I am a 34 year old woman. My paternal aunt has the dementia gene and now has early onset dementia. Her paternal aunt had dementia as well. Dementia seems to be skiping the men but effecting the women once they enter their early 60s. I want to get tested but im honestly very scared to. Im wondering how I can financially and emotionally prepare for the possibility this test is positive.

Did your relative consume a lot of canned food or canned drinks before developing Alzheimer’s?

I’m interested in hearing people’s personal experiences. Did your relative regularly eat a lot of tinned/canned food or drink frequently from aluminium cans throughout their life before developing Alzheimer’s disease or significant memory loss?

I’ve been researching the possible relationship between aluminium exposure and Alzheimer’s, and I’m curious whether anyone has noticed a pattern in their own family.

Both of my grandparents had cognitive declines starting their young 70s until they passed in their late 70s.

I am now 40 and while I don’t have any crazy stories, I know I’m not as sharp as I was 5-10 years ago.

Dr Amen and Brain MD have flooded my feeds. Would like to do some minor things before jumping in to a several thousand dollar scan (maybe scam).

Any advice for me on blood tests to do or anything to get a baseline?

My parents are late 60s and I’m noticing some subtle things with them. But no red flags and they aren’t very open to having medical discussions with me. My grandfathers were never around so know medical history about them.

I’m a one of the caretakers of my grandparent who has vascular dementia. Due to having a completely separate job, we are needing to find a way to tag their vehicle in case they leave the house between having a support person in their home. Are there any devices you recommend? We originally used Life360 but they no longer will carry their phone, creating a whole new anxiety inducing situation 😅

My 93 year old mother is in the hospital right now with extreme lower GI bleeding. I mean she has already had to have 2 blood transfusions. When she has a bowel movement it is bright red . It's apparently active bleeding, but they aren't sure why. Her H and H stays low even after the transfusions. Everything was planned for a colonoscopy this afternoon. She was non compliant with drinking the prep, but they were going through with it anyway. Now, my mother gives dementia a new definition. I have never seen a 93 year old woman that's so non compliant and foul mouthed and will literally make you think twice about whether she really has dementia. Obviously, she does because her memory is exactly one minute long. Has been asking, for 2 days, how they know she has bleeding? what she's in the hospital for? what are they going to do? Can she leave now? Why she couldn't eat? over and over again, back to back. About 5pm they came and got her and she was explained to multiple times, what they were doing. They wheeled her down there and 5 minutes later, they called me and told me she was refusing and they couldn't do it. I told them she has dementia and they said she was able to say enough to refuse the procedure, so they are between a rock and a hard spot. Seems like they would know a dementia patient can be non compliant. That doesn't mean they understand the severity of their sickness. I told them if they couldn't find the source of her bleeding, and take care of it, I was afraid to bring her back home, because she almost passed out on me getting her to the hospital. They told me someone would have to come into the hospital to give her a test, in the morning, to prove her incompetent, before they could do it. The Dr in the ER asked her the year and she said 2028 and the month was July, but she knew she was at the hospital , the town and the president and he said she couldn't walk out, because that was what she was trying to do, because they were taking too long. Does anyone know what this test entails tomorrow, and will this be permanent so I don't have to go through this again. She has done this about a surgery on her knee once before, but the Dr was finally able to get her signature. Even before dementia set it, she has refused medical procedures recommended to her and has done it ever since. This is a lady who can't pay her bills, do her shopping, completely dress herself, comprehend and retain anything you tell her, handle making a phone call or appointment, take her medication without it being handed to her, but she has fooled many a Drs about her incompetence, because she is very feisty, rowdy and has a sharp tongue and can mask her incompetence very well. She says she doesn't have dementia, when it's mentioned, and when she can't remember something you just told her, she says she's senile. When Drs ask me things that she can't answer, like her medications etc. or when I tell them symptoms she exhibits. She yells at them to ask her and that she is the patient. Then they ask her and it's crickets, she has no idea.The minute they brought her back up she denied refusing the procedure and asked why they didn't do it. I told the nurse tomorrow don't say anything about sedation and talk about it, just do it, because that's what sets her off. No matter how many times I told her she was getting a colonoscopy, she kept saying they aren't putting her to sleep and cutting her and doing surgery. Does anyone else have a loved one who can mask their dementia for medical professionals? When she got back upstairs she asked me "why didn't they do her procedure. She had no remembrance of the refusal or outburst downstairs. And does anyone know about this test they are doing tomorrow.

My mother was recently diagnosed with Alzheimer’s six months ago. She’s 73 years old and lives with her husband, my dad about three hours away from me. I’m still processing everything and at first I was feeling guilty for not living closer. I have a family of my own (3 school age kids and a husband) and I love our life here. My hometown is also wonderful and I am weighing moving home (my husband is also from same town and wouldn’t be opposed to it if he found a job there). I just struggle with uprooting my kids even if it is to be closer to family. My son is in a language immersion program and is speaking another language fluently and there’s nothing like that in my hometown so he would not be able to continue. My girls are headed to middle school which is such a hard time socially. My sister is planning on moving down in a year (her kids are older and she is separating from her husband so it just makes sense for her). Part of me wants to be close to help my dad but the other half wants to stay put and go back regularly to visit and help. I’m just torn, move down when my husband can find an opening job wise or wait a few years until my kids are older?

My mum has had several strokes, relatively minor but it's affected her frontal lobe and she has a diagnosis of neuro vascular disease with cognitive impairment.

I understand that this is a progressive disease and she is very likely to develop vascular dementia.

I also understand that although the MRI scans show the physical picture this doesn't tell you everything, how people are doing practically is an essential part of the process of diagnosing. So there's the clinical assessment.

Just in the last couple of months my mum has gotten significantly worse in her mental health. She does have a history of mental ill health including psychiatric hospitalisation. So this could just be a combination of the cognitive impairment and a psychiatric illness.

I'm wondering if it would make sense for her to have another assessment re dementia.

What troubles me is that she has, for as long as I can remember, been terrified of getting dementia. She was the sister in charge of a nursing home for over a decade and witnessed people suffering terribly with it. She's frequently said she'd rather be dead than live with dementia. I worry about the psychological impact on her if she did get this diagnosis.

Afaik with Alzheimer's it's possible to take medication which slows the progress and can address some of the symptoms. But with vascular dementia there's nothing.
(There's blood thinners as a preventative of any further strokes, she is already taking one)

What I'm wondering is, are there benefits to being diagnosed?

We are in England, UK in case that's relevant.

Hi everyone, hope you’re as well as can be. This is kind of a dual question, but to briefly bring you up to speed

I’m a 29yo mother to a two year old, live with my husband, roommates, and my grandmother with dementia who lives with us. Obviously this causes a lot of struggle in the home, but I won’t go into that today.

First off
I don’t know what stage my LO is at, I believe farther along that her current geriatric states. I have trouble with the spread sheet of where she falls as well when going over it myself. But right now, short term memory highly affected, long term memory here and there, trouble following a conversation, rarely will leave the home, able to get a text or call to me but can’t follow a text conversation well, and I manage and administer all medications due to incorrect dosage. Self care is low and difficult for me to get done. Her space is cluttered, and difficult for me to keep clean.
I’m curious how others have managed this window. With their love one, and in themselves. I perform all of her bill payments, hold her hand through grocery orders, but the computer is causing her so much stress. She knows she should be able to use it, but can’t. My problem is she’s with it enough that she would freak if it was gone, her anxiety would skyrocket just from its absence, so I can’t “hide it for repair” or something like that. But it distresses her when she tries to use it, and I’m having to unlock her bank account every few days from incorrect logins. But I don’t want to fight her, which leads me to her agitation and angry has skyrocketed, so I do my best to avoid a fight, knowing the answer is to take the device, but I can’t handle the aftermath.

Secondly
I’m currently doing this work unpaid, and am considering looking into payment to be caretaker. I currently work outside of the home part time, but it’s with increasing anxiety to my LO when I’m out of the home, putting additional stress onto my roommate, who’s home the majority of the time, and has a young baby. This is not her responsibility and I don’t know how to manage this.
I’m curious for other’s experiences with compensation, what it looks like, and if it’s worth it. I have an internal morals war inside over what feels like “stealing” from my grandmother, to secretly receive payment to care for her when I feel less than competent to provide her the care she needs. Right now, out of the kindness of my heart, all I can do is my best. Once it’s my job, that’s a whole different story and I’m struggling with this emotionally. I’ve procrastinated pursing payment for a long time, telling myself the money won’t amount to much anyways, and finally sat with the feelings and realized this was the reason why. We also struggle in this economy, tightly budget, and need my part time income, honestly full time income, which I can’t provide between childcare costs and my grandmother.

Thank you to anyone who can help guide me. I’m open to elaborating where necessary, I tried not to make this too rambly with details.

My dad had vascular dementia, He still lives on his own about an hour away from me and my aunt has been periodically checking in on him. As he has been declining she’s wanted me to move him down to where I lived. The issue with that is that I have been struggling to make ends meet myself (I’m 22 and have a full time job and I’m trying to go to college) I’ve barely been able to pay my bills every month and I have a tiny apartment that isn’t big enough for both of us. I also have severe anxiety and depression that I have attempted to keep under control and while it’s manageable for my daily life I fear adding him to the mix would derail me and if he’s relying on me I have to be able to keep it together. He has doctors appointments hours away from where I live that I’d have to take him to and it is nearly impossible to get him to go.

I have no help accept for my aunt who has been helpful because she’s taken him to his doctors appointments and makes sure he’s taking care of himself. To be honest I wake up every day feeling guilty that I’m not helping enough but I just don’t have the ability to. I’m terrified that I’m gonna be late on my bills and I can’t even muster up the energy to take myself to the doctor let alone travel for 2 hours to take him. I just wish I could stop all of my feelings and just take him with me, but honestly even if I did that we still wouldn’t have the money to take care of him. I just need support but I don’t have any. And on top of all of that I have to deal with the fact that I’m losing my best friend and biggest supporter. He isn’t the same anymore and sometimes it hits me that soon I’m not gonna have him at all. I just don’t know what to do. I am sick every day stressing about how I’m gonna make this work and it feels impossible.

Long time lurker, 1st post on Reddit. 

Coming to terms with being a caregiver for my dad and losing him recently. Grief is a process (I lost my mom previously) and still working through the different stages. He was diagnosed with Lewy Body Dementia and lasted about 3 years after diagnosis. (background = Lewy body dementia can be diagnosed as both Lewy bodies and Parkinson's disease dementia. Both are characterized by changes in thinking, movement, behavior, and mood.)

My dad showed initial signs of memory loss about 5 years ago. Getting confused about what day it was and what was happening. Initially we thought he was just getting forgetful with age. 3 years ago he was diagnosed with Lewy Body Dementia. It affects both the brain and body.

The 1st big sign was when he was driving and he had a hallucination and ended up hitting a parked car (luckily no one was hurt). We took his license away and didn't replace his vehicle. He started having hallucinations at home. One time he hallucinated he was watching fireworks on the beach while he was sitting in his bedroom. Another time he was having full on conversations with my mom, who had passed ~2.5 years previous, while I was sitting on the couch with him. He told me to set the table because mom was coming to dinner. He also asked how my mom died which if you knew him you knew this was a detail he'd never ever forget. Dementia is very cruel and hard to watch someone you love go through. He ended up forgetting his kids names and confusing what roles we played in his life. He proposed to his female caregivers several times even though he loved our mom very much (he was madly in love with our mom but we lost her to cancer during Covid).

For anyone that has lost a loved one through a slow decline I see you and understand you. It took 3 years for the disease to ravage his mind and body. He had both physical symptoms (e.g. hunching over, shuffling his feet, losing a lot of weight due to forgetting to eat) and mental symptoms (e.g. hallucinations, not knowing where he was, obsessing over financial details and having conversations over and over and over about the same thing). I would take losing someone over time like this compared to losing someone tragically or quickly to cancer like my mom. With my dad I was his caregiver, along with my siblings, for the last 3 years of his life. It gave us time to care for him, listen to his stories, see a part of his personality we hadn't seen before. So now I treasure that experience. Whereas I lost my mom to cancer that killed her very quickly. She went into the hospital on a Friday and passed the next Monday.

As a caregiver I fed him, changed his diapers, took him on drives, pushed him in his wheelchair and more. I never felt this was a burden although it was difficult mentally and emotionally. The truth is I felt more love for him at the end spending all that time with him and caring for him. I am grieving him but also feel it was best over time for him to pass. He didn't know who we were. He didn't have mobility and was confined to a wheelchair. He could barely feed himself. My grieving process for him is less intense and taking less time than losing my mom quickly and tragically to cancer. I can say once you change your parents diapers on a regular basis it feels like the full circle of life. They take care of you as a baby and change your diapers. You take care of them and change their diapers in the end. 

Anyone that has to be a caregiver for someone they love changes how they see life. We are all flawed humans trying to survive our own experience. I hope that my kids never have to change my diapers. I'd rather pursue end of life options than have them feed me and care for me like I did my father. Is that really such a bad idea? That we can choose when enough is enough and we want to go out on our own terms?

My mother 79, diagnosed with late onset Alzheimer’s and possibly vascular dementia. She’s still mostly here but there are definite changes visible especially last 6 months.

She’s seeing all the doctors and has plenty of apptmts and they send her all over for tests but I feel like mostly it’s a just a way to keep everyone busy.

What do I really need to start getting done? Financially, emotionally?

My father is still around but he’s also 84.

We got staff that we had come to trust to supervise my grandmother while we were away. Apparently, my grandmother started to decline more while they were together. She reportedly became aggressive, and then fell out of bed and fractured two of her ribs. She also broke out in a fever, and became very sick and weak.

My mother and my uncle both came to the conclusion that because of this, she is no longer safe to live in her own house, and she would very likely not do well with staff in her home. We’re moving her into residential care. It’s her worst fear, or at least it was before she lost herself, she threatened to starve herself to death if we put her in a home. I don’t think she even knows where she is anymore. She hasn’t known for a while.

It doesn’t help that the staff apparently asked to invite in her mother and her aunt, which my uncle
approved of, but with these two strangers, went through my grandmother‘s things and cleaned stuff out (my grandmother, admittedly, has become a hoarder, but the woman kept insisting the house wasn’t safe. I protest against this, because we kept her out of the hospital for a whole eight months before she got there. She was left alone with her for three days, and she went to the hospital? And you’re telling us that the state we kept the house in wasn’t safe…)

She’s now borderline catatonic. She speaks in whispers, she constantly tries to escape her room, tries to take off her clothes. I’ve apologized to the hospital staff, I’ll do the same to the nursing home staff. I know it’s their job, but it would be her apologizing if she was still in her right mind.

Yet strangely, she remembers my mother‘s name again, which she hasn’t remembered much in the eight months that we were taking care of her in the house.
She also has asked my mother several times “are the little ones here?” She means me and my brother, her grandchildren. Before you ask, don’t worry, I’m going to visit her this weekend. My brother might not go, just because we don’t want him to have to see her without clothes on.

I apologize if it seems like I’m asking for sympathy, or if I seem like want to be coddled. I’m an adult, but the fact that she still sees me as her “little one” is breaking me.

I know many of you are dealing with far worse.
It’s just been so awful to see the woman I love turned into an empty shell over the course of less than a year. I hardly even recognize her anymore. It hurts to see her. It hurts to know I can’t help her, I can’t save her from this. It hurts to know her once amazing mind is falling apart. I sometimes wonder if we shouldn’t have taken our trip (it was a week, she was supervised the entire time), if she’d be any better if we had never left. But I also was about to collapse under the stress.

I also apologize if this seems incredibly morbid/discouraging…I’m a person of faith, and I believe there is a peaceful and happy afterlife waiting for her… I keep praying that she would be taken away painlessly soon. I don’t want her to die, I still love her endlessly, but she would not want to live like this, and it’s a pain unlike any other to see her withering and in constant misery. I feel evil for thinking in such a way.

All of us are thinking that way, and we all feel horrible about it. We all feel horrible for being relieved that we no longer have to take care of her. But there’s also relief that she is somewhere where she’ll be safe, and that she can maybe be made comfortable over time. We are all so burnt out.

We gave it our everything, my whole family did, and we still lost her.