Single parent: outlook not so good, where do I start?
January 16, 2018 7:26 PM Subscribe
A series of increasingly difficult events leading to health breakdown with at least 50% chance of mortality. No idea where to start in terms of the children i have full custody of, taking care of belongings etc. Preparing for the worst, legal anything and everything really, please assume I know nothing and have never had to deal with anthing like this before
Where can I start?( I'm in Canada. )
A series of major stressors including the breakup of an engagement to an increasingly abusive partner, requiring a move to a much more difficult home to afford and maintain, being the target of and subject to the loss of all friends and acquaintances through a sustained and prolonged bullying/public humiliation effort of some horrible people, the sum and peak of these events occurring all at once and triggering a psychotic break which was then blamed on a false accusation of drug addition, which i don't and never did have, and following such the involvement of child and intervention services, a battery of forced nonconsentual medications, therapies and the loss of all family contact... I have lived in isolation now for a year while my health rapidly deteriorated...
My body has entirely broken down under the stress. I am now looking at a very serious situation: I am unsuccessfully fighting a severe mrsa infection of my skin, sinuses and lungs and am out of antibiotic treatment options. I do personally believe I'm going to die, or very very likely to(I've had "prophetic" dreams all of my life and without exception they've come true and also, I've never been close to this ill in my entire life and I'm getting worse each day)
I have NO idea where to start in terms of the children i have full custody of, preparing them (do i tell them or will that cause more stress?)
taking care of belongings etc. Preparing for the worst, legal anything and everything really, please assume I know nothing and have never had to deal with anything like this before. And of course, have no one to ask for help or advice. (Their father is involved but mininally, is likely not fit to parent full time and has been no help whatsoever.)
Where can I start? What else important might i be missing or overlook? ( I'm in Canada. )
A series of major stressors including the breakup of an engagement to an increasingly abusive partner, requiring a move to a much more difficult home to afford and maintain, being the target of and subject to the loss of all friends and acquaintances through a sustained and prolonged bullying/public humiliation effort of some horrible people, the sum and peak of these events occurring all at once and triggering a psychotic break which was then blamed on a false accusation of drug addition, which i don't and never did have, and following such the involvement of child and intervention services, a battery of forced nonconsentual medications, therapies and the loss of all family contact... I have lived in isolation now for a year while my health rapidly deteriorated...
My body has entirely broken down under the stress. I am now looking at a very serious situation: I am unsuccessfully fighting a severe mrsa infection of my skin, sinuses and lungs and am out of antibiotic treatment options. I do personally believe I'm going to die, or very very likely to(I've had "prophetic" dreams all of my life and without exception they've come true and also, I've never been close to this ill in my entire life and I'm getting worse each day)
I have NO idea where to start in terms of the children i have full custody of, preparing them (do i tell them or will that cause more stress?)
taking care of belongings etc. Preparing for the worst, legal anything and everything really, please assume I know nothing and have never had to deal with anything like this before. And of course, have no one to ask for help or advice. (Their father is involved but mininally, is likely not fit to parent full time and has been no help whatsoever.)
Where can I start? What else important might i be missing or overlook? ( I'm in Canada. )
Best answer: Hospitals have social workers to help with discharge planning and treatment in the community. Could you contact the social workers at the hospital to see what resources are available? Can you get a case manager through the hospital? Be pushy. You and your kids are worth everything our system can provide to you.
I am hoping that the experts will weigh in soon with more specific advice. I am so sorry for everything you are going through.
posted by Sauter Vaguely at 8:39 PM on January 16, 2018 [2 favorites]
I am hoping that the experts will weigh in soon with more specific advice. I am so sorry for everything you are going through.
posted by Sauter Vaguely at 8:39 PM on January 16, 2018 [2 favorites]
Best answer: Child and Family Services in your jurisdiction may offer respite care if you need child care, and may have other supports (for your kids and for you). They may also help with planning for foster care if you’re hospitalized or worse.
If you can afford it, it would be good to have a will drafted by a lawyer since you have minor children.
Your provincial or territorial public trustee and guardian office can administer your estate if you have no next of kin and can protect your children’s legal and financial interests. As I understand it, they generally only get involved after a death, but it might be worth calling and discussing your situation. If you have someone you can make your executor, the trustee office should also be able to help walk them through the process (or at least they do in my jurisdiction).
I’m sorry. That sounds like a really hard situation.
posted by bighappyhairydog at 9:02 PM on January 16, 2018 [4 favorites]
If you can afford it, it would be good to have a will drafted by a lawyer since you have minor children.
Your provincial or territorial public trustee and guardian office can administer your estate if you have no next of kin and can protect your children’s legal and financial interests. As I understand it, they generally only get involved after a death, but it might be worth calling and discussing your situation. If you have someone you can make your executor, the trustee office should also be able to help walk them through the process (or at least they do in my jurisdiction).
I’m sorry. That sounds like a really hard situation.
posted by bighappyhairydog at 9:02 PM on January 16, 2018 [4 favorites]
Best answer: if I understand you correctly, you've already had the full course of antibiotic infusion treatment, the hospital discharged you because it wasn't successful, but without a plan or hopeful prognosis and without hospice information?
I have some secondhand experience - my mother had a MRSA infection and the doctors absolutely refused to let her leave until I volunteered to administer the antibiotics (delivered daily by a compounding pharmacy. this was only possible because she was already terminally ill and had a port previously installed for chemotherapy; otherwise she would have had to stay in hospital for the full 30 days of IV treatment, or whatever it was.) This was in another country and I can't claim any knowledge of the Canadian system. but if you were informed that no more treatment was possible, and then just released without instructions and without any directions for follow-ups -- something is very wrong. I am not trying to tell you you're wrong about your own condition, but it's someone's job to arrange visits from health aides if you can't safely travel, and palliative care services if it's really as bad as it seems.
Are any of your children old enough that you might give them the responsibility of making some phone calls? If it isn't possible to have ongoing home care visits because of finances, even a single visit would give you someone to talk to who could help make a plan or put you in touch with the right services. It's rough on children to be their parent's patient advocate, but someone needs to do it and it'll be worse for them if nobody does.
If you need to make a will, lawyers can make house calls if you're persistent. If there's any friend or family member you'd want to name as guardian for your children, you'll want to put that in writing.
I sincerely hope you are mistaken about some of this, but if you're right, your children will need to know what to do and who to call in the event that your condition worsens further. I can imagine that child protective services and their father are the last people you'd want to inform, but if there's no one else to call, it'll have to be someone like that. If you get worse, there needs to be someone you can check in with every day, who can come to your house if they don't hear from you.
posted by queenofbithynia at 9:05 PM on January 16, 2018 [9 favorites]
I have some secondhand experience - my mother had a MRSA infection and the doctors absolutely refused to let her leave until I volunteered to administer the antibiotics (delivered daily by a compounding pharmacy. this was only possible because she was already terminally ill and had a port previously installed for chemotherapy; otherwise she would have had to stay in hospital for the full 30 days of IV treatment, or whatever it was.) This was in another country and I can't claim any knowledge of the Canadian system. but if you were informed that no more treatment was possible, and then just released without instructions and without any directions for follow-ups -- something is very wrong. I am not trying to tell you you're wrong about your own condition, but it's someone's job to arrange visits from health aides if you can't safely travel, and palliative care services if it's really as bad as it seems.
Are any of your children old enough that you might give them the responsibility of making some phone calls? If it isn't possible to have ongoing home care visits because of finances, even a single visit would give you someone to talk to who could help make a plan or put you in touch with the right services. It's rough on children to be their parent's patient advocate, but someone needs to do it and it'll be worse for them if nobody does.
If you need to make a will, lawyers can make house calls if you're persistent. If there's any friend or family member you'd want to name as guardian for your children, you'll want to put that in writing.
I sincerely hope you are mistaken about some of this, but if you're right, your children will need to know what to do and who to call in the event that your condition worsens further. I can imagine that child protective services and their father are the last people you'd want to inform, but if there's no one else to call, it'll have to be someone like that. If you get worse, there needs to be someone you can check in with every day, who can come to your house if they don't hear from you.
posted by queenofbithynia at 9:05 PM on January 16, 2018 [9 favorites]
Best answer: Is it really over with your family and friends? If something happened because of the kids or your ex, maybe they’ll come back to the table if they know you have a life threatening illness. Worth a shot if you can have them in your life. You need help.
Are you a religious person? If you were ever active in a church, work those connections.
You might have your kids spend more time with dad. That’s where they’re going if you die, might as well get him prepared. Get a parenting coach, have a frank talk with dad, and see if you can make it work.
posted by crazycanuck at 9:45 PM on January 16, 2018
Are you a religious person? If you were ever active in a church, work those connections.
You might have your kids spend more time with dad. That’s where they’re going if you die, might as well get him prepared. Get a parenting coach, have a frank talk with dad, and see if you can make it work.
posted by crazycanuck at 9:45 PM on January 16, 2018
Best answer: I'm using Everplans to work through all the necessary paperwork for leaving my kids behind in the event of my death (I live with a high stroke risk). Their dad has theoretical joint custody but I am the main and functioning parent. It's very practical, there's a good trial period, and memail me if you need help getting it setup etc. I found the step by step checklists and sense of order it imposes over getting all the documents done helpful, and being able to give access to those documents to other people in different levels post-death or hospitalisation very calming.
Medical Social workers at a hospital are usually excellent and should be good allies. If you are terminal, you deserve palliative care and should be able to get it. It is very hard to advocate for yourself while you are exhausted and sick though, I know. It's like shouting for help while underwater. If there is anyone sympathetic at your hospital, a nurse or anyone friendly, ask them to connect you to a patient advocate.
Pastoral people at churches/temples/whatever faith you've been close to are often very helpful - you don't have to be a current member to get help. Depending on the church and congregation, you don't even have to be a past member.
How old are your children? What you will tell them about being ill and potentially terminal or recovering varies hugely by their age. When I had a cancer scare last year, I got very good advice on talking to kids about terminal illness (vs chronic illness) from some UK charities that publish guides and videos. There's a PDF of suggested resources for children to start, and just in general I found the UK websites and books to have a more pragmatic and kind approach to children and grief than the US resources which were more vague.
Badger's Parting Gifts, When Something Terrible Happens are the two books we happened to have access to, and they are both good.
posted by dorothyisunderwood at 10:07 PM on January 16, 2018 [6 favorites]
Medical Social workers at a hospital are usually excellent and should be good allies. If you are terminal, you deserve palliative care and should be able to get it. It is very hard to advocate for yourself while you are exhausted and sick though, I know. It's like shouting for help while underwater. If there is anyone sympathetic at your hospital, a nurse or anyone friendly, ask them to connect you to a patient advocate.
Pastoral people at churches/temples/whatever faith you've been close to are often very helpful - you don't have to be a current member to get help. Depending on the church and congregation, you don't even have to be a past member.
How old are your children? What you will tell them about being ill and potentially terminal or recovering varies hugely by their age. When I had a cancer scare last year, I got very good advice on talking to kids about terminal illness (vs chronic illness) from some UK charities that publish guides and videos. There's a PDF of suggested resources for children to start, and just in general I found the UK websites and books to have a more pragmatic and kind approach to children and grief than the US resources which were more vague.
Badger's Parting Gifts, When Something Terrible Happens are the two books we happened to have access to, and they are both good.
posted by dorothyisunderwood at 10:07 PM on January 16, 2018 [6 favorites]
Best answer: You sound very scared; I’m sorry. The hospital or doctor where you have been treated should be a starting place. Certainly there are remote communities where services are so thin, but you will need to be sure your kids are connected to the help they need. You could also talk to the kids’ school for help as they will have a list of resources for them and for families.
There’s also a great resource at Virtual Hospice Canada - information, professional online support where a team will answer your questions, forums, and a national directory of local and provincial resources.
posted by warriorqueen at 4:36 AM on January 17, 2018 [4 favorites]
There’s also a great resource at Virtual Hospice Canada - information, professional online support where a team will answer your questions, forums, and a national directory of local and provincial resources.
posted by warriorqueen at 4:36 AM on January 17, 2018 [4 favorites]
Best answer: Are you in Ontario? If yes, there is a new hotline for free legal civil advice via Pro Bono Ontario - 1-855-255-7256
There's also a national source of community health, gov. Programs and social services available in most of Canada via the United Way. Simply dial 2-1-1.
(I've used the service in the past to find out about and access free therapy, support groups, etc. and the people on the phone have always been patient and helpful)
posted by A hidden well at 7:21 AM on January 17, 2018 [2 favorites]
There's also a national source of community health, gov. Programs and social services available in most of Canada via the United Way. Simply dial 2-1-1.
(I've used the service in the past to find out about and access free therapy, support groups, etc. and the people on the phone have always been patient and helpful)
posted by A hidden well at 7:21 AM on January 17, 2018 [2 favorites]
Best answer: This sounds very stressful and I'm sorry you're going through this. It would really help if you could clarify 2 things :
1) What has your doctor has said about your chances of death? Is it the 50% number or is that from somewhere else? Are you still seeing your doctor regularly (even just coming in for progress checks if they don't have a treatment)? If not, what exactly did they say you should do next, the last time you saw them?
2) Do you have enough financial resources/insurance/etc to cover a few hours with a lawyer or a therapist? If not, is your income low enough that you might be eligible for any low-income services? (if you're in the middle, like many, there are still options, it just changes where you look)
I understand this may be difficult for you to answer but I'm asking because these important details will greatly affect your next steps.
posted by randomnity at 8:28 AM on January 17, 2018 [1 favorite]
1) What has your doctor has said about your chances of death? Is it the 50% number or is that from somewhere else? Are you still seeing your doctor regularly (even just coming in for progress checks if they don't have a treatment)? If not, what exactly did they say you should do next, the last time you saw them?
2) Do you have enough financial resources/insurance/etc to cover a few hours with a lawyer or a therapist? If not, is your income low enough that you might be eligible for any low-income services? (if you're in the middle, like many, there are still options, it just changes where you look)
I understand this may be difficult for you to answer but I'm asking because these important details will greatly affect your next steps.
posted by randomnity at 8:28 AM on January 17, 2018 [1 favorite]
Best answer: Who do you want to have the kids? If you know that you need to try and get a lawyer and judge and possibly your ex to agree to a new custody arrangement and get it all signed and squared away.
And you need hospice care, they will help you with all this. I'm so sorry and so angry you are just left on this position.
posted by fshgrl at 1:44 PM on January 17, 2018
And you need hospice care, they will help you with all this. I'm so sorry and so angry you are just left on this position.
posted by fshgrl at 1:44 PM on January 17, 2018
Best answer: I'm so, so sorry this is happening to you. It's horrible, tragic and unfair, and my heart goes out to you.
You've gotten lots of good advice about other steps to take, but if you simply want to focus on addressing some of your fears about what happens if the worst comes to pass, you might want to look at the Canadian Will Form on Wonder.Legal
Obviously if you have the energy and money to discuss all this and make a will with a lawyer, that would be best. But if not, filling out a will template is better than nothing, and may help you think through the ramifications if the worst comes to pass.
I imagine that one of your biggest fears is about what will happen to your children (assuming they are minors). You can appoint a legal guardian for them in your will, and I don't think you have to talk to the person you are appointing beforehand (though of course it's advisable). I say this simply because if there are people you know, even if you're not in contact with them now, who would be better custodians of your children than your ex, you can make your desire known to appoint those people as guardians instead of your ex.
posted by mrmurbles at 3:12 PM on January 17, 2018 [1 favorite]
You've gotten lots of good advice about other steps to take, but if you simply want to focus on addressing some of your fears about what happens if the worst comes to pass, you might want to look at the Canadian Will Form on Wonder.Legal
Obviously if you have the energy and money to discuss all this and make a will with a lawyer, that would be best. But if not, filling out a will template is better than nothing, and may help you think through the ramifications if the worst comes to pass.
I imagine that one of your biggest fears is about what will happen to your children (assuming they are minors). You can appoint a legal guardian for them in your will, and I don't think you have to talk to the person you are appointing beforehand (though of course it's advisable). I say this simply because if there are people you know, even if you're not in contact with them now, who would be better custodians of your children than your ex, you can make your desire known to appoint those people as guardians instead of your ex.
posted by mrmurbles at 3:12 PM on January 17, 2018 [1 favorite]
Best answer: Can you say what province/city you are in? Maybe we could help identify a charity or other resources based on that. I'm so sorry.
posted by kitcat at 3:16 PM on January 17, 2018
posted by kitcat at 3:16 PM on January 17, 2018
Best answer: In the US, the area of law you are looking for your pro bono lawyer to practice is called “elder law”, whether you are an elder or not. They help draft directives that provide instruction for medical care, as well as you identifying someone who can speak when you are medically unable. Ask about experience with elder law, seriously. Have a law school nearby? See if they have a sliding-scale clinic. Best wishes!
posted by childofTethys at 7:02 PM on January 17, 2018
posted by childofTethys at 7:02 PM on January 17, 2018
Best answer: From an anonymous commenter :
I'm so sorry to hear of all your struggle, and the pain you must be in. Your story is incredibly tragic.posted by restless_nomad at 9:31 PM on January 17, 2018 [6 favorites]
You mention having a psychotic break, I have some experience in the broken mental health system in Canada (Ontario specifically)
I find psychosis is incredibly difficult to deal with, not just during the episode itself, but it can be even more complicated after. When it comes to figuring out what parts of an altered reality can be trusted? Who can be trusted? And what truths are based in subjective facts determined or discovered while in psychosis, or objective facts verifiable through trusted and stable sources?
Psychosis can be part of several mental health afflictions, which there is great value in exploring, even if treatment is hard to come by. If this psychotic break was not part of a mood disorder diagnosis then trauma (sexual, attachment, or otherwise) and/or a personality disorder diagnosis could be involved.
When recovering from a psychotic break, it is very natural, instinctual and healing in some aspects, to isolate in an attempt take back your own power and establish trust in whatever it is you believe about yourself and your life and the world.
But it is INCREDIBLY dangerous to do this after a psychotic break without people who have known you a long time, so that you have support not only through your physical trials but through the trial of figuring out and coming to terms with:
- what caused the break, since it was not drug induced
- what new beliefs were picked up during this break, and the need to verify or challenge them (otherwise decisions going forward become increasingly unreliable)
- what diagnoses and therapies are necessary in order to immediately remedy those issues.
A psychotherapist can do much of this work, but if that isn't possible, then it's key to seek out people who you may have had a trusted history with. If you can find people with whom your pre-break history was full of trust, support, and love, that's ideal.
It's also very important to know that often after a break, our relationships to the people we relied on for help, friendship and understanding for years previous to the break may suddenly appear to change. This is typically because of the way psychosis can leave false narratives about those relationships, leaving things feeling very different, actions very different, reactions very different. You need to interrogate that feeling, because it can cause you to become isolated very quickly, and to isolate after a psychotic break without ongoing psychological treatment is dangerous, both to yourself to your children.
I spent over a decade cycling through therapists and doctors before finding effective help, so i am in no way trying to make it sound easy. That's why I'm suggesting bringing people you trust to help you seek it out.
If you'd like to tell me what city you are in, either here or at jaydenluke37@gmail.com, I'd be happy to help research options for you, be that psychiatry and psychologists, or trauma therapies, or other alternative therapies.
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I hope you are in a hospital, and getting the best care they can give you, with consideration for your children, and you. Are your children old enough to understand?
You deserve better than this, and should not be feeling and being alone, is there no staff in this hospital to help you though the social aspects of your situation? Social worker?
Do you have help? Are you in a medical facility?
posted by Oyéah at 8:06 PM on January 16, 2018