So maybe this is an unpopular opinion but since there isn’t a cure I don’t think I want to know. If I’m not symptomatic why put myself and my family through more time just waiting for it to appear.
I just wanted to say we didn’t know my father had early onset Alzheimer’s, and I never got to say goodbye to him before COVID took him from moderate to severe.
Knowing is good, because you can make arrangements and your family doesn’t find out by you taking the car out and never coming home because you drove out of the city, or got into an accident.
You want to know. My dad had frontal lobe dementia, not Alzheimer’s, but it got to the point that he attacked a cop and got put in a psych ward before we realized that it was more than just a guy who had anger problems to begin with just getting more crotchety.
Mercifully, when we got him to a nursing home after a few weeks, he died about a year later. But it was hard on all of us before that, especially my mother, because we really didn’t understand that this was a medical issue. I don’t know if there was something we could have done to make it better in terms of medical intervention, but at least we could have been prepared for it and not have to make emergency plans after he was thrown into a psych ward.
So you want to know for the sake of everyone around you.
we really didn’t understand that this was a medical issue
There are more things like this every day. So many people are diagnosed with mild ADHD or Autism later in life. Whereas before they were just “eccentric” or “unique”.
That would have been him too. He was almost certainly autistic. My brother has been diagnosed, I’m on the very edge according to an evaluation I was once given, and there are other members of my family who have since been diagnosed with it. But yes, he was just thought of as an eccentric professor and he was proud of that.
There are treatments to delay it, and generally they work better before you are fully impacted.
Also it could help you grapple with it, and know when to more gracefully simmer down certain activities (like traveling alone, managing your own money, etc)
Not always the best thing either. My dad willed my brother and I all the stuff he had collected over the years. He was like a hoarder, except for stuff that might have had value, and the house wasn’t a mess or anything. But he collected so many things- thousands of LPs (mostly movie soundtracks and classical music), CDs (the same) and DVDs, hundreds of books, dozens of movie posters, countless stamps, coins, collectible cigarette cards, an extensive collection of Charlie Chaplin and King Kong memorabilia (know anyone who wants a life-sized porcelain bust of Charlie Chaplin?), about 20 walking sticks of various types… he even started collecting sheet music at the end.
Some of it was worth money, a lot of it wasn’t. I sold as much as I could on eBay and a flea market stall, plus garage sales. A lot of it ended up either being given away or, eventually, just dropped off at thrift stores because no one wanted them. I have kept a few precious things, plus the Kong and Chaplin collections because I want those to go to the right person or organization (and I want my mother to agree), and gotten rid of the rest.
I did do one smart thing- right after he died, I told my brother (who was not going to be around to handle any of this with me, so he didn’t inherit any of it) to just take whatever he wanted before he left and he agreed to let me handle the rest. Most of the stuff he took was valuable, but that’s fine. He has no kids. It will go to my daughter.
Anyway, they were not my collections. I didn’t care about most of them. I didn’t really want to end up with them, but I felt an obligation to do so. And I didn’t want to just throw it all out since some of it really was valuable. In the end, I don’t regret doing it, but I wish I was given more of an idea of what I would be dealing with.
I guess what I’m saying is that if you do write your will, talk to the people you’re giving any non-monetary inheritance to and see if they’re willing to handle it all. I think I am lucky in that I really don’t feel an obligation to keep any of this stuff as a memorial to my father’s legacy or anything. Other than things I personally care about for my own reasons, I’m fine with getting it all out of my life. I can see a lot of people’s kids being surprised about what they’ve been left to deal with.
What a gargantuan task! And you got through it. Without unfortunate hangups (“Goodwill doesn’t want this old napkin but how can I just throw it away?”)
Someone on NPR managed to keep just one thing from their husband’s passing, a favorite t-shirt. But even a dirty napkin I’d understand, really anything is understandable in the face of a big loss.
So, I missed some steps then:
1 - think about your stuff
2 - check if next of kin can handle stuff
3 - make sure they can handle the stuff
4 - make a will for, at least, your money
I want to go out on my own terms. If that means I don’t have to save so much for retirement… Great, I can go on expensive vacations now instead of later.
And then I can do what needs to be done without regrets.
I get the sentiment and more or less agree with you, though if there were a successful treatment to delay or lessen its effects, I’d be down to get going on that early if detected.
Oh yeah absolutely. But aside from random studies that all “show promising possibilities for future treatments” right now I don’t know that there’s a good outlook for anyone even if they get diagnosed today.
But if that changed I’d be first in line for the test.
So maybe this is an unpopular opinion but since there isn’t a cure I don’t think I want to know. If I’m not symptomatic why put myself and my family through more time just waiting for it to appear.
I just wanted to say we didn’t know my father had early onset Alzheimer’s, and I never got to say goodbye to him before COVID took him from moderate to severe.
Knowing is good, because you can make arrangements and your family doesn’t find out by you taking the car out and never coming home because you drove out of the city, or got into an accident.
There are medicines that can delay it a bit, and work better the earlier you start taking them
There’s tons of research toward this and they may give something. Wouldn’t you want to know to jump on every study/research?
You want to know. My dad had frontal lobe dementia, not Alzheimer’s, but it got to the point that he attacked a cop and got put in a psych ward before we realized that it was more than just a guy who had anger problems to begin with just getting more crotchety.
Mercifully, when we got him to a nursing home after a few weeks, he died about a year later. But it was hard on all of us before that, especially my mother, because we really didn’t understand that this was a medical issue. I don’t know if there was something we could have done to make it better in terms of medical intervention, but at least we could have been prepared for it and not have to make emergency plans after he was thrown into a psych ward.
So you want to know for the sake of everyone around you.
There are more things like this every day. So many people are diagnosed with mild ADHD or Autism later in life. Whereas before they were just “eccentric” or “unique”.
That would have been him too. He was almost certainly autistic. My brother has been diagnosed, I’m on the very edge according to an evaluation I was once given, and there are other members of my family who have since been diagnosed with it. But yes, he was just thought of as an eccentric professor and he was proud of that.
There are treatments to delay it, and generally they work better before you are fully impacted.
Also it could help you grapple with it, and know when to more gracefully simmer down certain activities (like traveling alone, managing your own money, etc)
Could be the catalyst some need to finally write their dang wills!
Not always the best thing either. My dad willed my brother and I all the stuff he had collected over the years. He was like a hoarder, except for stuff that might have had value, and the house wasn’t a mess or anything. But he collected so many things- thousands of LPs (mostly movie soundtracks and classical music), CDs (the same) and DVDs, hundreds of books, dozens of movie posters, countless stamps, coins, collectible cigarette cards, an extensive collection of Charlie Chaplin and King Kong memorabilia (know anyone who wants a life-sized porcelain bust of Charlie Chaplin?), about 20 walking sticks of various types… he even started collecting sheet music at the end.
Some of it was worth money, a lot of it wasn’t. I sold as much as I could on eBay and a flea market stall, plus garage sales. A lot of it ended up either being given away or, eventually, just dropped off at thrift stores because no one wanted them. I have kept a few precious things, plus the Kong and Chaplin collections because I want those to go to the right person or organization (and I want my mother to agree), and gotten rid of the rest.
I did do one smart thing- right after he died, I told my brother (who was not going to be around to handle any of this with me, so he didn’t inherit any of it) to just take whatever he wanted before he left and he agreed to let me handle the rest. Most of the stuff he took was valuable, but that’s fine. He has no kids. It will go to my daughter.
Anyway, they were not my collections. I didn’t care about most of them. I didn’t really want to end up with them, but I felt an obligation to do so. And I didn’t want to just throw it all out since some of it really was valuable. In the end, I don’t regret doing it, but I wish I was given more of an idea of what I would be dealing with.
I guess what I’m saying is that if you do write your will, talk to the people you’re giving any non-monetary inheritance to and see if they’re willing to handle it all. I think I am lucky in that I really don’t feel an obligation to keep any of this stuff as a memorial to my father’s legacy or anything. Other than things I personally care about for my own reasons, I’m fine with getting it all out of my life. I can see a lot of people’s kids being surprised about what they’ve been left to deal with.
What a gargantuan task! And you got through it. Without unfortunate hangups (“Goodwill doesn’t want this old napkin but how can I just throw it away?”)
Someone on NPR managed to keep just one thing from their husband’s passing, a favorite t-shirt. But even a dirty napkin I’d understand, really anything is understandable in the face of a big loss.
So, I missed some steps then:
1 - think about your stuff
2 - check if next of kin can handle stuff
3 - make sure they can handle the stuff
4 - make a will for, at least, your money
Good call :)
I’d like to know.
I want to go out on my own terms. If that means I don’t have to save so much for retirement… Great, I can go on expensive vacations now instead of later.
And then I can do what needs to be done without regrets.
I get the sentiment and more or less agree with you, though if there were a successful treatment to delay or lessen its effects, I’d be down to get going on that early if detected.
Oh yeah absolutely. But aside from random studies that all “show promising possibilities for future treatments” right now I don’t know that there’s a good outlook for anyone even if they get diagnosed today.
But if that changed I’d be first in line for the test.
Other way around. If the test indicated a problem, you could try to jump on every study that may show promising results
Save money for treatment and long term care? Set up health insurance and trusts to help the people you care about be okay?