This hits home. I've been taking care of my father for years. He has dementia, COPD, and a bunch of other issues. In a lot of ways it's like the pandemic never ended for us. I barely leave the house other than for trips to the grocery store and doctor's visits. It's brutal.
Sadly, I'm also recognizing that as a man pushing 50, I'm not very good at asking for help. I don't. I'm also not good at maintaining strong social ties. Both of these are things I hope to get better at. It sounds so easy, but I struggle with both. Especially while managing the ups and downs of my mental health and taking care of my father.
That said, I'm very grateful that none of this triggered a relapse of my drinking. That would not be good. For the most part, I use meditation and exercise to hold myself together.
Sharing this doesn't excite me, but maybe there are other caregivers out there that feel the same way. And for those of you with children, please plan for how you're going to handle your late life care.
Fellow man pushing 50 here. I'm caring for my mom who has COPD and is starting to show signs of dementia. She lives a couple hours away and I just started a job that's 3-4 hours in the opposite direction, so I'm balancing a long-distance weekly commute along with weekly trips to cook, clean, do shopping, etc. Due to how this eats up most of my free time, it's actually made me better at squeezing "self care" into my schedule since it's become clear that it's not something I can defer to later, since "later" may not come for several years.
It's not at the same level as your dealing with, so I'm writing this mostly to offer support and to be glad that you've found some activities to help center you. I do encourage you to try to find some help, even if it's just for some small part of the care, like cleaning, shopping, bathing, whatever.
Same here, I'm quite a bit younger but my living situation and finances are also determined by taking care of my elderly parents. It's a lot different culturally than my surrounding peers who either don't have parents as old or don't bother to care for them in the same way.
It changes who I can spend time with and what I can do, and required me to grow up a lot faster than it seems like those around me. I didn't have the same amount inviting random people over, hosting house parties, or going out for drinks the same way, which I sometimes wish I got to do more of. But we play the cards we are dealt and try to do the most right for ourselves and the people around us I guess!
Thanks for sharing this. I used to care for my grandma back home (Alzheimer’s), but the financial burden is brutal. I moved countries so I could be able to afford caring for her but ended up leaving the large part of the physical work for my mom and sister. Thankfully I can now afford to support her financially much more, including paying for a dedicated nursing home nearby my moms.
I’m 35 now and keep wondering how future is gonna be as I have no kids and no desire in having them (also not wishing them a life where they would have to care for me)
I’m trying to keep my health up now and dedicating more time for it so I can hopefully hold the fort.
Thank you for sharing your story. It’s something I think about a lot as my parents/in-laws age (I’m 40 and parents all in their 70s in decent health but feels like a matter of time… already a few cancer scares).
I’m curious if you work with a therapist at all. Seems like a lot of what you mention struggling with, it could be helpful to have that weekly neutral observer to talk to.
Sidebar: great advice on planning for my own late life care. The analogy I always hear is “put your own mask on first” when it comes to financial planning. Paying for college / weddings / down payments on houses for the kids would be great, but far more important to make sure financial retirement goals are being met for myself first.
62, and caring for a couple of close family members with serious mental health issues.
It’s a good thing that my “not drinking” (for 44 years) also gives me a seriously good support structure. I have a lot of engagement outside the house, but my family members almost never leave the house.
That does truly does suck. There may be some resources available from your local county under Medicaid/medicare, hopefully respite care and paid nursing if you can’t get your dad into assisted living or don’t want to do so.
My partner is undergoing chemo for stage 4 sarcoma and co-incidentally, my 13 month old happened to get sick on the day my partner started (around 2 weeks ago)
Looking after a sick toddler by myself, whilst also trying to juggle WFH has been... I haven't felt this level of depression and hopeless since my early 20s. I've never been more overwhelmed in my life.
Honestly, there is no coping mechanism in that scenario. You're being pulled from 20 different directions, the house is a mess, you're emotionally a wreck. It honestly feels impossible.
Thankfully yesterday I was finally able to put her into daycare and the weight that was lifted from my shoulders was immense.
I'm honestly worried for the future and I might just have to quit my job if it comes to it. But that's just life. I never knew it could be so brutal.
As a fellow 13-month-old parent, I'm so sorry for what life is throwing at you. Hang in there and feel absolutely no shame or guilt for letting anything go. If some responsibility has to get dropped on the floor, so be it.
i wish there were more resources for caregivers tending to family with mental health issues.
unlike a physical illness or disabilities where there are clearly defined caregiving tasks (e.g., helping with mobility, bathing, administering medication), it's primarily emotional/mental burden where you can't just ask a stranger to stop by and help out for a couple days (not to say that there isn't a mental/emotional burden with all forms of caregiving).
couple that with the social stigma many people feel about mental health issues, you will most likely have to fulfill your caregiving role secretly in the privacy of your home so it isn't possible to find a community of other people in a similar situation.
it's overwhelming and isolating. and when you do start looking for resources on how to take care of yourself or searching for some community where you could vent and feel understood... all you'll find are lists of tips for "here's how to help your loved one start therapy". i know they mean well, but it just reinforces the idea that you were wrong to have been thinking about your own needs and you really just need to be more selfless and more dedicated to supporting your loved ones.
I see you. My wife has bpd. It's such a hard condition to explain, and most people in my life (even my loved ones) are so far removed from the experience it sometimes feels like I am talking about my experience visiting another planet. And this is from people that love me and are trying to support.
Couple that with the "top 10 tips" as you said and it's just soul-crushing.
Thankfully I have finally found some people who are in similar situations and even the feeling of being seen brings so much relief.
I'm in a long-distance[1] situationship[2], and my significant other has bpd (we believe) as well as other difficult co-morbidities.
I'm also trying to be supportive and help, but I'm often at a loss over how to help. A lot of the time I listen and nod along with "yeah that sucks." But it feels like all I can actually do is try and find the optimistic side or solutions to problems, and most of the time I get shut down as they can only see the negatives. I can't blame them, but what else can I do?
I'm trying to be caring, but also stay partially detached in case the worst happens. The election results are not helping.
I may be oversharing, and I don't know if you have any advice to give. But I have not met anyone in a similar situation. I wouldn't even know where to find them, or if that would even help.
[1] Started off in the same place, but we both had to move back to our home countries.
[2] We are young and it doesn't seem right to plan our lives together so early. Especially since it would involve moving countries, potential career ramifications, a lot more caretaking, etc. We didn't start the relationship thinking we would be together as long, but at this point breaking up with them would feel like abandoning them to their situation.
> I'm also trying to be supportive and help, but I'm often at a loss over how to help. A lot of the time I listen and nod along with "yeah that sucks." But it feels like all I can actually do is try and find the optimistic side or solutions to problems, and most of the time I get shut down as they can only see the negatives. I can't blame them, but what else can I do?
(Caveat: I have experience with people who have other conditions, but not with someone who has BPD.)
Look at the other messages here: What do people need? To be seen. To not carry the burden by ourselves. That is what your significant other needs. See them, be interested in them, be curious about them - just for their sake, as they are, as if they were valuable and lovable and important as they are. Give them space to talk, without any resistance at all from you; wrap your arms around them, physically or emotionally, and let them be and talk.
Leave yourself and your ideas out of it, way out of it. As a crass comparison, it's a bit like looking at a painting or reading a book that you love - you dive into it, you leave yourself behind, you want to know more about the author, the characters, what they mean, what they are thinking ... they have nothing to do with you.
Problem solving is a much different mode - those are your ideas. That has always been my instinct and I've had to learn to leave that behind. Unless someone makes clear they want it, just listen. Your S.O. doesn't need to be right or wrong - it doesn't matter. They are just very, very lonely with their condition.
Imagine you have a problem that is not only awful, overwhelming and terrifying, but others condemn you for it (even though there's little you can do), ostracize you for it. Even your loved ones don't want to know the truth, the reality of it - they can't handle it, amplifying your isolation and pain; they pull away. Don't pull away.
Your words are going to stick with me. Powerful. In particular, I feel like your last paragraph is very close to what my SO is going through. Thank you.
I have a hard time making the decision between listening mode and problem solving mode. Surely there are times when problem solving mode is helpful?
I understand the "only when they ask for help" idea, but this specific person does not have the instinct to ask for help, which makes it difficult.
Or when they do ask for help, it is for such general large abstract problems that I am also at a loss of how to give actionable advice.
I'm glad you found it helpful. I don't know you or your SO at all, so here are some general thoughts that help me:
> I have a hard time making the decision between listening mode and problem solving mode. Surely there are times when problem solving mode is helpful?
All I can tell you is that everyone seems to have this thought and the endless drive to insert themselves into the conversation, and we all find endless rationalizations and opportunities and exceptions - this time is special! - that will allow it. Me too. Recognize the drive; zip it. 'No, this time is not an exception - again'; just zip it.
It also means your attention, your thoughts, your emotion are focused on yourself, your ideas, your drive to talk, and not on your SO. That is a fundamental mistake of listening. Good listening takes your senses (visual, audial, maybe touch, etc.) to pick up what they are communicating; all your concentration (emotional on their feeling, intellectual on the words, etc.); composure (body language, etc.); emotion (they can see and sense it, of course); etc. Turn your attention away from yourself and focus it on them - like swiveling a big camera on a movie set, you are behind the camera, focused on the actors and silent now.
> I understand the "only when they ask for help" idea, but this specific person does not have the instinct to ask for help, which makes it difficult.
I don't know you or your SO at all, as I said, but here is a common trap: Maybe they don't ask because you already push it on them too often. They feel trapped, pressured; the last thing they want is more 'advice' - not that you have bad advice, but they need space, less pressure; they need to figure things out themselves without having your ideas fill the space, distracting their attention, and demanding responses. So they don't ask and then you see that and push more on them - a reinforcing cycle in the wrong direction.
Start a cycle in the right direction: If you back off, give them as much space as they want without resistance (or asking - 'can I tell you now?'), eventually they will flourish, come around, open up, and feel much happier and safer, and probably ask you. It may take lots of patience - and if you are struggling with the patience, you still have a problem with your personal drive and the focus of your attention (it took a long time for that to diminish in me).
> Or when they do ask for help, it is for such general large abstract problems that I am also at a loss of how to give actionable advice.
Look for the emotion behind their worry, and help them find their way through that. They are lost in the woods so help them find their way through; telling them what's on the other side doesn't really help.
People need money. Being a caregiver is financially devastating because those who need the care often exceed their means, and society expects caregivers to pick up the tab. We've emphasized quantity of life over quality of life; that diminished quality of life often comes not only in the form of physical and emotional suffering, but also impoverishment.
And in the US, caregiving about to get even more financially devastating as the ACA is either repealed or gutted.
I don't know... My older brother took the exact approach you just outlined with his SO, and he did it with more sincerity and compassion than anyone I know. She has a handful of illnesses and it has completely wrecked his life to the point that he might as well be dead. He isn't the person I grew up with. In a lot of ways, he already is dead, and it sucks really bad. He no longer is the compassionate person I knew. He doesn't have control of his own physical health anymore. He has no friends. It is a terrible situation. My point is that if it looks like beinf supportive is going to wreck your life too, maybe it's not worth it, especially when you're young.
Before everyone downvotes me and has a knee jerk reaction, consider that I have told you next to nothing of the entire situation, so you'll be responding to something you know nothing about.
As someone else said, that is extreme. But I honestly believe you.
I appreciate the words of warning. I believe I'm being careful about my own situation, and I have a decent support network myself. But I know it's a risky situation to be in.
I'd like to hear more about your situation with your brother. Maybe there's something I can learn from it. If you prefer not to share publicly, you can send me an email at partner_privacy@proton.me
Wow, that's pretty extreme! It's hard to imagine how someone could write something more extreme.
I don't see how listening to someone in a different way, which is what I described in the GP, would cause someone to lose control of their physical health, lose their friends, etc. ?
> but at this point breaking up with them would feel like abandoning them to their situation.
I have no special psychology experience but this feels like a red flag to me. Guilt is not a good foundation for building a lifelong relationship with someone. You deserve a partner that supports your needs as well. There are so many people out there with problems and there are ways you can help people without being their romantic partner if that's what you choose to do.
I appreciate your concern. I recognize it's not a great situation. However I'm not really sure it's helpful to put it in terms of flags. Maybe I'm missing your point.
I'm not really trying to build a relationship out of guilt. I'm already in this relationship (whether romantic or other doesn't really matter).
Also I don't understand this part:
> There are so many people out there with problems and there are ways you can help people without being their romantic partner if that's what you choose to do.
If you allow me to strawman you for a second, you are saying to cut contact with them and instead volunteer with a non-profit organization? I feel like I must have misunderstood you, so please correct me.
For what it's worth, they do support my needs as well. No complaints there. They are actually amazingly considerate and supportive given their situation.
Me and my wife were long distance too, through the worst of it, and during covid (Brazil to Europe).
There's certainly advice I can give , or at least experience I can share. It's a pity we can't message on this platform so if you want to send me an email to flatnailedfeatherlessbiped@proton.me, we can chat there
I'm in the same situation. She refuses any treatment.
I learned too late that mental illness may be a reason but it's never an excuse for behavior.
Make sure you keep your cup (and your childrens if applicable) full before you do anything to fill hers. Otherwise you will wake up one day miserable, fat and poor.
I am so sorry. I see you. My wife is bipolar, HSP, ADHD… it’s called severe mental illness for a reason.
I was eating blue pills for 20 years. I finally took the red pill and realized it wasn’t going to change, we weren’t going to find a magic cocktail, she isn’t going to find stability. Now I am stuck between a rock and a hard place with no option c. It is miserable.
The airlines have it right, ‘Put on your mask first.’ If you are hypoxic , you can’t help anyone. Care giving is all about self care.
Lucky I only ate the blue pills for ten so I'm 35 and have a chance to turn my life around.
The advice for men that you often see essentially boils down to, "work harder to make her happy" that doesn't work for mental illness, in my case it made her more entitled, adulterous and rude.
I need to save up money to defend myself against her lies, document her mental illness so I can prove to the court she isn't a fit mother and get me and my kid out of here. It's a long road but I'll get there eventually.
> It’s common to experience a wide range of emotions as a caregiver. You might feel frustrated, sad, resentful, joyful—all in the same day or even in the same hour! These feelings are a normal part of the caregiving experience, and it’s okay to express them.
I think this one is the most important and it extends to everyone, not just people in a caregiving role.
Be able to forgive yourself. Past mistakes, things you said, or did, or didn't do. All the the showerthoughts that make you cringe up. Don't be so hard on yourself. Forgive.
It's especially true if you're taking care of a dying my family member. They will pass and then suddenly you have time to remember all the things you did wrong, or said out of exhaustion and frustration, and you won't be able to apologize. Truth is none of those things matter. What matters most is you did the best you can for them and that you were just there for them.
> It's especially true if you're taking care of a dying my family member. They will pass and then suddenly you have time to remember all the things you did wrong, or said out of exhaustion and frustration, and you won't be able to apologize.
This is so true that it can only be known by experience. And you will carry the mental burden (unavoidable) for the rest of your life, though with the passage of time it does get easier.
I have been taking care of my partner suffering a chronic illness for 2-3 years now and it is phenomenal that this on the top of HN. I've had to figure out a lot of this for myself having made many mistakes and I still just learned about Respite Care. Thanks OP :)
Not to diminish or confuse the challenges of caregiving, but most of this is also be generally good advice (if not complete) for someone burning themselves out at a very demanding job, startup, school, etc.
Most of it is also good advice in general.
Maybe something significant about saying it to a particular group like this is to both remind of general good advice, and to clarify that, even though it seems you're in an exceptional situation, the good advice still applies or may be more important now than baseline?
Absolutely right, and I’d define that sort of job as a caregiving role as well. A team, organisation, charity or club can be a dependent and it can feel impossible to walk away if you’re deeply invested.
I've been a caretaker off and on for about half a decade now. I also have chronic often debilitating illnesses. Sometimes we are both in inoperable states and it can be scary. My ability to work remote is probably the reason we aren't on disability or in the gutter.
Not looking for pitty or kudos I work hard and pay the bills. I only want everyone to take a deep breath before they crap all over someone at work, or sniff at a resume. You never know what someone's situation is. Usually that's when someone has to leave to recover because corporate structure doesn't support disappearing for a week when PTO has run out.
Wikipedia - https://en.wikipedia.org/wiki/Codependency The description talks about negative aspects but we need to understand the essence and apply it constructively to caregiving where both are codependent on each other though it is imbalanced.
When I watch my sister talking with my mum about health problems, I'm aware that - as a man (and a programmer) - I repeatedly fall into the trap of 'trying to find a solution'. So I humbly suggest to all the other men/programmers out there who are caring for someone else, always try first to acknowledge what someone is saying to you, rather than trying to jump straight to a solution, because the latter can sometimes appear to be ignoring that person's feelings or condition, or failing to acknowledge them.
Taking care of yourself means authentic emotional expression and it's crucial to health, as it reduces this internalized stress, helping to maintain both mental and physical well-being.
In The Myth of Normal, Gabor Maté argues that suppressing emotions, particularly anger, can weaken the immune system and lead to chronic illness, including conditions like multiple sclerosis (MS).
Maté explains that repressing anger -- e.g. due to societal or familial pressure to avoid conflict or "be nice" -- creates internal stress, which over time harms the body’s immune response. This chronic stress actually triggers autoimmune disorders, as the immune system starts to attack the body itself.
I'm have relatives in the elder care industry and I've been a caregiver myself. This options presented here are laughable.
Modern medicine has extended lifetimes so that people spend an extraordinary amount of their lives in a state where they are miserable and helpless. The less fortunate among us do not have the resources or the options to accommodate them and so spend years in desperation.
The effect of this list is to inspire guilt and feed despair in people beyond the end of their rope: some you're somehow not making it work, while apparently others are. You must be a bad person.
Surely further privatizing health and elder care is the answer!
Our glorious president elect even leads by example, repeatedly recommending his nephew illegally euthanize a disabled son. If only we all had fathers like Trump Sr., to make us tough and hard men who will either 'succeed' (bankruptcy doesn't count!) or be driven to alcohol and suicide.
Can't have that filthy socialist communism infecting the minds of the young! /s
Speaking as someone who was the sole caregiver for both my parents, one of whom had a truly awful Alzheimer's journey, I find the bullet points in this listicle rather aggravating.
Take time for yourself? Get help? Take a break? No shit. Now tell me how. If I had the money, resources, or available other people to help share the load, I wouldn't have been where I was.
Most caregivers are in this situation because they're it, the last line of defense. The isolating, overbearing difficulty comes from knowing what you need, and not having the resources to get it. The article has real "Are you starving? Try eating food!" energy.
These sort of situations are very difficult and what the Human psyche needs is reassurance that as Alexandre Dumas wrote in The Count of Monte Cristo all human wisdom is contained in these two words,—'Wait and Hope.' In that sense these articles do have some value.
Perfectly timed article ! I went through this last month, had a major panic attack and realized I had totally forgotten about myself. First thing I started doing was focus on physical health as that works faster and is easier to manage than mental health.
If that 20% does not include those raising kids, then it's crazy high. People should be free to live their own lives and make their own choices. And those with nurturing instincts should be well compensated to care for those we can't or won't tend to 24-7. No one should be alone with around the clock care of another human.
Of course we should all pitch in with whatever capacities we do have. But it must not be all consuming. And not block off our own opportunities to a life of our own.
Always nice to see content like this come up. It's a struggle to do self care. Wrote something about this last week because I've been struggling for awhile too.
sometimes the obvious advice is the most important to hear. thanks for posting.
unfortunately the nature of some health problems that require a caregiver, makes both the sufferer and caregiver into social pariahs. in that case asking for help is unlikely to work well. but even in such cases the other advice is very sound.
I have a 3.3 year old toddler who cannot sit still and I feel like I have zero time to myself anymore, we don't have familial assistance and my partner has a stressful job and frankly I can't remember the last time we were intimate, this is hard AF
I have personal experience with this and wrote about it here - https://news.ycombinator.com/item?id=39394432 Others might also find it useful. I think of it as my "second career" and am now looking at what to do for the rest of my life as a "third career".
As Humans with strong bonds to others it must be thought of as "Our Duty to Do" and in particular; Filial Duty is paramount (assuming "normal" Parents).
Lessons learned and Advice;
1) It will be very difficult and exhausting both Mentally and Physically (we are designed to be selfish and altruism is hard). But you will have to develop "mental attitudes and physical behaviours" to cope with all circumstances and build up fortitude.
2) Techniques from Philosophy and Science should be employed to develop proper attitudes and behaviours. For example from Tibetan Buddhist "Mind Training" practices (Lojong - https://en.wikipedia.org/wiki/Lojong and Tonglen - https://en.wikipedia.org/wiki/Tonglen) one can train in compassion and willingness to suffer for others so that we can always maintain a positive outlook (this is key). See the book Essential Mind Training: Tibetan Wisdom for Daily Life by Thupten Jinpa for some of the original Tibetan texts. You should also read the works of Stoics Epictetus, Marcus Aurelius, Seneca and Cicero for developing mental strength.
3) On the physical side, set up your daily schedule around the patient's and do things together as much as possible eg. eating breakfast/etc. together, watching movies/just talking/going out/etc. together so that they never get a sense of being "alone and abandoned". Make sure to have a proper nutritious diet and take frequent naps/entertainment during downtime. You are not giving up "your wants" but merely re-scheduling it around "somebody else's needs". Do/Maintain proper Exercise (light and not too heavy) so that you are in good health and do not have to worry about yourself (this is key).
4) Time is finite and in order to do the above you will have to give up somethings you love and like to do. Be strict with yourself and give up all "your wants" which will hinder your duty and only add them in if you can make time for it without hurting the "patient's needs". Be clear in communicating your duties to others(friends etc.) so that they understand your situation and can maybe help as needed. You have to establish a new equilibrium with your environment.
5) Periodically you will fail in your caregiving and blame them/others (we are selfish animals after all) but that is ok as long as it does not become frequent and a pattern/habit. Catch yourself slipping on "your duty" and get back on track and show you mean it with extra care talk/action.
Finally; always remember that nothing can overwhelm you unless and until you allow it to. Everything can be managed with knowledge, action and discipline.
Seconding the Stoic recommendation. Meditations got me through a lot of rough patches.
And I know exactly what you mean about First, Second, Third Career. I'd had my First before my parents got sick. Then 2008, divorce, house sale, parents (living 500 miles away) can no longer mask their rapidly-progressing Alzheimer's, all in the course of a few months. Second Career was definitely a shock to the system, balancing their care against my need to work and earn money to pay for it all. Hardest thing I've ever done. It has now been a few years since Third Career has started, and again, seismic shift in how I approach things. I am at peace with my choices, though. No regrets. I loved being able to take care of the people that loved me.
There's another option: abandon your responsibilities. Modern capitalism demands that you spend your time competing, and lots of people are not able to keep up. Return to natural state of leaving behind the infirm to die.
This hits home. I've been taking care of my father for years. He has dementia, COPD, and a bunch of other issues. In a lot of ways it's like the pandemic never ended for us. I barely leave the house other than for trips to the grocery store and doctor's visits. It's brutal.
Sadly, I'm also recognizing that as a man pushing 50, I'm not very good at asking for help. I don't. I'm also not good at maintaining strong social ties. Both of these are things I hope to get better at. It sounds so easy, but I struggle with both. Especially while managing the ups and downs of my mental health and taking care of my father.
That said, I'm very grateful that none of this triggered a relapse of my drinking. That would not be good. For the most part, I use meditation and exercise to hold myself together.
Sharing this doesn't excite me, but maybe there are other caregivers out there that feel the same way. And for those of you with children, please plan for how you're going to handle your late life care.
Fellow man pushing 50 here. I'm caring for my mom who has COPD and is starting to show signs of dementia. She lives a couple hours away and I just started a job that's 3-4 hours in the opposite direction, so I'm balancing a long-distance weekly commute along with weekly trips to cook, clean, do shopping, etc. Due to how this eats up most of my free time, it's actually made me better at squeezing "self care" into my schedule since it's become clear that it's not something I can defer to later, since "later" may not come for several years.
It's not at the same level as your dealing with, so I'm writing this mostly to offer support and to be glad that you've found some activities to help center you. I do encourage you to try to find some help, even if it's just for some small part of the care, like cleaning, shopping, bathing, whatever.
Same here, I'm quite a bit younger but my living situation and finances are also determined by taking care of my elderly parents. It's a lot different culturally than my surrounding peers who either don't have parents as old or don't bother to care for them in the same way.
It changes who I can spend time with and what I can do, and required me to grow up a lot faster than it seems like those around me. I didn't have the same amount inviting random people over, hosting house parties, or going out for drinks the same way, which I sometimes wish I got to do more of. But we play the cards we are dealt and try to do the most right for ourselves and the people around us I guess!
Thanks for sharing this. I used to care for my grandma back home (Alzheimer’s), but the financial burden is brutal. I moved countries so I could be able to afford caring for her but ended up leaving the large part of the physical work for my mom and sister. Thankfully I can now afford to support her financially much more, including paying for a dedicated nursing home nearby my moms.
I’m 35 now and keep wondering how future is gonna be as I have no kids and no desire in having them (also not wishing them a life where they would have to care for me)
I’m trying to keep my health up now and dedicating more time for it so I can hopefully hold the fort.
I wish you the best for you and your father.
Thank you for sharing your story. It’s something I think about a lot as my parents/in-laws age (I’m 40 and parents all in their 70s in decent health but feels like a matter of time… already a few cancer scares).
I’m curious if you work with a therapist at all. Seems like a lot of what you mention struggling with, it could be helpful to have that weekly neutral observer to talk to.
Sidebar: great advice on planning for my own late life care. The analogy I always hear is “put your own mask on first” when it comes to financial planning. Paying for college / weddings / down payments on houses for the kids would be great, but far more important to make sure financial retirement goals are being met for myself first.
62, and caring for a couple of close family members with serious mental health issues.
It’s a good thing that my “not drinking” (for 44 years) also gives me a seriously good support structure. I have a lot of engagement outside the house, but my family members almost never leave the house.
That does truly does suck. There may be some resources available from your local county under Medicaid/medicare, hopefully respite care and paid nursing if you can’t get your dad into assisted living or don’t want to do so.
https://news.ycombinator.com/item?id=42072648
My partner is undergoing chemo for stage 4 sarcoma and co-incidentally, my 13 month old happened to get sick on the day my partner started (around 2 weeks ago)
Looking after a sick toddler by myself, whilst also trying to juggle WFH has been... I haven't felt this level of depression and hopeless since my early 20s. I've never been more overwhelmed in my life.
Honestly, there is no coping mechanism in that scenario. You're being pulled from 20 different directions, the house is a mess, you're emotionally a wreck. It honestly feels impossible.
Thankfully yesterday I was finally able to put her into daycare and the weight that was lifted from my shoulders was immense.
I'm honestly worried for the future and I might just have to quit my job if it comes to it. But that's just life. I never knew it could be so brutal.
My partner died of cancer when our daughter was one and half years old. The year before that was a blur, I quit my job to focus on helping the two.
Brutal is a good word to describe it. Hang in there! Your life might get better yet some time in the future...
It can be very difficult; but hang in there and do not be ashamed to ask for help from anybody/everybody. My experience/advice here - https://news.ycombinator.com/item?id=42072648
Thank you, that was helpful.
As a fellow 13-month-old parent, I'm so sorry for what life is throwing at you. Hang in there and feel absolutely no shame or guilt for letting anything go. If some responsibility has to get dropped on the floor, so be it.
i wish there were more resources for caregivers tending to family with mental health issues.
unlike a physical illness or disabilities where there are clearly defined caregiving tasks (e.g., helping with mobility, bathing, administering medication), it's primarily emotional/mental burden where you can't just ask a stranger to stop by and help out for a couple days (not to say that there isn't a mental/emotional burden with all forms of caregiving).
couple that with the social stigma many people feel about mental health issues, you will most likely have to fulfill your caregiving role secretly in the privacy of your home so it isn't possible to find a community of other people in a similar situation.
it's overwhelming and isolating. and when you do start looking for resources on how to take care of yourself or searching for some community where you could vent and feel understood... all you'll find are lists of tips for "here's how to help your loved one start therapy". i know they mean well, but it just reinforces the idea that you were wrong to have been thinking about your own needs and you really just need to be more selfless and more dedicated to supporting your loved ones.
I see you. My wife has bpd. It's such a hard condition to explain, and most people in my life (even my loved ones) are so far removed from the experience it sometimes feels like I am talking about my experience visiting another planet. And this is from people that love me and are trying to support.
Couple that with the "top 10 tips" as you said and it's just soul-crushing.
Thankfully I have finally found some people who are in similar situations and even the feeling of being seen brings so much relief.
I'm in a long-distance[1] situationship[2], and my significant other has bpd (we believe) as well as other difficult co-morbidities.
I'm also trying to be supportive and help, but I'm often at a loss over how to help. A lot of the time I listen and nod along with "yeah that sucks." But it feels like all I can actually do is try and find the optimistic side or solutions to problems, and most of the time I get shut down as they can only see the negatives. I can't blame them, but what else can I do?
I'm trying to be caring, but also stay partially detached in case the worst happens. The election results are not helping.
I may be oversharing, and I don't know if you have any advice to give. But I have not met anyone in a similar situation. I wouldn't even know where to find them, or if that would even help.
[1] Started off in the same place, but we both had to move back to our home countries.
[2] We are young and it doesn't seem right to plan our lives together so early. Especially since it would involve moving countries, potential career ramifications, a lot more caretaking, etc. We didn't start the relationship thinking we would be together as long, but at this point breaking up with them would feel like abandoning them to their situation.
> I'm also trying to be supportive and help, but I'm often at a loss over how to help. A lot of the time I listen and nod along with "yeah that sucks." But it feels like all I can actually do is try and find the optimistic side or solutions to problems, and most of the time I get shut down as they can only see the negatives. I can't blame them, but what else can I do?
(Caveat: I have experience with people who have other conditions, but not with someone who has BPD.)
Look at the other messages here: What do people need? To be seen. To not carry the burden by ourselves. That is what your significant other needs. See them, be interested in them, be curious about them - just for their sake, as they are, as if they were valuable and lovable and important as they are. Give them space to talk, without any resistance at all from you; wrap your arms around them, physically or emotionally, and let them be and talk.
Leave yourself and your ideas out of it, way out of it. As a crass comparison, it's a bit like looking at a painting or reading a book that you love - you dive into it, you leave yourself behind, you want to know more about the author, the characters, what they mean, what they are thinking ... they have nothing to do with you.
Problem solving is a much different mode - those are your ideas. That has always been my instinct and I've had to learn to leave that behind. Unless someone makes clear they want it, just listen. Your S.O. doesn't need to be right or wrong - it doesn't matter. They are just very, very lonely with their condition.
Imagine you have a problem that is not only awful, overwhelming and terrifying, but others condemn you for it (even though there's little you can do), ostracize you for it. Even your loved ones don't want to know the truth, the reality of it - they can't handle it, amplifying your isolation and pain; they pull away. Don't pull away.
Your words are going to stick with me. Powerful. In particular, I feel like your last paragraph is very close to what my SO is going through. Thank you.
I have a hard time making the decision between listening mode and problem solving mode. Surely there are times when problem solving mode is helpful?
I understand the "only when they ask for help" idea, but this specific person does not have the instinct to ask for help, which makes it difficult.
Or when they do ask for help, it is for such general large abstract problems that I am also at a loss of how to give actionable advice.
I'm glad you found it helpful. I don't know you or your SO at all, so here are some general thoughts that help me:
> I have a hard time making the decision between listening mode and problem solving mode. Surely there are times when problem solving mode is helpful?
All I can tell you is that everyone seems to have this thought and the endless drive to insert themselves into the conversation, and we all find endless rationalizations and opportunities and exceptions - this time is special! - that will allow it. Me too. Recognize the drive; zip it. 'No, this time is not an exception - again'; just zip it.
It also means your attention, your thoughts, your emotion are focused on yourself, your ideas, your drive to talk, and not on your SO. That is a fundamental mistake of listening. Good listening takes your senses (visual, audial, maybe touch, etc.) to pick up what they are communicating; all your concentration (emotional on their feeling, intellectual on the words, etc.); composure (body language, etc.); emotion (they can see and sense it, of course); etc. Turn your attention away from yourself and focus it on them - like swiveling a big camera on a movie set, you are behind the camera, focused on the actors and silent now.
> I understand the "only when they ask for help" idea, but this specific person does not have the instinct to ask for help, which makes it difficult.
I don't know you or your SO at all, as I said, but here is a common trap: Maybe they don't ask because you already push it on them too often. They feel trapped, pressured; the last thing they want is more 'advice' - not that you have bad advice, but they need space, less pressure; they need to figure things out themselves without having your ideas fill the space, distracting their attention, and demanding responses. So they don't ask and then you see that and push more on them - a reinforcing cycle in the wrong direction.
Start a cycle in the right direction: If you back off, give them as much space as they want without resistance (or asking - 'can I tell you now?'), eventually they will flourish, come around, open up, and feel much happier and safer, and probably ask you. It may take lots of patience - and if you are struggling with the patience, you still have a problem with your personal drive and the focus of your attention (it took a long time for that to diminish in me).
> Or when they do ask for help, it is for such general large abstract problems that I am also at a loss of how to give actionable advice.
Look for the emotion behind their worry, and help them find their way through that. They are lost in the woods so help them find their way through; telling them what's on the other side doesn't really help.
I hope that helps!
> What do people need?
People need money. Being a caregiver is financially devastating because those who need the care often exceed their means, and society expects caregivers to pick up the tab. We've emphasized quantity of life over quality of life; that diminished quality of life often comes not only in the form of physical and emotional suffering, but also impoverishment.
And in the US, caregiving about to get even more financially devastating as the ACA is either repealed or gutted.
Harris said she would fund caregiving, I think through Medicare.
> People need money.
They need other things too.
I don't know... My older brother took the exact approach you just outlined with his SO, and he did it with more sincerity and compassion than anyone I know. She has a handful of illnesses and it has completely wrecked his life to the point that he might as well be dead. He isn't the person I grew up with. In a lot of ways, he already is dead, and it sucks really bad. He no longer is the compassionate person I knew. He doesn't have control of his own physical health anymore. He has no friends. It is a terrible situation. My point is that if it looks like beinf supportive is going to wreck your life too, maybe it's not worth it, especially when you're young.
Before everyone downvotes me and has a knee jerk reaction, consider that I have told you next to nothing of the entire situation, so you'll be responding to something you know nothing about.
As someone else said, that is extreme. But I honestly believe you.
I appreciate the words of warning. I believe I'm being careful about my own situation, and I have a decent support network myself. But I know it's a risky situation to be in.
I'd like to hear more about your situation with your brother. Maybe there's something I can learn from it. If you prefer not to share publicly, you can send me an email at partner_privacy@proton.me
Wow, that's pretty extreme! It's hard to imagine how someone could write something more extreme.
I don't see how listening to someone in a different way, which is what I described in the GP, would cause someone to lose control of their physical health, lose their friends, etc. ?
Well Said and Good Advice.
> but at this point breaking up with them would feel like abandoning them to their situation.
I have no special psychology experience but this feels like a red flag to me. Guilt is not a good foundation for building a lifelong relationship with someone. You deserve a partner that supports your needs as well. There are so many people out there with problems and there are ways you can help people without being their romantic partner if that's what you choose to do.
I appreciate your concern. I recognize it's not a great situation. However I'm not really sure it's helpful to put it in terms of flags. Maybe I'm missing your point.
I'm not really trying to build a relationship out of guilt. I'm already in this relationship (whether romantic or other doesn't really matter).
Also I don't understand this part:
> There are so many people out there with problems and there are ways you can help people without being their romantic partner if that's what you choose to do.
If you allow me to strawman you for a second, you are saying to cut contact with them and instead volunteer with a non-profit organization? I feel like I must have misunderstood you, so please correct me.
For what it's worth, they do support my needs as well. No complaints there. They are actually amazingly considerate and supportive given their situation.
Me and my wife were long distance too, through the worst of it, and during covid (Brazil to Europe).
There's certainly advice I can give , or at least experience I can share. It's a pity we can't message on this platform so if you want to send me an email to flatnailedfeatherlessbiped@proton.me, we can chat there
> It's a pity we can't message on this platform
I was thinking the same in relation to your original comment.
I'll send an email your way, thank you for sharing it.
I'm in the same situation. She refuses any treatment.
I learned too late that mental illness may be a reason but it's never an excuse for behavior.
Make sure you keep your cup (and your childrens if applicable) full before you do anything to fill hers. Otherwise you will wake up one day miserable, fat and poor.
I am so sorry. I see you. My wife is bipolar, HSP, ADHD… it’s called severe mental illness for a reason.
I was eating blue pills for 20 years. I finally took the red pill and realized it wasn’t going to change, we weren’t going to find a magic cocktail, she isn’t going to find stability. Now I am stuck between a rock and a hard place with no option c. It is miserable.
The airlines have it right, ‘Put on your mask first.’ If you are hypoxic , you can’t help anyone. Care giving is all about self care.
Lucky I only ate the blue pills for ten so I'm 35 and have a chance to turn my life around.
The advice for men that you often see essentially boils down to, "work harder to make her happy" that doesn't work for mental illness, in my case it made her more entitled, adulterous and rude.
I need to save up money to defend myself against her lies, document her mental illness so I can prove to the court she isn't a fit mother and get me and my kid out of here. It's a long road but I'll get there eventually.
I hope you get there as well.
Can relate.
I made a comment about that, a couple of minutes ago.
I live in NY, and we have very good support for treatment. I have a friend whose daughter was mentally ill, and lived in NM. It was very bad.
> 4. Be gentle with yourself
> It’s common to experience a wide range of emotions as a caregiver. You might feel frustrated, sad, resentful, joyful—all in the same day or even in the same hour! These feelings are a normal part of the caregiving experience, and it’s okay to express them.
I think this one is the most important and it extends to everyone, not just people in a caregiving role.
Be able to forgive yourself. Past mistakes, things you said, or did, or didn't do. All the the showerthoughts that make you cringe up. Don't be so hard on yourself. Forgive.
It's especially true if you're taking care of a dying my family member. They will pass and then suddenly you have time to remember all the things you did wrong, or said out of exhaustion and frustration, and you won't be able to apologize. Truth is none of those things matter. What matters most is you did the best you can for them and that you were just there for them.
> It's especially true if you're taking care of a dying my family member. They will pass and then suddenly you have time to remember all the things you did wrong, or said out of exhaustion and frustration, and you won't be able to apologize.
This is so true that it can only be known by experience. And you will carry the mental burden (unavoidable) for the rest of your life, though with the passage of time it does get easier.
I have been taking care of my partner suffering a chronic illness for 2-3 years now and it is phenomenal that this on the top of HN. I've had to figure out a lot of this for myself having made many mistakes and I still just learned about Respite Care. Thanks OP :)
Not to diminish or confuse the challenges of caregiving, but most of this is also be generally good advice (if not complete) for someone burning themselves out at a very demanding job, startup, school, etc.
Most of it is also good advice in general.
Maybe something significant about saying it to a particular group like this is to both remind of general good advice, and to clarify that, even though it seems you're in an exceptional situation, the good advice still applies or may be more important now than baseline?
Absolutely right, and I’d define that sort of job as a caregiving role as well. A team, organisation, charity or club can be a dependent and it can feel impossible to walk away if you’re deeply invested.
I've been a caretaker off and on for about half a decade now. I also have chronic often debilitating illnesses. Sometimes we are both in inoperable states and it can be scary. My ability to work remote is probably the reason we aren't on disability or in the gutter.
Not looking for pitty or kudos I work hard and pay the bills. I only want everyone to take a deep breath before they crap all over someone at work, or sniff at a resume. You never know what someone's situation is. Usually that's when someone has to leave to recover because corporate structure doesn't support disappearing for a week when PTO has run out.
People in these situations should learn about codependency.
Although most people think of codependency in terms of unhealthy love relationships, it is also common for caregivers.
The idea is NOT that you should stop caring, or walk away.
It is sort of adopting a "healthy neutrality" frame of mind, and give/function well.
"Codependent no more" - Melanie Beattie. Changed my life.
Good Point;
Wikipedia - https://en.wikipedia.org/wiki/Codependency The description talks about negative aspects but we need to understand the essence and apply it constructively to caregiving where both are codependent on each other though it is imbalanced.
Codependency: Are You Caretaking or Caregiving? - https://www.simplypsychology.org/caretaking-vs-caregiving.ht...
Finally, note that there is always a overlap between caregiving and caretaking and things are never clearcut as the textbook definitions may imply.
When I watch my sister talking with my mum about health problems, I'm aware that - as a man (and a programmer) - I repeatedly fall into the trap of 'trying to find a solution'. So I humbly suggest to all the other men/programmers out there who are caring for someone else, always try first to acknowledge what someone is saying to you, rather than trying to jump straight to a solution, because the latter can sometimes appear to be ignoring that person's feelings or condition, or failing to acknowledge them.
Taking care of yourself means authentic emotional expression and it's crucial to health, as it reduces this internalized stress, helping to maintain both mental and physical well-being.
In The Myth of Normal, Gabor Maté argues that suppressing emotions, particularly anger, can weaken the immune system and lead to chronic illness, including conditions like multiple sclerosis (MS).
Maté explains that repressing anger -- e.g. due to societal or familial pressure to avoid conflict or "be nice" -- creates internal stress, which over time harms the body’s immune response. This chronic stress actually triggers autoimmune disorders, as the immune system starts to attack the body itself.
Dr K covers this as well. He is amazing, as amazing as Dr Mate. He has a podcast and his YouTube videos on diary of a ceo are life changing.
Also his book on gaming addiction is one of the best I’ve ever read. And it is not just about gaming addiction. It’s a user manual for your mind.
It would be helpful to others if “Dr K” was expanded and the podcast name, YouTube channel name and the title of the book are mentioned.
https://youtube.com/@healthygamergg
I love the way “take a break” is presented as an available option. I guarantee that for many caregivers it’s absolutely not.
I'm have relatives in the elder care industry and I've been a caregiver myself. This options presented here are laughable.
Modern medicine has extended lifetimes so that people spend an extraordinary amount of their lives in a state where they are miserable and helpless. The less fortunate among us do not have the resources or the options to accommodate them and so spend years in desperation.
The effect of this list is to inspire guilt and feed despair in people beyond the end of their rope: some you're somehow not making it work, while apparently others are. You must be a bad person.
Surely further privatizing health and elder care is the answer!
Our glorious president elect even leads by example, repeatedly recommending his nephew illegally euthanize a disabled son. If only we all had fathers like Trump Sr., to make us tough and hard men who will either 'succeed' (bankruptcy doesn't count!) or be driven to alcohol and suicide.
Can't have that filthy socialist communism infecting the minds of the young! /s
Speaking as someone who was the sole caregiver for both my parents, one of whom had a truly awful Alzheimer's journey, I find the bullet points in this listicle rather aggravating.
Take time for yourself? Get help? Take a break? No shit. Now tell me how. If I had the money, resources, or available other people to help share the load, I wouldn't have been where I was.
Most caregivers are in this situation because they're it, the last line of defense. The isolating, overbearing difficulty comes from knowing what you need, and not having the resources to get it. The article has real "Are you starving? Try eating food!" energy.
You are right of course. My journey - https://news.ycombinator.com/item?id=42072648
These sort of situations are very difficult and what the Human psyche needs is reassurance that as Alexandre Dumas wrote in The Count of Monte Cristo all human wisdom is contained in these two words,—'Wait and Hope.' In that sense these articles do have some value.
Perfectly timed article ! I went through this last month, had a major panic attack and realized I had totally forgotten about myself. First thing I started doing was focus on physical health as that works faster and is easier to manage than mental health.
If that 20% does not include those raising kids, then it's crazy high. People should be free to live their own lives and make their own choices. And those with nurturing instincts should be well compensated to care for those we can't or won't tend to 24-7. No one should be alone with around the clock care of another human.
Of course we should all pitch in with whatever capacities we do have. But it must not be all consuming. And not block off our own opportunities to a life of our own.
Good ideas but as with so many things, easier said than done.
Always nice to see content like this come up. It's a struggle to do self care. Wrote something about this last week because I've been struggling for awhile too.
https://www.dandigangi.com/blog/self-care-is-really-really-h....
sometimes the obvious advice is the most important to hear. thanks for posting.
unfortunately the nature of some health problems that require a caregiver, makes both the sufferer and caregiver into social pariahs. in that case asking for help is unlikely to work well. but even in such cases the other advice is very sound.
I have a 3.3 year old toddler who cannot sit still and I feel like I have zero time to myself anymore, we don't have familial assistance and my partner has a stressful job and frankly I can't remember the last time we were intimate, this is hard AF
Thank you for posting this. <3
I have personal experience with this and wrote about it here - https://news.ycombinator.com/item?id=39394432 Others might also find it useful. I think of it as my "second career" and am now looking at what to do for the rest of my life as a "third career".
As Humans with strong bonds to others it must be thought of as "Our Duty to Do" and in particular; Filial Duty is paramount (assuming "normal" Parents).
Lessons learned and Advice;
1) It will be very difficult and exhausting both Mentally and Physically (we are designed to be selfish and altruism is hard). But you will have to develop "mental attitudes and physical behaviours" to cope with all circumstances and build up fortitude.
2) Techniques from Philosophy and Science should be employed to develop proper attitudes and behaviours. For example from Tibetan Buddhist "Mind Training" practices (Lojong - https://en.wikipedia.org/wiki/Lojong and Tonglen - https://en.wikipedia.org/wiki/Tonglen) one can train in compassion and willingness to suffer for others so that we can always maintain a positive outlook (this is key). See the book Essential Mind Training: Tibetan Wisdom for Daily Life by Thupten Jinpa for some of the original Tibetan texts. You should also read the works of Stoics Epictetus, Marcus Aurelius, Seneca and Cicero for developing mental strength.
3) On the physical side, set up your daily schedule around the patient's and do things together as much as possible eg. eating breakfast/etc. together, watching movies/just talking/going out/etc. together so that they never get a sense of being "alone and abandoned". Make sure to have a proper nutritious diet and take frequent naps/entertainment during downtime. You are not giving up "your wants" but merely re-scheduling it around "somebody else's needs". Do/Maintain proper Exercise (light and not too heavy) so that you are in good health and do not have to worry about yourself (this is key).
4) Time is finite and in order to do the above you will have to give up somethings you love and like to do. Be strict with yourself and give up all "your wants" which will hinder your duty and only add them in if you can make time for it without hurting the "patient's needs". Be clear in communicating your duties to others(friends etc.) so that they understand your situation and can maybe help as needed. You have to establish a new equilibrium with your environment.
5) Periodically you will fail in your caregiving and blame them/others (we are selfish animals after all) but that is ok as long as it does not become frequent and a pattern/habit. Catch yourself slipping on "your duty" and get back on track and show you mean it with extra care talk/action.
Finally; always remember that nothing can overwhelm you unless and until you allow it to. Everything can be managed with knowledge, action and discipline.
Seconding the Stoic recommendation. Meditations got me through a lot of rough patches.
And I know exactly what you mean about First, Second, Third Career. I'd had my First before my parents got sick. Then 2008, divorce, house sale, parents (living 500 miles away) can no longer mask their rapidly-progressing Alzheimer's, all in the course of a few months. Second Career was definitely a shock to the system, balancing their care against my need to work and earn money to pay for it all. Hardest thing I've ever done. It has now been a few years since Third Career has started, and again, seismic shift in how I approach things. I am at peace with my choices, though. No regrets. I loved being able to take care of the people that loved me.
There's another option: abandon your responsibilities. Modern capitalism demands that you spend your time competing, and lots of people are not able to keep up. Return to natural state of leaving behind the infirm to die.