Background: my wife with SZ has been entirely unmedicated and symptomatic for almost two years and has refused all my attempts to convince her to re-engage with treatment. Her symptoms are not super bad as these things go – she hears voices, talks and sometimes argues with them, she has paranoid delusions, she is emotionally disengaged and disconnected from the family, she has some unusual behaviors and sleep disturbance, but she is more or less taking care of herself. I’ve been pushing her to start seeing a doctor again – a psychiatrist, her regular doctor – or to see a marriage therapist with me, my goal there was to have them help mediate a conversation about boundaries and responsibilities for the family. But she does not want to. She actually has seen a psychiatrist in her birth country, twice a year, but that is unhelpful since she doesn’t follow their advice (i.e. medication).
I’m feeling some urgency since we have a daughter who has recently had some mental health issues, that I can’t just let the current situation persist, it is not good for any of us. I told my wife that if she continues to refuse any treatment then we will not be able to stay together as a family, and she agreed we should separate. I’ve started talking with a lawyer and have a meeting setup for next week.
This seems like a complicated situation since I don’t think my wife is entirely able to act in her own best interests, but she is not so sick that I think she would be considered legally incapacitated. I want to be sure that the separation process is equitable for her. I think she is unemployable (unless she decided to start taking medication) and it seems likely I will support her for the rest of her life.
Does anyone have experience with divorce or separation from someone with SZ after a fairly long marriage (16 years for us)? How did the process work out for you? For them?
I suppose there may not be much overlap between the people who’ve gone through a SZ-related separation and the people who are reading/posting here. 
Maybe there’s some analogy to pushing an adult child with unmanaged SZ to live outside the parental home, to reduce harm to the parents / other children. And weighing the needs of the person with SZ vs the needs of the rest of the family.
Firstly, I’m sorry that your wife didn’t go along with your attempts to save your marriage.
In our family, a marriage in which one of the spouses has SZ failed after 17 years. Several years on, I would say that the unaffected person has largely moved on, but the SZ person is not in the best place. At first, we family members of the SZ person were angry at the ex, particularly as that person basically gave the SZ person, who was emotionally fragile and vulnerable, a deadline to get out of the home that they owned jointly, with no offer of support. We had to scramble to find him a place to live and take on the responsibility for his care. After going through a few more years dealing with his inability to make decisions, etc., peppered with emotional breakdowns and a couple of hospitalizations, we have a more understanding attitude toward her. We are alone in supporting him financially, however, since he refused his attorney’s advice to request support from her, probably because he feared her anger. She does not communicate with any of us, by the way.
We are trying to get Social Security Disability Income for him, as he is clearly unable to work and has no other support than us. In a couple of years, he will be eligible for an unreduced pension from one of his prior jobs, as well, and those two income streams may be enough for him to pay his own expenses. We don’t want to see him out on the street, obviously, but our current outlay is not sustainable over the long term, and we would like to preserve our assets for our own retirement and to help our own children.
The most important thing, at least from a financial standpoint, is to ensure that the disabled person is taking advantage of any benefits available to him/her before getting to the point at which the burden of assisting him/her encroaches upon your ability to manage your own finances.
I think I can manage with continuing to support my wife and I have no intention of trying to get out of that. So I think she’ll be “ok” financially, and that is not one of my most pressing concerns. I’m more worried that if she is on her own, her mental health might deteriorate to where she is not as able to take care of herself as she can now. Or maybe that will be the thing that motivates her to finally seek out help. There’s no doubt that she shows no motivation to do that in our current circumstances, and I’ve wondered if I’m enabling her poor decision making by helping her avoid the consequences of her bad behavior.
I’d hazard a guess the lack of replies may in part reflect the makeup of nationalities represented here. US health insurance and to a lesser extent tax laws often favor continuing marriages if a spouse wants to continue to offer support. It can be significantly cheaper to get health insurance for spouses through employer plans and there are additional legal protections (as well as liabilities) for remaining married. Some forum members maintain separate households and even cohabit with other partners while remaining married to their afflicted spouse.
Okay, I can weigh in on this one, except my adult child does manage his scz using skills he learned from cognitive behavior therapy. My adult child is not medicated and we did have to ask him to leave when he became a threat to his dad. His therapist called his doctor, his doctor worked with him and called me as both therapist and doctor were concerned that my son had become a serious threat to his dad. I had always promised my husband that our son would not continue to live with us if things reached that point.
My son’s mental function improved when he began living on his own, in a place he chose, working less than 5 hours a week driving for a ride service. I think the stress of living in close proximity to us was difficult for him. His first apartment was a conventional apartment with a lot of neighbors. When he moved to his current apartment, he chose an apartment at the top of an old house that had been split into aparments. He really likes his current apartment. When his landlord expressed dismay at some of his behaviors and talked firmly about not extending his lease, my son adjusted his behavior accordingly.
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By “bad behavior” are you referring to her refusal to take meds?
My husband and I are currently trying to help a family find their way forward. The question of divorce as a solution comes up frequently. Their problem is similar to yours in some ways. The dad is a longtime alcoholic with substance abuse issues. The mom has, an undefined by a psychiatrist, brain disorder of some sort. She has mania, manic rage, and immobilizing depression. Somehow, she has been able to get a gp to prescribe depression medication, however, treating just one symptom has made the situation worse. She has physically hurt their children and she recently attacked her husband. The day after attacking him, she cut her arms while demanding he leave their home, when he refused to leave, she began stabbing her arm which finally began producing some blood flow. (Of course their youngest child was home witnessing the entire thing)
So, yeah, he’s thinking about divorcing her. From our closeup view, this is our opinion. Their situation will not move forward in its current state. The patterns they have in place have been there for too long.
I hope that helps.
Too many variables to make those generalizations, IMO. The ACA, ABLE accounts, child(ren) qualifying a single taxpayer for head-of-household filing status (that is actually a more favored status than married filing jointly) or the EITC, whether the afflicted spouse can receive more safety-net benefits as a newly single person, etc., can change the calculus. With respect to the ACA, insurability is now guaranteed, with no coverage cap, even for those suffering from so-called dread diseases and/or significantly costly/chronic pre-existing conditions, and premium subsidies can be quite generous. The Obama Administration and the IRS interpreted affordable to mean no more than 9% of gross pay, but for employee coverage only. In other words, the ACA doesn’t require that employee+spouse or employee+family coverage actually be affordable.
Can’t always get a break on spousal insurance. At one job, I was required to participate in my employer’s plan, even though I was fully insured as a spouse on my husband’s employer’s plan. My contribution toward my employer’s plan was an additional $200 or so per month, and that was over twenty years ago. That rankled a bit and was among the reasons that I changed jobs. My spouse’s employer later imposed a surcharge for spouses who could have participated in their own employer’s plans, but did not, however. In any case, pricing generally reflects projected claims, and those estimates are based on prior claims.
Like mental health resources, any discussions on healthcare affordability and the ACA depends heavily on which state you live in and whether Medicare expansion was enacted. Same for the employer, hence the magic qualifier “can”.
The complexity of healthcare in US is such that even if you can do better under the ACA, Medicaid, and Medicare, navigating the ever-changing system to your advantage is so difficult that some caregivers throw up their hands and go by pre-ACA rules of thumb. I know, because my sister and I inherited caregiving of my brother and we ended up totally revamping pretty much everything to do with his finances. Similar complexity followed for taxes, trusts and support/employment/disability (which he refuses to apply for). Obfuscation seems the chief “value-add” of insurance companies (and the government).
Bottom line is these choices can be simpler in countries with more straightforward systems.
What happened to the idea of healthcare-plan-choice navigators, that were initially included in the ACA? I helped my newly-single family member with SZA choose a really good Medicaid option (blue state), but I’d worked in the insurance/benefits field. His doctor’s staff didn’t offer any valuable advice, except to say that he didn’t have the best plan available. They were mistaken about his financial situation, as well, assuming that applying for SSI would be the best option for him, when SSDI was actually the better choice.
Yes, other countries’ systems are more straightforward, but the vast majority of their residents have very little choice, their taxes are higher, their healthcare workers are paid less than ours, waiting times for care can be quite long, and various care-rationing schemes are in effect. They aren’t as utopian as commonly portrayed in the US.
The main objection I have to the US system is that most insurance is employer sponsored, with the young heavily subsidizing the older employees at a time when they are also trying to pay off student loans, bring up children, purchase that first home, etc. Another drawback is that deductibles and coinsurance can make even employer-sponsored plans unaffordable.
The lion’s share of Medicare beneficiaries’ uncompensated costs are shifted to the privately insured, as well, despite all earned income being subject to the Medicare tax, some investment income being subject to the Medicare surtax, and all income taxes on Social Security benefits going to Medicare funding. The highly-touted Medicare for All would likely be a no-go, since, with everyone covered by the government, there would be no one left to whom to shift the unpaid costs of government beneficiaries.
Medicaid costs are paid out of general tax revenue. I do wish that Medicaid were simply administered by the federal government, rather than by individual states, since we wanted our relative to see a doctor in our state, but his plan pays for non-emergency care only in his home state. We hope to convince him to relocate at some point. Even though he lives in a blue state, care in his part of the state is substandard, unfortunately. Our state is purple, but our particular area has excellent care options. After two years of SSDI, he will be able to enroll in Medicare, so fingers crossed.
If the federal government were to pay 100% of Medicaid costs, rather than 90%, I think we would see more state-level expansion. Just my two cents.
Sorry to continue to distract your thread @tuttle
Wow - so terrible that someone recommended ssi over ssdi.
I meant to touch on this when you brought it up before. In our NAMI Family to Family course, it was recommended that when we filled out the daily activity form for ssdi, we needed to be sure to base our answers on our family members’ worst days. They advised that family tend to focus on what their family member can do on a good day - instead of stressing what they can’t do - on their worst day.
Many people on the forum strongly advise the use of a disability attorney to handle the application. This makes a lot of sense. One of the trickiest parts of keeping their benefits going is never making the mistake of “checking the wrong box”. So much pressure!! Disability attorneys know how the applications should be filled out. Usually they are paid out of the past disability when it is finally awarded. (Humorous eh? You get awarded disability.)
The other crucial bit is the psychiatrist’s input. SSDI requires a doctor to declare a person to be disabled. This is another reason having a psychiatrist who works with the severe brain disorders is crucial. They have boxes that must be checked correctly as well, they need to be familiar with the system. Their input is highly important.
You might want to check on this, things do change and memories can serve poorly. I think Medicare enrollment is possible after two years of being disabled. My son became disabled in January of 2013 after a bad psychotic break at work. The date of the break became the day he became disabled as he was no longer able to work after that day. 8 months or so later, we got him to start seeing a psychiatrist for a year so he could be diagnosed. After he was diagnosed, we applied for ssdi. SSDI was awarded in 2014. He was able to start Medicare in January of 2015, two years after he became disabled.
(edited to say) My son’s Social Security person asking me “why did you wait so long to apply?” kind of blew me away. I don’t remember what I replied. Getting there had been quite the journey - we had landed originally in a strange land without a map much less a compass.
Hi, hope.
My apologies to tuttle, as well. I didn’t mean to hijack the thread.
We are going through a lawyer on the second attempt, but it all depends upon whether my relative cooperates. The lawyer’s assistant told me that we had only 60 days from the date of the denial letter to appeal, else we would have to begin anew. My relative doesn’t seem to be in a hurry to try again, though. I think he believes that we will simply continue to send cash each week, as we do now. We don’t mind helping someone who really needs it, but we want him to claim any available government entitlements first.
As most posting here know, decision-making can sometimes be very problematic for someone suffering from a serious mental illness, but pressuring them to make decisions doesn’t help. We hope we won’t have to seek guardianship for him. We still don’t know the rationale for the denial, by the way, since he hasn’t shown us the letter. His response to most questions is that it’s stressful and he doesn’t want to talk about it. That includes questions regarding triggers for breakdowns, whether he has remembered to take his meds, whether he has had a chance to take care of his doctor’s standing order for bloodwork, etc.
Thanks, that is certainly good news about the Medicare eligibility date. Hard to tell whether Medicaid is as good, since my relative doesn’t like to interact with medical providers. On paper, his coverage looks great, however.
My son is an public attorney who represents those who have been involuntarily committed. He tells me that some of his clients have sabotaged their own disability benefits applications, either because they don’t really believe that they are ill or because they dislike having a guardian whom they regard as unnecessary.
Update on the SSDI application:
The lawyer who had been recommended to us by the doctor declined to take the case, giving no reason. I’ve found another attorney to call, but I think that the first one declined because the statutory limit on the attorney’s compensation (lesser of 25% of back benefits or $6000) would not have been much. (So frustrating when a provision that is supposed to help a beneficiary actually hurts that person! Everyone has bills to pay, and a disabled person should not have to go without benefits for a long time before an attorney will take their case.)To make it worth the second guy’s while, we’re going to offer to pay a reasonable amount in fees ourselves, provided that is legal, of course. I don’t think there’s any limit on the amount that a third party can pay on someone’s behalf, however.
The reason given for the denial was that our relative would supposedly be able to do remote job, as he doesn’t like to interact with others at work, nor does he like to go to public places, such as a grocery store. Having had many conversations with him lately, we don’t think he’d be able to do even a remote job, since he has trouble making even simple decisions, as well as health problems like low blood pressure, dizziness, dermatitis, etc., that may be linked to his medication. In addition, so many of the remote jobs can be done from home, but still require constant or frequent interaction with co-workers and/or superiors.
We think that if he were to attend the sort of hearing that is the last resort for getting benefits approved, a judge would definitely see that he is truly unable to work. He is now saying that he doesn’t want to file for benefits if he must attend any hearings, saying that it would be too stressful, but we cannot support him forever, and we assume that he doesn’t want to live on the street.
We were told in NAMI’s Family to Family that our family members often have a long history of being fired from jobs or leaving jobs abruptly. One of the frequent questions that is asked of people wondering if their family members are mentally disabled is “have they been able to hold down a job?”
There is a bit of a chasm between “not liking” and “unable”. As one of our highly respected forum members always says, (@Catherine ) psychosis that is constant and debilitating needs to be established. Debilitating = serious impairment of ability to function
Anything that would hinge on a courtroom appearance would be quite the roll of the dice with my own son. We have never tried for guardianship because because it would basically be gambling. Our family members often can suppress psychosis for a short period of time - its exhausting for them, but can be possible. My son can suppress his symptoms for a very short time. I have noticed as he has become older, the muttering at his voices seems to be either more difficult for him to suppress, or he isn’t aware of it, or maybe because we ignore it - I have no idea - but it is more frequent. But, I know that in a courtroom setting while the evidence would strongly establish he is disabled and unable to work, there is plenty of evidence that he has a history of making medical care decisions on his own behalf, in his best interests.
I wouldn’t stress the possibility of a future hearing with your family member. He already seems to find the possibility daunting. Maybe just take it one day at a time, one thing at a time? Its best to keep stress as low as possible for our family members - which is not an easy goal.
Refresh my memory, does your family member currently qualify for ssi, medicaid and SNAP? I know you have mentioned his health insurance, I don’t understand what sort of medicaid is in play.
Not sure what you mean by type of Medicaid. He had a choice of three plans in his state, and we chose the one that was best aligned with his treatment and prescription needs. He would technically qualify for SSI and SNAP, but the rub is that he would not benefit from those, since he currently lives, rent-free, in a home that we purchased for him in a safe neighborhood. (He had wanted that particular house, that we were able to get at a reduced price, because it was in the neighborhood where his ex and children still lived, meaning that the kids could visit without the need for a car.) When the imputed “rent” is subtracted from the calculated benefit, the result is negative. That is why he needs to qualify for SSDI, and not just SSI. Another factor, in my mind, is that he worked for quite a long time, dutifully paying SS taxes, so our stance is that he should get the former. Of course, I know that these things would be neither here nor there, as far as disability determination were considered.
The attorney’s disability specialist advised that we could get around the imputed rent problem by drawing up a contract stipulating a reasonable amount of rent, but not only would that be quite stressful for him, it would also constitute fraud. Surprised that any knowledgeable person would suggest that, frankly.
The alternative to not pursuing SSDI, even with his fear of attending a hearing, is to stop giving him money for his personal expenses, something that would be even more stressful, in my opinion. I am currently reading the book by Dr. Amador that someone has posted here (in its entirety, which is probably a violation of copyright law, but I’ve already ordered the paperback), in an attempt to understand how we can better interact with him and perhaps convince him that we are only trying to act in his best interests. In any case, our current outlay isn’t sustainable over time, approaching $2000 per month between the property taxes, for which there is no abatement because we are “landlords” and no tax deduction as we are already over the $10,000 state-and-local-tax limit, the property insurance, the utilities, the maintenance costs, and money for groceries and other personal expenses.
In his case, not liking really does mean unable, and he has been dismissed from at least three jobs that I know of. We’ll see what the next attorney says.
Frankly, Medicaid confuses me. My son receives ssi because his ssdi is below a certain amount. He is Medicaid QMB which means that Medicaid pays for his Medicare premiums and copays. There is an extra “plan” that talks about how it can provide so many rides per year to doctor appointments and some medical equipment. Medicaid has a couple of different “levels” QMB is the only one I am familiar with - the income limits are quite low, something like $1060. for individuals and $1430. for married couples.
Another solution (more research for you) is to find out about seeing if your BIL qualifies for a section 8 housing voucher. Supposedly, the government is trying to expand the section 8 program. Its so difficult to get a section 8 voucher, you have to get on a waiting list - often by appearing in person every couple of years and waiting for several hours to be put on the waiting list. You will have to do the research to find out how they are distributed in your BIL’s area.
When people get a voucher and find a place that will take it, they pay a percentage of the rent t to the landlord and the government pays for the remainder. The house you have purchased does need to be up to their standards and pass an inspection.
My son’s Social Security caseworker made it clear that we could not pay for housing, utilities, food or clothing. If we did pay for these things, his benefit amount would be in jeopardy. From what I understand, families can pay for medical costs not covered by Medicare and Medicaid, and stuff like car insurance and internet. There may be other things, I really don’t know. Thank goodness for SNAP, my son would be hungry without it.
If my son could get a section 8 voucher, his expenses would be much more manageable. IMHO, Section 8 is a failed program because it isn’t more readily available. Great if you have it, but it isn’t doing anything for the rest of the people that need it. It is worth pursuing even if it takes years as our family members will still need it years from now.
Thanks.
Yes, SSI is intended to server as a safety net, or income top-up, if you will, for disabled and/or aged people whose other income (including SSDI) falls short of about $800 per month for a single person and $1200 for a married couple. Those limits are shockingly low, considering the actual cost of living in most parts of the US.
Medicaid is mandated by the federal government, but is administered by the states, so what is available depends upon the patient’s state of residence.
My BIL’s SSDI benefit would be $1100-$1300, I think. He is paranoid about receiving SSI, because he had had it decades ago, but his scrupulous reporting, including that his widowed dad had provided the occasional meal to him, had resulted in the clawback of benefits paid and possibly the termination of his participation in the program. One feature of his illness is that he is honest to a fault, never understanding the necessity for even the most innocuous “little white lie”.
Regarding Section 8, it looks as if that would also entail proving that he was disabled and would require additional tax payments on our part, albeit allow us to possibly deduct the cost of maintenance and upgrades. Our marginal tax rate is quite high.
Our long-term objective is to get him out of the house, because he can’t really manage the lawn care, maintenance, etc., but we will likely keep him there until his youngest child is 18. We had hoped that another brother who lives in a not-as-nice home in the same city might move in and share the house, but the second brother has mobility issues and the house isn’t really accessible. The main problem with that plan, however, is that their political viewpoints are diametrically opposed, and the SZA brother, whose worldview is of the far left-wing/socialist variety, is particularly intolerant of others’ views. Another factor is that he is easily disturbed by sounds and imagery that are common in most movies and television programs not rated G, meaning that others cannot watch their preferred programming in his presence.
My BIL is in his late fifties, btw, but we don’t want to have to support him until he is eligible for his full retirement benefits, at 68 (I think), and we certainly don’t think that he should have to take reduced benefits. In about two years, he will be eligible to receive a small but unreduced pension as a former state employee, as well, so he will probably be about as well off as the average retiree his age, if we can only swing both benefits. At that point, we will expect him to pay more of his own expenses, encouraging him to downsize, if we can.
I don’t want to offend or distress anyone here, but the fact is that published studies featuring bran scans have demonstrated that SZA is associated with an accelerated loss of brain tissue over the first few years of the illness, later slowing to the rate common in normal aging but continuing over time from the earlier deficit. In other words, although someone may be in their fifties, their brain may function at about the same level as that of the average eighty-year-old, who could be quite intact mentally, but who would clearly be eligible for age-related assistance, no proof of impairment required. In addition, my son the public attorney has seen many clearly severely ill clients fail to obtain disability payments, and we are both stymied as to how much easier it is for someone to claim a physical disability versus a mental disability. I guess we are getting into woulda-coulda-shoulda territory here, though.