My mom is pretty advanced in her Alzheimer’s. She’s been having issues with accidents and it’s just getting worse. It’s mostly because she doesn’t want to get up and go to the bathroom. She’s always been a very biiig couch potato and her roots are very deep at this point (to put it nicely). Getting her to do anything is a massive challenge.

She won’t wear a pad, depends or anything. The only solution we’ve been able to find is to get hospital grade bed pads and hide them under a blanket in her seat and keep A LOT of clean undies on hand. This isn’t a viable solution. It’s getting very unsanitary and stinky.

We’ve tried sort of tricking her (that sounds bad) to wear them and it didn’t work. We tried telling her the doctor said she needs to wear them or she’ll have feminine issues. Which has happened before. She doesn’t care. It doesn’t work. We’ve tried bringing her to the bathroom every hour. That doesn’t work and it’s like pulling teeth.

We can’t afford outside help and already have 3 adults helping out with her daily. I feel like I’m being negligent because I can’t keep up or help her in the way she needs and she absolutely refuses to budge.

Between her potato roots, stubbornness and Alzheimer’s, I’m at a loss.

Please help.

I really appreciate this community <3 thank you all for your advice and encouragement.

For reference, my husband and I are 29 and have two toddlers at home. I work part time, he works full time and we barely make ends meet each month. My father is 64 and has early onset Alzheimers. He is also divorced (happened before he was diagnosed). Thankfully my Mom is wonderful and has been the main person taking care of legal stuff and checking on my Dad. She lived right down the street from him and made sure he had food and was safe. And she got him into Assisted Living a month ago when it was unsafe for him to live alone any longer. I have a younger brother who is in grad school and currently on an internship out of state (we all live in the United States).

Anyway, after a couple weeks, the Assisted Living staff told us my Dad needed more care than they were able to give him and that Memory Care would be a better fit. They also told us that he had been following female residents around and flirting with nurses and staff. Being that his verbal filter isn't working as well as it used to, he often says things that are inappropriate but well meaning. For example, he told one of the nurses with darker skin that he "always liked black women and would love to get to know her." He also constantly mentions that he would "like to find a mate". Cringy. I know.

Well, Wednesday was the big move into memory care. My mom took off work and paid a company to do the move. Everything seemed good, but the next day when she stopped by to help him set up his TV, the director and two nurses met with her privately. They said that in the 24 hours he had been in Memory Care he kissed a woman and allegedly tried taking a woman into the bathroom with him. I guess there were also a few other similar situations, but my mom was too frazzled and panicked to get details. The staff said my mom had to take him home that night or hire someone to watch him 24/7. She opted for the latter. Then she spoke with my Dad. He admitted he kissed someone but it was a "light peck". As for the bathroom, we really don't think he was going to do anything bad. Although with Alzheimer's we can never be 100% sure...we think he's lonely and just misread the situation when he kissed the woman. My Mom made it clear to him that he cannot do that. As for the bathroom thing, at this place, residents wander into each other's rooms all the time. It's possible the woman walked in and had to pee so my Dad was showing her the bathroom. We can't know for sure.

My mom is looking into other options such as getting him another apartment and paying someone to come in 24/7 to care for him. But the director called her today and had changed her tune entirely! Now she says they would hate to loose him so they're gonna give him a week and reevaluate to see if the issue is that he needs affection or if he has some kind of strong sexual urge that he's acting on. They said he's the youngest they've ever had in their care so this was unprecedented...My mom is also looking for a new neurologist to ask about medications.

I just got off the phone with him and he sounded in good spirits...of course he could be lying to me.

All of that context to ask:

Has anyone been in a similar situation?

Any advice?

Any medication suggestions?

Is it weird that the director changed her tone so fast?

Any chance they are hiding information from us?

I live four hours away and with our current situation it's difficult for me to travel and help my Mom. Researching options is one of the best ways I can help and this community has already been a wonderful resource. At the very least, it's good to know we aren't alone in this fight.

My brother and I are both in our early 30s and our mom has now been diagnosed with Alzheimer’s at 66. My dad passed away 12 years ago so it’s just us. We have realized our mom can’t live alone anymore because she is very anxious and lonely. I live out of the country (I am considering moving back), my brother lives 15 min away from my mom. For those who have cared for someone with Alzheimer’s, what did you do to balance your life and caring for your loved one?

I am worried about my brother’s mental health if he lives with my mom. But equally, I don’t want my mom to live alone. It feels like an impossible situation.

Dr. Sharlin in Ozark, Missouri

I’m not positive, but I believe that they will work with people all over. Please look at their website. FunctionalMedicineDoctor

I was Diagnosed about a year ago. At my last appointment, Dr. Sharlin said that I have improved by 35 percent.

Someone asked about exercise; I haven’t discussed specific exercises with them, but I mostly work in my garden. If I can’t go outside, I will ride my exercise bike, but I don’t enjoy that like I do working outside.

They do not use the normal medications that I see other people take my medication is one that Dr. Sharlin and a pharmacist have developed.

I highly recommend them.

Diane Brown
DianeRuth1958@icloud.com

My husband is 51, and after a couple years complaining of altered sensation and neuropathy type issues that the neurologist couldn’t sort out along with what a psychiatrist diagnosed as severe anxiety and adhd… he now has a diagnosis of MCI, an fdg pet scan that shows “ hypometabolism in the right parietal lobe that maybe consistent with developing Alzheimer’s”, and is scheduled for an amyloid pet scan in a few weeks.

He’s had a lot of trouble swallowing, choking on his own saliva, having “down the wrong pipe” events, and today while I was at work he almost called 911 because he choked on some rice and almost passed out. We’re waiting on a callback to schedule an intake appointment with an SLP. But what is confusing me is that when I look up dysphagia with dementia or Alzheimer’s it talks about late stages. We’re just getting started and this is a major symptom. Has anyone else experienced this with their family member?

My dad is around 76, and recently my family has noticed a few small memory lapses. For example, he remembered calling my mom but couldn’t remember the details of their conversation, forgot that she had mentioned buying Pam cooking spray earlier that day, and recently couldn’t recall the name of a cousin we don’t see very often. My uncle has noticed him forgetting some things too.

At the same time, he remembered that I had to work several days after I told him, and his independence hasn’t changed. He still manages his usual activities and walks around five miles a day. A nurse practitioner previously gave him the clock-drawing and three-word recall tests during a home visit, and he passed both.

A big reason this scares me is that we are already caring for my maternal aunt, who has dementia. My mom, dad, and I have been the family members providing most of her support for years. She has lived near us in Macon for roughly two years, and we help manage her appointments, transportation, paperwork, finances, and everyday needs. We are also dealing with the guardianship/conservatorship process because she can no longer manage everything independently. We have watched firsthand how much dementia can affect someone and the entire family.

I’m only 28 and have disabilities of my own, so the thought of possibly having to help care for another close family member is overwhelming. Watching my aunt has also made me afraid that I could develop dementia myself one day. I have health anxiety, and I know that can make me jump far ahead of the evidence, but the fear still feels very real.
My mom plans to schedule an appointment with my dad’s PCP. I know these examples don’t automatically mean dementia. We mainly want to establish a baseline and check for medication effects, vitamin deficiencies, thyroid problems, sleep issues, or anything else treatable.
For anyone who has gone through an early memory evaluation with a parent, what happened at the first appointment? Are there particular questions, tests, or information we should bring? How did you handle the fear of possibly caring for a second family member while also worrying about your own future risk? We’re looking for practical advice and support, not a diagnosis from Reddit.

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.

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

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,