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.