Any suggestions on how to go on caregiving

It is sooooooo very important, to go on as a caregiver, to give yourself time, love and patience. When my daughter started screaming at her voices all night long, I did everything I could to get my own sleep. Also, I took a college ceramics course, and started gardening in my yard. And I started drinking coffee. Gosh those great foamy cappuccinos from Starbucks!

At the extreme end, I left home overnight or for weekends during the bad years to give myself sanity and space. I had a few girlfriends who would let me come over for overnights (and peace from the nighttime screaming). I had a key to one friendā€™s house so I could just go there. I would just leave with no notice to my daughter. Once I went to Arizona for 5 days to see my sister without telling my daughter.

You can cut down what you do for your loved one bit by bit. And keep caregiving to certain times of day. It is totally personal how you arrange your life, but you MUST give yourself time and money to heal yourself from the constant grief you feel for the life that should have beenā€¦

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I had the same worry. I went to see an estate planning lawyer and he helped me to see (and accept) what is possible and isnā€™t possible as far as what happens after I die. It gave me peace to have all my documents in order. That was part of my self care too, so I could stop the worry.

Watch interview of Dr Chris Palmer by Dr Ken Berry. Costs nothing. Possibly big benefit.

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Mt Apoloā€¦it is on YouTube

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Hi Irene
You story is just like mine.
My son is 33 and I am at my end too.
If you would like to talkā€¦ might help both of us. My cell is 513-477-1091.

Dan

OCD is exhausting for all involved.I didnā€™t know the percentage of people with schizophrenia having OCD as well - how debilitating having both. When my brother gets anxious the OCD escalates. He currently is spending about 10 hours a day on OCD rituals. It is to the point I have to intervene and stop him. He is supposed to be having an assessment to see if he is suitable for a long term program that teaches life skills, symptom management, etc to people with schizophrenia. I live in Canada and treatment of any kind takes forever if at all here. Funding for mental health facilities and treatment was cut years ago and the government relies on family to do the majority of the care. We now have been waiting 6 months for this assessment. Anyone familiar with individuals with schizophrenia will attest they do not cope well with the stress of the unknown. His OCD and paranoia symptoms are off the charts.

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Hi, thanks for the ideas for self care. I know we have to take care of ourselves to take care of them. I am getting better at boundaries, I have noticed if I don t see him for a day or 2, it really doesnā€™t make a huge difference in his behavior and the only way I can cope is to get an occasional break. He is so very needy and demanding. Ugggg

,
I

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Yes, yes and yes! You CAN give yourself the occasional break without (usually) any bad repercussions. I thought it odd that each time I returned my daughter didnā€™t even seem to notice my disappearances, but nothing bad ever happened. And the benefit to my own mental health was huge.

We are a lower middle class family. I never had much money to spend on myself, so getting creative was important. I got her on Obama-care medical insurance since we were below the 2Xs the poverty level income line. That made a difference in her treatment.

We also own our house, so we were able to build a wall in the hallway between her room and the master bedroom to keep the yelling noise down at night so I could sleep again. Funny thing is that wall is still unfinished and still doesnā€™t have a doorknob on it. My daughter closes it at night now instead of me, to keep the noise from our living room TV down to her bedroom. The anti-psychotic makes her sleep 12 hours a day. We are so very very lucky that the Haldol Dec shot was THE medicine for her, as everything changed once she got on it after 3 years of psychosis. She is still on that shot monthly.

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Hi Irene-
Yes a lot of what you say sounds familiar- especially your expressions of heartbreak. I think that sadness has become a constant underlying emotion that follows me throughout my days. My son lives at home with me and yes I do everything for him and yes I worry about how he will function when I am gone.
When I feel short on patience (spending an hour every morning cleaning up after him for example), I remember how far he has come and how much has been taken from him due to this disorder.
My son is medication compliant and stable now, but he still exhibits strange behaviors, and he is isolated and lonely. His clock is reversed and many days he is awake for only 8 hours. He has gained a lot of weight since he has been on Clozapine (probably about 40-50 lbs) and while he used to take long walks when he lived in the city, he now stays in bed a lot of the time even when he is awake (watching videos and listening to music). I worry about his overall health now that he is a smoker and overweight. I heard a psychiatrist say once that one way to tell whether or not a patient is taking his meds is to note his weight!

I keep trying to encourage my sonā€™s interests and help him apply for a part time job, but it is an uphill battle that I donā€™t know how to win. This disorder robs people of so much, including their motivation.
When I feel impatience rising, I remember that this disorder results in irreversible brain damage. Even though my son often does his best, he simply canā€™t get things done. I understand your worry about your sonā€™s reliance on you. I share that worry. I pray that I live a long life!
I think that it helps to develop a plan for after you are gone, as others have mentioned. I have done some planning, but it is incomplete.
If you do find a good therapist, that would be great. I donā€™t currently have one, but it helps me to take long walks and long baths when I need to be alone.
It was a shock to me when my sonā€™s illness first struck, that with this illness there simply isnā€™t much help out there unless you have very very deep pockets.
It helps me to come here to this forum when I am feeling in need of support. I hope that our loved ones find a way to engage more in the world. I think that feeling useful is a big part of being happy.

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I took care of my son for over 17yrs so I understand where you are coming from. My son would discontinue taking his meds while I care for him. My son didnā€™t function at a very high level either. I was pretty much on my own in caring for him. Family members helped a tiny bit. It takes the patience of practically a saint to care for our grown kids. Remember to give yourself a life as you can be nothing to him if you donā€™t take care of yourself.

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Of all the meds, Abilify tends to have the least amount of side effects. (In that they arenā€™t as debilitating as other meds can be.) All the same Iā€™m sorry you are a sole caretaker and that your son isnā€™t taking meds.

My brother is finally in an assisted living home now and it has been a miracle when it comes to balancing our own life needs and his. The irony of caretaking is that by being ā€œA Caretakerā€ almost everyone gets beaten down. With most conditions people will get better. SZ is an eternal question mark in that regard. We got him enrolled after years of struggling. Perhaps this is something to look into for you?

My parents wanted him to remain part of the family but a variety of life circumstances means they cannot take care of him and neither can the rest of the family. With his housing and AP meds on board he canā€™t harm himself and the facility heā€™s at is very good at giving us updates. (If he needs money for an outing, where they are going, what they are doing/work programs/ volunteering/education to improve their life or social skills.) A huge reason we chose out of home care (we canā€™t afford to pay for private carerā€™s) is that he has so many needs that fall outside a HCA purview. Add to that the risk to other staffs safety, having care staff in a group facility allows everyone to have others watching what is going on.

We socialize more as a family knowing my brother is safe and we go visit him at least once a week. As my parents age, I will not and cannot take care of them alongside my brother. He is MUCH bigger than I am anyhow and has a history of violence off of AP meds. As @hope says caring for yourself is another job all on itā€™s own. Sometimes that means finding ways to delegate responsibility even if it means a mountain of paperwork (for a family member) and counseling trips for yourself on your own time.

Even a few days of respite care might kick in other resources as social workers and staff have a chance to observe what he is like. That is one of MANY different ways that they got my brother to where he is now. I documented everything and my brother basically has a private library in medical and legal records that I keep up to date both in digital and physical for.

For anyone reading, I am Welloverit108 but had to sign in using other credentials as the website was in hijinks about attempting a fresh log-in.

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See if he is eligable for social security disability. That will make it easier on you. Give them a call or go on internet.
My son is on disability due to schizaphrania, gets free medical, prescriptions, therapy, which is covered on medicaid. And monthly SSD .

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Hi mmm61
This is the first step for me in really reaching out and joining a support group for family members. My son was diagnosed 2 years ago. We have gone to the moon and back trying to figure out treatments, doctors, counselors, alternative therapies, additional pharmacological therapies, etc. My son, is a great kid too. I just wanted to say thank you for allowing me to read that others are exhausted. My son, also demands so much attention, yet I donā€™t think that he realizes he demands the attention that he does. He lives at home with us, tries to work as best he can, has hopes, dreams, and aspirations of his own, which we encourage, but at the same time, his executive functioning skills are rather low. I just want to cry. You know? I have 2 younger children, one barely a teenager and the other not yet a teen. I guess, I am just having a pity party for a minute. My son has been having a very rough time of it lately, and, it has gotten to all of us. Today, he had a rough time getting to his counseling appt. and then, of course, because I am with him, had a very easy time unloading all of the world onto me. And, to top it off, I canā€™t even correct him, or change his thinking, but have to love and support him through all of this, and encourage him, which I do do. He says that I am a fake mom, that I am not his real mom, wellā€¦I am and sometimes I just want to yell out that I would love his ā€œrealā€ mom to show up! Itā€™s always amazing how I am the one that is here, always, through the best of everything and the worst. This disease is so debilitating, on so many levels. I feel like my husband and I are holding on to a life raft with only 2 fingers, while an angry sea is working its hardest to drown us both.
Thanks for letting me vent. I am sorry. But it does feel a little comforting to know others are also in the same place. I guess that doesnā€™t sound very good, does it?! Yikes. You know what I mean.

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Hi all,

Itā€™s been so inspiring reading everyoneā€™s situation and has given me more hope. Thank you so much for sharing. My son (23) was diagnosed two years ago. He lives with me. His mother was never involved in his care and moved to another state after his diagnosis, lol. Itā€™s just as well as she was a bad influence on him (drinking, marijuana). I provide all the care for my son who is a really kind and loving person who gets annoyed with me from time to time. Thatā€™s okay, I get annoyed with him but am learning to understand how much this disease robs and how sick he is. Talking about this with you all (who understand) really helps!

My son is relatively low executive functioning and cannot work. I have applied to SSDI for him. Luckily, I work from home which is a gift. As others have mentioned, I have a lot of anxiety about dying and who would take care of him. His older brother might be a candidate someday, but much later in life. When I leave the home, I worry about my son. I donā€™t go overnight and leave my son alone - ever! I guess this is okay but it upsets me bc there are things I would like to do.

My son practices very poor self-care. For example, he wonā€™t remember to take his medicine. So I give him his meds 2x/day. Luckily, heā€™s willing takes his meds. Weā€™re still trying to find the right combination bc his voices are very critical of him which is heart-breaking to me. The voices just beat him down everyday and heā€™s suffering. Weā€™re still figuring out his meds. My son and I talk about what his voices are saying and I have ā€œtalked through himā€ to the voices. Itā€™s obviously a very odd thing to do. However, it brings him a lot of relief and makes him feel better. He believes that he can hear other peopleā€™s thoughts and that he is talking with real people around the world. He tells me what the voices say when theyā€™re critical of him, and I talk to the voices and I criticize them back (to defend my son). Iā€™ve told them that if they want me to talk with them, they have to be respectful to my son and me. My son seems to like this which is all that matters.

I have discovered that my son is very impressionable. He seems to mimic the lifestyle choices of people around him. So I try to set a good example of eating well, working out, not smoking, and not drinking. It isnā€™t easy, but he follows my lead sometimes and this causes less conflict. I didnā€™t realize how poor his dental care was (he had several teeth with damaged enamel), so we started brushing our teeth together. He still fights me on it, but thatā€™s okay.

I have come to the conclusion that itā€™s my purpose in life to provide as good of quality of life to him as possible. I think this is the only way I can make this workā€¦by thinking this way. I have likely knowingly brainwashed myself, but he would be on the street (being beat up) or in jail if I didnā€™t. Sometimes, this really upsets me bc of the anxiety and stress involved in caring for him. And I also think about MY life and things I want to do that I will likely never get to do. I donā€™t think thereā€™s a resolution for this.

I try to focus on the positive like if he wasnā€™t living with me, Iā€™d maybe live alone and be more lonely. Iā€™d like to have a girlfriend, but I donā€™t know how I can make that work with him not really being able to be alone overnight. A few weeks ago, he almost blew up the house! He was cooking eggs (I taught him) and he left the gas burner on w/o ignition. I smelled gas from my room and came running. He did not understand that the house can blow up. I turned on the exhaust fan and opened windows. Iā€™m not sure heā€™ll remember to check for a flame in the future so I worry.

This forum has really helped! In a way, I have grown to see him more like the little boy that I raised. It really helps that heā€™s sweet most of the time. I really struggled with the guilt of treating him like he was much younger bc heā€™s 22. Who am I to limit and control him? But I came to the realization that I have to do this for his safety and to provide him the best quality of life possible with his condition.

I have taught him how to do things like clean the Roomba. So he has chores which I have to regularly remind him to do bc he forgets. He likes youtube and videogames which he spends all day doing (besides sleeping for 12 hours bc meds). This brings him joy and Iā€™m really glad for it. I like videogames too and we play together sometimes. I try to keep my homeā€™s stress level as low as possible bc it can trigger him.

For me, there doesnā€™t seem to be any great solutions for my sonā€™s schizophrenia. I have a good amount of anxiety/worry and it can be really stressful. When I see my son do/say odd things and practice zero self-care, it reminds me how sick he really is. This helps me to get less frustrated bc I remember that Iā€™m not dealing with a full-functioning adult. But there are good days and bad days.

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I hate to pull the histrionics here. (Not that I would say what I am about to say is hysterical) but I would plan your sonā€™s future based on several worst case scenarios, if youā€™ll here me out.

You cannot depend on your other son to be his caretaker. He may be kind and he might be willing, but no one can predict the future. Whether or not he actually develops a close relationship with your other son will deeply impact how well he is taken care of AND despite the fact that they may have a strong relationship, stress can and does make SZ symptoms worse. Again, thinking worst case scenario, even though you havenā€™t seen or felt these levels of issues with him he may end up in hospital after you die. They symptoms of SZ are magnified in stressful situations and so to protect both of them and make the process as seemless as possible it would behoove you to set up a few things legally, with your sonā€™s consent while involving your other child.

If he or your son has never experienced what putting him into hospital entails (information release documents, power of attorney, HIPPA laws, advanced directives, and estate planning ect.) These are all decisions and powers you take care of for now but someone must be appointed to later, in the event of your eventual death. Again, whether or not your son actually wants to take care of his brother is hit or miss.

I say this as someone who is the primary caretaker for my brother, I have and do miss major parts of my life and my lifeā€™s development because of him. Itā€™s not a nice thing to admit but I cannot and could not hold a relationship and his mental health issues while trying to be considerate and kind to another partner. Itā€™s not just that other people have expectations of your time but that realistically, good relationships take time that caretaking without respite or help does not allow you to have. Ditto to moving out without having a college degree to my name.

Iā€™ve slowly been chipping away at one for ages but realistically I have nothing to say Iā€™ve gained from caretaking other than an above average understanding of legal procedures related to mental health and more gray hairs than I wanted to have at my age. Getting into therapy and focusing on myself and my interests for once has been liberating but it also means I am well aware of life choices I have given up (having kids, buying a large house, most likely getting married to anyone who wants kids.)

Not to say that this is always the case but, there is a certain amount of frigidity to people who vehemently not want kids that also means they donā€™t and wonā€™t interact well with my brother. If I were to analyze the choice, itā€™s because they value freedom more than interpersonal development when it comes to something that is ā€œlesserā€ than they are. I know this is my own generalizations but I have had to develop something of sixth sense for first impressions when dealing with my brother and other people. Stereotyping is not a good thing, but again, parts of my protective instincts toward my brother even though we are not close, also means I donā€™t have the energy to fight another personā€™s sense of independence or need for care while attempting to care for my brother.

I care about my brother but the familial closeness we used to feel is largely blocked and been winnowed away thanks to his delusions. It is incredibly lonely for him in a way I cannot imagine and in some ways is like grieving a dead relative. The brother I grew up with is not the one I have now. Even then, his personal habits and other oddities are things I find more tolerable to accept at arms length than to mire myself down in his world. Thus, the difference I believe between empathy and compassion. Seeing his situation from afar gives me better mental resources and resilience to keep taking care of him.

How and why I ended up with the job is that my other siblings have kids. I am the youngest of the bunch and came home from college before the rest of them (as they had family medical problems of their own which meant they absolutely could not take care of my brother.) Our final resolution as a family has been that we will pay whatever fees are necessary to keep him with SSRI and SSDI benefits in an assisted living home. My parents have redirected the estate and some of their remaining retirement monies to my brother.

He hasnā€™t worked since he was a High Schooler and has never held down any form of self-employment either. In his worst states, he can and does react violently toward me and other family members so the risks to benefits of us performing direct care are essentially nil. He has hurt people badly while in psychosis and realize the risk and guilt he would feel about those actions (or that is to say, his lack of guilt because he will blame his psychosis, rightly and wrongly) means itā€™s yet another thing which makes our relationship strained. I know itā€™s not his fault, and yet I cannot risk killing myself just to protect my brother.

All of this being said, simply put, try and make sure your kids have a relationship. If not, plan whatever contingencies you need with a social worker and the local DSHS and police/ outreach team to get his affairs organized before you die. Who will pay for his medical care? Who is going to take him? Will or does your son have the mental and physical fortitude to care for his brother? Does he have career and life goals which are incompatible with caretaking? Does his job entail that caretaking would make BOTH of them essentially unemployable and therefore destitute? If for some reason your son cannot take care of his brother, Ex: He dies prematurely, gets severely injured, suffers a health condition that means he doesnā€™t have the physical or mental capacity to care for him, what will you do? What if he just doesnā€™t want to take care of him? period. This isnā€™t a nice list of possibilities to think about but it does happen. The likelihood of your son suffering abuse from his brother through apathy and bitterness, as cruel of an assumption as it is for me to make, may be a possibility otherwise. I do not think your other son feels this way or would act in this way but you really have to distance yourself as a parent to consider what he, and independent person, would or will feel about caretaking. It is an encroachment of responsibilities and routine changes that may not suite your mentally ill son as well, a sad reality to contend with.

To be oblique without being oblique, my siblings have children with severe health conditions unrelated to MI. What that means is that their children have severe health concerns that put them in the hospital several times a year minimum. By default, they cannot go on caretaking for their children and my brother. By default, I cannot continue to take care of my brother in any meaningful way until I have my credentials and a guarantee of income. It will be expensive to care for my brother as he ages even though many of his needs will be looked after by SSI and SSD and the equivalent of a disability pension account managed by myself and another trusted friend who is also an accountant and friends with another lawyer with experience as a guardian ad litem.

Sorry for the novel. All the best.

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Hi,
Please donā€™t beat yourself up for feeling overwhelmed. This disease makes us all want to cry and sometimes scream. A bomb has gone off in the middle of your life - and in the middle of your family. Self-care starts with self-compassion. Recognize that you are stronger than you know. Give yourself a pat on the back for all the advocacy and caregiving you are doing. I guess this disease also shows us what it means to find the inner resources to keep fighting for our loved ones, to accept that they have a chronic disease, to unconditionally love, to live in the present, and to be present for another. When I felt hopeless, I sometimes used a strategy of looking back at my daughterā€™s worst times and seeing the improvements she had made. Even if they were tiny improvements, it helped. I still do it. If someone had told me 10 years ago that she would be where she is now, I would have thought that they lived in another reality. Remember to acknowledge, at least to yourself, how hard your son is working to get some kind of normalcy back too. It has to be traumatic to become psychotic and have your life fall apart.

Have you looked into community supports for your son like a Peer Specialist? My daughter had one for quite awhile. She would come and take my daughter out for an hour and at least give me a little break. There may also be case managers who can help you find services to support you and your son and your family - the Department of Mental Health or sometimes a private non-profit may provide support. Another thought is for you and your husband to take turns getting a real break. You go away for a weekend (or longer) and he covers, then he goes away and you cover. I was fortunate to have some of those breaks - it helps enormously. Also - do you have a friend or family member you can be really honest with who will support you and be there to listen whenever you need it? Therapy for yourself is also very helpful. Caregivers need support.

Hang in there. And donā€™t hesitate to bring your troubles to this community.

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So true, and that is why ALL caregivers should remember to get in whatever moments they can to care for themselves too. All the decisions, worries, sleeplessness etc. that goes with caring for someone with schizophrenia. And on top of that, the lack of understanding from society and family members at exactly how hard it is to caregive to someone with severe mental illness.

Welcome to @TSpin and @Galaga ! This site and its wonderful members can provide you with much insight that will be valuable as you navigate your future: moral support from those who KNOW what you are going through. Come back often and browse and read all threads you feel might help you.

@mmm61, so glad to see your post and I understand how you feel about being 10 years into the journey and seeing all the good changes in your daughter! I so do remember the turmoil that was my life 5-6 years ago. I would NEVER have believed then that my current life and my daughters new stability would have occurred the way it has worked out. Those small daily wins back then didnā€™t seem much at the time, but they added up! I can only hope that everyone in crisis right now has hope. Hope is so important, that and not giving up on their loved ones, but using appropriate ways to cope.

@katydid5088_bert your point about trying to make sure your planning for the future is done as best as you can gives soooooooo much relief! I recently went to see the estate lawyer I saw 4 years ago to make sure things are still set up in the best shape I can do, and he gave me good advice again. No, things wonā€™t be perfect after I pass, but at least care for my daughter will continue. It settled my soul to accept what I CAN do, and put out of my mind any feelings of inadequacy about what I CANā€™T do.

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Hi Nowwhat, After reading your post I was thinking how much of our own lives are given to our ill sons care. It is really the only choice when other family members don t want to be involved for various reasons. It is overwhelming and depressing when we see other young men their age leading full lives. I helped my son clean his garbage all over his place today and took him to store and vape shop etc. I am lucky I don t live with him, as he is not always med compliant and can make me scared sometimes with his unstable mood swings and delusions. He lives a few blocks from me so I have it convenient to help him constantly. I find as he gets older he is getting lazier about doing any chores and asks me to help him with picking up food wrappers and garbage he throws all over floors and furniture in his place. I worry about his future, but I know I can t control much about it. I have made some planning but who knows, I won t be around to see it. I try to keep hopeful and take self care by doing yoga and meeting friends here and there and gardening. I hope you have a good week and we have to remember that we would feel worse if we were not taking care of our sick grown child and they were homeless or in jail! I have been setting more boundaries lately and not taking his constant calls as much. My son has no friends and isolates when he is not with me. A very sad illness, but we need to maintain a life for ourselves by doing things that don t have them as the focus. Have a good week and try to keep hope, it could always be worse, and it is good to know our sons are safe. My kind thoughts and prayers are sent your way.

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Hi Galahad, You are a fantastic dad to care for you ill son so well and dedicate so much of your life to him. I hope he starts to show improvement and you can have more time to live your own life. It is an exausting, draining job to be a primary care giver for someone with SZ. I have learned over my decade of caring for my son that I need to take breaks for myself. In the beginning I didn t get this and dedicated so many hours to my son and took all of his many phone calls and spent so much time trying to help him and talk with him. I was his best friend therapist, chauffeur, and teacher for cooking and the list goes on and on. Unfortunately, my son never any got better and even lazier and got more reliant on me, which is very suffocating. I am definitely burnt out from it and now take more time for myself. I worry constantly about him, but I take breaks and that is so needed. My son is now 28, and he has gained over 130 lbs since the beginning of this mess, and he has trouble even walking far. . He was a fit young man in the beginning. I need to keep up some semblance of a life for myself because all my time and energy has not cured him. Good Luck and remember to you are entitled to a life to along with caring for you son. Take time for some fun things for you. It will benefit everyone in your family.

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Hi, welcome to the forum. It is a horrible frustrating illness that drains and exhausts everyone in the family. My son had said many times that I am a fake mom. You kinda get used to all this crazy talk, unfortunately. You are doing everything you can. You are a great mom, which is hard to be with what you are going thru. Hope fully he will find a better med combo and things will calm down. Stay strong and don t give up hope.

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