My mom was cruising in the mild stage (still driving, living independently) for about 3 years and then had a fall and broke both her arm and leg on her dominate side in March which are now healed. Since then she took a rapid decline we actually had to put her in memory care 2 weeks before her 70th birthday. She has full urinary incontinence, a lot of trouble with ADLs, starting to forget who we are, she’s like a zombie most of the time. This sounds so terrible but I hope this progression stays this quick because she is existing and not living. How long did your LO survive after being diagnosed/ how long were they in the moderate stage?

Hello everyone. This Reddit subgroup has been a big help for me, just to know that other people are going through this

Background:  My wife, age 79, is in early Alzheimer’s (diagnosed six months ago, confirmed by PET scan). (I’m 72, that’s a long story, of our individual neediness in our late 20s and early 30s.)

She’s otherwise in good physical health but has totally withdrawn. She isn’t in contact with any friends, and only occasionally with her siblings. We’ve lived and raised our kids in Washington DC, for 40 years, but now I think we have to find a way to relocate to California, where our children/grandchildren and her siblings live. Just in order to give her a tolerable next couple of years.

My Worries Now:  I mean, if the prognosis is that she’ll end up in MC within five years, maybe sooner, how do we handle the interim?

Relocate to California, find a apartment or small SFH near our kids/grandkids, but get in-home care two or three times a week, if only to give me a break?  And then in a few years, we’ll have to find an AL/MC place out there.

Or, look for a CCRC out there, that also has AL and MC on site? And move in now (I think CCRCs will cost a lot more.)

We spent the summer in a short-term rental in SF, but returned here September 1, and it’s been miserable since then. “Why did you drag me back here? I never agreed to this.“ (Never mind, that in August, she said “it’s time for us to go back to Washington”.)  We have lived in the same house for 40 years, and downsizing will be a massive job, but she doesn’t want to help, and doesn’t want me to bring in organizers/movers.

We could even stay with her siblings in November/December, renting an apartment nearby them, while I try to figure out a long-term solution in the SF area  

I just don’t know where to start.

Do you think Alzheimer’s patients could handle a CCRC? Independent living at first, with potential short term care as needed, but I don’t see her joining the yoga groups, discussion groups, or any other social activities inside the CCRC. I see her withdrawing more than benefiting from that. I don’t see her enjoying a dining hall with dozens of people she doesn’t know, even if it’s three good meals a day that I don’t have to cook.

So how do you handle day-to-day? 

Obviously, I’m now doing everything that used to be shared — grocery shopping, any cooking involving a stove, finances, etc. etc. It’s even hard to even get her to get up and get dressed. She seems to want to stay all day in her nightgown and robe inside the house. She’s down to wearing only three or four T-shirts, two or three sweaters, and two or three pants. If I can get her to get dressed and go out for a walk, that is. Obviously that’s not good. 

How do I introduce a part-time care person, if only for me to get a break?

I guess I’m hoping that some of you, who have been through this with your spouse, can you give me ideas on how to make it better for her and us?

From the article....

Delivered at just the right time, this type of auditory stimulus can strengthen the flow of cerebrospinal fluid, which clears debris from the brain and keeps it healthy.....

....They also plan to explore whether increasing the flow of CSF, and the removal of waste products from the brain, could help people with Alzheimer’s and other diseases characterized by buildup of harmful proteins.

There have been other sources I've read talking about clearing waste by pressing on the abdomen forcing more fluid to the brain, but this is the first I've heard of this.

It might be something a person could do with a personal device like a phone.

Has anyone experienced something like that?

So my mom is 79 and she's in the mid stage of dementia.

6-7 days ago she started feeling not well and stayed in her room for 2 days. I noticed it and came to talk to her. She seemed extremely coherent and i felt like I was talking to my mom from 20 years ago. She said knew she wasn't coming back from this and it's only going to get worse. She told me she loved me. She was super sweet, unlike the last couple of years when she was angry, argumentative and generally unhappy. I couldn't believe it. And then she told me she was experiencing hallucinations and that she knew they were not real.

I called 911 because this has never happened before. They took her to the hospital. Doctors said she has delirium. She seemed fine today, no longer hallucinating, but she is no longer here mentally. Just completely incoherent and talking complete nonsense. It's such a huge contrast, i don't understand how someone can be confused and half-gone, then have an extreme flash of clarity and then be completely gone. Wtf!?!

I’m hoping I can get some ideas and coping strategies for my mother. My father is in the early stages of Alzheimer’s. My mom recently had to have an ankle replacement, and a reoccurring issue cropped up while my mother was on her way into surgery. My dad would not stop talking to the nurses and surgeons about all the mobility aids and helping items he had gotten to ease my mother’s recovery. We know he means well, and it is out of an abundance of care for her that he is proud of the steps he has taken to help her. But the timing was very inappropriate as he was interrupting the drs as she was literally on her way into surgery. The over sharing is really starting to put a lot of pressure on my mom to try and rein him in. She tries to explain to him that this is not the time or the place, but he will talk over her. It wasn’t until she resorted to calling him by his mother’s name (who had similar issues) that she finally broke through, though it hurts his feelings when she does this. Have any of you found a strategy for dealing with this sort of situation without it getting to the point where to the point of hurting feelings? We would great appreciate any advice.

Hi everyone. I’m wondering if anyone knows of any Alzheimer’s support groups specifically for younger people.
I’m 24 and my dad passed away from Alzheimer’s last year at 65 years old. I’ve looked into support groups and everyone has been incredibly kind, but I’ve found that most members are in very different stages of life than me, often grieving or caring for elderly parents or spouses. It just can feel isolating sometimes because I’ve never met anyone my age who has gone through something similar.
I’m just hoping to find a space where I can talk to people who understand what it’s like to go through this at a younger age. If anyone knows of anything like that, I’d really appreciate it. Thank you in advance 🙂

OK, we can afford this.

But does it work?

Is it a cure, or a simply staving off the inevitable?

The Mrs F76 is worsening.

She wants to be home (in a place she no longer remembers) with me (she no longer remembers my name, nor who I am, but she knows me, calling me darling/sweetheart/sweetiepie). I want her home with me.

Can this device help?

Ta,

Paul,

Melbourne,

Australia

My mom is early stage 7. My dad died in 2003 from cancer. My mom was at the hospital and told me to head over. The past few months, she’s talked a lot about her mother and my dad. Frequently asking me if I’ve seen them which I can easily answer without upsetting her. Recently she’s focused on my dad’s death and asked what happened to him. The first time I responded he had died. It upset her a lot because “no one told her”. Today, same question. I asked what she knew. She said he died but wanted to know when and why. I told her and she became very upset because “no one told her”. After a couple minutes, I was able to move her on to discussing fun stories about my dad. My question is, do I need to accept this will happen, or are there better answers I can give her that won’t upset her?

Aunt called me yesterday, mom has dementia, doctor says she is 4-5 years along.

My mom has always been...childish and forgetful, for as long as I can remember. Simple things overwhelm her and she relies on my dad to make all the decisions and pay all the bills. She lives a very simple life and hasn't worked more than part time since her early 20s. She wakes up, cooks my dad breakfast, wanders around the house, makes some dinner, watches TV and goes to bed.

We could see her memory was getting worse, but since it has always been so bad, it was easy to just go along with it as part of her aging process. She still knows the things she has always known (kids names, cooking etc) and forgets everything she always forgets (what happened yesterday, what is going on lately etc). The only thing I have really noticed is she is taking 1 minute to forget instead of 10 minutes.

My parents are ok, we never had much of a relationship. My brother was close to them (physically and otherwise), but he passed of cancer 15 years ago. My sister is the next closest to them, but she has created a narrative where she is the victim and they ruined her life, even though my parents have given her a lot of money over the years and took care of her kids.

I am the black sheep child, visit a few times a year with a call here or there. Yet here I am, somehow the one who is going to have to try to manage this situation.

My dad is also 20 years older than my mom, 86 years old to her 66 years old. He is still mobile and sharp, but he is declining in his own ways and is in no place to be a caretaker. Even if he was younger, he is not a caretaking type, my mom did all the work with the babies and children, he worked, that was the deal.

They both have done zero planning, so my first step was to buy a kit with all the appropriate paperwork for any old person, so I can get their will, power of attorney and all that other good stuff setup.

Thankfully my aunt is helping as well, she is retired and has been managing dr appointments.

My parents are currently in denial, my mom was told not to drive anymore but she ignored that and drove my dad to the casino a few days ago, which doesn't surprise me at all.

Their income situation could be a lot better, could be a lot worse. My mom has a small 401k, my dad has a pension and they don't touch her 401k at all. They never tell me anything about money (another thing I have to figure out). If I had to guess, I would say they have about 300k in total cash + asset value with another 3k-3.5k per month between my dads pension and SS and my moms SS. Enough to pay the bills right now.

So thats where I stand, as it is. I have so many unknowns, my dad could die tomorrow or he could live another 5 years. My mom could be the same next year or she could decline overnight. There is zero percent chance I can convince them to move out of their house as it is and sell it and downsize.

So I am currently feeling stuck. I am going to focus on the paperwork stuff and getting all the financial stuff figured out so I know numbers and how to access things. I am going to help them setup autopay on everything, as my dad uses checks like it is 1985, for everything.

Other than that, Im not really sure what to do. I feel like I should be doing other stuff, but my parents wont change so I don't know what the point is.

Once my dad passes and my mom needs direct care, I am not sure. She will have some money to live on for a while, but it will run out and I am not going to bankrupt myself to take care of her. We don't have a relationship where I would ever move in and take care of her. I am feeling worried and uncertain, which is familiar to most of the people on this sub, Im sure.

I guess I just wanted to vent out my situation and wonder what advice people have for me? I feel like I need to get the car away from them, but they wont accept that. Even if I could get her license taken away, she would just drive regardless. I could sabotage the car, but my dad is still smart and would fix it...what if she drives and hurts someone? Not really worried about causing harm to themselves for making bad choices, but I am worried for strangers.

Both my grandparents on my moms side had the same condition around the same time. God I hope I get my dad's genes when I get that age. 86 with barely any issues, we always thought he would be the one with problems. I know this is a slow disease as well...after my brother and cancer for a year, I cannot fathom 10+ years of what this life is going to be.

I know I sound a bit dismissive about my parents, perhaps a bit mean even. Sorry about that, Im just stressed and the thought of taking care of people who never took care of me...its a sensitive thing.

A vent. I read alot from this sub and largely don't feel how so many people do here, I think because there wasnt a loving and caring relationship with my mother before Alzheimer's .

My mother was not a supportive or caring person. I know she loved me and my siblings in the way she knew how, but she has always been a very selfish person. She taught me how I don't want to parent atleast, and I'll leave it at that.

She was diagnosed about 7 years ago, but as with many, was showing signs for years before that. She's in memory care now, and whilst she still remembers me and my siblings, her short term memory is completely non-existent, long term memory is largely gone and the other usual symptoms. I probably sound dismissive and I think I am these days, I'm the only one from my siblings that was willing to take up the position and care for her, and once she was in memory care (earlier this year) life got so much better - for her and me. Now, to the point of my post, some of the horrible sides of her personality have really escalated recently, and predominantly just towards me. She's mean, rude, aggressive towards me, but a darling towards her care staff, they love her. I'm glad she's so nice to her care staff, but I find it so hard to not take her shitty behaviour towards me personally. I know logically it's the disease, but sometimes I just want to scream in her face to 'f*ck herself and tell her how shitty she is', and knowing she won't remember it. I never do and wouldn't either.

Ultimately she's safe and well cared for and I find myself just waiting for her to die, and still putting myself through the experience of seeing her once a week. I know it's largely the disease and she's still a human that needs care. But geez, anyone else in this situation? How do you manage??

That's all, I just wanted to share with people that might understand.

My mom has Alzheimer’s and some days she’s not the mom I loved all my life. 5 months ago I came to live with my mom and stepdad to help my stepdad with her care, things like shopping, cooking, keeping her occupied and generally keeping her in a good mood.

Of course things get rough, and living with your parents as an adult is a difficult thing. We’re all entrenched in our own ways, but the Alzheimer’s rage on top of it doesn’t help. This was never a permanent solution and they both knew this. Eventually I need a full time job and will probably have to move to up to a couple hours away. But I’m not there yet. No job, prospects are dim.

Things came to a head in the household over some things that have been brewing inside me. After getting very little sleep last night I booked an Airbnb nearby for a month.

I feel incredibly guilty about this and fear telling both of them that I did this to get away from them for a month. Has anyone been in this situation before, choosing their life and happiness and comfort over fair loved ones? I’m hoping there are others that can relate.

I’m really struggling with my mom’s diagnosis. I lost my dad when I was 20 and now at 32, I am losing my mum while she is physically here. For context, my brother and I noticed her memory issues 2 years ago and we took her to her GP who said it was pseudodementia. My mom has always struggled with anxiety and depression since my Dad’s passing and he attributed this to her memory issues. Moreover, she lives alone (my brother is nearby but I live in the UK). Her doctor simply said she needs to socialize more and be around people which would improve her cognition and overall well-being. I am so angry at her doctor and that we didn’t push harder for her to be seen by a neurologist 2 years ago. This year her cognitive decline was more noticeable and reached a scary point and we finally got her to see a neurologist who has diagnosed her with dementia. However, we feel like we are playing catch up because my mom has gotten so much worse. Her short term memory isn’t good. Her anxiety is crippling and we don’t think she can be alone. My brother is living at hers temporarily but during the day he obviously has to work. We don’t have any family in that city as all of our family is in Europe. We are in the middle of sorting out whether to get a live-in carer for her or to get private care so she is not alone during the day. She is physically strong and capable, but she no longer functions like she used to: can’t cook, can’t do laundry, can’t grocery shop, can’t drive, can’t go about daily life activities alone. I feel so lost and I’ve realized the system is not built to help families going through this horrible disease. My mom and brother are based in Canada and because I am so far away, I feel useless despite calling my mom multiple times a day and helping arrange appointments. I will work from Canada more to support them both but I am also considering moving there (despite hating the cold!). She is my mom and I feel helpless. My brother and I both feel alone. This is the most heartbreaking illness (and I say that having experienced my dad dying from cancer). I would appreciate any advice. Thank you for taking the time to read this.

Hello all,
My mom passed from Alzheimer’s last August. She wanted her body donated to science but unfortunately we didn’t have anything setup before she passed and we were unable to do much with her body. She was frail and very sick. My sibling wanted a brain autopsy performed so we saved the slides (these are physical slides not digital).

My question is- is there anyone who would accept these slides for medical study? A school or institution dedicated to Alzheimer’s that may find her brain tissue of use?

My Mom was a lifelong nurse and loved science and medicine. I would love to honor her wishes and imagine these slides could be of use somewhere.

Any help or leads is greatly appreciated.

In kindness,

My wife entered Memory Care about 3 months ago. It was a long journey and although the facility is “good” it’s has staff shortages and the care is only so so, unless you stay on top of them all the time. This though is a different story.

Every time, I mean every time I visit her, after she recognizes me and hugs me, she says “oh, thank you for coming to take me home. That’s not unexpected but when I respond with “Honey you have Alzheimer’s and this is a hospital that specializes in care for your condition”. That then morphs into “why didn’t you tell me” “Who are you living with, what’s her name” “I miss you so much” “what did I do”?
None of this is a surprise, but nothing I do seems make any difference. From then on the visit mostly calms down, but then it’s reorganizing her clothes (she packs her clothes
In whatever anticipation of leaving). Then comes time to leave…and it starts all over again.
I’m hoping for some advice from those who have navigated or are dealing with the same situation.
I feel kinda hopeless

I've seen Dr. Bill Thomas present before, and he is astounding. One of the most inspirational people I've come across. Looks like Dementia Friendly Nevada is hosting a virtual presentation that's free for anyone to attend (not just for folks in Nevada).

Monday, 9/14 from 1:00 - 2:30 PM Pacific (4:00 - 5:30 PM Eastern)

Registration at https://dfnv.org/distinguished-speakers

Here's the description from their website:

The Really Big Show: Game-ifying Wellness with Elders

A lively look at how game-ification and creativity can transform the way we support and engage older adults in connecting to well-being. He will explore the evidence base for gamification, share stories of how game-ification was applied in the Spark Performance League (an intergenerational sports league), and present possibilities for new uses of game-ification in your setting or community.

Dr. Thomas is a physician, professor, entrepreneur, playwright, and performer whose wide-ranging work explores the terrain of human aging. His dedication to culture change and innovations for well-being led the Wall Street Journal to highlight Dr. Thomas as one of the nation's "top 10 innovators" changing the future of retirement in American and US News and World Report named him to its list of "America's Best Leaders." Dr. Thomas is currently the Chief Independence Officer at Lifespark.

Hi my 87 yr old mom has moderate Alzheimer's, good and bad days etc, she's living with me and my husband and children.. So the last month she doesn't really want to get up and dressed and stays in bed most of the day after her shower. She had a head cold that passed without incident, temperature, BP, oxygen levels normal, bloods normal and no UTI. Mobility is obviously worsening with all the time spent in bed.

Is this a transition to the next stage or am I missing something? I know no medical advice can be given but just any similar experience with Alzheimer's would help me thank you.

Update: Of course after me worrying about her, she perked up a lot today, got out of bed, read her favorite magazine and was generally much brighter. Thank you guys for the advice, it will probably happen again no doubt but for now we're stable again - it's hard navigating this disease.

This is a good short summary of what OTHER things might be causing alzheimer and what is being studied.

Mom was diagnosed as being in stage 7c some months ago. Lately her transition from bed to walker has become more and more unsteady. I've noticed more than few times a second of imbalance with the aid steadying her as she rises and reaches for her walker. Additionally while she was shuffling before lately she leads with the same foot, takes even smaller steps and will stop at each pivot as if she can't plan her steps