I’ve been lost to grief for the last several months - when I realised, finally, irrevocably, that my wife was never going to recover from the mental straitjacket she is now in. That the woman I married fifteen years ago no longer exists.
Backstory: She went to hospital one day in March last year, she had hyponatremia (low sodium) and they gave her saline solution roughly twice as fast as recommended - they wanted to turn beds you see, like a restaurant turns tables, hospitals are run for profit. She went into a coma, resurfaced a couple of days later, and then they discharged her as fast as humanly possible - oh you can’t walk now, but you’ll be fine in a week or so, they lied. I used to think that having “excellent” insurance would cover me and mine, but it’s not the case. Insurance just pays when something is available to be paid for. When the hospital decide their time is more important than your life, well, you lose. And you lose big.
Since then, and never once before, she has had a smorgasbord of mental problems, but since January, it’s mainly been crippling fear and paranoia. She thought people were in the house, that the dog was a robot spy, that I was dead and replaced by an AI. She’s convinced she’s going to be dismembered by “them” at night, and that she’ll be dragged off to “a hearing” to determine her fate. She is not getting better.
I have lost the light of my life, and in doing so, feel lost myself. Purposeless. Dead-man-walking. I break down in tears, uncontrollably, randomly. I sometimes wish I were dead, except then who would look after our son ? So I live. I have learnt to live with overwhelming sadness, to present a mask to the world, to cope. Badly, but better than not being there for him at all.
I phone her, every night. Now that she’s been moved closer (30 mins away, she used to be 3 hours away) it’s possible to visit in the week - in fact I’ll be going tonight, not just at weekends. But that just rips open the suppurating wound and adds a fresh layer of salt. To see her. Like this. A woman who did a joint JD/MBA, reduced to this.
I have tried therapy to try and sort myself out, but what use is therapy against the harsh reality of what has happened, what will continue to happen, what cannot be escaped from. What use is talking against brain damage ? How does talking about it change reality. It can’t. It won’t. What has been written on steel cannot be erased, consequences, like us, be damned.
I will not desert my wife - no matter what hardship I feel, for her it is thousands of times worse. She has periods of lucidity when she knows the agony of all she has lost, when she talks, wistfully, of how she always saw herself growing old together, bickering like only old, married couples do - and not locked on a ward put on a cocktail of drugs that keep her sleepy and docile. I am her only contact with the outside world, and she needs that. She will have it. So I force a brave cheer, and talk to her for the allotted 30 minutes, and her life is not quite so dreadful for that short period.
This is what I can do, but the toll is terrible. I walk out of that pleasant ward with my soul in ribbons, trying to pull myself together for the short but intense drive home. It is what I can do, it is not enough, but it is what I can do for her.
I am flying my son to the UK this weekend because he deserves some time in a house that isn’t as dreary and doom-laden as his own. I can’t stay because I need to be near her so she doesn't think I've left her. I can't take the time off work anyway because they’re busy, and I need my job to fund her healthcare, so I’ll catch the next flight back and repeat the task in a couple of weeks. It’s a long flight, but he’s looking forward to the adventure. For me, it’s just another nail in the coffin - not being able to provide for him as I ought to be able to, but misery is not a zero-sum game, he’ll enjoy the time away, and that is enough.
Grief is heavier than a mountain, it sits on your shoulders, and weighs you down in everything you do, or fail to do. Grief that won’t fade with time, that is renewed each evening, and twice per week in person, is not anything I would wish on my worst enemy. I sincerely hope no-one that has read this far (or anyone else for that matter) ever suffers like she, or like me.
Hey, I read the whole thing. A random internet stranger like me can only say I'm sorry for what you all are going through. I think your writing can only help people like me appreciate what we have and not take the people around us for granted. I can't help you at all even by writing. Like you said, what use is therapy and talking. But you've helped me by writing this, if only just a bit.
If you can make room in your life, get a dog. They are emotionally infectious animals, and generally seem to have an endorphin firehose soaking their brains most of the time. Taking care of a dog, walking it (exercise is really important) and generally interacting with it can help amelerioate your grief. Your son might respond well to it also.
Kind of sounds stupid (I'm not a dog person) but I've seen it work and result in rewarding relationships (and, more grief when the animal dies, but that's an inevitable consequence of love).
Thank you - we do have a dog, a 5 year old bundle of pure happiness from Newfoundland. As I type, she's snoring away on my bed to the left of me. I find the time I take to walk her every day precious, because I don't have to wear any mask, it's just me. It's hard to describe the freedom that brings, even if temporary.
Deeply, deeply, deeply understood. And thank you on behalf of life for shouldering what you do, with thanks for telling of it so that I could see in your words that… you already understand. A story untold.
And. For a lack of better words: I am so, so sorry for what you and yours have been through.
I'm deeply sorry for what happened to your wife, and what you, your son and family have been through. And thank you for sharing your story; I see you, and wish you have the strength to continue moving forward, and supporting your loved ones.
I'm a random stranger on the internet, and don't want to suggest hope for recovery, but I just finished reading a book (Brain Energy, [1]) that presents a very convincing theory that may explain the cause for most/all mental disorders, and its link to metabolism and mitochondrial dysfunction. There has been many studies in this area for decades, but the way he connected the dots and presented the unifying theory felt like a breakthrough.
It probably doesn't apply to the trauma your wife went through, but it doesn't hurt to check if some of the techniques can improve a bit her quality of life. There's so much unknown about how the brain works, and its shocking to realize that most of current treatments for mental disorders by our so-called "medical experts" are, at best, trial-and-error.
Unrelated, but another book that comes to mind is Solve for Happy [2], by Mo Gowdat. I know it's difficult to talk about happiness given what you're going through, but Mo's story of grief and choice may help you find some comfort as you decide how to move forward.
I had an experience that lasted for a year before ending (with a bad outcome) that sounds emotionally very similar and I had broken heart syndrome for part of that time.
You two are dealing with a misfortune that is one of the greatest evils that can befall a person.
I'm terribly sorry, words are insufficient I know.
I honestly had no idea about the dangers of something so seemingly banal as saline solution being administered too quickly. Your comment made me read into it and yes, the reality is quite surprising, and scary. The strange thing is that higher concentration solution isn't so much a problem as administration speed for a given volume.
In any case, thank you for helping at least this one person learn about a danger they never would have expected if they're ever in a hospital, and I sincerely hope your wife comes back to her self over time. From what I've gone on to read, a certain high percentage of sufferers of Central pontine myelinolysis (if that's what you're describing) do eventually recover for the most part over the course of months.
I know you’re not after any advice and I don’t want to get your hopes up in any way. But I do hear about brain damage due to hyponatremia & subsequent improper sodium infusions somewhat frequently as I’m part of a diabetes insipidus medical group & this is a potential reality everybody taking Desmopressin faces.
I have seen a decent amount of anecdotal reporting of people stabilizing/recovering their cognition to some meaningful degree after a few years from the injury.
Thank you. At the moment I'm clutching at any straw I can find. I'll take some solace that it might turn out better, and I'll watch for it, but I'm not in any position to pin hopes as yet - that way would lie disaster, I think.
Maybe you can try alternative medicine like ayurveda. Recently I heard an amazing podcast [0] with Dr. Rakesh in which he talked about regenerating neurons etc with Ayurveda. His contact details are in the video description.
To add on, cerebrolysin and methylene blue are sometimes helpful with brain function (the former specifically after TBIs). Various nootropic forums (I'm aware of reddit's ones) may be able to offer more possible solutions. And of course speak with your doctor first before starting anything new.
I can talk with her psychiatrist, but she is on a strict regimen of drugs in the facility - and in my experience doctors are reticent to accept medical info from laymen (reasonably so, under most circumstances).
Nonetheless, thank you, I will watch the video and maybe ask the doctor what she thinks.
Backstory: She went to hospital one day in March last year, she had hyponatremia (low sodium) and they gave her saline solution roughly twice as fast as recommended - they wanted to turn beds you see, like a restaurant turns tables, hospitals are run for profit. She went into a coma, resurfaced a couple of days later, and then they discharged her as fast as humanly possible - oh you can’t walk now, but you’ll be fine in a week or so, they lied. I used to think that having “excellent” insurance would cover me and mine, but it’s not the case. Insurance just pays when something is available to be paid for. When the hospital decide their time is more important than your life, well, you lose. And you lose big.
Since then, and never once before, she has had a smorgasbord of mental problems, but since January, it’s mainly been crippling fear and paranoia. She thought people were in the house, that the dog was a robot spy, that I was dead and replaced by an AI. She’s convinced she’s going to be dismembered by “them” at night, and that she’ll be dragged off to “a hearing” to determine her fate. She is not getting better.
I have lost the light of my life, and in doing so, feel lost myself. Purposeless. Dead-man-walking. I break down in tears, uncontrollably, randomly. I sometimes wish I were dead, except then who would look after our son ? So I live. I have learnt to live with overwhelming sadness, to present a mask to the world, to cope. Badly, but better than not being there for him at all.
I phone her, every night. Now that she’s been moved closer (30 mins away, she used to be 3 hours away) it’s possible to visit in the week - in fact I’ll be going tonight, not just at weekends. But that just rips open the suppurating wound and adds a fresh layer of salt. To see her. Like this. A woman who did a joint JD/MBA, reduced to this.
I have tried therapy to try and sort myself out, but what use is therapy against the harsh reality of what has happened, what will continue to happen, what cannot be escaped from. What use is talking against brain damage ? How does talking about it change reality. It can’t. It won’t. What has been written on steel cannot be erased, consequences, like us, be damned.
I will not desert my wife - no matter what hardship I feel, for her it is thousands of times worse. She has periods of lucidity when she knows the agony of all she has lost, when she talks, wistfully, of how she always saw herself growing old together, bickering like only old, married couples do - and not locked on a ward put on a cocktail of drugs that keep her sleepy and docile. I am her only contact with the outside world, and she needs that. She will have it. So I force a brave cheer, and talk to her for the allotted 30 minutes, and her life is not quite so dreadful for that short period.
This is what I can do, but the toll is terrible. I walk out of that pleasant ward with my soul in ribbons, trying to pull myself together for the short but intense drive home. It is what I can do, it is not enough, but it is what I can do for her.
I am flying my son to the UK this weekend because he deserves some time in a house that isn’t as dreary and doom-laden as his own. I can’t stay because I need to be near her so she doesn't think I've left her. I can't take the time off work anyway because they’re busy, and I need my job to fund her healthcare, so I’ll catch the next flight back and repeat the task in a couple of weeks. It’s a long flight, but he’s looking forward to the adventure. For me, it’s just another nail in the coffin - not being able to provide for him as I ought to be able to, but misery is not a zero-sum game, he’ll enjoy the time away, and that is enough.
Grief is heavier than a mountain, it sits on your shoulders, and weighs you down in everything you do, or fail to do. Grief that won’t fade with time, that is renewed each evening, and twice per week in person, is not anything I would wish on my worst enemy. I sincerely hope no-one that has read this far (or anyone else for that matter) ever suffers like she, or like me.