[jcims]

My wife passed this year from cancer. Looking back we had no idea how close we were to the end, and in the last few weeks her beautiful mind was influenced by the disease. I’m sure someone on HN is going through this at least adjacently and my recommendation is to not wait to the end to have important conversations. For those that aren’t going through this now, maybe for a little while live life like you are...it might inform your priorities and perspective.

My 17 year old daughter was already dealing with a life-altering chronic disease and losing her mom plus all of this pandemic bullshit has really made a mess. She broke down crying last night struggling over the idea of death and that everything seems to be pitted against her. It’s hard to know exactly what to say in those moments, maybe some of these words from a person at the doorstep will help her.

For what it’s worth we do have her seeing both a counselor and a psychiatrist but that only goes so far...at the end of the day it’s you and your thoughts staring at the ceiling while you’re trying to get to sleep for the 5am shift tomorrow.

[gumby]

Seeing your child dealing with loss is the hardest. In my case it overrode my ability to deal with my own grief. Eventually (glossing over the irrelevant details) he came out the other side, and is doing fine. And once I didn’t have to spend all my emotional energy on him I could look after myself.

Your daughter is 17 which may give you additional concern. My child was a few years younger but he missed all of that stressful middle-class “get the right classes, right prep and right scores”. It was simply not possible except a bit of going through the motions. But in the end none of that mattered and he ended up in a place where he probably would have been had he gone through those stressful gyrations. So my unsolicited advice is: if you can manage to support her in stepping off the treadmill and dealing with whatever is the highest priorities for her, she’ll probably ultimately be fine.

There are unfortunately no guarantees, but many people do make it to the other side, however horrible the path may be.

A friend of mine lost his wife a few months ago (she had really stepped up to help me). His three kids each reacted completely differently and I am amazed at his ability to accept the needs of each one.

[jcims]

>Seeing your child dealing with loss is the hardest. In my case it overrode my ability to deal with my own grief.

It really is the most difficult part of this process. If there's a silver lining it obliterated any remaining hubris I had over being able to explain the world to them. I do it when I can of course, I'm still dad, but I have also found a way to just be with them in the human experience.

Both of my girls are incredibly strong in their own ways. They are different, though, and are working through the process of recognizing those differences in each other and how it affects their response to grief and the world in general. My one remaining hope in life is that they find a way to strengthen their bond with each other and remain ride or die for the rest of their time on this plane.

[war1025]

> Looking back we had no idea how close we were to the end

This rings very true for me.

My dad died of brain cancer going on five years ago now.

He was diagnosed in 2014. They were clear the prognosis was not good. One or two years at best.

They removed the tumor as soon as they found it, and he returned basically to normal. There was a weird settling in of what it all meant and treatments that were meant to stall things a while.

But since the tumor was small, he was able to function and be basically his old self.

We had our first daughter in the fall of 2015. He was there to meet her. Everything felt like it was looking up.

Three weeks later, on my first day back to work, I got a call at 10:30. "The cancer is back." I took the day off.

At Christmas, he was definitely starting to act goofy and be more forgetful. We'd have to distract him so he didn't try to go plow the driveway or do things like that.

It became a question of "do we go up every weekend, or can we take this weekend off?"

And then at the beginning of February things started getting really bad and my mom moved him into a nursing home in town. That lasted for a little less than a week I think. Then it was clear this was the end.

So we came up in the middle of the week. Sat by his bedside for hours on end. Held his hand.

My dad had two things he'd always say about dying:

1. When someone comes to die, they need someone to hold their hand.

2. People need permission to die. Otherwise they will hang on way longer than they otherwise would.

So I held his hand for a couple days. And then on maybe the third evening, it became pretty clear he was deteriorating.

So I leaned over, kissed him on the head, told him that he'd done a great job raising me and my brother, and that it was okay and we'd be here till the end.

And then we watched him die. I think it was about 4am when he finally passed.

I never remember what day it was, but I do remember that Lent had just started and he died the morning of Transfiguration Sunday. Which the internet tells me was Feb 7, 2016.

There's a Deathcab for Cutie song, "Love is watching someone die." It's the truth. You have to love someone a lot to be there through that.

Anyway, to come back around, it all just went so much faster than you think it would. Especially towards the end.

It took a little over a month for "Dad's acting funny again" to turn into "Dad died last night".

[jcims]

Thanks for sharing this. When you're in the midst of everything it's important to temper the hope of healing with the reality that if that doesn't come you're in a very special, very limited window of time.

>2. People need permission to die. Otherwise they will hang on way longer than they otherwise would.

I wrote about this elsewhere, but my wife on a couple of occasions said 'I think it's time for you to let me go.' I didn't really understand what she meant by that. She was incredibly stoic and was happy to leave the words for me to interpret. I was still so wrapped up in trying to find a way out that I couldn't conceive of just letting go...it felt truly like those scenes in a movie where someone is hanging off of a building and your grip is the only thing keeping them alive. After she passed, her words gained new meaning to me and this was part of it. Permission to go, and permission to talk about the life that comes afterwards. Not figuring this out in time to alleviate some of her pain and let her share her dreams about the future without her is one of my biggest regrets.

[lordnacho]

> > Looking back we had no idea how close we were to the end

Happened to me as well, on several occasions.

My dad passed away just before New Year a few months ago. At the time I thought him going to hospital was going to be yet another scare, and he should just get his act together and eat properly and exercise. Never got around to it, and his last words were some gibberish.

I felt like maybe there should have been proper last words, but looking back there were. His terminal stage had actually started a few years before, at a bypass surgery. At the time he told me that if the surgery didn't work, he'd be happy to die. Life had treated him just fine, no big issues with anyone to report. Happy with having three kids and a couple of grandchildren. Nothing left to do.

And so the next three years passed with him not doing anything the doctors had told him to do, and we got used to periodic ambulance calls (heart attacks, blood sugar incidents). Somehow he made his life summary come true, nothing more to do.

On another occasion, one of my high school classmates passed away from cancer at 29. I knew he'd had it before, but then it seemed to pass, and being young I thought it wasn't a huge problem because he seemed chipper and full of zest. He had a girlfriend and a career. When it came back I figured I'd drop by to see him, but in a few weeks on my holiday. Ended up being sooner, for his funeral.

[aagha]

This utterly breaks my heart. I'm so sorry for your loss.

I too lost my mother to cancer and was there the morning I noticed hear breathing change and could tell she was about to leave.

It's hard to fathom when someone that raised you suddenly leaves your life. To this day I remember her last moments and my own wailing at both the moment she passed and when I crumpled to my knees as she was buried.

[yodsanklai]

> It took a little over a month for "Dad's acting funny again" to turn into "Dad died last night".

I lost my mother from lung cancer so I can relate.

My dad on the other hand died without notice. I got a message on my phone one day when I was at work. It was a cop from my father's town. They didn't tell me why they were calling, but I knew something happened to my father because he was living on the edge. I took the day off and went home to call them back. He died a few days before at his home.

He was too young to die, but I think it was the best possible death, for him and for us. We didn't have a chance to "say good bye", but it doesn't really matter in the end.

The worst part of dying is anticipating death. I wish I could die accidentally.

[jcims]

I agree. I got a similar call that my dad was killed at work when I was in my early 20s. Due to the circumstances I'm not convinced it wasn't intentional on his part, and in some odd ways I get a bit of relief from that. It was devastating to me, but watching my wife and the mother of my children go through a tortuous 26 months of treatments, unrelenting pain, cycles of hope and despair, various indignities and ultimately passing in a confused state was orders of magnitude worse.

[dmerks]

Similarly, the despair and agony is really what hit me most. Last autumn, my father began experiencing occasional cramps in one leg after a regular 75k bike ride. During the following month, the pain gradually spread throughout his body and increased in frequency, seemingly for no apparent reason, based on medical tests and scans. He slowly stopped eating as his body was being consumed day and night: he lost healthy weight at a rate of one pound per day. As muscle weakness spread and as he lost his faculty to walk, he grew steadily delirious with pain and lack of sleep. By the 1st of December, he was in hospital full time undergoing a barrage of tests to no avail; a diagnosis of ALS was given mid-month. During the following week, he spoke his last words. In the throes of his body collapsing, he would tear out IV and catheter. At the rate at which his situation was deteriorating, feeding tube and intubation coupled with restraints appeared cruel. He passed before the end of the year.

[alexpetralia]

Thanks for sharing.

[sacks2k]

"Looking back we had no idea how close we were to the end"

This happened to me as well. My brother passed at age 47 in 2013. He was initially diagnosed with stage 2 colon cancer and things seemed to be going alright for about a year.

The issue was that the tumor was near a major blood vessel and surgery failed because they were afraid he would bleed to death.

Even after this failed surgery, we had hope with some experimental treatments. He lasted another year.

After a couple of rounds of chemo, he went from bad to worse within a couple of weeks. I had never experienced death like this before and it all came a a shock to me how quickly he passed away.

The worst part is that he fought the idea of death to the very end (I'm sure we all do). There were no plans for his one-man successful business and his wife had to get all of his passwords for important accounts when he was delirious from all of the drugs in his system and nearly on his death bed. He truly thought he would beat it.

The aftermath was like a bomb went off in our family.

His wife begged me to help her with his business on the day of the funeral. I realized he had been neglecting customers for 6 months+ (this is completely understandable, given his condition) and they were screaming for their money back. I spent many weeks/weekends/long nights cleaning up the business and getting the business back to a reasonable level, gaining back customers that would have been lost. This was all for free, to help her (and his kids) out. I explained to her that future work would not be free.

I also had to help her return all kinds of electronics that he bought while he was on chemo drugs. He managed to rack up $50,000 in bills because he would forget that he ordered something..and order 10 of them.

To this day, I'm not sure how she didn't notice all of these amazon packages coming to the door and thinking nothing of it.

After this was done, I told his wife that if she wanted me to continue with this business arrangement, I would need to be a partner in the business. She not only didn't want to do this, but told me I only 'answered emails' and didn't do any actual work, which was clearly not true.

She wanted to give me a free cell phone and pay me around $10/hour as compensation for future work. It was also explained that she had contacted a lawyer and it was stressed that all of the intellectual property from the business was not mine. Kind of strange to me to already assume I'm going to steal intellectual property from you when I just saved you many thousands of dollars and your business..for free.

At this point you may be thinking she's just naive and may not understand the work involved. She worked in the computer industry for a decade. This is how she met my brother. She understands the work it takes to run his business and only wanted to take advantage of me.

As an aside, my brothers business involves: tech support, software development of multiple products in at least 3 languages, and knowing the business. I have the ability do do all three, since I have been in the software/tech industry for the past 2 decades and have owned multiple successful companies. Him and I were very close and I had lots of knowledge about his business and what it entailed. We had ongoing tech discussions through email/chats/in-person for many years.

He was the one that bought me my first computer and was my mentor.

4 months later, she emailed me a contract with a proposal. I would get 5% of the profits for working on it full-time and her kids would own 100% of the business. This was a slap in my face and I declined the offer. With the declining profits in the business, this would have been like working at

The problem is that I would need to work on it full-time to actually save it from failure. If I signed the contract, only worked on it part-time, and it failed, I would be blamed. I also don't like to half-ass anything...especially when it comes to running a business.

She then proceeded to get anyone she could find to work on the business for free and started creating a wedge in my immediate family by spreading false information about the situation. She ended up roping in one of his clients, who had become a friend, to answer all emails for free.

She describes him as a 'good, christian, man'. The funny part is that she was never that religious..and I've known her for 25 years. One of her greatest traits is the ability to manipulate people. All of her friends are people that can do things for her. If she can't use you for something, you are cast off and ignored. She especially likes networking with anyone that has lots of money.

Fast forward to 2020 and the website is in terrible shape. A 7+ year out-of-date website that keeps getting hacked and badly mis-configured DNS records. I told her how to fix these on the first day, but my advice was ignored. I can only imagine how insecure the actual product is, since there have been no updates in all this time.

I also found out my other brother has been helping her for free and outright lying to me about it. I overheard a conversation a couple of days ago that they wanted to keep secret from me. He also has no idea what he's doing and badly butchered the site...but the price for his services is perfect (free).

I just wish my brother would have admit to himself that he may die and specifically write out his wishes for the business in his will. I think it would have prevented this entire situation.

I should probably thank him. It showed me that his wife is still the evil, conniving woman that she was many years ago and that she never really changed..she only got better at hiding it before he died.

But there's now these lingering issues at all family gatherings.

I now own two successful companies. I don't think I would have ever gotten to this level of success, even with a partnership in my brother's company and a business partner that would only fight me on every important decision.

[treyfitty]

Thanks for sharing your personal story. I think it’s important for everyone to realize that we are all human. Nothing more, nothing less. The world has become super competitive to the point that we all seem to forget this simple fact.

[jcims]

For me it's a bit cathartic, if it helps anyone see through the blind spots I had it's worth it.

[metiscus]

I have found that in my own times of trouble and profound sadness that two books have helped me cope. The first one, which is admittedly hard to read when you are very close to a loss (better to inculcate yourself with it ahead of time if possible) is the Enchiridion of Epictetus [1]. The second is Siddhartha by Herman Hesse. What works for me will probably not work for you but I thought sharing my experiences with you might open a path of exploration.

You will overcome this. Your child will too. On a long enough timeline even the most profound grief reduces to an instance. Be well my friend.

[1] http://classics.mit.edu/Epictetus/epicench.html

[jcims]

Thank you, I will definitely take a look at these.

[12xo]

This is where faith steps in... There is wisdom in the ages that will help you and your daughter. Try and find a pathway of peace and guidance from the universe's deep pool of human experiences.

[JKCalhoun]

Agree. Not a religious person myself, but there are times in life when there are no answers, nothing that anyone can do, when fate is completely outside anyone's control.

When everything else fails, you have left only your strength of will against reason. And spirituality may be the only thing to give you that strength.

[fredmonroe]

for me personally - the multiple times in my life when i have been in the process of putting someone in the ground - this kind of comment was right at the top of the list of the least helpful things people said.

[gumby]

Appropriate for some people, irrelevant or worse for others. I know you mean well and don’t intend to harsh on you, but I think your statement could much better have started “this is where religion might offer some solace”.

Every person has to make a different journey, and no tool is appropriate to everyone.

[12xo]

I am not religious. Never mentioned religion. Only faith and the deep pool of human experiences shared by all people. The fact that you cannot separate the two, is a problem for you and you alone to resolve. Think outside your parameters and you might find new knowledge and growth

[jcims]

I agree, I just need to recalibrate my perspective. There are certainly those that have gone through this and worse, and faith has helped them and their loved ones.

[slivanes]

Christian faith would have you believe it is God's will that you perish at His time of choosing. He also loves you.

[jcims]

My girls were raised Christian and I and my wife practiced and professed that faith our entire relationship. I haven't given up on the faith but I am so profoundly disappointed in the modern church that I need to go back to the root of it all and see how much it still resonates.

[Diesel555]

It sounds like you are disappointed in what people who are in the modern church, publicly speaking that you have access to, are saying. There will obviously be an availability bias on how we each perceive the "modern church".

If you don't believe in what the Bible says, then disregard everything below.

Try reading the Bible. As a whole. And if you have, do it again. Don't let individual versus taken out of context influence major decisions. Know who wrote each chapter (if we know that), who they were writing to, and why they wrote that chapter to put everything in context. I found I was reading too fast and missing major parts. Also translation makes a big deal - some words just don't translate properly - and a good Bible will have footnotes to explain the original word. There are lots of plans out there.

Then, I think, you will realize that what those in the modern church you are referencing are saying should disappoint all of us... and it's not in alignment with the Bible and Jesus' teachings, and you can see where they don't align. Not all churches are that way. Anyways go to the source (if you haven't already).

[jcims]

You nailed it. Exactly my plan.

[stjohnswarts]

Have you been to a Unitarian Church? They tend to do away with a lot of the politics and dogma and stick to the core and have better camaraderie than any other church I've been to. I'm an agnostic, but I'm always up for hanging out with cool, chill people. I mean if you're actually a believer and such it might be cool. Bahai meetings were the only other one I've been to that rivaled. They're the polar opposite of the BS laden evangelical movement trying to bring in politics and money to everything.

[jcims]

No but i've heard good things. May give that a try. Thank you.

[combatentropy]

> back to the root of it all

https://www.amazon.com/More-Than-Carpenter-Josh-McDowell/dp/...

https://www.amazon.com/Mere-Christianity-C-S-Lewis/dp/006065...

[Der_Einzige]

Yes! Gnostic revival! Make it happen!!

[metiscus]

I'm not sure how to interpret what you have written but assuming good faith - there are things and states worse than death, particularly when analyzed from the point of view of the individual. It is widely considered humane to terminate the life of a suffering animal when no hope of recovery is possible. Such a thing could even be considered an act of love. Depending on a deeper analysis of free will and religion it is feasible that a God is both capable of controlling your death and simultaneously loving you. I'm not a serious believer so I will leave the free will discussion and points of doctrine to others.

[jacobush]

Regardless of what you, downvoter, believes -

thinking on something outside yourself is helpful, even empirically. You might not agree with the specific flavour, but even something as bare and nonspiritual as Seneca can help.

[metiscus]

Having a mental structure either exogenously adopted or of one's own construction to apply rationality to temporarily irrational losses seemingly is a very good thing for ones mental well-being. I've found great comfort in Epictetus and in the Bible although I follow neither dogmatically.

[amoorthy]

I'm sorry to hear of your family's struggles. Your advice is spot on and something I discovered during a 10-day Vipassana retreat. I wish I could say something to help your daughter or you. Maybe that beauty and happiness are possible in the smallest of everyday things even as we deal with horrific pain. It gets better somehow.

[jcims]

Thank you.

[fnord77]

> It’s hard to know exactly what to say in those moments

often just being there for her is more important than saying anything.

[danielovichdk]

Shit! I cried reading this. Take care and all the best of everything from me to you.

[profinger]

I just want to say I'm really sorry for everything you're going through. Life sucks overall right now so I can't imagine adding what you and your family are going through. I assume you and your daughter have a good relationship based on the situation but, if not, I'd try to be as vulnerable with each other as you can manage. It'll really help turn you guys into support structures for each other which is really helpful when things are as rough as they are right now.

Good luck to you and your family.

[jcims]

Thank you for the kind thoughts and words, and I totally agree with your recommendation. It’s going to take some time, but we’re moving in the right direction.

[benwills]

As someone without much of a relationship with my father, it really makes me really glad to see another father with a child who loves their dad enough to cry to them.

It sounds like you've been taking a lot of care of others. I don't see anyone else mentioning this in replies, but please make sure you're taking good care of yourself, too. If you haven't in a while and are able to, consider getting a good meal, taking a night off, or just doing something you enjoy doing for a couple days.

Hang in there.

[jcims]

Thanks buddy. Our relationship is good but on a few occasions I've heard each of them refer to it as some variation of distant. It breaks my heart because even if I did everything again I don't really know how I would fix it. It's possible I tried too hard to let them find their own way without undue influence from me, maybe a little bit of both is good there. I don't know, but if they choose to have their own kids I'm going to apply whatever I have learned along the way to be the best damn grandpa I can be.

Appreciate the well wishes. I am on a road of trying to take better care of myself as well, hopefully they will see that and be encouraged that the old man is here for the long haul.

[chunky1994]

This made me cry, very suddenly and unexpectedly. I know it will probably not mean anything tangible but I am so sorry for your loss. I hope you and your daughter are able to come out of this ordeal stronger than you went in.

[jcims]

It actually means everything. Thank you.

[apple4ever]

My mom died from Frontotemporal Dementia.

She was diagnosed and was dead with in a year. But she experienced symptoms for at least a year before. For about 1.5 years I don't think she really understood much of what we said to her, and of course the last 6 months she was basically a child.

Near the end I told her I loved her and she was a great mom, but I really should have told her that 2 years before. Its one of my biggest regrets.

Don't wait. Say it now.

[kilroy123]

I don't have anything to say other than I'm very sorry. I know it's not enough but I really feel for you.

[jcims]

Thank you, i really do appreciate it.