Family and Caregiver Schizophrenia Discussion Forum

Need advice and insight


#1

Hello,
I am new to the forums and I am looking for some support, advice and I guess to know I am not alone. My older sister who is 41 was diagnosed with SZ at the age of 14-15 and has struggled with various issues since she was that age, pretty much most of her life. I am 7 years younger than her, so when she was diagnosed I didnt fully understand what was wrong with her and my parents kept some of it in the dark for awhile until I was a little older to understand. My sister has always in some way or form denied her illness, she refuses any medication, the few times I have seen her on medication you can notice a big difference in how she acts and even talks. she is a little more rational. Her main choice of coping has been with self medication through drugs and alcohol which leave her more unstable and angry. She has been homeless off and on for the last 5 or so years, she has spent periods homeless before also. I have taken her to a hospital when she seemed to be having a psychotic episode, when we got to the hospital she managed to calm her self, refused help and walked right out the door. My family has tried letting her stay with us, but she would end up using our house as a crash pad to go out and drink and do drugs then come and sleep for literally days on end. I’ve picked her up from the hospital when she overdosed on meth, and she still denies that ever happened, if she does admit it she will say it was just a one time thing. I’m kind of at a loss with her. She bought a bus ticket to Las Vegas, several hours away from all family so she could “just travel for awhile” and now she is angry that she is stranded there. She spends her SSD money with in days of getting it. I’ve told her that she spends more money in less than a week than me and my husband unless its on a car repair or rent. She still doesnt get it. We helped her get into a half way house last year in Phoenix, Az and they helped her transition into her own apartment which she kept for about months. She was responsible for only a small portion of the rent and had a social worker that would come help her with normal things like shopping and learning how to care for herself. That was the most stable I have ever seen her. I’m sorry for rambling, this is just a portion of things that we have gone through with her. I don’t know what to do and at times I so exhausted that it is becoming difficult to talk to her anymore. We have a baby on the way so I have been limiting contact with her for my health and stress level. Part of me doesnt want to care as bad as that sounds but I keep thinking this is my sister, no matter how estranged we have become I love her. I feel guilty that one of us has not taken her in and put everything into straightening her out and letting her know we love her and I think that has become the hardest thing to deal with, guilt. It feels like it would be like catching a wild animal and telling it not to bite and be wild because you love it. I feel lost when it comes to her. I appreciate any advice or insight. I should have sought counseling a long time ago to learn how to deal with her, I didnt know it would eventually have such a toll on me. thank you in advance.


#2

there are two ways to deal with her. ignore her, and help her.

if you ignore her, its like she never was your sister, you have to live with the guilt, but you can have a happy life.

if you help her, you have to take her i to your house regardless of the drug use because not one person on this earth should be homeless. you have to explore the various ways to make her your dependent (both for tax reasons and as a legal guardian). you will be less happy, but you will doing the right thing as a human being and a sister. drugs is something she needs help with so explore a detox center first.

when you imagine the crappy hand youve been dealt as her sister dealing with her problems, imagine that with one twist of fait she could have been you and you her. all it was was a slight chromosome difference and your healthy thank the lord or buddha whoever. yeah your life sucks as her caregiver, but think about hers. what does she deal with on a day to day basis.

you are sacrificing your happiness to help her. but increasing her stability, happiness and mental health by doing so. do the right thing its not always easy. she cant escape her mind like you can escape her situation. you are lucky or blessed and should treat your sister as if she took on all of the schizophrenia so you could have none of it.

sorry if it stresses you out to have a sister with an illness. its the hopeless cards youve been dealt


#3

In Al-anon they talk about “detachment with love”. It is very commendable that you want to help your sister, but you also have to take care of yourself. You sound like you are doing this when you say you have to limit your contact with her because you are pregnant. Try not to get too emotionally involved with your sister’s illness. You have to realize she is sick with a devastating disease, and it is beyond your power to cure her. Continue to help her, but protect yourself. Try not to let yourself get tied in emotional knots.


#4

Hi there~
i have a son that is 37 and is now clean. But I still worry over him. The worst is the drug abuse your sister is involved in. There is nothing you can do. This part is her battle and you may have to remove yourself until she can conquer this monster. I understand your frustration, but you must not feel quilty. my son was also homeless. Your sister will have to hit her own bottom before she can get better. i used to think my son would never hit bottom. he has it more bottoms than I care to say!
You can be supportive of good behavior, but not be pulled down into the addiction part. This is hard! Please take care of yourself first before you run out of steam. let your sister find her way by herself.
Good luck and come here to vent whenever you need to.


#5

@bonitagirl, I feel sorry for you. Since you are pregnant you need to take care of your own health. She has dual diagnosis which a lot of mentally ill do. They self medicate which is not an excuse but they feel better OR being high takes the edge off they say. You can’t have her live with you OR with any of your family members unless someone can watch her 24/7. If so there should be a rep. payee if she is receiving SSI so family can use the money for her living expenses. From what I see like everyone else said she has to find a way to help herself. If she has a case Manager they can help her with housing, medications, take her to Doctor’s appointments , May be she has to pay a few $s co-pay for medications. Also they have partial in patient therapy where transportation is provided. It is half a day in therapy ,which can help her to live a better life than be homeless. Good luck!


#6

I would like to suggest, if you do help her, don’t do it in order to alleviate the emotion of guilt you feel. That will go away as soon as she moves in, and you’ll start to feel entitled to her behavior, which is clearly ill. it IS hard, but scientifically valid selflessness is achievable. Id like to suggest Buddhism as a psychology based way to be mindfull and get through the stress. The feeling of Karma is real, even if Karma in your mind is just the act of associating something positive you did, with something positive that happens to you.

Being a hero doesn’t feel good. It’s not like the heros you see on TV at all, sometimes there is no reward. If you insist on keeping things distant in your family, the very least you can do is help sign her up for public housing or a rehabilition center. Selflessness does not have a feeling or emotion attached to it. We sometimes feel angry when we are selfless, we sometimes feel unappreciated when we are selfless,and we sometimes feel good about ourselves when we are selfless. Homeless is the epitome of rock bottom, For 99% of society this is the unthinkable rock bottom. I wouldn’t give away any percent of my Schizophrenia if I knew it would make one of my brothers would be homeless and on drugs.

Please do the right thing for your sister, and don’t do it because you expect anything of her. You will get that good Karma.

I did read that you have a baby, and imagine what you would think if she went down the same path, recognizing you carry the family history of Schizophrenia, I hope you and your family always have a healthy and safe place to stay.

YouTube what its like for people living in homelessness. Im sure theres someone doing it and vlogging it. There are ways to manage the stress of your sister without letting her rot on drugs and in the streets. Rock bottom is sometimes an illusion, and schizophrenics don’t always hit a rock bottom. People do die homeless in the streets everyday, you just don’t see it on TV because people don’t care about the homeless. Thats how they get there.


#7

thought i would say hi.
take care


#8

Welcome. I am so sorry for what you are going through! Of course you feel torn, you love your sister but you have to take care of yourself and your family as well. It’s a position no one should ever have to be in.

I do think counseling would be a good idea. This is not something easy to handle, having as much professional help has possible is beneficial. You could try a support group like the one’s through NAMI too (not that you can’t come her and vent and cyber cry and get advise) but it might give you some resources in your area that can help YOU which will in turn help your sister. I would bet dollars to donuts that ALL your feelings are completely and totally normal for your situation-the guilt, the frustration, wanting to turn off your feelings-it’s not because you are terrible person, it’s because those feelings are a terrible burden and have cost a terrible price to your health and wellbeing-but you have those feelings and you love your sister, you really do need ways to manage those feelings and balance what she needs and what you need. There is so much that goes into being a caregiver, and burnout is something that can happen. You are obviously a compassionate person who loves their sister. Please take good care of yourself! Is there anything in particular we can do to help?


#9

Hi,
I just wanted to say that people do what they will, regardless of all/any offers of help from others.
You cannot assume the guilt that you haven’t done enough to help her. That’s not the way things work. unless she is interested and makes the effort herself, there will really be no progress made.
You need to take care of yourself and family first. She needs to know that she is not forgotten, but your world cannot revolve around her.


#10

Hi @bonitagirl. Welcome to the forum.

My son is 20 and diagnosed. It’s not easy watching someone you love make decisions and do things that put them in harms way. It’s hard to not feel guilty that you are not doing enough. First I will say let go of that guilt. Early on I came across this saying, actually here on the forums about 2 years ago and it stuck with me. The 3 C’s. I didn’t Cause it, I can’t Control it and I can’t Cure it. None of this is your fault.

Some links that may help you to understand and cope:
http://www.leapinstitute.org/ - under resources are free videos on using LEAP
LEAP is a way of communicating to build trust. Listen-Empathize-Agree-Partner.
http://dramador.com/ - Dr. Xavier Amador is a clinical psychologist whose brother had schizophrenia. He is the founder of the LEAP Institute. Wrote the book: I’m Not Sick I Don’t Need Help! Can buy from his website.
Search Xavier Amador and LEAP on youtube.com and you should find some long videos
http://www.treatmentadvocacycenter.org/index.php - under problems you will see anosognosia
Anosognosia looks like denial but is different.
http://lesswrong.com/lw/e25/bayes_for_schizophrenics_reasoning_in_delusional/ - helped my understand delusions
http://www.nami.org/ - National Alliance on Mental Illness.
http://www.schizophrenia.ca/ - Schizophrenia Society of Canada

Can also find some very useful information here:
http://www.schizophrenia.com/

Anosognosia or lack of insight affects a lot of people with mental illness. It is part of the condition itself that does not allow the person to see that they need help. Self medicating is unfortunately common as well. My son is also dual diagnosed or with concurrent disorders which means he has schizophrenia and addiction problems. Until your sister is able to see that she needs help or seek treatment sometimes there isn’t a lot that you can do. Know that there is nothing wrong with you putting your own health and family first. Have hope that at some point she will gain the insight that she needs to accept treatment. When that happens things can turn around.


#11

Your sister is a typical case for a person who developed symptoms in her teens. She lost some function because her formative years for social, functioning and work skills of teens and early 20s were damaged by her psychosis. I am glad to hear she is functioning better in another city. The move can make a difference in her symptoms as some old friends or community stressors (different for every story + person) may worsen symptoms. Some communities have better treatment options or doctors with better training than others – day programs, case management, govt sliding fee clinics, adequate/affordable medical care, supported housing, assisted employment & charity assistance make a huge difference. I’m glad she has shown some improvement.


#12

Thank you for you replies. It helps me to understand a lot of my feelings are not so off base. I think you all have helped me to realize she is a little worse off than I thought emotionally. I’ve resigned to the fact that I cant male her get better, all myself and family can do is have patience and let her know we love her. I have lived with her once with our family when I was 18 or 19 and it was difficult. My mom had her come live with her two years ago and she was emotionally and verbally abusive to her. She said some things to her that I would not imagine a daughter saying to their mother. My mom took it in stride, she understands its an illness. She has been physically violent with other people outside of our family in the past, usually picking fights with someone she cant handle. She has shown signs of violence with our mother but has never actually hit her. She did this once with me as a teenager and I set her straight, she hasn’t tried it again. As much as I wish I could bring her to live with us, I fear it would be the end of my marriage and my sanity. I ask her everytime I talk to her if she would go to a shelter and if I can help her find help. She has reasons to not go and refuses. She asks for money but I have learned to not give an addict money, I’ve offered her other means of help but it seems that cash is the only thing she wants.

Thank you Barbie for the websites, I’ll look at them today and share them with my mom and dad. It would probably help with dealing with her in a healthier way.

Oneof21angels, I think what I need is to just better understand her illness and that it’s okay for me to distance myself from her. I have to deal with the guilt and find a different way of coping with her. Coming onto this site and just venting right now and talking to people who understand helps a lot. I see mistakes we’ve made and it helps me to understand what she is dealing with too.

Cactustomato, I wish I could bring her into my house to live. I think if I were single and didnt not have a baby on the way I could devote the time I need to help her. I think she really needs a facility type of help. I cant sacrifice my marriage and life at this time. We have tried to get her help, but she walks away every time. When she had her apartment for those few months in Phoenix, we went and filled her cupboards and fridge with food, brought her shampoo and things she needed. Even helped her get a tv and was working on getting her some kind of cable or dvd player and she left it all. She decided one month that she would rather spend her money on what ever she chose than paying her subsidized rent and was evicted just a few weeks after we did all of that. If she had told us she was short on rent we might have been able to work something out to help her pay it that month. It’s those things that have taken a toll on us as a family. I dont have the funds to do that again for her. Ive been gently asking her and reminding her how much happier she sounded when she was taking her medication and that the side effects were just a small price to pay. The last time I talked her into taking her medication again it took me close to a six months to convince her, that was when she was able to hold an apartment for a few months by her self. She inherited SZ from her biological father, we have different dads but my dad raised her. I still feel for her and wish she didn’t have to suffer with this, she has had a very difficult life. I would pray my children didn’t have to suffer from it, it such a tortures disease. I understand what homeless people go through, that is why I am worried about her. It’s not new to her, she has spent many a year on the street even though she would deny it to us. She has also spent several years in prison, and to be honest I felt she was safer in there than on the streets. We knew where she was, she was hopefully getting medication and she was housed and fed. If she could stay on medication I think my family could have a better chance of helping her. I just dont know after 20 years of this lifestyle if she will change, she has progressively gotten worse.

I think at this point I just have to love her from afar. I’m going to give her the info for any shelters near her and after that just keep convo light with her until she can come down from where ever she is and start wanting to make a change currently. I’ve tried to stop talking to her but I need to know at least she is okay.

Thank you again for all of your answers, I’m tired. I want to go lay down now after getting a lot of that out.


#13

http://www.hudhousing.org

i understand your stress. drug addiction is a hard disease. im blessed that i always shunned drugs as a kid including cigarettes. i cant imagine trying to crawl out of the rut im in right while also battling addiction. id probably start investigating assisted suicide at that point.


#14

All respect cactus, I dont think suicide is an answer. Thank God she has never wanted to take that route. I just spoke with her again today and she sounds like she is a little calmer and clearer today. I found a shelter near her that looks like it would be a good fit, it works with women and children only and they offer mental health care if needed. I’m trying to suggest it to her in as an appealing way as possible.


#15

luckily i dont feel backed into a corner with such huge brain battles. i very easily couldve gotten into drugs as a teen im greatful i didnt who couldve planned for thiss