Family and Caregiver Schizophrenia Discussion Forum

New here... Anyone else an only sibling of someone with schizoaffective disorder?

Hello, So appreciative to have found this site. I have just one sibling, who is 12 years younger than me. She was diagnosed with schizoaffective disorder “high functioning” 30 years ago. She is unmarried and had been living independently with well paying employment for several years, but lost her job ten years ago, finding only employment since that leaves her paycheck to paycheck. As she has entered middle age, the symptoms she had successfully taken medication for have changed and she now additionally seems to have an anxiety disorder that basically incapacitates her frequently so that she often leaves work early or needs to be driven home. She has panic attacks regularly. That detail is not what I joined to group initially to discuss, although it’s causing havoc in her life and she is currently in her second temporary inpatient facility in a month. I would really just like to say hello to any other siblings out there and extend my empathy. I am hoping to find some answers as I read others’ experiences as I worry and try to plan for her future. Both parents passed 8 years ago. They were hoping for a different outcome and were in somewhat denial and did not act on trying to establish any future support. There are no other adult family members on either side of our family, aunts or uncles or cousins who live in our part of the country or are in touch. It’s a bit of a lonely experience. I will hope to share anything helpful I can to others who are going through a similar journey, a journey not talked about much. Cheers.

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HI, welcome to the group. Sorry about your sister, that is very difficult to say the least.

I have a sister that may have schizoaffective disorder. It was suspected a few years ago but she refuses to get help so it is likely to be much more complicated now. Currently I am estranged from her. She refuses to answer the door or the telephone when I call. She panics constantly. When she and I have interacted before it is always very confusing and strained. She is deep into some fixed delusions and false beliefs I don’t think would change under any circumstances.

She was once on some medication that made things less bad for her but since the pandemic she doubled down on her fearfulness (understandably) and gave up all ideas of returning to even a family doctor let alone a psychiatrist. She also smokes weed so that does not help her in any way especially with her paranoia. She has been on disability her whole life. She has never been able to hold a job or any relationship. She lives alone and talks to herself nonstop and fully believes Jesus lives with her and not in the spiritual sense most people believe but literally in a chair watching TV.

I have been able to get her some help off and on in the past but this time it seems less likely she will let me back into her “world”. Dealing with her makes me very sad and depressed.

She lives a very tiny, neglected, meager existence isolated in a 300 sq ft efficiency apartment in a bad neighborhood. She has had money and opportunity to improve her conditions, and I have offered to help, but refuses to even consider any change. Change of any kind equals a direct threat to her as far as she is concerned.

She is 59 and I am 61. I was asked by her doctor several years ago to be her guardian so I could make her get the help she needed legally but I am legal guardian to my adult son who has disorganized schizophrenia and that is all of the guardianship I can handle (thankfully my son is doing very well and lives with me)

I myself get counseling for PTSD and anxiety but my counseling over the years has served me very well and I manage okay these days. I will discuss anything related to mental illness with anyone as far as I can draw from my own life experiences. I come from a family full of mental illness and addiction so my personal experiences are extensive. I have written on some of it at this forum.

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Catherine, What a challenge you have day to day. Thank you for replying to my post and sharing your story. I was just interrupted as I read it with a call from my sister from the facility she checked into yesterday. She went voluntarily because she was so afraid of experiencing her symptoms by herself over the weekend, when I will be away, and she has had multiple episodes of these panic like attacks lately. When she called she told me that the psychiatrist there, having met her for the first time, wants to add yet one more drug. She told her to choose from Prozac, Zoloft or Paxil. She asked me to look them up for her because they’re going to expect her to take it tomorrow morning and she has no phone or any way to google to confirm on her own that it’s okay to take with her other medications. My sister, unlike yours, has been taking medications willingly since she was 20. Antipsychotic and anti-depressants and several other drugs to lower her blood pressure, deal with heart palpitations, help with dizziness or nausea… I am very concerned that there may be some long term effects of her antipsychotic medication on her cognitive abilities. To have taken these drugs for that long every day of your life… Yet when she was first diagnosed - and she has never felt this extreme since - she did think there were police spying on her and hidden microphones inside objects in rooms. Since then she has only had auditory hallucinations which are unfortunately very critical of her. But they don’t suggest that she is God or project ideas in her head other than criticizing her or commenting on things she has said. Almost like a conscience, actually. But apparently always negative.

I am so sorry to hear your sister is not able to recognize that she needs help and mistrusts to that degree that she refuses it. Clearly that’s part of the paranoia that comes with it. It’s frightening that in our country the disabled must live so meagerly and in unsafe places. And my heart goes out to you as you care for your son and of course cannot take on another guardianship. I am not my sister’s guardian but I can see the benefit of becoming her guardian in the future. Or rather I believe she needs a guardian. Is there no strategy in place for people who have no family guardian to help, similar to a pro bono attorney? I am currently desperately looking for a case manager for my sister who could be her recovery “coach.” She needs someone to hold her hand to actually engage in the things she should be doing to help manage her symptoms because all she is ever willing to do is take pills. And I do not want to be that person. I am 63 and she is 50.

I am so glad to hear your son is doing well. I can imagine how your sister’s situation is a constant presence in your life, along the side and I hope you find time to take care of yourself.

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I understand. Our sisters need advocates that they will accept to as you said “hold their hand” My sister would be more likely to accept a strangers help so long as it was somebody she happened to run into herself. Unfortunately where she lives she only meets fellow drug users, dealers and other severely mentally ill people. I wish my sister was willing to take meds. She won’t even get the covid vaccine because she thinks it will kill her. Anyway, I do take care of myself, it takes effort but as I get older I realize I am well worth the effort and I am no good to anyone if I am not okay myself. I hope you take care of yourself too. Nice to talk to a peer that understands. Message me anytime.

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Hello Threelittkebirds. Welcome here.
If ever you or your loved one or their doctors ever have any questions or concerns about medications and their effects or their interactions to other medications, I’ve always suggested calling a pharmacist. They are a far underutilized resource of knowledge. They will know usually immediately and more in depth what medications are and which are not compatible with each other. Hope this helps.

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Hi Threelittlebirds,
I have a brother who has schizophrenia since age 22. He is now 56 and I will be turning 58 next month. My father died 2.5 years ago. That is when my life forever changed. My dad was my brother’s life line in every way. My mom started having signs of early dementia before he passed away. So I am left with a mother who cannot help my brother and also needs help herself. I have found only a few others on this site that are dealing with a sibling. I was advised by someone to get guardianship of my brother so I could eventually force him into a skilled nursing facility. Right now he absolutely cannot live on his own. But he does live in an apartment close to my moms house. My father took care of everything related to his apartment, food clothing etc. Now I have an aide for my mom who goes to my brother’s place once a week to clean up his place. If you saw the state of his apartment on a weekly basis you would want to vomit! If I did not have it cleaned up he would most definitely be evicted. He has been on disability since his late 20’s. He does not get any money from my mom. She just feeds him and buys him clothes. I am trying to figure out what I can do to now, while my mom is still alive. Once she dies, I feel that he will not be able to live in his place any longer because it would be very hard to find someone to get him food, make him change his clothes, clean his apartment, and also give him medication. He has been sort of taking medication for the past 7 months but not every day. He goes to my moms house to eat and the aide tries to give him his meds. Sometimes he takes them and sometimes he does not. My biggest issue with him is that for at least 6 or more months now he does not flush his toilet AND he puts garbage in his toilet like paper cups and plates. The aide who is an angel from heaven, cleans his SHIT out of the toilet on a weekly basis. He cannot under any circumstances live with my mom. I would never be able to have an aide willing to have him under the same roof as my mom. I am his only sibling… If he would just flush the toilet my life would be so much better. I cannot understand what his voices must be telling him about flushing but it is a major problem. This is why I am meeting with an attorney in a few weeks. I want to find out if guardianship will help me eventually place him somewhere against his will.

Welcome to the forum!
I’m now the only sister of a 4 years younger than me with a psychotic disorder woman
After 8 years non compliant, isolated in a dark room much of the time, suicide attempts, severe self injury, PTSD affected violent shouting all the time, living with our mum, no doctor no psychiatrist, no therapy, one friend for a few weeks, intermittent attempts at finding a new life and hugely alcoholic and confabulating, trauma from multiple violent relationships and rapes in the past and liver and kidney failure a couple of months ago

She started talking antidepressants a few weeks ago
She has positive energy and is making plans, friendly and happier
Just indescribable really

She is still experiencing psychosis but does know I don’t believe everything she says because she can observe my ‘yes I believe you’ as a lie

I’m schizophrenic 3 -5 years of psychosis between ages 16 - 32 and 16 months in acute psych wards in total. I’m out of the worst for 15 years - only having had a longest psychosis for 8 hours in a really stressful situation
I met my husband to be a few months after leaving hospital

We had a middle sister who was recognisably suicidal from age 4 and lived to be 25 after 12 years of deterioration in Schizophrenia
She was hit by a car absconding from evening leave from 2 years spent on an acute ward

Sorry I hope my story is helpful
We still have our parents
I know this girl will be my responsibility to some extent one day
I think our parents (divorced) will try to make things best for us. We will have an income which is incredibly lucky

I’m so sorry to hear of your situation
I hope my story is helpful to you in some way
I still can’t imagine life with no mum

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Hi. Thank you for reaching out. You’re not alone. I recognize how hard it must be to stay involved and try to help as your sister’s needs and issues change. I have an older brother who was diagnosed forty years ago with schizophrenia. He is also living independently and unmarried, on medication and needing tons of my involvement. (I help him clean his place, which basically means I clean it, just to give one example.)

I read this forum all the time and get a lot out of it. So often it’s just nice to know others are delving into these very very hard places. I am 56. My parents are aging out and I see my future unfurl… At times I feel ready for the total responsibility and other times it keeps me up at night. People say “let go” and all that. Sometimes I can do it, have to do it for my own wellbeing. Other times I don’t. I do so relate to you and the others here who are siblings. I relate to most posts, really.

There are days I see my brother and feel full distress over something happening in his life, only to notice he is not quite as bothered by it as I am. Meaning, I am probably taking on too big an emotional burden. I try to tell myself, I should not feel worse than he does about Problem X. That helps me relax a bit. So hard to do. Just one mental strategy I can share with you. It has taken me decades to learn that one.

Thanks again for writing.

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I’m sorry it took me awhile to reply. My heart goes out to your situation with your brother. I am trying to find out how I, too, can get information on how to become a guardian and how that will help facilitate my sister living in either a group home, affordable living or another type of facility if she gets worse than she is in the future. Over the last two weeks since I joined this group she has voluntarily checked into two sequential inpatient behavioral health facilities, each time seeking relief from her anxiety symptoms which she finds unbearable. They seem to have gotten worse. But then each time she finds a way not to attend the follow up outpatient program to do the work they feel is for the “recovery” needed. I am in the thick of it this week with her. Her roommate, who I know causes her anxiety due to her personal life, is away this week so my sister returned to alone time at her apartment . But even though she may feel less stress without the roommate there, she is alone at night and now has great fear of being alone with potential voices or panic attack symptoms. I know for a fact I need to find alternative living arrangements for her for the near future and don’t even know where to turn. She has been higher functioning than many on this thread and has had private health insurance through her job. So therefore not eligible for many county programs. That’s an entire other story it’s so bad - the way the services work for people who make such low wages yet aren’t on a government perceived poverty level. I would very much like to hear your updates since speaking with an attorney and what it means to be a guardian other than handling finances. I can empathize with how alone you feel, especially since your brother has been so dependent. My sister is acting as dependent as ever. Constantly says she can’t drive her car to appointments now. Calls me to ask the simplest things and fixated like a hypochondriac on every little pain. Needing to describe everything from an itching ear to toenail fungus to constipation. And ignoring the bigger picture or any advice to help herself lower anxiety, such as taking walks. She is extremely passive and prefers medication to solve all problems. She actually works as a peer specialist advising others how to lower their anxiety and cope with every day tasks and goes to training courses for it. But she doesn’t apply any of it to herself. It’s very likely she will lose her job if her panic attacks continue to make her so disabled. So in many ways we are in the same boat. She keeps her room a total hoarded mess of pretty things, but like a tornado hit it. I think she flushes the toilet… I hear you. Hope you’re having a good day. And that since you wrote you have found some hope to get the ducks in a row you need. all the best.

Thanks for describing what I feel so often. Today was an example where again I felt I have come to my wit’s end and I have to find some solid answers to deal proactively with the bigger and bigger growing elephant in the room. Her behavior and how she manipulates is driving me crazy. She is so busy being self centered with her symptoms that she does not see the bigger picture. She would be happy for me to do EVERYTHING for her. The down the road part is a huge worry and as siblings, especially only siblings, we have to get our hands on the resources and do that work. I too often get emotional and then see she seems to be better - usually like today (just hours after crisis mode) acting more composed and level headed than me… so I will put off some of the research I need to do. Such as research to try to find out what guardianship means, group home type options, disability options, asset protection… anything for the future that will help. I think this is partly because our parents died in 2013 and 2014 and they were her big support with no other adult relatives other than myself and my husband. I am seeing the reality in front of us and it’s very scary. And one of the scarier things about it is that her calmness is a factor of her own perception, which is distorted. My sister has lived her life practicing getting what she wants through whatever means she can and I feel very used as she has rejected group therapy, not followed up with my help on one thing after another. She does take her meds, which, from reading other posts here, I realize I must be so grateful for. I love her but she is 51 and I am now 63 and need to construct a foundation for her future with some boundaries built into it for myself.

I’m sorry I haven’t replied until now. I’ve been caught up with some issues with my sister. Thank you for describing your story. What a rough road you and your family have had. I am so sorry about your loss of your middle sister and in such a traumatic way for all of you. I’m glad to hear your other sister is taking medication and feeling better with it now. That’s fantastic! That must be such a relief. And I’m happy for you that this means you can take care of yourself more now, so you and your husband can keep stress at bay and therefore your symptoms as well. :slight_smile:

Hi,

How is your quest going for guardianship? I am staring right now at an old, 60-page publication from my state’s Department of Health and Family Services Division of Supportive Living that outlines everything about this process. It is daunting. Can I look anything up for you, in a general sense?

You are ahead of me in having full responsibility and I appreciate your sharing what it feels like.

I’m glad-but-not-glad that you get it, how easy it is to get pulled into the emotions and off track with a sibling who has mental illness. So frustrating. I for the most part actually like my brother, now. I assume there’s a glimmer of that between you and your sister, despite the challenges? BUT I’m aware that he is capable of being manipulative, either on purpose or unintentionally, to get me off an agenda when I’m trying to solve something for him. An example: him being very evasive when I want to know what his doctor said about a new medication he is supposed to take. My desire is to sit opposite him with a yellow legal pad and write down an action plan after gathering all the evidence and information from him about the whens, hows and whys. He, on the other hand, might want to deflect or avoid, so maybe he’ll keep talking forcefully about an encounter he had with someone at his part-time job, or even more challenging to me, the time he spent the other day “visiting” with one of his personal angels in another galaxy. That sort of thing.

But…rapport. Keeping up a good rapport with him is so important that I sense if I lose that, then all is lost. I have only gained it in recent years. I went through the courts and an eviction challenge with him years ago without us being on good terms and it made it so much harder for me. Him too, I’m sure. Now I try hard to stay mired in his topics with him as long as I can so he knows and feels we’re “in this together.” (Even though we’re not since, of course, we’re separate people and he lives a reality I don’t and vice versa.) But I do feel tricky and mean when I try to insert my questions into the conversation stream. My efforts can be almost humorously out of place. “So, speaking of angels, when Dr. Bob checked your blood sugar levels…”

Good luck this week and thanks for writing.