my relative, let’s call him M, after displaying pretty much all of the negative symptoms and not keeping up with school and job, was finally brought to a specialist (he came by his own will! more like dragged himself i guess). the doctor suspected sz, (not a final diagnosis) and suggested meds. we knew something wasn’t right but no one thought it could be sz… whole family is kinda shocked, we don’t know what to do about the meds and what to do in general
i think the doc suspected the prodromal stage
M is forever somewhere away, driving aimlessly around (we think so), so we don’t talk face to face often, we text. i really want to show him i love him to the moon and back, he’s someone i look up to in many ways, and i don’t fail to tell him this. but i don’t know whether he believes it?
how to show him that he really really matters to us, that we love him, that he’s talented and capable and loved… my heart breaks for him
p.s. M wasn’t told about the suspected diagnosis by the doc, he just knows that he was suggested some meds
Funnily enough, food was the key to my daughter talking to me and feeling cared for. When she wouldn’t talk to any of us in the house at all, the key to starting her interractions with us again was knocking on her door and offering a plate of dinner.
The next thing was asking her to walk the dog with me at night. She didn’t start doing that for awhile, but when she did, it happened every evening.
We still share food and walk the dog every night. I tell her I love her every night when I say goodnight.
The best way is to just tell him what you are telling us. Schizophrenia can lead to social withdrawal and even rejection of family and friends, but underneath is still a human being who needs love and attention.
You sound like you have done your homework, and if the specialist determined he is on the spectrum of schizophrenia/schizoaffective disorder, he likely is. But a second opinion never hurts. It is really fortunate that M seems aware that something is not right (he has some degree of insight.) Has he described any positive symptoms (voices, hallucinations or feeling watched or pursued)? He may have these but not want to talk about them. I doesn’t sound like he’s had psychotic break (yet) so if he gets treated soon he may be spared its damaging effects, but this is for a specialist to determine.
I suggest attending a NAMI Family to Family class. They are offered at various times and there is no cost to participants. Look up NAMI (National Alliance on Mental Illness) in your state to locate classes under Support and Education tab most likely. You do not have to have a diagnosis to take this educational class. NAMI Family-to-Family covers:
How to manage crises, solve problems and communicate effectively
Taking care of yourself and managing your stress
Developing the confidence and stamina to provide support with compassion
Finding and using local support and services
Up-to-date information on mental health conditions and how they affect the brain
Current treatments, including evidence-based therapies, medications and side effects
I remember that feeling of shock and wanting to do my best but not knowing quite where to start.
My son had and still has insight and while the road is bumpy it is good to travel alongside and be there to listen. Bits of stuff that have happened start to fall into place in the jigsaw and the picture will begin to make sense.
Meds can take a while to sort out as others have said. My son was treatment resistant and has now been on Clozapine for 5 years and doing really well at last. Living independently and volunteering with a Food bank 2 days a week as well as gym, hobbies etc
His friends have been supportive and I tried to help them understand too in early days as there such a lot of awful stigma.
Try to learn as much as you can about the illness and don’t forget the huge benefits of structure, routine exercise and diet. He will find it reassuring that you are able to remind him of what there is to know, even though his experience is unique to him.
Remember that delusional thinking is the illness not him - meds will damp all this down once they are working.
Carers /family need support too - be kind to yourself. Share your feelings with someone you can trust. I didn’t do this out of a wish to keep it all private for him. Once I did speak I was much more able to cope with it all.
Keep yourself safe.
NAMI is well recommended
Rethink Mental Illness is a UK website that is all about serious mental illness such as SZ and Bipolar - we live in UK
There is loads of info on there and some will apply to US too
I wish you and your loved one all the very best. One day at a time, travel hopefully and take care of yourself too.
So grateful for your sharing to help us have hope. Glad that your son was still willing to take the Clozapine after being resistant; having family support is very important. Good job mom!
–“Remember that delusional thinking is the illness not him - meds will damp all this down once they are working.”
Great line!!! I didn’t think of it this way.
It’s a practical response to the obvious situation.
Hi
“Treatment resistant” means that at least two standard anti psychotic meds have been tried and failed. This means that Clozapine can be tried and once he commenced this med it made a huge difference . It involves having regular blood tests but this is more than made up for by his wellness.
structure, exercise and diet are crucial sure, but he mostly lives in the car (no one kicked him out) and has no structure, no diet, maybe walks a lot tho
i really don’t know whether he has delusions and what they’re. he doesn’t really talk about himself much, his most favourite phrase is “i don’t know”. like he’d just say out of blue, addressing me, “i don’t know”… and that’s it, no continuation, i think he has so much thoughts he can’t think properly
he was prescribed meds (no one told him it was for sz bcs he’d freak out, we all freaked out a little or maybe not a little bit). he isn’t taking them
thank you for your answer! yeah, sharing is great for my own mental health, we discuss all this stuff in the inner circle of the family tho, because stigma is WILD and he’d just be labelled crazy, and will be seen not as a real person but someone who lost their marbles
now, people just seem to think that he’s peculiar, someone who thinks outside the box and maybe depressed, which is more socially acceptable
Yes
I know what you mean about the stigma
Some people in UK use the term ‘brain injured’ rather than SZ as that’s what happens after a psychotic episode and helps to contextualise the term recovery which is used a lot here when people are in treatment. It means that it is a lot less stigmatising.
With all good wishes
‘Eccentric’ as a description is a lot less threatening for wider society than SZ although the person themselves is often really worried and frightened by that same wider society.
The best thing I can suggest generally is going to the https://www.nami.org/ website to look for information and resources. And this is a very comprehensive book that NAMI has compiled that perhaps you can order? :You Are Not Alone | NAMI Best wishes as you navigate this journey!
oh, i see, thank you! “brain injury” is an interesting way to put it
yeah, i think it’s interesting that M is still quite a social person, i think that sporadically talking to people he knows is like a coping mechanism?