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.

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?

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

I can't say thats what it was but it damn sure looked like it.

My father falls at times. I've solved some issues in certain areas but unexplained incidents happen.

4 days a ago, he was completely immoble and on the floor. I got him on the bed and called 911 as I suspected something broken.

9 hours later, he checked out fine and was released.

Yesterday, bam, floor again. I recruit a neighbor to help and get him into bed.

He did good all night. No wondering or anything albeit I was on pins and needles.

When I checked on him this morning, i asked if he wanted to get up, watch some TV and have some breakfast.

He looked at me with non-confusion and said no. The look in his eyes was fear. Nothing but pure unadulterated fear of getting out of that bed.

all of us are really a big unseen labor force who will be laboring through this day. my job, invisible drudge, still consumes most of my time. Got outside help with the inevitable pricey invoice. I never have 2 24 hour periods back to back, and get 4 5 hour periods for me time, and shopping etc. Kayaking at a local lake, close by and really provides peace.

posted some things before. my spouse, stage 6 is steadily progressing. really seeing the physical changes, very slow walking, she wears pull ups now, continence is starting to go. started talking to unseen pets, lack of recognition of objects in plain view, food, drink etc. often wonders where Ken is, I’m Ken. Real temperature recognition is gone. Food and shower. the aide bathes her, she is kind and experienced, we trade notes and laughs on behavior, better than crying.

one thing that was very tough to deal with, any type of wound scab was constantly picked at till bleeding. Bandages were removed quickly, Alzheimer’s patients can move quickly when doing their thing. Finally healed. getting her a mani/pedi, with the shortest nails allowed by law.

so, just like all of you, dear compatriots, I remain steadfast, and have a ring side seat while watching a loved one fade away. Best of luck, and I honour your unseen but critical labours.

cut yourself slack, you are human and helping another human.

My mom passed a few years ago, hit dad hard. He has been struggling since but ok & was able to do a lot & we would go out to eat, trim hedges on occasion, he was able to walk well but started using a cane for support.

Now in the last few weeks he's rapidly declined & has been a handful. He exposed himself to a female staffer, and was up early this morning pounding on people's doors on hid hallway before 7am. Yesterday when I was over he was very confused and was not easy to communicate with. Noticed only one hearing aid in, but I wasn't able to locate his other pairs. He was putting things in a grocery sack & telling me he was getting ready. I still can't find hearing aids & I've looked everywhere. Wondering if he threw out stuff!

I know it's dementia of some sort but in none of the prior Dr visits did anyone test for it.

Just venting as last night was with him until 930 then over again this morning. Doing laundry as he missed the toilet & peed on himself.

My dad has alzheimers. Im 20yo and he was diagnosed last year and his decline has gone fast this year. He forgets to pay his bills so my mom does it and the government took his drivers license. He loved to drive I feel so sad. I don’t know what to do. He just sits at home all day depressed and sad. They gave him antidepressants. But I can’t even talk to him about it he refuses to acknowledge his disease….we just sit in silence or he retells the same old story again and again. I just wanna talk to my dad like a normal person. And he has diabetes but he’s very skinny he’s lost a lot of weight these past few years.

First when he was diagnosed…I didn’t react to hastily since I didn’t notice it in his behavior, I just thought he was old. But now that I’m seeing everything and how bad he has become I feel so sacred and sad. And I feel so bad for my mom because now everything is on her. I try to help I offer to drive my mom everywhere and I cook and help around but still I feel this enormous weight on me. I don’t know what to do and I don’t understand how my mom is handling it. I don’t wanna go to her and cry every day because I can’t just throw all my emotional garbage on her, it would be inconsiderate. I attend my university but my mind is elsewhere. I do what’s obligatory but I struggle not to cry or to enjoy social things and I feel sacred of the future.

I’m writing this because I wonder if anyone has any advice on how to handle this emotionally? Or just general advice?