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The Endless Pain for Families

This mother has a son with severe mental illness.
Here is what she has to say about her and her families immeasurable pain.

My Story

       Since 2016, my husband and I have been watching our son self - deteriorate.  In fact, he went from wanting to get help to having no insight into how sick he is .    He has gone from being a well organized, goal oriented young man with goals, and dreams of a career, fatherhood and family with a big heart and soul that anyone would be proud of knowing to someone who has lost motivation, has disorganized thoughts, is paranoid and angry.  

       With the exception of a seasonal part time job last year for 2 months, he has not worked since 2019.   He lived in his car in minus 30 degree weather to plus 30 degree weather.  He drove around with no insurance and currently has a court date because of it.  My son is intelligent, he knows what to say.  It is the insight behind what is said that is not being translated into capacity.

It started with the FBI in his phone, people talking about him and against him and people watching him.  My husband and I have watched our son slowly deteriorate;

  • Lost jobs either because he makes rash decisions to quit or he gets fired

  • Has had thoughts of suicide

  • Forgets what he has done or is in the process of doing

  • His personality has changed

  • Talks to himself or someone, screams and yells in angry tones for hours non stop

  • Marked changes in eating and sleeping patterns - sometimes he does not sleep and does not eat at all to sleeping all the time.  But the majority of times it is a few hours here and a few hours there. He does not eat properly or hardly at all and has lost a large amount of weight. Has gone from wearing $100 shirts and tight clothes to destroyed $100 shirts to clothes falling off.  Wears the same clothes for months, even sleeping in them.

  • Extreme moods -  highs and lows

  • Even when not screaming or yelling, he is mad and has an aggressive look

  • Uses marijuana to self medicate (says it helps him); however, to those looking in, the more he uses the worse his paranoia and moods get, the more his psychosis comes out

  • Excessive anger, hostility and violent behaviour, put holes in my walls, has made knife holes in my leather chairs (totally different from a young man who had the biggest heart and always thoughtful of others before himself)

  • He is irritable

  • He has difficulty paying attention, disorganized thoughts and disorganized communication

  • Does not care about things that were once important

  • Not able to function well at work, school or home (does not pick up, dirty, destructive)

  • At times, his behavior is scary that we fear for his, our and others safety

  • At times, his temper is intimidating, frightening

  • He has stopped caring for his basic hygiene, this from someone who use to go to a hair stylist not a hair dresser - as he used to say

  • Does reckless things that were normally not him

  • Shopping and spending money constantly

  • Makes impulsive purchases

  • Has made frivolous trips that he cannot afford

  • Has driven without insurance

  • Has spent time on the street

  • Has spent time living in his car

  • Lost possessions (has lost more money than I want to think of)

  • Talks about things that are not there or true (the black hole, dragons, space and time, etc)

  • Performs rituals that are irrational often doing things like carrying his hockey stick around (all over), taking an electrical tester and checking plugs (not sure what), taking car cables and checking for electrical currents in the house and outside in the garage and in the yard; has purchased pyramid stones and salt lamps and has been placing them around the house, in particular in his bedroom

  • Has withdrawn from family, friends and is increasingly isolating himself

  • Has financial problems

  • Has legal problems

  • Sets fires in the garage because he has to

  • He tells us we are not his parents, that we are clones, we don’t exist

       Doing each one of these individually may be thought of as normal, that we all do this at one time or another.    That each and everyone of us has had struggles.  However, this is not an every once in awhile occurrence, it is everyday since 2016 and has been getting worse and worse because of an untreated illness. 

This is a young man who was responsible, caring and full of dreams.  This is a young man who from the time he was a child was a gentle sole, friends gravitated to him, gentle and patient with whomever he spoke to, respectful, at the age of 7 jumped in a raging river to save his cousin from drowning, in high school saved his friend from alcohol poisoning, and just a few years ago sat in the ICU with his grandmother because she was ill, these are just a few examples of who he is deep down.

       Dr. Phil’s says that   “Something is normal if it does not interfere with healthy functioning and pursuit of goals.  Abnormal interferes with healthy functioning and pursuit of goals.” 

For years his dream was to get into the mental health field - he started at University of Toronto and wasn’t able to continue.  My son had dreams of going to school, getting a career, family, his own place, etc.   The worse his condition got, the less motivated he was, to a point that he couldn’t think long term.   Last year while he was on medication, he started getting back to these dreams.  He signed up at college and was working towards completing his first semester of the Automotive program.  Unfortunately, before he started, he decided he didn’t need medication and to date is not on medication.  Since December of last year, he has been in a car accident, purchased a vehicle that needed lots of repairs with no money to do them, has been caught driving without insurance, has lost numerous items, and is currently charged under the criminal code.

Since 2016, my husband and I have tried everything we know of.   We have taken him to the family doctor, psychologist, we went to the ER where a Crisis Worker who suggested that my son call the Early Psychosis Program at CAMH (with a 2 year waiting period) overruled the doctor’s recommendation who made a psychiatrist appointment (the appointment had a 2 week waiting period, had to cancel it).    My husband and I have called 911 for mental health assistance on numerous occasions only for the police to ask him a few questions and then asked him to leave the premises.  My husband and I filed a Form 2 only to have the ER doctor say he wasn’t exhibiting enough symptoms in the 5 minutes that it took for him to speak to my son and then released him.   

         On two occasions, my son was formed on Form 1, once because my husband and I called 911 for mental health assistance and the police decided that it was appropriate.  Following a 3-day stay, he was released as soon as the medication kicked in and sent home with a prescription and no other follow up help.   The second time because he was on the street and a concerned citizen called.    This time he was in such bad state of psychosis that he was restrained in the ER for 3 days, his total stay in the hospital was 6 days, then sent home on a plan and with medication, he continued with the medication until he felt he didn’t need it and a mental health nurse who said it was his choice to not stay on the medication. 

         Each time we talk to a psychologist, a psychiatrist, a social worker, the doctor, the police, about the fact that he needs to be held longer and treated.  We get told,  “This is the law” , they can’t do anything.   They also remind us that, if we can’t live like this, then we have to make a decision, “kick him out”.  Really, this is treatment???

According to all these experts, “This is the law”  Rights, consent and capacity; apparently, allows my son whose brain is not fully functioning to decide that he doesn’t need medication.  My son has the right to slowly kill himself, destroy his life and possibly others because he doesn’t think he is sick.   He has the right to not take the medication that will help him get to his goals as a fully functioning citizen of society.  If this was your mother, father, a friend with dementia; would this be happening? 

 

So far, my son has been diagnosed with:

 

  • Severe depression

  • Severe anxiety

  • PTSD

  • ADHD

  • Bi-polar with psychosis

  • Schizophrenia

  • Marijuana induced psychosis

  • Substance abuse

     My son truly believes nothing is wrong with him.  He says we have a problem not him.

As parents, we feel helpless, lost and frustrated that we have to battle the restrictions of the Mental Health Act because our son has the right to believe nothing is wrong with him, that he is not sick.  He has the right to slowly kill himself because he forgets to eat, drink and sleep.  He has managed to say the right words and do the right things to convince doctors and police officers to let him go.  But here is the worst of it, all those professionals that we have seen and talked to, see the issues, see that he is sick, they know that he is very sick, they have said “He is very sick”  but they are bound by the “Law” to let him go untreated.  

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