Family and Caregiver Schizophrenia Discussion Forum

Schizoaffective Sibling and the Life that Comes with it


#1

My 30 year-old schizoaffective (bipolar type) brother in law
is off his meds again (yet again) and possibly using heroin (yet again), the
two typically go hand in hand and I would say both but maybe I am just feeling
particularly defeated today and it’s just his meds. My husband and I work
diligently to not get mired down in the expressed emotion that seems all too
common in families where someone is suffering from schizophrenia spectrum
disorders, but I have broken down today and am looking for camaraderie and
advice and a place to just feel safe discussing this situation from our point
of view instead of my brother in law’s (let’s call him Jack–not his actual
name).

I have known my husband and Jack our whole lives. My husband
is my high school sweetheart and I can’t
remember a time when we were not all a family or like a family. When we were
teenagers my husband’s sister committed suicide and it gutted everyone, their
mom never quite recovered and she died a decade later after a brief illness.
Jack handled it by self-medicating his way from typical teenage pot smoking to
injecting heroin within the span of a year. But, man is he brilliant, he has
always been phenomenally intelligent. He handled his addiction and getting a
degree from a top tier university simultaneously and only came crashing down in
his early 20s when the paranoia and mood disorder issues led to a breakdown in
a foreign country and the schizoaffective diagnosis. He has not lived on his
own or held a stable job outside of positions within various family businesses
ever since and even those have been fraught with major blow ups and quitting
for a few months here and there. Jack has never been allowed to fail, my in
laws were so broken by their daughter’s death and so concerned for Jack
suffering a similar fate that he has been enabled his entire adult life. He
lives in a family vacation home and pays no rent or utilities or health care
costs, he blew through tens of thousands of dollars of inheritance from a
distant relative and only now has run out of money and declared bankruptcy when
my father in law would no longer bail him out. Though, I must admit that we are
currently living in my father in law’s house while my husband finishes his PhD
and I finish graduate school. However, we pay the utilities and rent and
contribute our share across the board, including caring for my father in law as
he gets older. There is a strong history of dementia and my father-in-law is in
his mid-70s and needs some small help (but not full help).

My husband and Jack have had a tumultuous relationship, to
say the least. My husband developed into a quiet over achiever who got easily
over looked due to the sheer magnitude of issues accompanying his brother and
sister. He resents how much he has had to acquiesce to Jack’s changing moods.
They briefly lived together ten years ago or so and had a falling out over
hygiene habits and Jack’s aggressive rages. Those rages (outside of teenage
fights) have only been physical (until
today ) twice in adulthood. Once when Jack choked my husband until he passed
out and then drove him to the hospital, they were both in college at the time,
and drinking. And two years ago when in a rage over something I cannot remember
he drove to my husband’s work and charged at him at his desk. My husband was
able to subdue him after a few punches and left Jack with a black eye. We
thought it wouldn’t happen again because my husband shut him down and is just
physically stronger. But the angry, aggressive behavior never stops, it just
typically doesn’t become physical. It always seems more of an intimidation
tactic. People have always backed down from Jack
because his anger is huge and frightening and so disproportionate to the
situation. We once left a family vacation after he started yelling about how
our 5 year-old autistic daughter was out to get him and we didn’t feel safe.

Jack bullied his mom when she was alive, threatening to
commit suicide like his sister if he didn’t get money from her. He would also
threaten to go off his meds as a retaliatory technique. He still uses that one.
No one knew she was giving him money until after she died. His behavior, by
that time was ingrained. He used the same tactics to get money from my father
in law, though he put a stop to it rather quickly and now requires Jack to work
(usually manual labor for $10-16 per hour depending on the task) for money. At
one point he was several hours away and threatened to kill himself and we drove
to him and when we got there he was asleep and said he didn’t know what we were
talking about. This looks all so
negative and that isn’t totally fair. Jack, when stable and medicated and
sober, is brilliant and witty. He is loving and generous. Some of my best
memories have been my husband, Jack and I laughing late into the night for the
past 20 plus years. Jack is capable of so much. He is this great writer and is
so well read. He has these insights into the world and the universe that are so
unique. He is loyal to a fault. He has always had difficulty making friends in
sober circumstances, or sober friends period, but the ones he has he is loyal
to. And when he is good, he is loyal to us too. I have always considered him
one of my closest friends and I have always been one of the only people who
could address issues that might be considered more critical (ie hygiene or work
habits or his drinking) and I am the only member of the family who can bring
those things up, without a blow up (but I choose those battles very, very
carefully and only address maybe 4 of those conversations per year and never
about his drug use). He has several
firearms, though none of us know how many. My husband and I are generally
anti-gun, though that is due to his sister’s suicide and the use of firearms.
Jack went to drug rehab in his early 20s, but has never been a psychiatric inpatient
either voluntarily or involuntarily despite periods of psychosis that drove his
parents to a hotel out of fear, he has been arrested for one or two minor
incidences that must have been misdemeanors. We have never called the police
during a rage and usually either we leave or he leaves at some point. I do
believe that as a family we have purposefully avoided police interaction
because we are all worried what might happen if he had a criminal record and on
the back end, the rage that would come to us on the back end of an arrest that
we called for.

And that is the very, very long back story that leads to
today. In the past 4 or 5 months Jack has been doing the best I have seen him
do in his adult life. He is involved in a somewhat stable relationship with a
great girl who is older but pretty naïve but she is sober and has a job and
lives on her own (though he hasn’t disclosed his diagnosis to her and avoids
her when he is unstable), he was working for a family member again and had gone
several months without a blow up, he is attending school for a certificate in a
profession that doesn’t work with people (best idea for him). He has always
exhibited grandiose schemes for life that aren’t tangible like moving to Greece
to be an ex pat and write, though he has no money or book ideas, moving off
grid which is attributable to his paranoia; and he has had none of those
recently. He has been staying with us, off and on, because it is closer to his
classes. My husband and I (we are currently living off of our savings and
student loans) have been buying his food for him and cleaning up after him and
generally taking care of him and his menagerie of pets and it has caused us
significant stress and frustration. He completely emptied out any alcohol
around, would eat our highly picky autistic daughter’s food, or my weird food
(I’m a celiac) and never contributed money or housework etc. But even with
that, he was functioning at a higher level than usual and so we swallowed our
frustrations because he was doing so well otherwise. A few days ago, you could
sense the moodiness that usually comes before a blow up. At 6am this morning he
showed up at the house unannounced, already angry at something else. I had previously
resolved to talk to him about contributing more to the household and that set
him off. He started screaming about our kid’s toys and how the neighbors are
watching him. My husband stepped in because Jack was being aggressive with me
and then my father in law came out and that was it. My husband lost his temper
with him (which is unusual) and let loose with a litany of backlogged issues. I
don’t know who became physically aggressive 1st (though it may very
well have been my husband, he was furious) and though no major damage was done
my father in law and I pried them a part and Jack took off in a rage, but not before
asking for money. He then went and quit his job (it was his last chance) and
drove off. My father in law later told me that Jack was off his meds (again-multiple
times). I had told my husband, last week, that I thought he was using heroin or
oxy again because of his bouts of euphoria, but they also could have been manic
phase related, he usually relapses once a year but typically seems to pull out
of it.

I can’t imagine that anyone has read this whole thing, but it
has been incredibly cathartic to write it all out. This is the first time it
has all been in one place, in its entirety. I think we usually feel lost in the
madness. I want to find some long term solution. We are his only family. We are
extremely tempted to move ourselves, our kids and my father in law as far away
as possible next spring when my husband finishes his PhD program. Abandon the
vacation home to him and wipe our hands clean and let him live his life, on his
terms, alone. It sounds very appealing. However, at some point, my husband will
be in charge of the family estate and will need to make the decision whether to
give his brother a lump sum inheritance (it’s moderate, but not huge) that he
will blow through in a period of years on who knows what but he is horrible
with money or to give him a small stipend annuity that might keep him going until
50, when it will be gone and he will have not been forced to learn basic life
skills. We both miss who he was and we see glimpses every so often, but I think
that we are both so exhausted from the constant battle that we want to just
walk away for now. I would love advice, any advice, from anyone. It’s lonely
out here. TL:DR…brother in law manipulative and won’t take medication with
regularity and I am tired.


#2

Wow, so much you have to deal with when your brother in law is off his meds! I know there is so much going on and how relationships with a schizophrenia person affects family members differently.
I know venting to others who know what you are going through helps. Remember to take good care of yourself, that will help give you the strength to deal with your situation.
Hugs to you :sunflower::hibiscus::sunny:


#3

Thanks Sparrow! I feel better just getting it out of my system. The stigma and secrecy around mental illness make it difficult to speak with people about, without violating the privacy of our loved ones. I am determined, however, to find the healthiest way for us to deal with it while still being as supportive as we can. I have not figured out what that is yet, but I hope I do. I appreciate your reflective response, it is very validating and that is something I needed. I really appreciate it.


#4

Oh my dear… this has gone on too long. He needs hospitalization and med management. That said, he will not get “well” until he wants to. I had to let my son go and live on the streets due to the drug use until he was tired of it. I knew he might die, and I already buried his older sister as an infant… But for my sanity, I had to let him go.

Thankfully 2 1/2 years was all it took for him to “beg” for help. He is willing to do whatever it takes and so am I …that is our deal. In the mean time, take care of you ( you must!) and distance yourself all that you can. I did lots of counseling and it was cathartic to vent to someone. I learned to let go with love and empathy and it was not my responsibility to fix it. It was his problem to want to fix.

If no one is around for you, call the mental health crisis lines… you are in crisis too when his actions greatly effect you. Get in touch with NAMI for some education classes and to meet others in a similar situations. It was helpful to have someone to call and vent or brainstorm with. 50% of the mental health folks also self medicate so they do go hand in hand.

I do hope you can take care of you and your immediate family as your first priority. He needs to want help.

My son did 2 rehabs, then an intensive rehab for 3 weeks in a psych hospital, 1 year of daily outpatient, and now does multiple NA meeting a week. Clean and sober and on meds for 2 1/2 years… and is the same young man I loved before the illness. He lives in assisted living so I am not battling to get him to take his meds. 4 times a day meds does not allow me to work… The deal is take your meds and no street drugs for me to remain active in his life.

My prayers are with you and all your family. Your plate is full with people in grad school and an autistic daughter. You have more than enough to manage … take good care of you and your immediate family and pray, encourage and convince him to get help. There are also support groups for him at NAMI.


#5

What you are going through is so stressful. Some suggestions, when you are up for them: We hired a disability lawyer to draw up an estate for our son as soon as we new his diagnosis and he started receiving SSI. My husband is the trustee, and must approve his expenditures (an often source of arguments). We have decided after we are no longer able to take care of our son to have a bank trustee do the job, to hopefully spare our daughters the arguments and maybe preserve their relationships.

If your brother-in-law is a danger to himself or others (which he has been), he can be held on a 72 hour hold for observation. This happened to our son once, he was an in-patient for a week, with an attempt to adjust his meds.

NAMI is always a resource, find your local office.

Our son has also been a polysubstance abuser. He is now in a program that has him on Vivitrol. For many people it reduces opiate craving, and alcohol also does not have the same affect.
It does not work for everyone, but it has made a big difference for my son. As has Latuda, more so than any other med, but that all seems to be trial and error.

I have heard other parents speak of guardianship or conservatorship. I do not know the difference, again a lawyer could help. I do know that my friend was going to basically bribe her son with buying him a condominium if he agrees to a guardianship. Like so many mentally ill, he can pull it together long enough (say in court) to appear okay enough not to need a guardianship, hence the bribe.

There was a time when our son was doing drugs, living with us, and it was one crisis after another. It was either going to be our sanity and marriage or my son who was not willing to accept the help we were offering. On his 21st birthday we dropped him off downtown, with a full backpack, and left. One of the hardest days of my life. But that was not to be the end of it. He eventually ended up in a treatment program in Utah, with the correct meds, and good staff. I don’t know if he will ever be able to live alone. With the help of Al-Anon I can see that we enabled him for a long time, as we were so afraid of the consequences of seeming uncaring. He knows this is his last chance, we are done with any more programs, and he is suddenly quite more agreeable about things. Hope any of this helps - good luck, take care of yourself, too.


#6

Hello I am new to this site. I have a brother diagnosed schizoaffective - I believe bi-polar type. He left home at the age of 15 (almost 50 years ago!). We are from a family of six kids - he being a middle child and me 5 years younger. Noone ever really told me what happened to him, I was only 10 when he left. After years of only hearing from him occasionally, I got back in touch with him about 15 years ago. I could see that he was very ill for the few times a years that we visited, but still did not know the extent of his illness until he moved in with me in August of last year. WOW! He now has his own apartment in the town I live in - for disabled and elderly. It is nice, close by, serves him a nice meal each day - but he has lots of issues still. So I am on this website to gain insight on how to help him more. I keep seeing the ad for Sarcosine, wondering if anyone has input on how well it does or does not work. He currently takes Depakote, Zyprexa, Lorazapam, and Dylantin for a siesure disorder. I have a call in to his Doc to get her advice as well. Hoping to help him find something that makes him happy again. Thank You.


#7

@Tam I am so glad to hear your brother is doing well with housing and medications. I have heard of Sarcosine also and I think it is a brand name for a vitamin supplement but that is all I know. I asked my sz son’s doctor about it and she had never heard of it before. I also have a schizoaffective sibling, my sister. She still struggles quite a bit with just about everything and she is 55. One thing I have realized over the years with my son and my sister is sometimes what we perceive as “happy” is very different from what our ill relatives perceive as “happy”. My son and my sister rarely appear happy but if I ask them on any random day “are you happy?” they will often say “yes”. My best to you and welcome.


#8

Thanks so much for the words of wisdom and your experience:relaxed:I am somewhat new to this lifestyle and am trying to learn everything I can to try and help him out.


#9

@Tam You are quite welcomed, I learned the most from the free Family to Family classes offered by NAMI…the education they provided on mental illness and caring for the mentally ill was absolutely priceless…well worth the time and effort. Do you have a NAMI chapter in your area? Here is a link to the website:
https://www.nami.org/Find-Support/NAMI-Programs/NAMI-Family-to-Family


#10

Thanks for the advice. I actually attended a meeting last Thursday - for family members only. It was helpful and I think I will continue. My latest “discovery” with my brother is this, and I am wondering if anyone else experiences this: I am pretty sure he believes the drug Zyprexa 10 mg each night (which currently I am making sure he takes !:slight_smile: is making his voices disappear. He does not like this!!! He loves the voices inside his head - almost like his best friends. Luckily I think for him his voices are “The Father, Son and Holy Ghost - and many many angles”. He says he will do anything he can to not lose his friends. Also - he did a recent stint in our local physc ward. Two or three days. He does not believe he had a psychotic episode, only a seizure. He WILL NOT admit that he has sz, wont even say the word. Just wondering if anyone else has a patient that totally denies his or her illness - and loves the voices inside their heads?


#11

Just reading the above blogs as well. I feel a little guilty asking for advice when I see what others are going through. Just the sheer longevity of some of these blogs makes me realize that family members to someone with this disease are affected so drastically. I wish all the best for everyone here and plan to try and help out too if I find any relief. I am going to try the Sarcosine for my brothers negative side of his desase, along with all his other meds. I will let you all know the affect this may or may not have on him. I asked his Phychiatrist about it, and she has never heard of it. Told me to ask the Pharmacist. So with that I will sign off for today - My heart goes out to all of you having these same problems. It is so difficult to handle, but writing it down is very theraputic for me. Thank You.


#12

It is unfortunate that he likes the voices, maybe in a sense it is his “normal” making it difficult to imagine going on without them. Maybe a skilled therapist could help with that? As for unwillingness to believe that there is an illness or the correct illness that is pretty common with mental illness. On some level my son believes he needs the medicine now but he will never discuss his illness with me. The term for the “not being aware of one’s own illness” is Anosognosia.

Anosognosia -
Wikipedia


Anosognosia is a deficit of self-awareness, a condition in which a person with some disability … For example, anosognosia for hemiplegia, or the paralysis of one side of the body, may occur with or … Those diagnosed with Alzheimer’s disease often display this lack of awareness and insist that nothing is wrong with them.


#13

I am anxious to find out how the sarcosine works, Thanks for sharing.


#14

My son has all these internal dialogs with famous people. At times, he’s said that some talk to him through the TV.

Other times, he’ll ask me if I remember when so & so came over. For a few, he’ll say he just talked to them on the telephone.

I don’t know if they’re voices. I suspect they’re more like delusions, false memories, or actual dreams that he’s confused with reality.

However, it gives him so much pleasure that I’m starting to get worried about what will happen if they get him on meds that take it all away. Will he fall into a deep depression? Will he refuse the meds so that they come back? Will he be so disappointed that he feels suicidal?

I’m preparing myself for it as much as I can, and realize that no matter how much I’m expecting it, it’ll blindside me. Still, the alternative of leaving him lost in his fantasy world isn’t a viable option either.

It’s terrible when getting better is filled with potential danger & a lot of uncertainty too.


#15

Oh yes, but they can be laughing one minute and fighting the next. Lately, he’ll say “what?” In a loud voice.
He doesn’t have any insight into his illness and is constantly begging for money.


#16

My daughter has great insight, and her voices were mainly negative and critical of her, but she still felt guilty for “killing” them with her medication. She missed them after they left. Occasionally, shadows of the voices come back and it renews her guilty feelings about taking medication.


#17

This is such an insidious disease. I now see why my brother left home so early - and sadly why noone else in my family wants to help him. It is so hard to listen day to day all of the delusions he believes in. Thankfully lately he is in a happy place. Mostly he thanks me for helping him stay on his med regime. I ordered the Sarcosine on Wednesday - says it takes 3-4 days to ship. My Brother seems to really be into natural remedies, which this is, so I hope I can get him to take it daily. we’ll see what happens, I will be sure to update this blog with the results.