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submitted 1 year ago* (last edited 1 year ago) by cygnus_velum@lemmy.world to c/asklemmy@lemmy.ml

This has been on my mind lately. My dad is going through it, his sister has got it pretty bad and I apparently have the predisposed gene to get in my future.

I’m leaning no because I wouldn’t want to make my child go through slowly watching their dad’s mind leave them and also potentially pass it on to them when they get older.

It’s thrown me for a loop since I always imagined myself having kids and I’m around that age now.

What do you think?


Edit: I just want to say that I did not expect the kind of response this post got. I’m grateful for all of your comments and the perspectives it’s allowed me to peak into.

I also should mention that were I to have children they would most certainly not be burdened by being the crutch of my own personal journey of accepting and loving who I am. That is work for me alone and I would never unload that responsibility onto those I love and especially those who I’d be raising.

As for my partner not wanting kids, I would never consider forcing or persuading them to raise a child when they know for certain it’s not in their cards. This is another element in how I’ve been navigating this question. I love her with everything I have and I can’t imagine us being apart and yet there is a pang that lingers of the father I assumed I would eventually become.

Anyway, thanks again for your thoughtful replies. They’ve helped so much especially since this is the first time I’ve voiced these thoughts.

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[-] robotrash@lemmy.robotra.sh 59 points 1 year ago

If you want kids you should have them. You can let fear of the ifs keep you from doing that. I say this being generally opposed to children as well lol

[-] cygnus_velum@lemmy.world 15 points 1 year ago* (last edited 1 year ago)

Yeah, only recently have I been opposed to having children outside of the Alzheimer’s question. We could afford to have them, but it would truly be paycheck to paycheck which I wouldn’t be comfortable with. Plus there are plenty of humans already on this poor planet.

Also, my partner is very against having children. Which I understand, but it’s a different place to be in life when I always imagined having them. Now I’m trying to decide if I truly want to have them and the boat is sailing since I’m 36.

[-] ChrisLicht@lemm.ee 19 points 1 year ago

It’s interesting to have gone the distance without having kids. Very few of my friends who had them seemed to enjoy the experience in the moment, but those few that did really did. Also, a couple of them lost the Russian Roulette and had kids with significant issues that currently can’t be fixed; they are staring down a potential lifetime of dealing with mental health and/or addiction issues in adult children.

I’m fundamentally a risk-taker, but the returns have never seemed worth the commitment and possibility of wildly adverse outcomes, particularly living under the American social and economic models.

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[-] grabyourmotherskeys@lemmy.world 6 points 1 year ago

Hi, I am from a family with a lot of autoimmune conditions like Crohn's, Ankylosing Spondylitis, MS, and Alzheimer's. My father started to "lose it" in his late 50s, retiring a little early. He lived a long life until early 90s but the last ten years were hard on everyone. But my mother took care of him and we will tried to help.

I was 38 when our child was born. I was very concerned about passing on anything and he probably is going to have Crohn's or IBD.

But here's the thing. All of my family has done our best to live our best lives and yes it isn't the best physical condition at times but we have loved, taken chances, l made mistakes, had laughs, etc. That's worth it.

I've also known people who were ironman triathlon champs having heart attacks.

Only you can decide on kids. That's not why I'm here. I'm here to tell you the chance that you or they might have Alzheimer's doesn't have to be the deciding factor.

Also, there are pilot studies in Alzheimer's vaccines and other treatments.

[-] Mog_fanatic@lemmy.world 4 points 1 year ago* (last edited 1 year ago)

One thing I don't see mentioned here at all is the financial burden incurred by caring for a family member with serious problems like this. Obviously this is very dependent on the country in which you live but at least in the United States it is very possible to be buried in debt for caring for someone else. Personally, I will be trying to pay off medical bills from taking care of a family member in their final days probably for the rest of my life barring a miracle.

I'd rather not potentially saddle my children with the same if I can avoid it.

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[-] gibmiser@lemmy.world 3 points 1 year ago

Have you considered adoption?

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[-] richieadler@lemmy.myserv.one 5 points 1 year ago

I'd you want kids you should think carefully if you're ready to raise them as better persons than you and to work for a better world that the one they received before you have them

FTFY

[-] Nemo@midwest.social 29 points 1 year ago

Yes, but I'd adopt if I thought it was inheritable. Raising kids doesn't have to mean giving birth to them.

[-] Bipta@kbin.social 9 points 1 year ago

That doesn't avoid their concern about condemning their kids to watch them go through it.

[-] Nemo@midwest.social 19 points 1 year ago

No, it doesn't. I'm answering the question of what I would do, not what OP should do.

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[-] yenahmik@lemmy.world 23 points 1 year ago

There have been some major strides in treatments that slow and/or halt the progression of Alzheimer's recently. I would think that in the next 30-50 years it would be a much more manageable disease.

I understand the concern of passing it down, but there is always adoption or sperm/egg donation, if you still wanted to be a parent. Honestly, nothing is guaranteed. You could die of something else long before Alzheimer's could develop, or you could live to 100 in perfect health. Most of us will fall somewhere in between.

I wouldn't let something like that stop you from starting a family if it's what you really want in life.

[-] cygnus_velum@lemmy.world 9 points 1 year ago* (last edited 1 year ago)

Yes, my dad has been on medication that slows it, but it’s definitely taken a turn these past few months. We had to get the doctor to tell him to stop driving this month. It’s been really hard on him especially since he doesn’t know why and thinks it’s his fault and that it must be because he is simply too dumb enough to drive. It’s truly heartbreaking.

Also, that’s a good point that something entirely different could happen before Alzheimer’s.

I don’t have really any big fears in my life. I’m good with heights, I can run workshops and talk in front of hundreds of people. But I’ve always truly feared losing my mind since my psych 101 class in college. My plan is to go to a country that allows assisted suicide if I do end up getting it and can still make decisions in my right mind.

[-] ExLisper@linux.community 3 points 1 year ago

I think currently there are only two drugs that slow it down a bit (give maybe couple of years more) but are also very expensive and are quite dangerous (can cause brain swelling). So some improvements but still long way from a treatment.

[-] NoughtE@lemmy.world 23 points 1 year ago

I have strictly instructed my family, including my wife, that if I ever develop alzheimers I want to be euthanized. If I am sufficiently lucid at the point of diagnosis I will have no problem overdosing on something and going out in peace.

[-] Mog_fanatic@lemmy.world 4 points 1 year ago

I've come up with the idea of an annual test of basic facts and current events (very basic). Once I get to the point where I can't pass this test with flying colors, off me and launch my corpse into the ocean via trebuchet plz. Game over. Not interested in seeing where the rest of that ride goes. Seen it many times before with family members and I don't like it.

[-] blady_blah@lemmy.world 3 points 1 year ago

Problem is there's a catch 22. If you're not lucid enough to answer those questions, you're not lucid enough side whether you live or die from a legal standpoint.

Every law I know that allows euthanasia requires that the person have a terminal illness and enough mental faculties to make the decision. You run the risk of a loved one getting tried for murder if you ask them to give you the drugs and you are not competent to make the decision yourself.

[-] ExLisper@linux.community 1 points 1 year ago

With diseases like this you get better and worse days. What one should do is do the test daily and track it. If you see gaps in the test results (like you see that last 2 days you didn't take the test but don't remember why, or failed the test yesterday) you end it. At this point it's clear that the next step will no not knowing where you are at all so there's no point at prelonging it. You should nitrogen gas ready somewhere.

[-] andrewta@lemmy.world 18 points 1 year ago

Hell No. why hand that crap on to someone else. If I want kids I’d adopt.

[-] bobaduk@lemmy.world 17 points 1 year ago

From your other replies it seems like you're unsure you want kids in any case, but if you do there's a simple thought experiment here: do you wish your father hadn't had you? If not, it's reasonable to think your children would be just as grateful to be alive as you are, sick dad or not.

[-] droans@lemmy.world 10 points 1 year ago

it seems like you're unsure you want kids in any case

Unless you're certain you want kids, don't have them. I love my little one, but it's not easy.

Kids deserve to have parents who can give them 100% and you do not want to live the rest of your life resenting them.

[-] EnmaAi22@lemmy.world 7 points 1 year ago

The positive for experiences dont equal out the negative experiences though. Negative experiences weigh more

[-] CiderApplenTea@lemmy.world 2 points 1 year ago

But still, that would be weighed correctly in the question whether OP is glad their dad had them, the question isn't whether they haven't had happy memories

[-] Mog_fanatic@lemmy.world 15 points 1 year ago

This is the main reason I have not had children. I am almost 100% guaranteed to get Alzheimer's in the pretty near future. Having watched countless of my family members go through the absolutely heart wrenching process of Alzheimer's progression, I can't in good conscience have children (so far anyway, I'm not 100% on it) for two reasons:

  • I don't want to put them through the grueling process of caring for, and dealing with someone dying from Alzheimer's

  • While it's not guaranteed obviously, I don't want to doom a child to a very very good chance of getting Alzheimer's at some point in their lives.

There is of course a chance for a treatment to be developed but they've been saying that for decades and haven't really come up with much of anything so far.

[-] tkk13909@sopuli.xyz 13 points 1 year ago

You could probably adopt. That's always an option

[-] keider@lemmy.world 10 points 1 year ago

There might be a cure for Alzheimer’s when you turn 65, medicine is advancing pretty rapidly now.

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[-] Rhoeri@lemmy.world 9 points 1 year ago

I wouldn’t have kids regardless. So…. No- I wouldn’t.

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[-] MNByChoice@midwest.social 8 points 1 year ago

How inheritable is it (50-50%)? How certain is that fate? How old are you?

I would not count it as an absolute no. 65 years of life is better than many get, and everyone has something bad in their genetics.

Also, you seem to care and that is rare. As you care, that is a plus for you raising someone. Maybe not your generic kids, but someone.

[-] JoBo@feddit.uk 7 points 1 year ago

I have a friend who suffers from severe depression, inherited from his parents, and he definitely blames them for deciding to have kids when he feels they should have known what hell he would suffer for it.

But this is completely different. You have plenty of time to raise your kids before it affects you, if it ever does. If they inherit the predisposition, they have plenty of time to lead amazing lives before it strikes. It's a miserable thing that may or may not happen towards the end of life but we all have to deal with miserable things.

You can't live your life in a way that avoids all of those miserable things. I have another friend who spends a quite unreasonable amount of mental energy trying to avoid bad consequences and it is honestly ridiculous how many much worse things that happen as a result.

That said, you say elsewhere that your partner does not want kids. You have to decide whether the relationship is strong enough to accept that. Are you looking for reasons why you should feel happy about it? Do you have a burning desire for children or is it just something that you assumed would happen because that's how it works for most people?

Big decisions to make. But none of them have a whole lot to do with Alzheimer's. If you do have kids, and you treat them well, they're going to be devastated no matter when you die, or what kills you. That's not a reason to deny them, or you, the joy that makes it so devastating. Grief is the price we pay for love.

Parental love might or might not be something you want or need in your life. That's a question only you can answer.

[-] cygnus_velum@lemmy.world 2 points 1 year ago* (last edited 1 year ago)

Thank you for this. Yes, that’s part of question for me. Does always imagining having them mean I really want them?

I also think one of the things I fear about not having kids is the work it will take to really accept and love myself. I feel like kids can substitute that kind of work in a lot of people. Without them though I’m really faced with myself.

[-] Foreigner@kbin.social 4 points 1 year ago

That's a really heavy burden to place on a child. Sure when they're really young you'll be the centre of their universe. A superhero that can do no wrong. But eventually they will grow up, and become their own people. That process often involves outright rejecting you and being really hurtful. If you have a fragile sense of self I'm not sure raising teenagers will make you feel any better, they can be godamn mean.

Also your kids should NEVER be responsible for your mental health and self esteem. It's incredibly unhealthy and you will likely end up raising broken adults because of it. Honestly, save yourself and your potential future chlldren the trauma and heartache and do the work it takes to deal with your issues. It will be hard, but believe me it's a piece of cake compared to the pain you'd be setting yourself up for later.

[-] paysrenttobirds@sh.itjust.works 2 points 1 year ago

Oh my gosh, I truly appreciate your post and it has made me think about my grandma, etc, but I have to comment here as a mom of grown children: children take a very personal passion and work that can at times be super affirming, but being a parent WILL NOT help you accept and love yourself!!!

The pitfalls are the same as in any meaningful effort and the importance will magnify the failures as much or more than the successes.

[-] bi_tux@lemmy.world 7 points 1 year ago

This thread makea me think of dark souls 1, where Siglinde of Catharina had to kill her father as he went hollow.

But seriosly, you seem like quiet a good parent, maybe adopt children, if you don't want them to have bad odds of getting Alzheimer. Also realisticly your partner would be the first person who'd take care of you.

[-] regalia@literature.cafe 7 points 1 year ago

Definitely. They'll be able to survive without me at that age and I'll have my genes carry on. Not like they'll last long with climate change anyways.

[-] Duke_Nukem_1990@feddit.de 6 points 1 year ago

Absolutely not, what a cruel thing to do that would be, knowingly and willingly putting the risk and the needed care on an unborn child.

[-] adrianmalacoda@lemmy.ml 6 points 1 year ago

I don't want to have children, but if I knew I was going to get Alzheimer's at 65 I would plan to leave this world at 64.

[-] GunnarRunnar@kbin.social 6 points 1 year ago

If I'm 64? No way. If I'm 30? I don't see why not.

[-] dukatos@lemm.ee 5 points 1 year ago

No. Don't do that to your kids.

[-] MrFunnyMoustache@lemmy.ml 5 points 1 year ago

As a person who doesn't want kids anyway, I might not be the target audience of your question, but I will weigh in regardless.

There are two components here:

  1. Bringing someone to existence when they are likely to inherit this terrible disease.

  2. Having your children experience seeing their parent with this disease.

You don't have to subscribe to anti-natalism to decide that it would be better to not have kids in this situation.

You could however, if you still want to raise children, but don't want to worry about #1, you can adopt. Plus you will spare yourself/your partner the pain and risk of pregnancy and childbirth, while at the same time give a family to a child who has none. Problem #2 will still be there, but depending on the age of the kid you adopt, they won't be as young when/if you develop the symptoms and therefore might be better equipped to handle that.

[-] Bipta@kbin.social 3 points 1 year ago* (last edited 1 year ago)
[-] Dlayknee@lemmy.world 3 points 1 year ago

I lost my grandmother and dad to Alzheimer's. I feel like it's probably in my future, as well. It's a miserable disease that makes me question a lot of end-care practices and my wife & I are absolutely going to have some strategies in place, but to answer your question we already have 3 beautiful children that I can't imagine life without (pretty sure there's an Alzheimer's joke in there, somewhere). I certainly don't want to put them through what I saw with my Dad, but I also wouldn't want to have missed out on all the wonderful experiences I've had/will have with them on account of a "what if".

Ultimately, the choice is yours to make but you're clearly putting a lot of worthwhile thought into it and I'm sure whatever you decide will be the best choice for you. I'm sorry about your dad & sister, and if you ever need someone to talk to I'm here.

[-] cygnus_velum@lemmy.world 2 points 1 year ago

That means a lot. Thank you. ❤️

[-] reiver@mastodon.social 3 points 1 year ago* (last edited 1 year ago)

@cygnus_velum

Yes.

There isn't much that could make me not want to have kids.

...

I actually already have children. It is one of the best things I have ever done in my life.

[-] macgyveringIt@lemmy.sdf.org 3 points 1 year ago

Absolutely without doubt. I am male 46 year I have a son (19) and daughter (22). I promise that if I randomly pick a happy moment out of my life it will include my kids, I smile when I think about them and I miss them when now that they are back at school. When I think, well they are now living their own lives now and not around as much, I remember how proud I am of them and what they are accomplishing.

As for me getting Alzheimer's at 65, my thoughts would be to enjoy my children and hopefully grandchildren till I no longer can function. Then it's time to "step away", no need to be living without life. All that life is, memories and future expectations.

As for the kids potentially inheriting it I'd have to say life is a crap shoot but they would have many years to enjoy that life if that were the case. I know they would have the strength to deal with it. After all life is what you make it with a few bonus curve balls and sliders to keep you on your toes.

Another thought on your children dealing with parents falling ill at an advanced age (65 and above?? I guess). They will get over it, it hurts but it's one of those inevitable things of life that you are hard wired to deal with.

Don't let a potential future issue rob you of the enjoyment of the present.

[-] ExLisper@linux.community 2 points 1 year ago

No.

If I knew I will definitely not get Alzheimer's? Also no.

[-] giant_smeeg@feddit.uk 2 points 1 year ago

I've had a pretty tough time with our kid and our test has always been.

If that happened today, would I wish she wasn't here. So far the answer is always an unresounding no.

[-] DeaDSouL@lemmy.ml 1 points 1 year ago

Of course I would. Even if I knew I’m getting it in 10 years after having kids.. Because I want to make sure they learn from the person (me) who loves them more than himself. I want them to prepared for the crazy ideas out there. I want to raise them with love. I want to tell them the truth about the lies that unfortunately so many people are believing. I want to prepare them to understand the life, and face when they have to.

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this post was submitted on 20 Aug 2023
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