I feel constantly in despair due to my brother

Family
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So, treatment and intervention can be court ordered. Go to the county court where he lives and ask for the legal professional that handles the “gravely disabled” seriously mentally ill cases. Step up an appointment with that person and go over the legal actions according to the county and state statutes. Next, ask to start the process of guardianship and conservatorship.

We spent too many years thinking my brother could function at a higher level than he ever capable of. He barely graduated from college when he became ill his last semester. The longer he does not get adequate treatment for his disease process, the more his brain and function will deteriorate.

Once his treatment is court ordered, mental health professionals will intervene based on the appropriate statutes. He will be picked up and taken to their offices by the police. It is not punitive but a necessary situation. He also needs someone to help get him on Medicaid so he can potentially live in a skilled nursing facility. If he is on SSDI he should be getting Medicaid. He can only have $2000.00 in his bank account which is absurd but that is the rule. My brother only gets $4500.00/year from SSID. I then pay the skilled nursing facility 3600.00/year for his care. Medicaid covers the rest. In Colorado, Medicaid pays $285.00/day for each recipient in long term care/skilled nursing facility (SNF). This leaves about $75.00 per month for all of his other needs.

He is medicated, safe, and receives the care he requires. I actually feel guilty that I did not get this type of treatment and care for him at a younger age. The medical community now knows that untreated schizophrenia is the more detrimental to the brain than if the disease is treated appropriately. The standard of care is to maintain the affected person on antipsychotics at the lowest effective dose.

My brother had all the same barriers for 30 years. I recently was able to teach/coach him how to use a smart phone in a very limited capacity. Phone calls only. He did try to take a picture with his phone today but he needed assistance. I let him direct the learning process and consistently provide the assistance and reinforcement he needs. Schizophrenia decreases a person’s IQ.

I also am the one who has had all the responsibility. No one else in our family has or had the capacity to deal with his illness and disability. It has been a long haul. I do not know how old your brother is but if he is still fairly young then a recovery type program is also an option but they are self pay and expensive.

My brother like yours would never have agreed to any of these things based on his own free will. I had to be strong and take the hard steps. I reinforce that he suffers from a disease process that can be treated just like any other chronic disease. I have repeated over and over again that he needs medication to treat illness and stay well just like me with my chronic diseases. I pray that someday we find a cure for this disease. Sooner than later.

Now that these things are in place, I think he is relieved that the day to day stressors of life are not haunting him. Stressors are hard for all of us but multiply that by 100 for someone with a serious mental illness. He seems to be a lot less restless.

Anyway, I hope this feedback is helpful. The process takes legal professionals in addition to the medical/psych professionals.

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The loss of your sibling to such a unrelenting chronic disease is a grief process that lasts a lifetime. I cry when needed and acknowledge my sadness on a daily basis. When people ask me why I continue to educate myself and work really hard, I tell them that I am grateful to be able to function at this level. A mind is a terrible thing to waste when the capacity exists. My brother never had these opportunities.

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Smarti08: I’m an executive of a private-equity backed company which I share only to say that I run with many ‘over achievers’. Many of them have amassed millions and built incredible businesses and value.

And NOT A SINGLE ONE could compare to the dedication, love, and servant leadership you’ve LIVED in caring forever your brother.

I’m overwhelmed with appreciation and with admiration at the sacrifices you’ve made to care for a loved one. I’m certain it has been at high cost to “the life you could’ve had”.

But I’m also certain that your life has left a bigger impact than many of the overachievers I’d previously mentioned. Life isn’t fair. But when we love others more than ourselves, then this is how it looks.

My hope is that we all be inspired to follow your inspiring example. Love wins.

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WOW! That is a depth of information. Thank You! My brother is 55. I know my brother has deteriorating brain function. I sometimes see on his statements from social security that he has medicaid but we never applied for it. Before my dad died he told me that my brother’s income from SSDI was a little too high to qualify for medicaid. He gets $12,600 per year. So my dad said he would have to pay $120/month to get medicaid.
I know about the $2000 per month. My dad told me that. He has a representative payee account for his disability and I am the representative payee. I am surprised you think New York has more services. There are also many more people with mental illness here. The question I have is how do I get a court order even if I have conservatorship when he is currently taking medication. Of course that is dependent on my mom being alive.
I am going to look into doing what you are saying. Thank you for this information. This is very helpful. How old is your brother? One other point, I live in CT. A 2 hour drive from my brother. So it is a little more complicated . I go there every 2 weeks to see my mom. He does engage with me but only for maybe a half hour. I shuts down or leaves my moms house if I bring up any topic that elates to him. So I do not know if I have his trust at this point.
What is the difference between guardianship and conservatorship? Thanks so much smartie08!

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Sando,

Thank you for your kind words! I appreciate the acknowledgement. I am crying. This is a good thing!

I share because I care about all of you. Rarely, do I find anyone that has any idea what this disease entails and understands the hurdles. Schizophrenia impacts 1% of the population worldwide. No one really wants to talk or hear about the struggles the affected face. I think it is fortunate we now have a medium to share the challenges we all face. Perhaps, we can help one another along the way.

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Throwaway_heal,

This is an issue that breaks my heart. Over the past 4 years I have tried to find different settings for my brother who lives with the disease schizophrenia. There are a very limited number of group homes. Most assisted living and nursing homes will NOT accept a person with a serious mental illness diagnosis (schizophrenia and bipolar with psychotic features). Yes, this is discrimination.

Look specifically for skilled nursing facilities (SNF) that accept Medicaid. The key terms are “behavioral health unit or facility”. This usually refers to a place where care is geared specifically for those individuals with serious mental illness.

Sometimes I feel like my brother is a misfit toy but there is no island he and others like him can live on unlike in Rudolph the Red Nosed Reindeer.

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J9sit,

My brother is going to be 57 in May. As above, the skilled nursing facility is paid by Medicaid but a portion of his SSID is also collected for his care. Almost all of my brothers SSID is needed to cover a portion of his care. Medicaid and Medicare are meant to be protective subsidies for financial gaps for the most vulnerable US citizens. I am not sure about paying for Medicaid. In my experience, Medicaid is based on income level and poverty line. It is determined by the state one resides in. Medicare is determined at the federal level. Once a disabled person is over the age of 55 yo, then they can also begin to receive Medicare. My brother now has both benefits. A medical mental health social worker in the county your brother live in should be able to assist you with the process.

The court order is related to his inability to care for himself even when he is taking his antipsychotic medication. Again, the key words are “gravely disabled” “incapacitated” or “incompetence”.

Antipsychotic medication compliance is a huge issue. I thought my brother was taking his medication. We had a special dispenser that was programmed to remind him to take the medication. Once he was placed in the nursing home for stabilization I realized he was not consistently taking his antipsychotic medication as prescribed. I know this because he gained 50 pounds the first year he was there. Why? If a person is taking their antipsychotic as prescribed, weight gain is a side effect and can be an objective measure of compliance. Weight gain is the most prevalent side effect of an antipsychotic medication. There are many ways a person can divert taking their medication even if a responsible person is overseeing the administration. The most common way is to “cheek it” and then spit it out when no one is looking. For many years, I would find his medication stuffed in different places inside his room, bathroom, and/or living room when I would clean. Once I packed it all up in a box and took it with me to his mental health appointment so the case manager could see he was not compliant. Hence, you might need to verify that he is actually ingesting the medication.

Forgive me but I do not understand your statement that his medication is dependent on your mother being alive. Is this because her home health aide administers his medication? Does she/he watch your brother swallow the medication when it is given and does she/he check his mouth to see that he actually swallowed it? The other consideration related to his antipsychotic medication is that it is at a therapeutic level. Does he get blood draws to measure the level? Also, if he is drinking too much fluid (milk in his case = psychogenic polydipsia) then is the pharmacokinetics of the medication being altered (ie. diluted). A blood draw to measure his serum level of antipsychotic is an objective way to find out if the medication is at a therapeutic level and whether or not he is actually compliant.

The issue of trust is hard to establish with a person who suffers from paranoid delusions. When my bother is stabilized on his medication, he trusts me more. Another hint about medication compliance. I would suggest not to use trust as a consideration for your actions due to his disease process. Taking action may not be what he wants but is what he actually needs. If it helps, my brother knows my actions are to help him because I love him even if he does not like them. I know that he knows I always will have his back. When I get sick or have surgery, he becomes very stressed and anxious however, his reaction has been less intense since he has been in a secure living situation where he receives supportive care. Now that my brother is stabilized and is administered his medication by trained professionals, a trusting relationship has flourished in a positive direction.

Guardianship: A guardianship of the person relates to making decisions about the ward, such as where he or she is going to live, what kind of medical treatment, care and assistance will be received, how the person will be protected and what kind of supervision will be received.

Conservatorship: A conservatorship relates to making financial decisions and managing the estate of a person who is unable to manage his or her property and affairs effectively.

As a guardian and conservator in Colorado, I must submit reports to the county court annually. These are legal designations to protect a person who is unable to effectively receive or evaluate information or both and/or make or communicate decisions to such an extent that the individual lacks the ability to satisfy essential requirements for physical health, safety, or self-care, even with appropriate and reasonably available technological assistance. Hence, our brothers are part of a vulnerable population that requires protection.

Key professionals to elicit assistance from include:
psychiatrist, psychologist, social worker, elder/special needs lawyer, county court, and a skilled nursing facility with a behavioral health unit.

It takes a village!

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Smarti08,
I have more questions for you. I am so thankful for all the information you have given me! I am moving in 2 weeks and have been packing most days. I will write you back one evening this week.
Thanks again!

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smarti08,
I am forever thankful for all your posts! You alone have motivated me to start the conservatorship/guardianship process. The information you have given me is invaluable!
Also most people on this forum are parents . You are in the exact situation as I am being a sibling. Also my brother really has deteriorated since my dad died 2.5 years ago. You have a similar situation with your dad dying. Also our moms are unable to take care of their sons.
The reason my brother is currently dependent on my mom being alive for medication compliance is because he goes there everyday for food. The aide gives him his medication with a glass of water. He eats right after he takes he meds. I know he can cheek it with water, but doubt that he can continue to cheek it while he is eating food. he also stays for at least an hour when he comes to eat, so that would be a long time to hold a pill in your mouth. I have been there when he is arriving in the morning and have seen him take the meds and actually chew the pill.
As for blood draws. My cousin ( who is an internist ) is his doctor. He wants me to either bring him to his office or go to a blood drawing site to get blood work. I have attempted many times to take him to the office and he just bolts from my moms house. I have not attempted taking him to a blood draw site, but would anticipate that this too would be unsuccessful. My father was the only one who could get him to go to my cousins office. In the last 2 years of my fathers life, he was not successful at getting my brother to go. He was also battling cancer and was giving up on my brother because he did not have the strength any longer to deal with him. After 33 years of doing everything for him, he just did not have the energy any longer.
I have a friend who’s brother practices elder care law in N.Y. city. I am going to reach out to him after I move. I already went to the probate court page for NY and looked into the requirements for guardianship. I am not sure I need conservatorship because my brother only has his disability money as assets and I am already his Representative Payee for his SSDI.
The next thing I will look into is Skilled Nursing facilities that have behavior health. I am moving on April 20, to another house in the same town. After I am settled, I will start this process.
You have given me hope that there is something I can work towards to get my brother the help and care that he needs. I cannot express my gratitude to you. You are a vey special person who has had such challenges with your family members.
One question I have for you. what was your brother’s living situation for the 30+ years before you got involved in conservatorship/guardianship? What did your parents do with him for all those years he was sick?

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I have always been involved even when my parents were in denial. I took care of him even when he was homeless. After several psych admissions, my parents finally accepted his disease process. It took me 5 years of repeating the same sentence over and over again. “He has a disease called schizophrenia!”
My bother was psychotic, my father had a massive stroke, my youngest brother committed suicide, my sister developed a pituitary tumor, and my mother had a nervous breakdown (understandable) all in my mid twenties. The loss was devastating and unbearable. We had no choice but to function through it.

My parents own real estate including duplexes. My brother lived in one of them about a mile from my parents house. However, like your brother there was daily interaction = food, meds, money, and car. My parents financially supported him his entire life before he was placed in a Medicaid skilled nursing facility (SNF).

In 2010, my brother began to deteriorate further (before my father’s death). He was not taking his meds and losing weight because he was not eating. He was just drinking Diet Pepsi and chewing tobacco. His environment was not clean. He was not able to organize or throw things away. I obtained a court order for mandated outpatient treatment. The police picked him up and took him to the county mental health department where he was assessed by a psychiatrist. He was ordered to have weekly mental health visits. My parents the allowed him to move back into their house with them. He had the basement all to himself. My parents were older and he was able to help them too. My father was barely functional (he had a massive stroke in 1990 leaving him disabled) for almost 25 years before he died. My mom sewed quilts and played games on her i-pad most of the day. The interaction between all three of them was SAD. The situation was not ideal. I would check in on them as much as possible. My mom had a weekly maid service but I would deep clean the basement once a month. This is when I would find his meds in multiple places. My mom would give him his medication (pill dispensing device with reminder alarm) and she swore he would swallow the pill. When my mom would get sick, we would get a home health aide to come to the house for several hours per day. My sister also would help but she has a husband and 2 children. Things became worse for all of them.

In 2016, my father died and my brother spiraled out of control. I have an apartment over the garage just for him but he refused to stay with me at that time. The furnace and water heater are inside the unit are too loud for him. Hypersensitive to noise and stimulation. He lasted 5 days then he went back to my mom’s house. She was very sick at that time and he would not come home with me. During the 5 days he was with me, I observed his behavior and knew he needed inpatient intervention. This is when I called the police/EMS and had him placed on a mental health hold. He was in the hospital for 2 weeks because his sodium was so low (confusion = psychogenic polydipsia = drinking too much fluid). He also had not been taking his medication consistently and was delusional. Antipsychotic medication adherence has always been an intermittent issue.

During this hospitalization, we finally received help from a inpatient social worker. After 35 years, someone truly cared enough and wanted to help our family. The ER social worker who was aware of my parents and my brother never intervened even when I asked. We were frequently in the ER. The inpatient social worker found the best situation for all of us! She was a blessing!

At that time, I became his medical proxy, obtained a court order for mandatory treatment, started the guardianship and conservatorship process, and the social worker found him placement in a Medicaid skilled nursing facility (SNF) for stabilization. My brother was already tied into the county mental health services and had a case manager which also helped in placing him. A battery of tests were performed to assess him on admission (MMSE, PASAR, ADL’s, etc…,) which identified numerous deficits. Even after he was stabilized (which took 1.5 years), I had him retested and it was determined he is unable to live in the community alone even with professional support services. His only other option is to live next door to me. He choses to stay in the skilled nursing facility and states he does not want to be a burden to anyone anymore. I tried to find a recovery program to reintegrate him back into the community with my support but the only one that exists in Colorado would not accept him. I also tried to find him a group home and assisted living but no one would accept him. I would prefer that he live in the least restrictive environment but the discrimination is explicit!

My mother was diagnosed with autoimmune ITP (blood disorder), pulmonary hypertension, and Hodgkin’s lymphoma soon after my father’s death. In 2017, she had a pulmonary embolism and 3 other blood clots (DVTs) all at the same time and lived! I still do not know why she did not die. We moved her across the street from my sister and 2 blocks away from me. She has had home health services and is now enrolled in hospice. She broke her hip within the last year. She refuses to go to a nursing home so we take turns taking care of her daily needs. Just the last few days, she cannot stop crying. The losses continue to make her depressed and anxious.

This might be a consideration for your situation. Our mother’s impending death will definitely cause my brother to deteriorate again (worse that when my father died since he is a mama’s boy), however, this time he will be in a setting that has professionals that will be able to intervene. If not, then I suspect he will have another inpatient psych admission.

I did not have any children due to our genetics. My paternal aunt also had schizophrenia, my youngest brother committed suicide at age 24, my first cousin had multiple sclerosis, and I have a chronic autoimmune disease. BAD GENE POOL! I could not be selfish enough to burden a child with any one of these diseases.

Building resilience has been my lifelong exercise.

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smarti08,
Wow what a life you have led! I have had it good compared to what you have endured since your mid twenties! I guess the reason I was not involved for most of my brother’s life is that I got married and moved to CT. after 5 years of marriage. I was living near my parents for the first 5 years. I was around for my brother initial few hospitalizations when he was in his 20’s. My brother did also barely graduate from college. By the time he graduated we knew something was wrong but could not really pin point it. We had no history of mental illness in our family, therefore that was not ever a thought. He was just acting very different, even strange . He wanted to go to Israel and live in a kibbutz(communal living experience on a farm where everyone has a job) for the summer. Israel does not really have those anymore in the true sense of what they were then. They took Americans for the summer to give them the experience of communal living.
My father had a brother and his mother living there. So he went… He stayed in my grandmother’s apartment for 2 weeks before he was supposed to start at the Kibbutz.
My grandmother had just been placed in a nursing home.
This is where the real trouble began. he had his first psychotic episode in that apartment.
My Uncle picked him up from the airport and settled him in the apartment. At some point a few days later my uncle went there after my brother did not answer the phone. My brother refused to let him in the apartment. My uncle eventually called my dad.
My dad took time off from work, flew to Israel and attempted to bring my brother back to the U.S. He would not go. My father was able to get into the apartment and found my brother had lost a lot of weight, had no food in the apartment, and was just writing lots of notes in a notebook.
Luckily we had an uncle who was a psychiatrist in PA. He told my dad to let my brother got the Kibbutz because something would happen that would lead them to hospitalize him.
Well that happened on the first day when my brother told the director he could not share a room with anyone. The whole point of a Kibbutz is communal living! When the director explained that this was not possible, he told her that he was Elijah the prophet and needed his own room. He then took some object from her desk and threw it at her.
She called security , they handcuffed him subdued him and sent him to a psych hospital.
He was in the hospital for 3 weeks before they could stabilize him enough to get on a plane with my dad.
Once he got home, after a week or so my uncle devised a plan to get him into a hospital .
We had a family brunch, my uncle called the police and told them my brother was dangerous. The police picked him up and took him to the hospital. That is where it began.
For the first few years he was good. Taking his meds, living with my parents, then eventually getting a job, and living in his own apartment. Then I moved to CT. had 2 kids and led a nice life. My brother’s life got worse but since I was not living there, my parents dealt with it all. It was mainly my dad that did everything.
I never really though twice about having children as far as the possibility of schizophrenia being passed down to them. I only started thinking about it when they were in their teens.
So far my daughter who is 27 is fine. My son is 23 and he is fine but I know that he is still at the age when things can change. I guess my daughter is also. I am now secretly paying extra attention to both of them for any signs. But especially paying attention to my son. So far I do not see anything to worry about. It seems like this disease afflicts men at a much higher rate than women although in textbooks it claims that it is equally distributed amongst men and women.
I am curious about your aunt that had schizophrenia. How long did she live and what was her life like? I am so saddened to hear about your younger brother’s suicide! Did he suffer from depression?
I want you to help guide me. it seems like my first priority should be to obtain guardianship. Then what comes next? Also , did your brother have a psychiatrist? Who was prescribing his meds for most of his life? How did you get him to even go to see a psychiatrist before he was hospitalized the last time?
I often wonder why my brother cannot seem to put anything in a garbage can or even take out his own garbage? Why is he fine living in filth? I always thought my dad enabled him by taking care of everything for him . At one point earlier in my brother’s life ( in his
late 20’s) After another hospitalization, he was approved for a group home. He refused to go and my dad never forced the issue. My dad was a soft person and always tried to do everything for my brother. I felt like my brother took advantage of that because he could.
I guess at this point I understand schizophrenia a lot more. I have read 3 books since my dad died. You are telling me that the illness is the reason for the uncleanliness .The lack of self awareness to be able to think about throwing things in the garbage or doing something about a clogged toilet.
Again I thank you so much for your help. You have really changed my way of thinking and have given me hope that I can really do something about this terrible situation. I hope that we can continue to be in touch!

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What wonderful helpful comments! Just a note…not every person with SZ lacks insight into their own illness, but the statistic that I have seen is that it is about 50%. It certainly makes helping a person very difficult!

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Obtain both guardianship and conservatorship. Obtain a court order for mandatory outpatient psychiatric treatment. See the info I previously sent about New York. Also, have the elder lawyer explain and perhaps even initiate a special needs trust for your brother (inheritance from your parents). Make sure when you meet with him/her you discuss all 4. They should be able to guide you. Remember, law is based on the local jurisdiction where he lives or will live.
Your mother is elderly and is perhaps not the best person to manage his affairs. Would it be better if your brother lives near you in the same county and state?

My aunt did not manifest her schizophrenia until her 40’s. My uncle had an affair and divorced her which was her trigger. She did seem a bit strange to her family prior to her trigger. She had 4 female children that were all out of the house by then. A blessing for them. She moved back to CO and lived off her inheritance from my grandmother’s estate. She lived alone and had no contact with anyone in her or our family. Her delusions made her lock everything up in her house like doors, cabinets, refrigerator, etc…,. She also had delusions that if she interacted with anyone in her family the devil would hurt them. Hence, the no contact. Her daughters never took steps to get her adequate treatment. She developed breast cancer and eventually died in 2014. Only 15 people were at her funeral service - all relatives. Again, very sad.

My youngest brother was being treated for depression. He was taking Paxil before it had the BLACK BOX WARNING about abruptly stopping the
medication. Paxil can cause suicidal ideation when stopped abruptly. The medication was newer at that time and the evidence for the black box warning especially in adolescents and young adults had not been issued yet. So, he became part of the statistics. Again, very sad.

My brother did have a psychiatrist through the county mental health services where he lived. The psychiatrist was not in private practice but worked for the county subsidized psychiatric services. All his treatment was a result of court orders for mandatory outpatient psychiatric treatment. A private psychiatrist was never an option since he ws on Medicaid. Before he had Medicaid a private psychiatrist saw him but he did nothing because he had no money. The psychiatrist should have referred him to the state psychiatric hospital instead of he discharging him to the street. It took a total of 8 years to get him properly diagnosed and treated which is too long. Early identification, diagnosis, and treatment are a must.

The ability to organize, clean, maintain hygiene, and other activities of daily living are impaired in individuals with schizophrenia. Executive function and cognitive impairments are also a manifestation of the disease. This is why numerous assessments need to be performed to evaluate your brother’s individual deficits. See last post that has some of the tests listed. I think my brother was evaluated with more than 10 different assessment tools. The psych professionals know which ones are most pertinent.

I used to think perhaps we enabled my brother but NOT anymore. We fill in the gaps where he “was and is unable to function” because of a disease process. He is a victim of a serious mental illness. I pray someday there will be a cure! This situation is very similar to children who have developmental disabilities like Down’s syndrome when they become adults.

When may nephew was about 5 years old, he ask me why I help my brother so much. A very perceptive child. I told him because I love him so much! I also hope and pray my nephews never manifest the disease.

Lastly, the writings and all the paper. My brother writes all the time. Thousands of pieces of paper. I will occasionally read some of them because they are an assessment tool. The more the writing is fragmented, non-sensical, and perhaps, even demonstrates a delusional theme, the more one can suspect that he may be non-compliant with his antipsychotic medication regimen. His writing and math skills improve when he adheres to his antipsychotic medication. These writing can be evidence for the court order for mandatory outpatient or inpatient treatment.

When a patient is admitted for an inpatient psych hospitalization, part of the work-up is based on observation of behaviors in addition to a formal psychiatric evaluation. Document what you observe, discuss, and experience when you share time with your brother so you can refer back to it as needed for his treatment plan.

As your daughter gains more experience with serious mental illness in medical school, residencies, and her professional practice, she may be able to assist you with some of this. I am a family nurse practitioner who also has some paralegal associate level education which helps the situation. I took paralegal classes at a community college so I could understand and maneuver the legal process for my brother. Of course, I do rely on the experts - medical/mental health professionals and attorneys. I have retained legal counsel from a lawyer that has expertise in both elder law and with clients that have special needs (disability - mental or physical).

I hope your move went well and your future meeting with the attorney r/t your brother in NY is successful.

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Thank you for sharing your story.

I especially second the recommendation to document your observations and record of treatments, hospitalizations, etc. As you state, it can be useful for the treatment plan, and also if a loved one ends up in a new facility or with a new doctor.

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Hi Smarti08,
I just moved a week ago and am still trying to unpack all our stuff. I appreciate all the details and important information you have shared with me. I visited my mom one the last 2 days. I had a chance to speak with the aide a little more in depth about my brother and his meds. She told me that she finds his pills on the floor beneath the table that he eats his meals at. She said she finds them about 3 times per week. Apparently this has been going on for at least 4 months now. I was angry because she never mentioned this to me before. She is not from the U.S. so she often does not realize she needs to tell me important things like this. I usually have to ask her questions to get information. So you were right! He has clearly over many years learned how to cheek his meds. I saw my brother yesterday while at my moms house. I watched him take the medication, then drink and then eat. I heard him chewing the meds. When he eats right away he does swallow the pills. The aid says sometimes he is not in a good mood and if she sees the pill on the floor while he is there she asks him to take it but he puts his fingers in his ears and then leaves the house. That is a habit he has had for a long time. When you tell him something he does not want to hear he puts his fingers in his ears and then leaves. So it is difficult to talk with him about issues that he does not want to talk about. This is basically every topic that concerns him or his apartment or his behavior. He is good at shutting the conversation down immediately.
I have spoken to my cousin ( the internist that prescribes his meds) I told him that he needs to document everything that the aide tells him and also when he does see him in person. My cousin did see him in person in January when he came to my moms house, and also this April when he was at my moms house again. I am going to start having the aide take pictures of his apartment.
Especially when his toilet is full of poop. Last month the toilet was so bad that the aide was unable to do anything about it. So I had to call the plumber… The aide tells me his poops are very large. She thinks that if he does flush the toilet then the poops are too big to go down without a plunger. Of course he does not have the ability to use a plunger. So he continues to use the toilet!

It is so disgusting! Usually the aide just finds a few days worth of poop in the toilet and scoops it out and puts it in a garbage bag and throws it outside in the garbage cans. Can you imagine she does this on a weekly basis! This is why sh is so valuable to me. WHO ELSE WOULD DO THAT?
She essentially takes care of my mom and my brother. So it is priceless for me.
Yesterday I asked him if he is scared of flushing the toilet. He said no. I asked him if the toilet flusher bothered him. He said no. I asked him why he does not flush the toilet. He did not answer.
The aide says that he flushes when he pees at my moms house but not always when he poops.
Most times even when he flushes after pooping it does not go down. But she also says sometimes he just does not flush. How can you explain this? He knows how to flush a toilet. How does it not bother him to have a toilet full of poop that smells up the whole apartment?
If he was left alone to fend for himself in that apartment his toilet would be so full of poop it would eventually fall on the floor and he would never clean it up.
This was not happening when my dad first died. I had to call the plumber once every 2-3 months, but NOT on a weekly basis. I would be bankrupt by now if the aide did not take care of his toilet every week. You think this is a result of deterioration of the brain OR pure manipulation?
Should I be more forceful with him about this issue? This is my BIGGEST issue with him.
I will start the process of obtaining conservatorship and guardianship. Right now is a busy time for me. Not just because of my move, but tomorrow I have to move my daughter out of her apartment
In Manhattan. She is done with her last rotation for medical school and her lease is up. She will move home for 6 weeks until she starts her residency in Boston.
One thing that really is so surprising to me is that my brother’s memory of sort term things and log term things is still very sharp! He repeats everything my mom tells him about me and my family.
He is accurately up to date on everything about us. He also remembers things from our childhood that I have long forgotten. That part of his brain is fully intact. Do you find this to be the case with your brother also? My brother does not write anymore. The writing that I was talking about was when he had his first psychic break when he was 22. He ha not used a pen in 20 years! He was also a musician and had a band that he played with in bars. He has not picked up his guitar in 15 years. He used to listen to music on a CD player. He does not listen to music any more.
When I come, I put music on for him on my phon and he really enjoys it. We sing together. He loves music and sings when he hears it. But he does not even use his CDS any longer.
He never stays long when I am there. He does often stay much longer when it is just my mom and the aide. I wonder about this. Is he uncomfortable around me because sometimes I probe him?
Any insight you have would be appreciated.

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@smarti08 @j9sit You have both been through so much, you are very wise, and very selfless. You have learned so much and you are truly an example of resilience!! I hope you have found a way to also take care of yourself and have a life of your own, even if (like most of us) it is different from what you probably thought it would be at one time.

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@hope4us
Thank you for the compliment. I do not feel as selfless as you might think I am. I am taking care of myself, but I have a fear of the future when my mom is no longer on this earth and my brother is really alone in another state. I know I have to do something now to prepare myself and my brother for a more dire situation.

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J9sit,

Just reaching out to see how things are going r/t your interventions on behalf of your brother. This week I was very happy to be able to take my brother for a haircut, lunch, and a visit to Office Max. He thinks he wants a computer. I would need to work with him on that. It was great to see him for more than 30 minutes. Covid has been very rough on everyone in long term care r/t visits from family and friends.

My brother does listen to the radio but he does not listen to his CD’s either. Not sure why. Perhaps, it is just easier to turn on the radio versus have to decide which CD to listen too and also to out it in the player.

My brother does have problems remembering the past. He seems to be fine on the short term memory issues. When I do attempt to jog his memory about when we were kids, most of the time he has forgotten the event.

My brother has a 20 to 30 minute threshold for interpersonal interaction with most individuals. He will retreat in another room away from people. After he is isolated for some time he will re-engages into the situation if family is still around. He can only handle intermittent short duration interactions. I meet him where he is at. This took time for me to learn. I also have learned that I need to prepare him weeks or even months before any change. I discuss the proposed change with him and use anticipatory guidance to help him move through the process. For example, when he comes home for a few days for a visit we plan not out weeks in advance. He usually does not act quickly, he must have time to mentally prepare, and he even may postpone. I let him dictate the terms of what he does have control over which is honestly very little. His mental illness/disability places more limitations on him than he wants to admit.

He has impairments but he is kind, loving, and tries his best most of the time. I try never to get upset with him. When I do get upset, I direct my anger towards the disease. I guess since I have autoimmune disease and my immune system does whatever it wants whenever it wants, I realize that although people/patients want to control their health sometimes the disease process does not cooperate. My physiological state is not always in sync with my mind. Mind over matter is not exactly a gracious statement.

I hope you have made progress over past month. Wishing you the best!

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Hi Smarti08,
I have contacted an attorney that I am speaking to in 2 weeks regarding guardianship. His para legal said this process is very long an expensive ($10,000 - $15,000 in Ny State) Is this what you experienced in CO.? That seems like a lo of money. I am just paying for an initial consult right now.
My brother is always changing. He was speaking o me for about 10 minutes when I would visit my mom. Now he asks me the same 4 questions and then eats quickly and leaves my moms house.

WHAT SHOULD OR CAN I DO ABOUT HIM NEVER FLUSHING THE TOILET?? This is my main problem that I have no answer to! When you try to talk with him about this he puts his fingers in his ears, and pretends not to listen. Could his voice be telling him not to flush?
Would you mind haring your private e-mail with me? I feel like this would be a more direct way to communicate with you. That is of course if you do not mind. I will give you my email address first if you want.
let me know.

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You seem to have intuitively hit on something that’s true to varying degrees for people in recovery. I like to believe you can build up a tolerance to social and other overstimulating situations by gradually increasing exposure. CBT can be helpful toward these goals with more structured settings and methods. Same with environment changes was well.

One thing I’ll mention as caregivers process the gradual reintroduction of “normalcy” to their routines as restrictions for COVID are lifted. Remember that fear of getting too close to strangers and adjustments to new sets of social rules and norms you’ve been going through and the anxieties they caused you? And perhaps eventual acceptance and even comfort they brought you, only to have the rules change yet again and that feeling of lack of trust in letting these adaptations go? Well, that’s a small part of what people under your care go through most days as their symptoms wax and wane. Use and remember these experiences to build empathy.

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