Topic: Bitcoiners with Alzheimer's. How do you work it out? (Read 345 times)

as said before but continuing

brain learning
dont just stick to cross words or sudoku all day. as thats just energising one part of the brain which after a few attempts is not really training. its just entertaining the brain
if your getting too good at it. its time to stop and try something else

do different things. literally everything that has a strategy to it where you need to learn something
proper strategy things like them "locked room" puzzles, math, riddles, heck even trying different recipes of fried chicken herbs and spices until you worked out the KFC secret recipe

anything that makes you think and try different things will help your brain

find random facts about something
whats the atomic weight of carbon
what breed of crab has the longest pincers
what is the fastest growing tree

if you have a certain hobby. learn all you can about it

learning new skills doesnt just stretch your brain. but it also gives you new things to think about and also talk to family about, they will thank you for not repeating the same joke they heard all their life and the same childhood story for the 1000th time.
 
find proper strategy games which have riddles that reveal where the next stage of the puzzle is
even things like snooker(pool) or bowls where you have to work out the angles.
golf. archery where you have to work out wind speed and distance and trajectory

as for independence.
dont be too proud to think you dont need aids or help from others.
you said you dont want to get to a point of having a recording device around your neck but in the long run its much better then getting embarrassed that you forgot why you stood up walked halfway up the stairs and forgot why you went up the stairs and then argued with family about some lame excuse of how your fine and you dont need help and such

having kitchen appliances with timers is not surrendering. its keeping your independence you wont wont to be in a position of cooking some friend chicken and forgetting the deep fat fryer is on until the fire alarms are blaring out. use airfryers with timers the chime after XX minutes and shut off by themselves. the chime will remind you that you have chicken cooking without burning the house down. so you can then continue making your food without worry. or needing supervision

having things like a bottle of drink near your bed or where you normally sit. so if thirsty you have quick access, and not need to get up walk around and forget why you got up. it will keep you hydrated and healthy.
dont fear using aids or appliances that can help you. its not surrendering, its actually fighting back.

if your having issues with medication routines. there is nothing wrong with setting up calendar appointment alerts on your phone to chime out an alarm reminder at certain times of the day.

dont think of a voice recorder as a bad thing. think of it as a if you are making a podcast to yourself like a mini biography where in a few months/years you may want to listen to yourself about what you did this time last year/month
(like a journal/memory book but easier to take notes), it may even help your family have memories of your in your voice they can listen to in many many decades time when you die of old age in your 90's+

and wink wink it just so happens that you may hint hint rewind your podcast by a couple minutes should you have a foggy moment and no one is the wiser. and you remind yourself what you were about to do without bothering anyone and without them knowing. so you can get on with your day independently

I am touched by your story to the core. 

A long time ago I knew a girl who had a similar problem. The more I got to know her, the more I realised that she had a bad memory, as she got lost in places that even a child could not get lost in. I really hope that the feelings you described do not weaken your mind over the years (loss of clarity of past memories).

Take care of yourself.

Dear PrivacyG, I feel almost devastated to hear about your medical condition... I read your topic last night, yet when I woke up in the morning I hoped it was just a dream. Sadly, it wasn't and here we are... What makes me even more sad is the fact that you are not 60+ years of age (or so I believe) thus you have all your life in front of you...

If I may, I'd like to share two things about this illness.

First of all, when I moved in the apartment I am owning now, at that moment I rented it. It was the property of a nice old lady which I knew since I was a child. And she was old since I was a child. Time passed, I grew up and she became even older. When I rented the apartment she was already for a few years inside an asylum, as she had Alzheimer and she needed someone to take care of her all day long. I paid rent here for about 9 years. I wanted to buy it but I could not. Her daughters could not sell the apartment as they needed their mother signature on papers and no authority would accept the old lady's signature, since she had Alzheimer. So practically they told me they will sell (me) the apartment but only after their mother will die.

This happened 9 years later and I believe the old lady was inside the asylum for more than a decade, while having Alzheimer for even a longer time. I think she was 80+ when the sad moment happened.

What I'm trying to say, as an encouragement, is that you can live with this illness. Try to fight it, by using your brain, as much as you can. But the most important thing is that you can live with it. Having someone around is necessary, but you can have a normal life.

The second thing I wanted to suggest is this one: do you like to resolve crosswords? Don't take this as a joke, as I am seriously suggesting it to you. I am a big fan of crosswords and I am having this hobby for many, many years, since I was a child. I guess I saw adults around me solving crosswords and, since children imitate adults, this is what I did... Solving crosswords is a way to enrich your lexicon, to become more cultivated and also, a way for training your brain. Some are easier to resolve, some are so difficult that you'll never make it. Yet constantly resolving these innocent puzzles may be a good training for your brain and for your memory as well.

I hope this helps. May you be well, dear PrivacyG!

 I am not in the same situation and I feel very sorry that you find your brain failing on you. The only thing that you can do is prepare for it and prepare your family members because it will become a day where you do not remember and you will rely on the people around you. I think you have already prepared for this by what you have said but I would make sure that they understand and can you how to operate a btc wallet before it goes too far and you can no longer teach them.

I have seen people with declining memories leave notes and make video notes because they find it easier to understand. If you leave a note you could forget and think that any one could have left that note but you will never forget your face and video notes could help you a lot in the future. I hope you can manage the decline by keeping your brain active and hopefully you can prepare all the people you trust for when the day comes of handing it over.

I'm still good though and even if I experience it, you know that there's this fear of knowing the truth and being diagnosed with something that I may have a hard time accepting. And that's the reason why I'm just ignoring it for now. I've already told my immediate family that my memory isn't like before and I'm easy to forget things but so far as I've said, it's manageable. I'm scared somehow as I see stories like this but yeah until it becomes too much for me, I'll just enjoy things while I can.

Writing it down and having someone you can trust is a big help.
I don’t know the feeling of having this but it will be a big problem if you forgot your keys and everything about Bitcoin without having any back-up.

So if you’re still in a good condition, make sure everything is recorded and put it on a good place where you always visit. Hope that you can be with someone that you can trust and not just after your money, you need a lot of attention, focus on your health and just keep going.

AFAIK there is no solution or cure unfortunately and yes while its such a serious illness,
its more of an insidious one, a truly hateful one.

@PrivacyG - I'm sorry to hear about your illness, this and its cousin Dementia are two of
the only things that truly frighten me. I dont know anyone personally but know of friends
of friends who have been affected.

It seems that a common effect of the disease is for the patient to slowly regress back
to "childhood" - something you have eluded to yourself.

franky1 - fair play to him has been the first responder and hit on everything really.

Just to add something else, I think its important not to isolate yourself and get completely
wrapped up with exercising your brain, community has to play a part also, plenty of
interaction with others is important, get them playing games with you also.

I really wish you all the very best for the future.

Well, this is a dangerous decision and to say the truth, an egoistical one too, because it's not only about you, but also about close people who will have to take care of you, in emergencies or diseases' situations. They also deserve to know what is going on with you, so they can assist in the best manner as possible, guided and advised by professionals.

There is no reason to avoid seeking for help. There is no shame on it. Each of us will have to seek for help at some moment in our lives. Nobody is self-sufficient and unbeatable. By doing this, you will be showing love and respect for yourself (your welfare) and also for your beloved ones.

This ailment is not so common in my country, though it is generally a rare disease everywhere, but it is something i usually think about, what if my brain fails me someday what will happen to my BTC, because for now only i know my passwords, seed phrase and every encryption that opens any of my funds. I had the idea of sharing things with my significant other in this year 2023, but i am yet to do that for many reasons, i like to be the only one in control of my BTC, but i feel with time i will have to share this control with someone.

Such a sad story, PG, sorry for how you feel. You have to rely on your family in times like this, with them by your side and with trust between the both of you, you will be all right and will also be able to communicate here in the forum for a very long time. It was Yahoo's story first and now yours, this has increased empathy within me, both in real life and in online forums, we don't really know what the next person is going through, so harsh words are so unnecessary.

I have that moment every dawn or wee hours when I also remember something from my childhood, as in exactly where we've lived before and it flashes on my mind at exactly 12MN - 3 AM in the morning. I don't know why this happens but I am also forgetting things. Even if someone tells me how exactly we met or did something before, I barely remember it. I don't want to be diagnosed and I don't want to consult any help and I think mine's condition is still manageable. I still remember one of those videos I watched before that the worst condition is when we're forgetting things and mostly our loved ones. I have no tips for you as the tip that I'm about to say was already made by you and that's to label everything. I'm praying that you overcome this and your situation becomes better. Your family and relatives will always be a great help in this condition.

I think the ultimate solution for you will be to surround you with people that you can trust. You might not remember everything anymore, but a spouse or partner will be your support when you need it the most.

I often say, I have "Alzheimer Light" when I forget things, but reading your thread gave me deeper respect for your illness and I think I will stop with that, because it's nothing to joke about.

I hope you can find some friends and family that will be able to support you with your medical condition and your Crypto future. 

Unfortunately, I can't think of a solution to your problem. Of course, you could try to keep your brain in shape, but Alzheimer's is a serious illness and there's no way to cure yourself completely. You could write everything down on paper, but eventually you will forget about the paper notes.
At some point, you will have to give out your crypto savings to your airs and/or you will have to invest them in serious medical treatment.
People with Alzheimer's aren't capable of running their own finances. This sucks, but there's no way around. Really sad story, man.

Really sad to hear your story @OP, it's not easy for you to accept it especially if you're really care with your privacy and such thing.

After read your story, I think there's nothing wrong to talk and teach my older kids to learn about Bitcoin, so he will have access about my Bitcoin when something bad unexpected happen in the future.

I think you shouldn't logout your account on this forum because you might forget your username and your password, also it's better to access it on your personal PC in your home. I think you can use this thread as your Bitcoin story with Alzeihmer by give an update.

It's in moments like this we conclude life is too short and fragile. I believe the best you can do now is to share your crypto wallets and banking accounts' details with your family, counting with their support from now on, while doing things you always wanted to do and that you think that will be rewarding for you.

Take it easy with yourself. Don't force your brain too much with repetitive exercises. Find in your past good memories the will and energy you need to schedule plans you would like to execute and experience. Maybe things you always wanted to do, but never could. Since you mentioned to have had some very stressful years, I think it's important to revert this as priority.

I feel sorry for you. But happy that you are not in denial. You accepted the reality and even made steps to somehow cushion its impact, especially in the near future when things get worse. That must be good.

It must be good that you are trying to counter the effects of Alzheimer on you by keeping your brain busy or exercising it. Apart from some changes especially for safety and some extra initiatives for your Bitcoin, nothing radical should be changing. Discussions with family and friends, outing or traveling, reading books, playing games, taking time to concentrate on your hobbies, playing instruments, etc shouldn't at all stop. I guess they will help your brain function as well as possible.

I know you can survive all of this. You seem very positive in the face of this.

Training your brain is good but I don't like to train my brain with passwords, keys and things that can cause to loss of my fund. I know you make backups but if you change passwords too much, you will have many passwords in backups. It increases probability for mistakes with your backups.

Your approach is like my friend in university. He is used to be a carsick person but he wanted to end this by using bus as his means for transportation to move from his home to university. After a few months, he succeeded to get rid of his carsick syndrome.

I like how you train your brains with training games and poems but with passwords, I think you should not. It is very risky.

Never specifically referenced Alzheimer but it is certainly one of the things I would consider as sudden loss of access... Something that really does sit on the edge of my thoughts when I think of my bitcoin and inheritance.

Do not have much to make a difference now, but hopefully enough to have an impact in the future for whoever inherits.

But back to you. There was recent buzz about a new drug in some journals. Called lecanemab. Seems to be a big deal. Seems as if people are hopeful they're on to something. I only know because of a small local org I support. You heard of it?

Me, how do I deal with mental health, probably not much. I do worry at times. My last six years especially has not been healthy, socially. I physically have not met many people, owing to circumstance (I am a carer).

 Culturally, where I come from, we also don't talk about it. Just soldier on. But we are not living in the same society now. I do believe the mental stresses are different.

Good you talked about it. Now to continue seeking professional and relatable audiences -) Good luck, PG.

If they are aware that there are lapses on their memory, for sure they'd make an action to cope with it such as putting everything in the notes, having someone to know (depends), recorders and such. This would be risky as well simply because other people could take advantage of these things or there are tendencies for an individual's asset to get stolen but these are already remedies and if things won't work still, then maybe this industry won't be for you. It would be better to be realistic than to push through things. For sure there is a way if there's a will. Not only with people who has alzheimer's but also with other conditions.

Alzheimers has shown people can live with it for many many decades
what actually shortens life is those that give up.
just wasting away not eating and just sitting in the same chair each day losing weight and muscles and dehydrating due to forgetting the basics
double dosing their meds(forgot they already took them) or forgetting their meds entirely.
vegetating in one spot just sat in a corner watching tv all day speeds up the decline


so other peoples advice about nutrition and hydration along with body-exercises does keep you alive longer. even if you cant remember every second of that longer life

there are people in my region that also have it that were diagnosed decades ago and now in their 90's, still plodding along happy as larry.. their wives might want to kill them(not literally) for repeating their war stories. but they still get along
their secret they said was a morning walk to get the newspaper/milk, an after noon in the garden or doing a sport at the mens club (bowls, golf, snooker, darts) oh and a good laugh.. things that make them or others round them smile or laugh(keeps their wife from suffocating them in their sleep(said with a smile))


if things do get to the stage(long time from now, but always best to prepare or have plans) where family are telling you things like 'its time for your pills' or 'time for breakfast' where you are in one of them moods of "dont tell me what to do"

tell them tips like make up a play list of songs that subtly sing about a certain thing.
that are set up to play during the day
 like breakfast related songs.. as a subtle hint, not coming from family but from music to remind you what time of day it is.
that way it avoids any feeling of family annoying you or you feeling like you need them to tell you..
eg it just so happens that the radio was playing a breakfast song when you yourself realise you should make some toast
..
oh and also. cooking devices with timers. that cut out after X minutes
steamers instead of saucepans for veg. halogen ovens with timers and airfryers rather then standard ovens and deepfat fryers without timers

im not saying that you should use these or need these things now. but dont be afraid to use tools that keep your independence so you can still make your own breakfasts without needing a carer do it all for you or be present to remind you

Wow franky, I can actually relate to almost every thing you said.  I do wonder now how bad my condition is since almost every thing you said is already happening in my life.  I do find myself having a foggy brain moment very often every day, and unless some body around me knows what I wanted to do I just can not remember at all.

Memory book!  That is the term I was looking for.  I actually do have a memory book.  I even write down in great detail every step I take with my Cryptocurrency Wallets, because I do tend to sometimes forget the most important part of it.  But I also find myself in a loop of never getting out of my comfort zone and never willing to do new stuff.  Things I did not think of before, but I will change from tomorrow on.  Thank you.  I really hope it does not get so bad that I will have to wear a recorder on my neck.  I have no clue how fast this disease can even progress, and for now I do not really care because I want to focus on less negativity and more productivity.  Maybe I can manage this mental decline better by focusing on fixing it instead of focusing on what could go wrong over the years.

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Thank you o_e_l_e_o, I think my brain is not affecting my life a LOT right now and hopefully it will not get much worse over the years.  I can of course only be grateful for the support I am currently receiving from my relatives.

Very sound advice.  Thank you, will look into this.  Time locking looks like the option I will pick.

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Thank you.  It seems like I will need to get me some relaxing time more often now.  Does not sound bad, actually.  Had some very busy and stressful years so might have needed this anyway.

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Thank you for all the support.  As I said above, I think things are not THAT bad yet and I am very hopeful and positive.  From a third perspective maybe things are different though.  My mental status may have an impact on my family and surroundings that I can not comprehend yet since I am living in my own state of mind.

I might post an update every now and then about how things are going.  Thank you all for the suggestions.  I now have new things to look into.  New things to learn, which Alzheimer seems to hate!

-
Regards,
PrivacyG