Family and Caregiver Schizophrenia Discussion Forum

I feel constantly in despair due to my brother

As caregiving father, I can understand why your parents attempted to manage this themselves and shield you. We already do that today. But until your post we’ve not considered the implications of our actions on the younger two.

Better to get younger siblings sucked into the problem early, and all get knee-deep in the SZ issue, or insulate them and manage our oldest as privately as we can? Hoping that in 20-30 years when we may no longer be able to care for him, that our oldest is stable and independent. Or hoping that if our oldest can’t live without help that my two younger children have hearts like yours?

Great question that you and others on this forum may uniquely hold the answer.

Considering I inadvertently stepped into a caregiver role for my brother with bipolar disorder at 17 and later developed SZA disorder in my mid twenties, I have mixed feelings about this. My parents were on an extended vacation and I was home alone for the summer when he had a manic incident and became hospitalized. It was far too much responsibility to foist on me at the time, as I was only starting to manage myself— much less an older and largely uncooperative sibling. Still, the experience and my observations prepared me for better self-care later on. Search my post history for specifics.

My advice is not to shield siblings, be as transparent as possible, educate-educate-educate and make and refine plans. Caregiving is a role you either step into or step away from— each according to their abilities. It’s more of a calling than anything else. And as with parents, siblings tend to fall into primary, secondary or non or barely participating roles based on their ability to deal. It’s often best played as a tag-team sport, as the SMI can be capricious at times and will behave differently interacting with different people and many heads are often better than one when they share intel and brainstorm ideas. I don’t recommend ganging up on people when they are ill— except in extreme circumstances like cage matches and brawls :wink:. The more I think about it, ‘pro wrestling’ is an apt metaphor. Caregiving can be bizarre and melodramatic and often unreal, but can also be a dangerous sport if you don’t know how to take a punch.

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We agree to be totally transparent with our 2 younger adult children and they want to be engaged with their older brothers ( only older by 2 yrs) care plan and journey and help make good decisions - we are all new in this and it is our family’s journey now - schizophrenia has become a common word in our family’s vocabulary now.

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We each decide what level of responsibility and effort we are willing to give to another family member with SZ. Life is not easy. Especially when also caring for other family members like your mom. There are many debilitating illnesses that affect people; SZ is one that happens to be lifelong (although can improve significantly with the right treatment and acceptance of it) and is no doubt one of the very worst to deal with in many situations (certainly not all). You have to take care of yourself…,to have some balance…in order to help your family member.

I view it as encouraging that your brother is taking meds. It can take many months for some anti-psychotics to reach full efficacy. Early treatment is important to a better outcome, but that does not mean it is too late to start. Don’t beat yourself up for not being more involved earlier. We do the best we can with what we know at the time. Keep learning. I hope you have read the book “I Am Not Sick; I Don’t Need Help”. NAMI Family Support Groups and their Family to Family class offer help, support and education. If there are not NAMI programs in your area, many places are conducting these via Zoom and you could easily do that from anywhere. I believe you will survive this but seek help in the process!

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Hello,

I do want to lend my support for you and your family! I am in the same situation except I have been the only advocate for my brother who has had the disease of schizophrenia for also 35 years. His symptoms began when he was 22 years old but he was not diagnosed or treated appropriately until he was 30 years old. You are in a complex situation but not alone! I understand completely! I am brother’s legal guardian and conservator since my father died 4 years ago and since my mother is elderly and currently in hospice. All siblings of persons with schizophrenia will eventually be in our current situations. The stress is real and difficult so be gracious and kind to yourself!

Things I find helpful for coping with the situation:

  1. Poetry

I find poetry is sometimes helpful by reframing my thoughts. Every year, I re-read this wonderful poem by Robert Hastings – a reminder that the joy of life is the journey and not the destination.*

Tucked away in our subconscious minds is an idyllic vision. We see ourselves on a long, long trip that almost spans the continent. We’re traveling by passenger train, and out the windows we drink in the passing scene of cars on nearby highways, of children waving at a crossing, of cattle grazing on a distant hillside, of smoke pouring from a power plant, of row upon row of corn and wheat, of flatlands and valleys, of mountains and rolling hills, of biting winter and blazing summer and cavorting spring and docile fall.

But uppermost in our minds is the final destination. On a certain day at a certain hour we will pull into the station. There sill be bands playing, and flags waving. And once we get there so many wonderful dreams will come true. So many wishes will be fulfilled and so many pieces of our lives finally will be neatly fitted together like a completed jigsaw puzzle. How restlessly we pace the aisles, damning the minutes for loitering … waiting, waiting, waiting, for the station.

However, sooner or later we must realize there is no one station, no one place to arrive at once and for all. The true joy of life is the trip. The station is only a dream. It constantly outdistances us.

“When we reach the station that will be it!” we cry. Translated it means, “When I’m 18, that will be it! When I buy a new 450 SL Mercedes Benz, that will be it! When I put the last kid through college, that will be it! When I have paid off the mortgage, that will be it! When I win a promotion, that will be it! When I reach the age of retirement, that will be it! I shall live happily ever after!”

Unfortunately, once we get it, then it disappears. The station somehow hides itself at the end of an endless track

“Relish the moment” is a good motto, especially when coupled with Psalm 118:24: “This is the day which the Lord hath made; we will rejoice and be glad in it.” It isn’t the burdens of today that drive men mad. Rather, it is regret over yesterday or fear of tomorrow. Regret and fear are twin thieves who would rob us of today.

So, stop pacing the aisles and counting the miles. Instead, climb more mountains, eat more ice cream, go barefoot oftener, swim more rivers, watch more sunsets, laugh more and cry less. Life must be lived as we go along. The station will come soon enough.

  1. Books

I also have a book of poems about the grief we experience in life and how we react to that grief. This helps me keep losses in a more rationale perspective versus using denial, repression, projection, displacement, regression, etc… as coping mechanisms. There are many well written books about grief currently, so I would recommend searching for some that may interest you.
Another interesting book you might want to explore is No One Cares About Crazy People: The Chaos and Heartbreak of Mental Health in America Hardcover by Ron Powers.

  1. Treatment for Depression

If depression is an health issue for you then, I do recommend both an antidepressant and cognitive behavioral therapy for yourself. When depressed, it is hard to process situations clearly. The stigma is a barrier but treatment can free the mind and improve one’s life satisfaction.

  1. Laughter

Watch a funny movie. ELF is a good one for this time of year.

  1. Meditation

Learn, practice, and adhere to meditation. This is a hard skill to learn especially for someone who has had chronic stressors their entire life but it is possible.

Important Things to Share:

  1. Special Needs Trusts

We set up a special needs trust for him so he can have money from my mother’s estate when she dies, will continue to have Medicaid/Medicare, and he will not have to repay Medicaid back for his past treatments based on the money he would inherit if the special needs trust was not in place. This is very important so that you can assure your disabled brother continues to have financial support after you mother dies (if money does exists in her estate).*
All of this is requires working with an attorney who has the expertise and experience with working with persons with disabilities, serious mental illness, and/or chronic disease. If you have not accessed an attorney with this expertise, then I would recommend you do so ASAP.

  1. ADLs

Another important issue is activities daily living (ADLs) which include SSI/disability, food, shelter, clothing, and etc…,. My brother became very sick after my father’s death both mentally and physically. At that time we had to hospitalize him for 2 weeks. I requested a social work consult during his admission. I informed her of my brothers history and resources. She found a nursing home/long term care facility for him to live while he was being stabilized. Medicaid pays for his long term care. When he turned 55 years old then Medicare also began to pay a portion of his care. My brother underwent many cognitive and activities of daily living tests once he was stabilized. The tests are objective and inform the professionals of his capacity to function independently. It was determined that he requires an assisted living level of care. Assisted living is not paid for by Medicaid or Medicare therefore he remains in the nursing home. The best situation is to place him a=in the least restrictive living environment but this is not paid for by governmental programs. I have tried to find a assisted living that I could pay for out of his trust but every single facility I have contacted will not accept a person with a serious mental illness (schizophrenia or bipolar). Yes, this is discrimination! If you live in a state that has behavioral health nursing or assisted living facilities then, I would recommend you seek them out. Colorado has the least number of resources for the seriously mentally ill in the United States. Hence, our mental health disasters! Covid-19 has made matters worse so he has not been able to go outside or leave the nursing home for 9 months. I have to visit by sitting outside and talking to him by phone through a window. Crazy but understandable!

  1. Early Onset Alzheimer’s Disease

One other important issue I would like to address with you that is not common knowledge. Persons with schizophrenia, multiple sclerosis, and downs syndrome often manifest early onset Alzheimer’s disease. Given you mother is suffering from dementia, I feel it is important to mention this. In order to diagnose Alzheimer’s this in a person with schizophrenia, it takes a geriatric psychiatrist with this type of expertise. My brother was diagnosed as having early onset Alzheimer’s during his hospital admission. Once his schizophrenia was stabilized I had him retested. He did not have early onset Alzheimer’s. When he was tested in the hospital for dementia, he had psychogenic polydipsia. This means he was drinking to many fluids. Too many fluids decreases a persons blood level of sodium and causes dangerous mental confusion. Once the sodium (an electrolyte) is normalized to the appropriate range/level, the patient’s mental status returns to normal if there are no other identified causes. Hence, I recommend that you seek psychiatric care from the appropriate board certified psychiatrists and be cautious and/or get second opinions on any of his current and future diagnoses.

  1. Medication Adherence

Daily oral medication administration is one possibility (as he his getting it from your mom’s home health aide). Another possibility for non-compliant patients or patients with barriers to daily oral medications is a medication called Prolixin Decanoate which is an injection. The injection (shot) is administered once by a licensed professional. This might be a discussion to have with his psychiatrist. Obviously, your brother has to give you permission to speak with his doctor according to the federal law HIPAA. You may want to reach out to his psychiatrist and request that he/she has this discussion with your brother and obtain his permission. If you are his legal guardian then this is not required and you can participate in his chronic care management. Notice the word CHRONIC.

  1. Chronic Disease = Schizophrenia

Schizophrenia is a chronic disease therefore, he will need care management for his entire life. If your brother has a substance use disorder then, the complexity of his care requires even more dedication throughout time. This is the same as any other chronic disease/disability in which the affected person will require family caregiving for their entire life. Schizophrenia is difficult but the physical limitations required for one to one total care for spinal cord injuries/disease, progressive neurologic diseases, and cognitive diseases/brain injuries can also be as demanding. Unfortunately, we all are not blessed with perfect physiological processes. Health prevention, promotion, maintenance, and therapeutics takes work and requires professional assistance. Illness takes even more work and professional assistance! I have found that when I become fatigued with the challenges of my brother’s and mother’s health complexities, I take intermittent breaks. These are tough situations and you do need all the help you can get from anyone that desires to be involved or is professionally involved. Accept assistance whenever feasible. If your county mental health services offers professional care management services then, I would recommend seeking their assistance with your brother’s disease process.

  1. Blessed and Grateful

I would like to remind you that the schizophrenia disease process is a genetic one. This means you are the lucky one! You could have been the child who manifested the disease/schizophrenia. This is your blessing and you should feel grateful! The burden maybe unfair but you may be his only familial support. The disease process has both positive and negative symptoms. The positive symptoms are the hallucinations and delusions. The negative symptoms include blunting of affect, poverty of speech and thought, apathy, anhedonia (inability to feel pleasure), reduced social drive, loss of motivation, lack of social interest, and inattention to social or cognitive input. Your brothers disinterest in your life is not intentional on his part. His disinterest falls within the negative symptom category. He disease causes him not to be interested in you. You both have a surface relationship because of these negative schizophrenia symptoms. My brother can not be socially stimulated for more than 20 minutes (maximum) at one time. He is unable to handle the bombardment of sensory input which is also part of the disease process. Blaming him for these uncontrollable or untreated symptoms (disinterest in you and surface relationship) is inappropriate since he is truly unable to either control them or overcome them.

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Hi smarti08,
Your message was extremely helpful! You are essentially in the exact position that I am in. I think you are lucky because you found a nursing home that was willing to take your brother. My brother has disability and therefore Medicare. I am not sure how to get him medicaid? I realize that my brothers lack of interest in me is part of his disease.
My main issue with him is the toilet problem. In case you missed it, he constantly throws things in the toilet that do not belong in there ( cups, plates) and then poops on top and therefore clogs the toilet. He will keep pooping in the clogged toilet.
If he does not throw things in there then he poops in the toilet and does not flush!
He was not doing this to the extent that he is doing it now before my dad died.
He can be vey smart in many areas, like finding cash in the house that my mom hides. Finding her favorite cereal that he takes with him. He is always looking for things to take. Yet, he poops and does not flush . I think that he can be manipulative and now that he sees that my moms aide is going there once a week to clean his apartment, he may just be doing this on purpose. Do you think that in the past 2 years he cannot figure out how to flush a toilet since he has been doing that his whole life? yes my dad did have to call a plumber 2-3 times a year for a disgusting toilet full of poop, but it did not occur on a weekly basis.
I would appreciate your thoughts on this matter.

Yikes. You win the prize with the literal and figurative “shit-show”. Very sorry for that situation. Haven’t experienced anything of the sort but can tell you that I would HAVE to get that shit straightened out to keep engaged (pun intended and used with much sympathy).

Talk about ‘last straws’… that would be in my top 2!!! Attacking me? Trying to kill me? Hurting yourself, again? Destroying our property? Completely derailing my already-anemic sex life? Sucking the life and time and money out of us? I’ll continue to take those straws but making me the Mayor of PoopTown? Oh helz no…

Seriously, that well and truly sucks. Sorry j9sit.

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I need to know if my response was posted.

Oh boy. So, when my brother was not stable and his sodium level was low he was confused. This confusion in addition to his delusions were an issue with his toileting.

He was incontinent of stool and urine. He had smeared the stool all over when trying to clean it up. He also at that time had a cell phone that he would put in his shirt pocket and everytime he bent over to flush the toilet the phone fell into the toilet. I replaced the phone several times with the same result. Once he was stabilized on his Risperidone and his sodium level returned to normal all of this stopped. The precursor to my brother’s deterioration was my father’s death. He will most likely deteriorate worse when my mother dies. He is a mama’s boy. I suspect this will be the same in your situation.

Given the information you have shared perhaps, he is also having some other cognitive disturbance on top of his schizophrenia. He is not stable! He needs help!

Is he drinking too much fluid called psychogenic polydipsia decreasing his sodium level and causing confusion?

Is he now starting down the path of early onset Alzheimer’s disease and he is having incontinence/stooling/urinary issues?

Is he acting out and this is behavioral?

All of these issues are difficult to clinical dissect even when the person is an inpatient. They take time to explore and observe.

I do not know your brother’s functional status and his circumstances. Most people with schizophrenia are likely to be poor, unemployable, dependent on others for food, shelter, clothing, organization, cleanliness, and money. My brother was homeless at one point and I had to take actions against my parents to provide for his needs. Very stressful! What I did not know then is that there is an entire system out there one can access for resources for him. This is challenging and frustrating but if you find the right people they can help!

He and you need OUTSIDE SUPPORT!

In my opinion these are the steps I would take: begin to elicit help from the psychiatrist, county social worker, and an elder law attorney.

Contact his psychiatrist (geriatic) and let him know of the situation. Perhaps, a home visit from the county mental health services department would impress upon them that he is not capable at this time to meet his activities of daily living including the ability to toilet himself appropriately. They then can set things in motion so he can get the services and resources he and you need!

Request your brother be admitted inpatient for stabilization (1-2 weeks).

Request a social worker consult from the psychiatrist so the social worker can begin to work on placement in a long term care facility.

Obtain an elder law lawyer who has experience with Medicaid, Medicare, guardianship and conservatorship ASAP.

They can help you get his SSI/disability, Medicare, and Medicaid straightened out so he can be placed in a long term facility.

If you were to go see a psych mental health professional for yourself and explain these stressors they may have contacts that could help with your brother’s and mother’s situation (back door approach).

I do not know where you live but in my research, I have found some states have behavioral health long term care facilities specifically for persons with serious mental illness. Most of them are on the east coast. If such a facility exists in your area, they may be a great place to start. They may have an admissions coordinator and social workers that can help you get the Medicare and Medicaid he needs for placement. They may be able to lead you through this daunting journey which may be another back door approach.

Why a long term care facility for stabilization (months to years)?

As the person with schizophrenia ages the efficacy of their antipsychotic diminishes. The longer a person is not stabilized the more negative impact on their brain.

The duration it took to return my brother to his pre-death functional status took approximately 1.5 years. I began to recognize him at that point. When I ask him about the toileting and the cell phone

issues, he does not remember them. He does not remember his hospitalization or exactly how long he has been in the nursing home. His mental status changes were so significant that he does not remember any of it.

If you receive push back from the psychiatrist or mental health professionals about an inpatient psych admission because he is not a danger to himself or others, then

have the elder law attorney begin to manipulate the state judicial system that oversees cases related to incompetence/serious mental illness. The lawyer will need to access the county court system where your brother lives and then the county court will work with the state.

I hope this helps!

I feel your anguish and wish you a happy holiday season!

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One more thought.
If a person is hypoxic (low blood oxygen level) they also can be confused and have ADL deficits ie. toileting. Is your brother a tobacco user? Does he have a 20 year history of cigarette smoking? If so then he may need to be tested for COPD and if diagnosed then treated. Many persons with schizophrenia are addicted to nicotine. The nicotine binds to the nicotine receptors in the brain which seems to help their cognitive function. There is a physiological reason for their nicotine use.

Hi Smarti08,
I cannot begin to tell you how helpful your posts are to me. You have experienced some of the same problems with your brother as I have with mine. My brother drinks a lot of fluids! he takes gallons of milk from my moms house. Also when he is there he drinks a lot of milk and juice! The low sodium levels are something I have never even thought of! My brother has no access to money because he cannot be trusted to spend it wisely. He had a SNAP card and all he bought with it was juice!
he comes to my moms daily for food . The aide gives him his meds at that time.
I always thought that my fathers death would have a negative impact on him. It is just so hard to tell because he does not show it. He did not come to my dads funeral. Probably because there were going to be a lot of people. My father was his rock. He had a much better relationship with him than with my mom.
The advice you gave about outside support is very helpful. It has been 2 years since my dad died. I was overwhelmed with the sudden responsibility for both my dad and my brother at the same time. I almost had a nervous breakdown. In the past 2 years I have had to take over my moms finances, deal with all my brother’s shit (literally )
deal with my moms worsening dementia and try to help myself with severe anxiety due to everything that happened. The social services part I have not bean to explore yet. I feel like I just needed some time to be at peace before taking on another problem. My brother seems to have a very good memory for things that happened in the past. He also listens very carefully to things that he cares about. Like he remembers when I say I am coming back to visit. he remembers all my friends from college and childhood. He knows where my kids are in life. Like my daughter in medical school in NY and my son finishing college and getting a job.
he does smoke cigars. The cheap small ones that you can get at a gas station. I have no idea how he gets them. he has no money except when he steals it from my mom. I have put a stop to that though. It took me 2 years to get my mom to stop taking cash out from the bank.
My mom is also a problem because she does not want to acknowledge that she needs an aide and also wants to try to show me that she can do everything herself .She is in denial of her decline.
The aide always talks to my brother about the toilet. She tells him to flush. His response is to put his fingers in his ears and pretend he does not hear her.
That is his response to anything you tell him that he does not want to hear.
My parents put my brother in an apartment a long time ago because they could not live with him. it gave them a chance to have a life. Putting my brother in any long term care facility would be helpful but I cannot imagine how I would get him to agree to go there. he is not dangerous to himself or others. he does technically live on his own. Could they forcibly put him in a facility because of his toilet issue alone?
Somehow I doubt that. But I can certainly reach out to some kind of outpatient psychiatric facility. I once did and they told me he had to be on medicaid to get services.
My dad looked into getting him on medicaid and it would cost $120 per month because his disability money was a little above the medicaid threshold.
He said to me , why should I pay $120 a month if he does not want to go to a doctor.
On the doctor front. My brother refuses to go to any doctor. it would be impossible to get him to go to one. My cousin is his internist ( when he used to go to him about 5 years ago) My dad would be able to get him to go once a year . But that only lasted 3 years. Then he stopped going. My cousin prescribes the medication for my brother.
We do telemedicine when my brother happens to be at my moms house. of course my brother does not really engage. But we give my cousin all the information he needs. SO… my brother does not even see a psychiatrist . I would never be able to get him to go to anyone. I am lucky that my cousin is willing to help me. Otherwise my brother would be unmedicated ( as he has been for 15 years) and he would only get worse but not enough to ever be hospitalized because he is not dangerous to himself or others.
In any case. I am so very thankful for you smarti08. Finally someone who has my exact situation! although I am jealous that you have your brother in a nursing home.
that is really where I eventually want my brother to be .
Any thoughts?
i

One more piece of information . I live in CT. and my mom and my brother live in NY.
So I have a commute every time I visit which is generally every 2 weeks.

Yes your response was posted. Can you respond to my posts now?

I am overwhelmed also but I went to get outside help! Do not delay or enable the situation to continue! Your inaction is an action!

You absolutely can not do this anymore by yourself (both your brother and mother). He is sick and needs professional medical intervention, legal intervention, and governmental resources.
Believe it or not, by getting him the help that he does not think he needs is the best gift you can give him and your family! People affected with the disease schizophrenia lack the insight into their own disease. Hence, the inability to understand that they are sick.

GO GET HELP ASAP!

Lucky for you he lives in New York. New York has more resources for those with mental illness than most other states. You will need to acquire assistance form the county he lives in. This is now so much easier than in the past with zoom and email. Go get guardianship and conservatorship for your brother and mother ASAP per a elder lawyer in the county that they reside in and in New York! This will then allow you to get them the help they need.

PS: My mother refuses to go to the hospice and stays at home with hospice services coming into her house. This is not ideal but I know the nurses can intervene when it becomes unreasonable with help from social services. I live 2 blocks from her which has helped tremendously. None of my family is proactive and helps themselves which is very frustrating and I understand!

The key word for the court is “gravely disabled”.
You can go to the court and request assistance for your brother.

what kind of government resources are you referring to? A long term care facility for him would be good. But I am sure you know that you cannot force a person to go somewhere if he does not want to go. I understand conservatorship takes a very long time to get. Still I cannot imagine any court ordering him to go to a long term care facility.

Just following up to see if you have had any success with your issues.

What kind of places are you looking at for him to live at and be looked after? I have been trying to look at support homes for my mom to go to, but I haven’t found anything that seems to be what I’m looking for. Are you looking at places specifically for people with SZ?

Hi smarti08,
My brother has SSDI, and SNAP benefits. There is no place where he can go except a goup home and you know this is not a get in free card. It requires him to be seen by a psychiatrist, which he will not do. It also requires im to agree to go there, which he will not do. Social services exist for those on medicaid which he is not. He would never even talk to a social worker, He does not have a phone because he unplugs it all the time, so we just disconnected it. He cannot use a smart phone because he is incapable of using any kind of technology. Even if a social worker would come to assess him, they would not be able to call and make an appointment with him. He also roams around his neighborhood and can never be counted on to be anywhere at any specific time. He does not own a watch or care what the time is. The situation must continue to be that he lives in an apartment and is taken care of by others . it just sucks that I am the only one who has this responsibility.