Family and Caregiver Schizophrenia Discussion Forum

You are all so nice: Does anyone ever have selfish thoughts?

My brother is 55 years old and I have been only dealing with his illness directly for the past 2.5 years. I have posted on this site before. My parents , primarily my dad was dealing with his care since he was diagnosed at age 22. My dad died 2.5 years ago, my mom is not capable of caring for him because she has dementia and needs a caregiver herself.
In the brief time that I have suddenly become the responsible one for my brother’s well being I have mostly felt resentment. Yes I do feel he has been dealt a terrible life through no fault of his own. I do feel I am so fortunate that I do not have schizophrenia.
I always knew the sacrifices that my parents made to take care of him and I am glad I was not burdened with them for most of my life so far.
Now I am his only life line for the rest of his and my life. You are all so caring and loving towards your children/husbands/wives. No matter how difficult the situation it seems like none of you ever say " I am done with this shit , I need to put myself first" I never hear things that I am thinking in my head sometimes. For example, I am thinking sometimes, I wish my brother would get some kind of cancer that would end his life sooner than later. I know this is horrible to say, but I feel that I can say the truth on this site.
Is there anyone else who ever feels like this? My brother is older than most peoples who post on this site because many are talking about their children. He is really long past the time when you could hope that he would improve and possibly lead some kind of real life.
I am sure his brain has been permanently damaged from years of psychosis .
I deal with many issues mostly related to his apartment cleanliness. Thankfully he is on disability which partially covers his rent. The other part is funded through my mom.
My job is to make sure he never gets evicted. His apartment is a disaster. He almost NEVER flushes the toilet after he poops! it is so disgusting. His toile can fill to the brim with poop and it does not even bother him. He can eventually get poop on his clothes and walk around like this! he does not take a shower! he stinks. I have to deal with his toilet almost weekly so it does not cause a problem for other tenants. Luckily I have someone willing to literally shovel out the shit from the toilet if I pay them.
My brother is on medication only recently but still hears voices all the time.
What kind of life is this? it sucks for me and in my opinion for him as well. If he died an early death, I think I would be relieved! Does anyone else think this way even sometimes?

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Hello, I’ve been on this forum for a while but seem to be tho only brit, you Americans handle mental illness a little different than we do over here I think. Firstly, I hear you and I feel you. You are incredible for being honest with how you feel and also who could blame you?? Taking care of a mentally ill person is far from easy and I’m sure you never imagined this would be your fate whilst growing up. My mam has schizophrenia and I’ve taken care of her for as long as can remember. I’ve also been overwhelmed with resentment and had lots of times of screaming ‘why me’. Why didn’t anyone rescue me fron this chaotic world…but now as an adult and a mother I appreciate my past and I appreciate the woman I have as a mother.
It takes a special human to take care of a mentally ill person. You are doing a fantastic job. What you are doing as outstanding and you should be so incredibly proud of yourself. There is not many people in the world who can dedicate their heart and time and all they have to take care of someone that they love who has lost who they are. You are one of those rare people x

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Hey j9sit. I get you. And not to sound callous either, but has anybody looked into alternative living situations like a group home maybe? Or is it just cheaper to make sure the apartment is paid for and pay a maid so that your brother doesn’t get evicted? I get that too…
Sounds too like the meds aren’t working. Or he’s just not taking them. Have you talked to the prescribing doctor about addressing that? Changing meds? Maybe an injectable to take the stress off of having to be sure he takes oral meds every single day?
Yup. It sucks. You’re dealing with the shitty of the shitty (literally. Sorry about that. And yes, that does sound very much like the psychosis is in full swing and what we used to refer to as being ‘in crisis’ state). There are other options like calling in whats called a ‘wellness check’ where I’m from but you’d have to call the authorities and then the state would be involved and that may come with a whole set of other legal problems if they decide it’s a situation of neglect… is temporary hospitalization just not an option? In order to get medications regulated and/or an up to date evaluation?
If your responsibility is to manage the dwelling, is there another way around the toilet issue? Like, installing a specialized toilet for high volume/flow? (Which I guess is null and void if he simply won’t flush and puts foreign objects down too…) it’s a tough one.
Again I go back to, obviously there will be no change in behavior if the psychosis can’t be broken, and that doesn’t often happen without medication. And treatment. Maybe tackle it with the first-things-first approach of cause and effect?

I just want you to know that I share your exact thoughts a lot. My mom who has SZ is also about the same age as your brother. I read so many stories on this forum about people with family members who are doing even more poorly than my mom and they still sound so positive in their comments. It’s really encouraging to see other people going through more difficult SZ cases, but at the same time, makes me wonder if I’m being weak. Easier said than done, but we can’t compare ourselves to others. Everyone struggles, but not everyone feels ready to share these kinds of feelings on this forum.

For the most part, I’ve been dealing with my mom’s SZ almost completely on my own since I was about 12 and yes, most days I feel resentful about how much of my childhood has been derailed. I want the situation to end and I want someone else to help me. I definitely think that things would be easier if my mom passed away. It’s an incredibly stressful situation to be in and you are not alone in thinking those thoughts.

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Hi Wisdom,
My situation with my brother and his meds is pretty unique. He will not see a doctor.
He has refused to see a doctor for at least 20 years. I have a cousin who is an internist who has recently agreed to prescribe medication for him without actually seeing him. Prior to my father’s death my brother did not take medication. The last time he did was when he had the ACT team coming to his place and got injectable meds. That was 10 years ago. They stopped coming and he stoped taking meds.
So my cousin depends on me and my moms aide to tell him how my brother is doing. My brother comes daily to my moms house to eat. The aide gives him his meds. So we know he is taking them. It has only been 6 months. Without my cousin prescribing the medication , my brother would not go to any doctor. So I really do not have a lot of options. It is either that or nothing. We have already tried zyprexa last years for 6 months and he became a hoarder. So that did not work. He is on resperidone now. We had him up to 6mg. I could see significant improvements. But then he became violent with the aide. He has never been violent in his life. One of the side effects of resperidone in 20% of people is extreme agitation. So we had to drop the dose. I do not have many choices. I have an aide for my mom who also is in charge of my brother. That in itself is extremely important. She is willing to clean up his place once a week so he does not get in trouble with his landlord. Ultimately when my mom dies, I will be faced with a problem. I will have to hire someone to do what the aide does now plus feed him. I highly doubt that I could get him to be willing to go to a group home. But I certainly will try. There is no way he would ever agree to be hospitalized. Truly he is not dangerous to other or himself. I m seriously considering getting him a high volume toilet that has a powerful flush mechanism.
I am hoping that by the time my mom passes, his health will significantly deteriorate and I do not have to do this for a lot longer. I am only 2 years older than him, so we will be aging together. It just sucks that it is only me to deal with this all.

I just cannot imagine taking care of your mom for that long! What about your father?
Where is he in this picture. Thank you for your understanding. You do what you do because you have no other choice. What were you supposed to do , just abandon your mom? As much as I resent my situation I could never just abandon my brother.
My mother even though not capable of taking care of him, still cares about him and would be devastated if something happened to him. I do not feel that kind of connection to him, but I morally could not abandon him either. That being said it still sucks. I am not close with my brother. He left his old self at age 22 when he was diagnosed and therefore the person he became was difficult to engage or be close to.

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Hi,
Thanks for your encouragement. We all deserve praise for what we do!

Hi j9sit.
I can totally empathize with your feelings and you should not feel bad. I also commend you for doing all that you do as I know first hand how difficult it is to caretake of MI. It is exhausting on ALL levels. We need more people to assist with all those affected as it is debilitating. Give yourself credit for all you do, however the reality is: It is so draining that one has little time to do self care at times as it never seems to end. I have been the sole support for my unofficially adopted son, who is now 31 and I have been in his life since he was 22. I took him in as he had no support and no family as he was in foster care his entire life. I had no idea of his MI and it reared its ugly head just a short time after I took him in and it has continued to escalate. He has been removed from my home many times, my mother and husbands home as he knows no boundaries and lies about everything and plays the victim and insists there is nothing wrong with him. Finally about 6 weeks ago, he found a great job, loved it and we found him a room to rent close to work that he could afford. At that time he insisted I butt out of his life as he was blaming me for everything. After 2 weeks, he was let go at work and just last week got a call from his landlady that she wants him OUT and gave him written notice. He is refusing to leave and being extremely emotionally abusive to her, eats all her food, blew up her microwave, plugged her toilet, stole her copy of the lease so she had no recourse and now insists she cant make him leave due to Covid! She reached out to me and I have encouraged her to file eviction and call the police as she feels very unsafe in her own home. In fact I called the police last week to do a check on her as she texted me at 2:40 a.m. he tried to open her bedroom door and freaked her out, I did not hear back from her and was concerned. The police did go, only to say that she has to evict him and they cannot do anything. UGH…HIs saga continues and abusing others is what he does and takes no responsibility and never his fault. Any suggestions on what else she can do to get him out would be much appreciated. Thank you all for all you do as I know it is not easy.

Hi. I empathize with what you have to deal with now that you have taken on the responsibility of overlooking your brother’s needs.
I once took a twelve week course called ‘Family to Family’ with NAMI. During one session, the class was asked to raise their hand if they had at some point wished their family member was dead. The majority of the class raised their hand. We as family members have learned that we are dealing with an issue that will continue and not go away on its own.
That is good that you can afford to have someone clean out your brother’s toilet.
Taking care of ourselves is important. No one can do it better than us. So it is best to try to detach ourselves from the situation, but we can care at the same time.

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I feel like these feelings are so common and inthe US, individuals are pushed to the brink by a non-existent mental health care “system” with few options and too restrictive consent laws and privacy laws when it comes to SMI. I’m not an advocate of just shoving folks into sadistic institutions, but there has got to be a better way because now all we have is the ER, jail, or the morgue unless we are gazillionaires who can pay over $30K a month for private care, and even then, it has to be with consent. Depending on severity of episodes, care of SMI is too much for most people, and their loved ones end up homeless or in jail (LAPD county sheriff says he runs the country’s largest mental health institution: the LA court jail.) we need a mental health czar in this country and a total overhaul of all aspects of mental health care: funding for research, wages for mental health care providers; revision of consent laws that take into account the loved experiences of caretakers and family; and law enforcement. Mental dis-ease needs 3-d health care and it is a known fact that 4% of SMI cannot live independently. A new study just came out that proves regular therapy can change neural patterns, and medications are only one piece of treatment. My medical doctor told me LAST week that a significant amount of physical diseases he sees are actual somatic manifestations of mental unwell ness. We need to stop cutting people off at the neck and recognize that afflictions are systemic, body-mind-soul, and our whole society is suffering from a lack of a comprehensive approach to this national crisis. These diseases are taking whole families down, and it’s not just or fair to anyone. Don’t feel bad about having anger. You should. You’ve been marooned with very little hope of any real change or help. We need to organize and insist our tax dollars be spent helping us and our loved ones, and our communities, not just cycling sick people through ERs and jail.

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What are great sister you have been! It is no easy thing to be a caregiver for another person no matter how much we love them.
I am wondering if there are any kinds of assisted living facilities for your brother? Some accept Medicaid and or disability income. I would reach out to a social worker in your area. If you can’t find a good one, call your local hospital and ask for speak with a social worker. They often have a lot of knowledge on resources and how to get them.
You could also see if there are any programs that offer assistance in the home for disabled people. They can actually send someone to the home to help with cleaning, laundry and daily care.
Don’t give up and hang in there! Take breaks for yourself and get support you need.

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