IamA person living with Alzheimer's disease. AMA
Hello Reddit. My name is Jeff and I will be answering questions on behalf of my grandfather (who has Alzheimer's). He was diagnosed about a year and a half ago. Doctors have not really given a timeline as it affects each individual differently. He has been getting worse with each day.
I will ask him your questions and will respond with his answers. He is fairly mentally stable today and has agreed to do this. I am doing this to raise awareness of the disease and to answer questions for people who are interested. You can also ask me questions.
Edit: Thanks for the questions and support everyone. It is nice to see that some people are interested in this type of thing. He is tired and ready for bed so we are calling it a night. I will try to answer more questions (if there are any) later. Thanks again!
Edit 2: He's up and ready for questions for a little while. He's feeling pretty good this morning.
Edit 3: Okay I think we're finished. Thank you everyone for your kind remarks. We both enjoyed this.
He claims he always remembers, but in reality, he only recalls something afterwards only half of the time. He usually forgets daily tasks and most recent events. I think he also creates events from his past and believes it.
What are some things you know you will remember for the rest of your life, despite having Alzheimer's?
He claims his navy days. And his family. I just hope he actually will.
My grandfather was in the Navy. He had severe Alzheimers. He always, always remembered his Navy days, even shortly before he passed. I wish your Grandfather well.
Thank you for your kind words.
Can you tell us what a normal day consists of?
Getting through it, really. He feels like he always has something to do and it has to be done right then. We really just have to go along with whatever he does.
What does he eat?
That's actually a good question. He claims his taste has gone completely. He says he just doesn't like anything anymore. But he eats pretty much anything, salad, steak, vegetables, chicken, etc.
Planes are a little to spicy for him. He prefers trains.
Thank you for doing this AMA. I work on the Alzheimer's helpline. I would highly suggest any caregiver, family member, or person with dementia give the helpline a call. There are Master's Level Social Workers available 24/7. They can help families develop care plans and they are also there to just lend an ear if you're experiencing caregiver stress. 800-272-3900.
Does he know that he has this condition? If not, did you or your family try to explain it to him?
He says he does. But he claims everyone else is forgetful all the time and we're trying to make him crazy. I guess it depends on his mood.
Did he ever think this would happen long before the diagnosis? I'm convinced in 30 years I will have this outcome. Did your family "know" before?
I never noticed it. Every now and then he'd forget something but I just took it as old age. After he was diagnosed, I was the only one that seemed surprised. Maybe I was just lying to myself.
I have a neighbor who sometimes wanders out of the house unnoticed causing a good deal of stress for the family, does anything similar happen to you?
No, not yet.
Does he keep some sort of ID on his person at all times? Medical bracelet, etc.? That's a terrifying thought.
Just his drivers license. (He doesn't drive anymore, though)
When did you realize you had Alzhheimers? Would you say you ignored the signs?
"When the doctor told me". And to him, they weren't really signs. They seemed real.
How often is someone around to monitor his activities? Does he respond more to one person that another when he has memory lapses?
How were you first diagnosed?
My grandmother is always on alert. He responds more so to me or my father (his son). Sometimes he won't listen to anybody.
From what I understand, his doctor noticed something was off about him and tested him.
If there's one thing that you want to tell people about having Alzheimer's that people either don't know or misunderstand what would it be? This is to both you and your grandson, if both of you feel like answering.
His words: "I don't remember.." "No but seriously, it's not THAT bad, at least, to me it isn't" I think he truly believes its not that bad because.. well, he has Alzheimer's. So I don't think he can grasp how bad it is.. or maybe he can but he is avoiding it. As for me, I would like people to know that they don't mean any harm. They really can't help what the say, feel or do. Just be patient.
My grandmother had this and she just laughed at herself when she forgot things. Apparently many of those diagnosed become very angry. Does he do this? Thanks oft doing this
He gets angry very quickly. He doesn't really laugh at himself. It can be very hard to deal with.
As someone with Alzheimer's, would you ever be willing to experiment with nootropics to potentially alleviate your condition? Mainly I am talking about Noopept, which is rumored to be a 'cure' for Alzheimer's, or at least some of the symptoms, but I know no official studies have been done on it. Just wondering if you've ever looked into this kinda thing...
He refuses assistance, so no. He doesn't want to feel degraded.
Do you think that mental exercises and activities would help prolong your grandfather's Alzheimer's Disease? Have you ever played chess or any board games together?
It WOULD help if he actually did it. But he gets annoyed and upset very quickly. It's hard to get him to sit down and play chess or something.
What is one thing you hope you will never forget?
"I would prefer not to forget anything. But to answer his question, family."
Is there anything he would like the families of someone with Alzheimer's to know? Like anything he finds upsetting or distressing that they should avoid. Or things that make it easier for him.
Also, how have you and your family coped with the changes?
"It takes a whole lot of patience. You might need some Xanax." And basically, we just don't really confront him. It makes it worse. As far as coping, we really don't have a way of coping. We just do the best we can and stay optimistic.
My own grandfather had Alzheimer's and declined fairly rapidly once he was finally diagnosed, but there were always certain people and situations that grounded him for lengthy amounts of time. Have you noticed any such such anchors yet and if so what are they?
He is declining pretty quickly. It's pretty scary. He seems stable whenever he has company over, especially children and grandchildren. And his stability varies on visits.. Could be several hours, could be and hour and a half.
Have you found any alternative medicines / therapies in any way helpful?
EDIT: Wow, downvoting a potentially helpful question?? By alternative therapies I'm not talking about pseudoscience like homeopathy, rather herbs or other natural supplements that might be helpful. Pesky hivemind, think before you downvote. ಠ_ಠ
Not as far as him forgetting things. Some medicines help with his mood swings.
Doe he have one of those LifeCam things? You wear 'em and they take pictures every few minutes, or if there's motion, unless you flip it around or turn it off for things like bathroom breaks. Supposedly it's been found to or (I forget, un-ironically) or was hoped to be found to help patients like him.
It was originally out of Microsoft Research but it got spun off into a product in the UK, I was sad because it was too expensive for me to justify. Basically it was like a "cat camera" only for humans.
No he doesn't. And even if he had one he wouldn't wear it. He doesn't want to "degrade" himself. That's why it's difficult for us to help him.
do you think you may get it one day?
It's a possibility. Or my father could get it, which means I'd have to go through this again. At least I would be more prepared.
How did you feel or react when you found out?
Any advice to someone that has a chance of being diagnosed with it?
I was shocked. I never had to deal with Alzheimer's before him and I didn't know what to expect. My advice is to enjoy your time with the person while they are mentally present. And don't take anything personally if they become mean.
What age was he diagnosed? And my father is increasingly having trouble remembering where he puts things and other random events, but can recite to me the stock prices of the day and other things he's really interested in. Should I be concerned? I don't know much about Alzherimer's, is it selective forgetfulness or is it all or nothing? Thanks!
He was 75. It's hard to determine what is just old age and what could be Alzheimer's. Look for other symptoms other than memory loss. Does he get aggravated very easily? Is he suddenly uninterested in things that he used to enjoy doing? Does he isolate himself? If he does then he should consider seeing a doctor. But don't jump to conclusions just yet. That's too much stress for anyone to handle.
Hi, I'm probably too late but I got a question. Has he been doing any physical activities as there's research that shows that physical activities can reduce the deterioration of the hippocampus volume which slow down the progress of the disease?
Yes. He has a regular exercise routine. He walks for fifteen minutes on the treadmill and rides an exercise bike for another twenty minutes every morning.
Are you prepared to send him to Alzheimer home if there is the money to do so, if at one point you are not able to take care of him?
He doesn't want to do anything like that. But if he get's bad enough, we're going to have to do something about it.
I hope you sign back in and answer some more questions. I understand that up until recently Alzheimer's was treated as a "tough shit" disease, but now that baby boomers are getting to the age where Alzheimer's and Dementia are a very real possibility there has been a shift in philosophy to accommodate the much larger population of senior citizens. I understand treatments are basically still in their primitive stages, but have you had access to any treatments, and are they effective?
Also, I wrote a short story a while back about a son dealing with a father's Alzheimer's, so I ended up doing a lot of research about its effect on the well-being of family members, may ask if, and if so how, the condition has taxed your familial relations?
Thanks for the question. Treatments are very much in their primitive stages. I personally haven't done thorough research on the disease. So far, no treatments are effective.. aside from some mood swing medication. And even then.. eh.. not so much. As far as relations amongst family members, I really feel like most of them are in denial. Life for them goes on. My grandmother, however, has become very stressed and depressed. I try to lift their spirits as best I can.
Whenever you have your "I don't know where I am moments" what is the best response to calm you down and to get you back to where you need to be?
"I haven't had that happen yet"
My grandmother has this as well, but is in a nursing home. She talks almost completely in nonsense. She's looking at renting an apartment, she thinks she works for the "school" she is living at. One lady is the "boss" of the place (she is just a nurse). Last month she spent a weekend in Boston seeing an Irish band but her and her friend had to leave because someone was talking in their sleep. It goes on and on.
Does your grandfather ever mix fantasy with reality? Is ever aware of it?
Either way. Best of luck and hang in there.
Thank you. Yes, he definitely does. And he is certain that whatever he thinks is happening actually is happening. He told me just the other day that he remembers the Old Man from Pawn Stars because "they were best pals in the Navy". This never came up in the years he has watched the show. I guess its not entirely impossible but it can be a challenge to separate truth from nonsense.
Does he ever forget that he has the disease? Are those moments comforting? Or frightening?
He hasn't really forgotten yet, at least not the Alzheimer's. He forgot he had a heart condition at one point but it eventually dawned on him that he does. It can be scary, especially if he doesn't take any medicine.
My great grandmother has it and she just NEVER notices when she says the same thing multiple times or tries to pay the same bill over and over- even disregards notes saying it's already done.
So my questions are, do you ever catch yourself and think "I already did that?" Are you able to recollect after someone tells you that you did something? And lastly, what things are you, personally, most likely to forget?
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