I am glad that you have some plans in place, although I am sorry to hear your brother is not capable of anything regarding his own care. That is a very tough situation. I understand not allowing any assets to go to your brother as it would quickly disappear. I do know someone here who was able to live alone on disability for awhile, but no longer is capable now. He is in a home where medicaid covers, and his nephew arranged things so that his uncle would qualify when the time came. Try to feel good about the plans you have made, it sounds like you are doing the best you can.
How old is your daughter?
Hi @j9sit . My daughter is 36 and I am 63. Her father passed away in 2013, her grandmother is 89 with Parkinsons, and her brothers don’t have much to do with her, so I am basically her only relative.
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My parents ( mostly my dad ) dealt with my brother since he was diagnosed when he was 22. I lived my life , got married , had a family and lived in another state. I always knew that one day I was going to have to deal with him, but there were really no steps I could have taken to prepare myself. When my dd died 2 years ago, and I had to deal with the fact that my mom had dementia and could not live alone and also figure out how to continue taking care of my brother, I almost had a nervous breakdown. I lost 11 pounds and had severe anxiety everyday for 6 months. I am now much better. I do have a responsibility to eventually figure out how my brother will be able to live once my mom is gone . We have always had a relationship during his illness but he does not engage with me much besides very on the surface conversation.
if you start to ask him questions about himself he will just quickly end the conversation.
My dad did not realize that just giving him a bottle of antipsychotic medication and hoping he would take it would never work. So I estimated he has been unmedicated for at least 10 years. I think that takes a toll on his cognitive functioning and that is why he really cannot do anything helpful. Like manage an apartment without my dad ( or now the aide) coming in to clean up, do his laundry, unclog his toilet, etc. he would never even tell anyone that there was an issue with his toilet being filled with poop. I guess pre Covid he would just use public bathrooms or go to my parents house.
Can you imagine living somewhere where your toilet is filled with poop for a month?
That is how messed up he is. He would never change his clothes either.
My parents put him in an apartment a long time ago because they could not live with him. He would have destroyed their life.
My mom is 84 now.
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I enjoyed reading your post. I am so sorry about your son, your daughter sounds like she makes your day, and your statement about health insurance is very true!
Mostly I like how you said you build a different life than you thought!!
I am 38 and started my first really serious relationship two years ago, a bit late in the game but still swept away! I learned he was schizophrenic but didn’t understand how it would affect him, me, the relationship, and everyone else in both of our families. The part I’m starting to realize now is that what is ‘new’ to me is very old to his family!!
He moved in with me last year in a haste… he was running from an ‘emergency situation’, and I had spent enough nights with him by that time that I was afraid to leave him alone, knowing his hallucinations of smoke and fire usually occurred in the wee hours of the morning. Against my religious beliefs of cohabitating, I justified it by fearing for what he went thru when he was alone at night with no one to be there when he detached.
So many things about our relationship sound ‘bad’, but so much of it is good. He was on Thorozine, but that made his episodes even worse, to the point I thought he was on fentanyl. He ended up in the psych ward for a week, they stabilized him, and he got the Abilify shot after telling his doctor how schizophrenia was impacting the relationship.
I loved the Abilify shot!! He was so peaceful to be around and we lived together in unison and I fell even harder for him and I saw how his mind worked. He is quite gifted, and is able to fix just about anything because his mind works beautifully to solve problems. He can take out every piece of a car engine and motor and put it back together. He can gut and rebuild a bathroom from the ground-up, carefully measuring and using power tools with ease until he is ready to lay tile and replace the sink and toilet. His work is beautiful and it’s fascinating to watch him think and concentrate. I love that neighbors and friends always call him when they are in a bind, stranded on the side of the road waiting for the local ‘street mechanic’ or need a home repair that they can’t afford to pay a company to fix. People call him to cut trees after hurricanes and to stop by and look at their leaking window.
In other words, he is mechanically gifted and is always there to help someone.
BUT, then he stops taking his meds. He hides in the closet when I try to give him a pill because he hates the way the shot slows him down. He wakes me up in the middle of the night impersonating kankargoos and saying he’s gonna marry a goldfish. I don’t know whether to laugh or cry. And then, as the pattern has shown, he gets increasingly verbally assaultive when he doesn’t get his way. He says the meanest things I’ve ever heard when he drinks, saying he’s gonna cut my throat with a box cutter and throw me in the trunk of a car. But, his mom says he’s never physically assualed a woman and that his threats are idle. Even my mom laughs and says it’s manipulation of a schizophrenic. Both of our parents are really supportive, and sometimes I feel that they see something between us that can last, and both continually encourage us to keep trying to move forward with getting him on the shot permanently and ending the verbal outbursts. His mom knows him better than anyone, and she is completely sane and normal…she doesn’t have schizophrenia and I don’t know how she birthed him some days.
He kept saying he was gonna kill himself one night because his mom wouldn’t give him money to pay his phone, and I called mobile crisis. They admitted him back to the psych ward and he got the shot again. Things were so peaceful and I felt like I had my friend back. Then he started using Percocet and money flew out the window. But he wasn’t hullicating and was calm. He tried to get Percocet from his doctor at pain management because he has a herniated disk, but the doctor said he needed some time between his suicide attempt and another prescription. I wish the doctors would just prescribe it, because he’s so functional when he gets it… He doesn’t get high or act weird. He goes and cuts the grass or hangs a screen door. It just costs too much money and i don’t like the people he has to go thru to get it. But he goes thru withdrawal without it and its a living hell on those days.
We have talked a lot about marriage, but I can’t do this unless he’s sober and medicated. I’ve seen both sides, and the only way we can be a team thru this is if I am able to go on doctors visits with him. But don’t we have to be married for me to have any medical access? Just like many schizophrenics, when he’s at his worst, he refuses help until it reaches crisis level. Then he child out for a month or two until deciding he’s no longer in need of medication.
His family loves me and my family loves him. He has children and his daughter told me she hoped we got married… she’s 12 and still very excited about a fairy tale. I just don’t know how to deal with the ‘lows’ and his backslides.
On one hand I won’t marry him unless he’s stabilized, but on the other hand we are not married so I can’t be an active part of his medical visits. His mom said that when you marry its thru sickness and health, and she weed referring to his schizophrenia and how he keeps me up at night impersonating a kangaroo. He’s funny and hilarious and very witty and helps everyone on a dime, but then turns into a little monster when he’s off his meds and starts gallavanting on the streets looking for Percocet. And then he’s right back home, cooking an amazing dinner, praying, and wanting to play Scrabble and be right next to me all night. His mind and personality are like an intricate puzzle that always makes me think of the movie title, “A Beautiful Mind”. He’s crafty and talented and highly intelligent, but can’t hold a job or stick to a schedule or keep all of his commitments. He does best running on adrenaline and wherever the day takes him.
He hasn’t hallucinated in a few months, and I know they will return soon if he keeps refusing this shot. I just want him to take it monthly without saying he doesn’t need it!!
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I do not know if you are asking for advice about your relationship or not. I feel the need to warn you of the commitment you would be making if you chose to marry your boyfriend .
I have a brother who is schizophrenic. He also can be nice, funny helpful, and at times easy to be around. I my view the negatives that you mentioned outweigh the positives.
First of all, he cannot hold down a job which is very common for schizophrenics . That means you would need to support him financially for the rest of your life. The constant on again and off medication is likely to go on for a very long time. It is very difficult to deal with that kind of instability. of course his family is going to love you because you are a person that cares about their mentally ill son. Relationships are always nice for anyone , but it is going to be much harder on you than it will be on him.
Schizophrenia does not ever go away. Over time there is cognitive decline of the brain.
you sound like a really sweet person . But think about these things for a long time before you make any commitments.
Just my 2 cents.
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Being married will not give you access to medical visits (at least not in the US) due to privacy laws. You could attend visits with him now if he indicated he wanted you there and his doctors could communicate with you now if he signed a release. This does not change after marriage.
The main thing that changes with marriage is that you would officially become his next of kin. So if he were in an ICU, for example, and only family were allowed to visit, you would be allowed as his wife but not as a romantic partner. And you would be the one responsible for medical decisions he was unable to make (such as which medical path to take if he were in a coma and there were important choices to make).
For better or for worse, though, I don’t think marriage would change much in terms of the day to day coping with his severe mental disorder. The privacy laws are quite strict about confidentiality in the absence of signed patient consent and an individual can sign consent (if they choose to do so) for anyone they like, family member or not.
After going through years of psychosis with my son, I realized the lesser things (issues like - compromising over interior layouts of our home and if the cookies are burned) are so small and just don’t matter.
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I realize this was posted last summer, but the topic is so relevant and I enjoyed reading the many responses. We have been on this journey with our son for almost 5 years. It has been quite a roller coaster of events and emotions. Through it all, I think I have matured and have much more empathy for mental illness. I was recently thinking that people are always thankful they have their physical health, but don’t realize how lucky we are to have our mental health!
I never had much general anxiety, but since dealing with our son with schizoaffective my anxiety is something I have had to work on. Meditation and daily prayer help greatly. I also have been able to separate a little more for our son’s daily problems. I think as a mother it is easy to become somewhat co-dependent with your son and let the details of his life overwhelm you. We have learned to be constantly seeking out more resources so we don’t have to do it all ourselves.
I think those new to working with mental illness need to be patient with themselves. Even though this is a long term problem, I think you find ways of adapting over time. It does help greatly to get involved in a NAMI support group and really share both your trials and also things you can celebrate. Try to work on being transparent with your struggles. I know its hard because the average person has no idea of what we all deal with on a daily basis, but if you can find caring friends and others who deal with MI it is really helpful.
God Bless all of you on your journey.
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Beautiful well said and well understood 