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25 year old son in uk will not admit illness, any advice out there?


#1

Hi everyone, my son i have recently found out has paranoid schizophrenia, this is after 10 years, 5 sectioning situations, 1 failed marriage and god knows what else. My real problem is this, he refuses to engage anyone whatsoever or even admit he has anything wrong at all, subsequently he takes no medication, even though when he has in the past it clearly works, he still has some pride, and its getting the way. I have seen his mental health deteriorate gradually over the last 5 years and often hear him now talking and laughing to himself and in communication with the other unwanted guests, he has all the other stuff that you are all very aware of, the aggression, voices and hallucinations being some.

Does anyone have any advice for me?


Symptoms since 2001 but still undiagnosed
#2

Hi Eze, I am kinda in same boat but now my son understands he has schizoaffective but now he tells everyone like when playing videos he says to people specially when he was manic he says please forgive me I am schitzophrenic etc. My son tried all meds but side effects we’re to much for him some made him suicidal when he was not also some caused seizures so right now only thing he agrees to take is lorazepam as settles voices but won’t take any psychotic drug. He figured it all out after 4 visits in hospital and swore 3 yrs ago he would never go back and back then hospital told me my son would end up in institution, well doc’s shocked at how he is but sadly Sept 5th he relapsed but I blame marijuana as when he did not smoke it he was fine then just suddenly started and bamm…I do swear by CBD in marijuana but worst thing for him is the THC in it. My son also will say as confused people say I am schizophrenic but I am a psychic etc TALKS, TALKS, TALKS are huge he needs to trust you fully as it is a secret or denial for him. I use to try to show my son how he not alone and said you like to research check this site out or that one I think he did and didn’t feel alone as he started excepting. But don’t drill it, again he needs your full trust to open up. Just try your best don’t get frustrated as we know that is hard but don’t show him that or anger. That shows him trust as well in his world. Be his best friend. He will come around. My son is 26 diagnosed 2012. Hope this helps.


#3

Read the book I’m not sick and I don’t need help by Dr. Armadillo. There are also some videos on this site. You can also click on the past chat and find your situation and how people responded.
I’m sorry that you are going through this but think you’ll find a lot of people here who have been there before. Non compliance is very high with this disease and many have found that withholding something like cigs works for medicine adherence. I wish it did for my son and should retry from time to time.

NAMI is a very good resource so attend their free FAmily to Family class and take anyone who might be interested in your family. You will need all the support you can get. I wish you the very best.


#4

Here are some UK resources:

He’s not in denial; he is so ill he does not know that he is experiencing symptoms of schizophrenia.

My advice is to try to get to the point where you are having the best days possible while he is not in treatment. If he ever becomes so ill that his behavior is unsafe, call the authorities again.

It’s not up to family members to treat this illness, but to get along with and love our relatives who have these illnesses. We’re not doctors. Your son would possibly benefit from injectable meds since meds seemed to help him in the past. Only a doctor can prescribe these.

Keep track of all the signs of his illness with dates so you can tell the doctor if they ever section him again.

Best to you


#5

It isn’t pride getting in the way, although that is what it seems like. Most likely, he truly does not believe he is ill. Other posts recommend Dr. Amador book and videos. They help. But what I have found the most helpful is changing myself.
I try to remember that his thoughts are HIS. As odd as they are, it is his reality and me trying to rip it away does no good. It creates a animosity that gets us no where.
I have come to realize when I don’t agree with him, what works best is asking neutral questions, like how did you come to that conclusion, where do you think that might not work or what challenges do you see.
My son was diagnosed almost 10 years ago, has been hospitalized–the last involuntary and on and off meds. He currently is refusing meds. It is a tough road, but no one ever said love was easy, right? Hang in there and WELCOME to the site.


#6

Hi EzE,

Your son sounds exactly like my wife! No insight to the illness at all, infact she will tell anyone (including the home carers who come to make sure she takes her clozapine tablets) that she is recovering from cancer!

It sounds like he needs to go on an injection for his meds, perhaps the threat of being sectioned again would be enough to make him agree to that, although of course sectioning isn’t something that’s done lightly (especially with the state of mental heath funding in the NHS), you just have to keep plugging away with his GP and the mental health team and not give up.


#7

“It’s not up to family members to treat this illness, but to get along with and love our relatives who have these illnesses. We’re not doctors.”

Great advice. Thank you!


#8

" try to remember that his thoughts are HIS. As odd as they are, it is his reality and me trying to rip it away does no good. It creates a animosity that gets us no where.
“I have come to realize when I don’t agree with him, what works best is asking neutral questions, like how did you come to that conclusion, where do you think that might not work or what challenges do you see.”

Great advice! Thank you


#9

List of our jobs, according to @firemonkey post today:

“These caregivers are really the closest people to the patients and provide essential care that physicians can’t: They accompany patients to doctor appointments, assist with everyday tasks, ensure that prescriptions get filled and more.”

So if a person won’t go to the doctor or take medication, we’re day to day support and that’s about all we can do…


#10

Try to get him to go with you to see a psychiatrist or psychologist - find something that he can agree with you to see him about - it might be sleep issues, or stress, or anxiety or depression or not feeling good… just get him in there, prewarn the psychiatrist and share a much as you can with the psychiatrist before hand.

Here are some resources - do you have other family members that can help you. Educate everyone, and keep a journal about your son’s behaviors and beliefs so that you can share it with the mental health professionals.

Study this document:

FIRST Aid for Psychosis
http://www.schizophrenia.com/sznews/archives/005561.html

How to get help:

http://schizophrenia.com/family/FAQgen.htm#whattodo

Here is a good place to get your father to, if you can:

I recommend you watch these videos:

I Am Not Sick, I Don’t Need Help! - Dr. Xavier Amador - Pt. 1

and

I Am Not Sick, I Don’t Need Help! - Dr. Xavier Amador - Pt. 2


#11

All of the above is great advice. I just wanted to let you know that I understand your frustration. My son was diagnosed this past summer and he didn’t even know he was diagnosed. (Some type of psychosis - likely sz/paranoid or schizoaffective. He doesn’t talk to anyone that I know of and barely talks to me (unless he wants something). He barely comes out of his room when I am home so it makes communication with him limited. I’m trying to make it comfortable for him when he does come out of his room - which is not to talk to him. At this point, I will probably just write him an email letting him know that I am here to help him if he wants help. (Which also means helping me as I’m tired of supporting him and I wouldn’t mind having him live on his own). One word I that his counselor used to use with him is - struggling. She’d say I know you are struggling and he seemed open to that word.


#12

In the UK there is a system called Early Intervention for people with psychosis disorders. My son was referred to his local Early Intervention team in London and they have been nothing short of brilliant. It took him a couple of years to fully engage with them (he was sectioned once for ten days) but for two years now he has taken depot injections and he has no breakthrough symptoms and is recovering his cognitive skills.
My son did accept that he was having delusions. A friend initially took him to Casualty. He had an appointment with a psychiatrist and she referred him to E.I. The E.I. team helped him to get a council flat and benefits and assist with anything really. My son doesn’t accept that he has sz but does accept that he has symptoms.
So what I suggest is that you speak to his GP about referral or find out where your nearest EI unit is and work with them to get him to engage. In my experience they are very skilled and stick with the patient through thick and thin. Early Intervention is supposed to be key to full recovery.


#13

One technique I found useful with my son was not to deny his delusions but to use one of two strategies. The first was to engage with him and ask questions. So when he had a paranoid delusion that a particular famous family had damaged him because of a particular quality he had, I asked if they were doing it to all the other people with that quality. He kind of stumbled on the question and then said, “I might be wrong about that.” He started “fact checking” his thoughts and found a lot of them were wrong. The other thing I did was to tell him that I don’t consider myself the judge or arbiter of what is “real” or not. Philosophers have discussed that topic for thousands of years. All I can tell him honestly is that sometimes I don’t see things the same way or I am not seeing what he sees. This allowed him to talk to me and other people about what he was seeing and thinking without fear, panic (from us) or conflict about ‘truth’. So he gradually accepted that his experience was not ‘normal’. He is now very well but he still values some of those experiences he had.


#14

UK is way ahead of USA, I am quoting @kevin99 post in its entirety:

"I’ve received a reply from Oxford Uni today, I mentioned I would like to post it on here, which they were happy with as long as I didn’t include the details of their researcher, who then may be inundated with emails, so here it is:

Thank you for your email, and I am so sorry for the delay in reply. We have received a lot of interest since the BBC special aired!

We are recruiting people with psychosis, aged 18-70 years for our study to test for antibodies in patients with psychosis. For participants to be eligible for the study, the current episode of psychosis should be for less than 2 years, but that can be a first episode, or a relapse. We are currently recruiting from South London and Maudsley Trust for this study. Our recruiter in SLaM is xxxxxxx and he can be contacted on: xxxxxxxxxxxx. He will be able to determine whether or not your wife is eligible to participate in the study.

If your wife does not meet study eligibility criteria, then your clinician (GP/psychiatrist) can request the antibodies blood test anyway, through clinical routes. I know this is sometimes done in SLaM.

The particular antibodies we recommend they test for are NMDAR -live assay, LGI1. The details for how clinicians can request the test, and the request card to use are here:
http://www.ouh.nhs.uk/immunology/neuroimmunology/default.aspx1

Other useful resources: www.sinapps.org.uk
http://www.antibodymediatedpsychosis.org/1

I hope this information is helpful, please feel free to get in touch if you have any further questions.
Looks like my wife won’t be eligible, but will check directly with the Maudsley next week, and then go to local GP for the test if necessary. If anyone out there manages to get on this study, or have the test done, please keep us updated.
They have requested that any enquiries go to the ppip@psych.ox.ac.uk address"


#15

I probably should have added unless his thoughts/actions put himself or others in danger. We are very firm in the event of danger to himself or others we are morally obligated to challenge him on that. He is ok with that (now) as it seems reasonable to him.
And thank you for your kind words!! Because there are moments when I am not sure if I can handle our “new Normal”