My daily anguish, a huge part of my grief, a huge loss of a beautiful person who means the world to me and I am still hoping I might have come back when ready
I cannot bare to think that he might face worse.
How could I send this to anyone.
Hello
My experience with my family member is over a long period where I was aware that varying behaviour needed to be understood and started a long journey seeking out further knowledge from professionals. I sensed that he possibly was “elsewhere” from a young age of 4. I was not familiar with the term dissociation then.
We visited every profession possible and always slipped under the radar. He knew that he was being assessed and modelled outstanding behaviour. This always astounded me as to why the so called experts did not pick up on this. I used to try and reason with them about this; only to receive indifference.
Explains to me so much. This test was performed when he was 10 and there was supposed to have been ongoing reports between the school and psychologist.
You guessed it the school did not bother. I asked about this to be told that they did not have the time to continually write reports to specialists as this would take away valuable learning time for all of the students.
Signs of hostility started to show up more between the ages of 12 and 13. He and his father had a volatile relationship which did not help any of us.
I am telling you about all of this as this backs up why it has taken him so long to start oral medication.
I feel for you as I have been dealing with this illness with my family member for somewhere between 25-30 years not diagnosed properly until second detainment. This was followed by a community treatment order issued where he was allotted a useless case worker who threatened to have him detained again. She caused so much harm paving the way for a future on the run lifestyle. As a result so he fled the state and then the long journey of him missing began.
Fast forward a few years, unusual behaviour increased; mistrust; delusions, bizarre statements. Episodes of what we were later were psychosis. Experienced from many phone calls. This resulting in no help. Missing person reports coming back to us as once located and checked. They were told that he was having a holiday from his parents. There would be a truth in this for him. He knew that his dad would argue and I would attempt to seek help for him.
Second detainment ended badly once discharged on a community treatment order where case worker was deplorable.
Fled the state and was missing. I have lost count now for how many years.
Homeless for long periods of time in and out of homeless shelters.
Finally provided with emergency housing accommodation long term which was broken into so many times, trashed and his possessions stolen.
He told me many times about hearing screaming from other tenants. Others hanging around outside his door.
There would be some truth and some delusion possibly who am I to question.
The housing situation divulged to me by a very competent mental health triage in that particular state who talked about him respectfully.
Then too many visits from mental health, break ins and theft became too threatening. He fled still paying rent ongoing.
State to state homeless in and out of detainment.
Phone calls with strong delusions and psychosis.
I still listened to him letting him know that I would always be here for him.
I once told him when he was very angry and on the phone that no matter I would always be his mum and always love him. Noone could take that away from him.
Fleeting silence, no words in response then back into delusions.
I know that he is still there. He needs human interractions…he needs someone to listen to him to know that someone is listening.
He needs to be reminded how valued and loved he is.
No long term medication; only intermittent involuntary injections during various detainments. Hence no therapy; no regular gp visits; no ongoing medical support.
No point in referring someone who does not believe that they are unwell.
The last detainment the longest to date occurring in home state. I was told by psychiatrist there that he was very unwell and showed strong signs of long term untreated schizophrenia. There would be some permanent damage. Some deeply inbedded delusions would remain with him for the rest of his life.
Medication did not reduce intensity of delusions as they thought. Doubled dosage and improvement started to appear.
Tested his IQ, came back very high range 147. Psychiatrist told me that this strongly supports him not acknowledging the illness. The intelligence pushing through the illness thereby persisting in educating himself further and looking after his health with diet and fitness level.
The illness is evident , viewed by him at a totally different level; a higher level of thinking and analysing that the average person.
I checked in on him daily for progress at the same time respecting his privacy whilst he was there..
I strongly maintained that giving him an involuntary injection would only cause him to flee which would not be the best outcome for him starting on a medical programme to improve the level of health so that he had an opportunity for a better quality of life. Hopefully a more settled one. I also sought out appointments for housing as he was at a high risk of homelessness. He needs to be independent and live on his own where he can learn to be him. He wanted to return to formal study which he had restarted about three years ago.
He enrolled in his course of choice certificate 1V and received formal acceptance of a place this term. I told him how very proud of him I was as he had struggled far too long and his life had been so hard. He was courageous; determined and very intelligent.
For the first time in possibly 15 years I was able to take him out for lunch. Have conversations brief albeit. I was told to stop being nosey and asking too many questions. How are you feeling? General non intrusive questions. So questions not allowed. Again I understand this reaction as that is what he is used to from mental health triages, consulting registrars, nurses, psychiatrists, his dad also.
He still does not acknowledge the diagnosis of schizophrenia earlier on diagnosed as paranoid schizophrenia.
I have never mentioned any diagnosis to him. He has asked me a couple of times, when I have noticed that his anxiety is very high, “Do I think that he is crazy?”
My answer has been so I do not think that you are crazy.
“Are you being honest with me”. Yes most definitely I have not one thought that.
I have also told him on other occasions that I am not qualified to diagnose any medical condition as I am not trained or qualified to do so. I have said after this last long detainment where he had told me for some time that he is very stressed, that I know that he is stressed as he has told me so. The doctors can help with the stress. Later the term used by him was anxiety and this I can now speak about as I also mention my awareness of anxiety as I suffer from this myself. At the same time the symptoms are unique for each person.
He accepts this at the moment.
Acceptance of anything can change at any time; even during phone conversations. He is on high alert and testing my loyalty which he knows that I have always had.
He needs to reassure himself of this constantly I believe and I understand this so much.
I am the only person in his world who listens to him at length. I work very hard at not questioning anything no matter what the content is.
He has a connection with nature and this is a bond between us. He has strong belief in nutritional, plant based food. Another connection. He researches cultures and spirituality. Another connection. His fitness is important to him. Another connection. He loves cooking as do I creatively. Another connection. He believes in natural therapies as in meditating, soaking in the environment. Nature and growing vegetables and herbs. Further connection.
Practising brain exercises. Further connection. We have many common interests.
Now off of medication as was advised by a nurse in supported accommodation and a gp somewhere that this particular medication is more harmful than the illness to stay on long term. There are different medications for Schizoh\phrenia.
I am still unaware of where he lives. He rings me under the guise of no caller ID.
Some days there can be over 20 calls.
Some around midnight.
Also my understanding is that the delusions are not necessarily with them all day every day.
I learnt to recognise that he would ring me whilst experiencing delusions. He knew that I listened to him. He was trying to reach me.
He also constantly tested me to see if he could trust me. Always asking me if I was alone when calling and not to repeat anything that he said to anyone.
This led me to keep everything to myself for years. Then I became very unwell and now find ways of talking about circumstances from a third party point of view to alleviate feelings of betrayal.
I also learnt to set boundaries and assertively let him know that am not prepared to listen to any aggressive, abusive talking.
I carry with me my loving son who has had a horrid life
He has love, generosity and such deep loyalty
He lives on a disability pension only apart from when we transfer money with boundaries
He donates money to help causes
he donates to some charities
he will stand against racism and culture disrespect
He supports our environment
I miss my son
So hard
This will only be here for as long as I can bare my anxiety around this.
I have probably repeated myself.
Have spent far too much energy on this already
So it is what it is now
How long it stays, if it even is allowed remains to be seen.
Now is now.
For myself 💜
