Happiness from my son's perspective

[Elsa]

So often we grieve the loss of the children we knew. We worry their life with schizophrenia will be lonely and unproductive. We live through violence, destruction, medication refusal, walking on edge shells and thinking how can life with schizophrenia be meaningful or happy?

I want to share my son’s perspective to give you hope. Today was one of the happiest days of my son’s life. I dropped his dog off to live with him. He smiled and felt pride like I have not seen in years.

In reality he lives in a halfway house due to drug addiction along with his schizoaffective disorder. He has relapsed and went to inpatient rehab 3 times in 2020. He worked 5 different day labor type jobs. He has no real friends, just guys he lives with and attends meeting with. His dog is only going to stay with him on weekends,

His perspective: he no longer lives with his parents, he likes his job hanging sheetrock, his dog does not care what his state of mind is and loves him unconditionally. He feels accomplished and proud.

If anyone asked me when he was born if I would celebrate him living at a halfway house, barely finishing high school, never going to college, doing day labor and 90 days sober. I would view that as a nightmare, but after this journey I celebrate this milestone with him with pride!

[Sando]

Thanks for sharing an awesome perspective that all of us should either embrace now or soon.

[caregiver1]

I agree that the signs are looking up. It’s really great that he is learning a trade and likes what he does.

[Lilies]

Thanks @Elsa, your post brought tears to my eyes.
I have come to a similar place with my son. At first I grieved the loss of what could have been but three years’ in have come to a place where I am so proud of him (and I tell him so). He is living independently, studying and trying to live his best life without medication. Although I may not agree with the no-meds choice I can accept that this is his choice and continue to let him know that I am here if he needs me.
He has SZ, didn’t ask for it, it isn’t his fault, and he’s doing his best to live a productive life with it. I can’t ask for more than that.

[Erica]

I’m sharing your delight at his success. If he’s happy then you are. Part of getting real about these illnesses is confronting our own judgemental attitudes and letting them go.

[Warrior]

This is beautiful, Elsa. Thank you for sharing!

[Maggotbrane]

I concur that animals are a top contributor to the happiness of people with mental illness. I presently live with five animals, but I longed to have a cat during my recovery, but didn’t have pets for many years living on my own. It can be very difficult as a renter to find housing that allows pets, but it can be hugely beneficial. The DX forum has many threads featuring pictures of pets.

It’s much easier once you own your own home, and I eventually branched out to adopt both dogs and cats. My brother has a cat that he dotes on and antropormorphizes. It’s led to odd times where he brings his cat to inappropriate places like churches, beaches and mountaintops, but on the whole it’s been good for him. Be aware you’ll need to plan for contingencies like caring for animals during hospitalizations and rehab.

We are going through this now with my brother, as we nearly had him agree to enter rehab, but care for his cat is an obstacle. My sister recently played me a voicemail where he declared that his cat was plotting to kill him, so maybe that may make it easier to convince him he needs a break for his protection .

[Stepmom2020]

Thank you for sharing. Perspective. It’s everything.

[caregiver1]

@Lilies If he is living independently and studying, that’s wonderful! Do you mind saying what drugs he had been on and how long? My son recently stopped taking meds and I am about 90% fearful and 10% hopeful that he will manage it. Almost all of the conventional wisdom says that SZ/SZA is a neurobiological disease that must be treated with lifelong drug therapy.

[HLC65]

I am so happy for you! I pray one day my son has it that good.

[Elsa]

@caregiver1

Drugs work differently for each person and the same drug that works well for one person with the disease may or may not be effective for someone else. Its highly individualized. The drug that works best for my son is abilify. He currently takes oral prep 15 mg a day. He’s been willingly taking his medication and managing on his own meds for the past 2 years.
In his teen and young adult years, he tried multiple different antipsychotic rx and mood stabilizers this is what works best for him after much trial and error. I found the biggest positive change was when he took same medication as monthly injection for 18 months probably due to consistent dosing.

FYI each time my son stopped his antipsychotic medication he did relatively ok for 6-8 months then he gradually decline and ended in full blown psychosis around 10 months of no medication. Periods of no medication is part of the journey. Most every person tries to go off medication at one time or another or several times or out right refuse it from the start. Its a journey, a marathon, a rollercoaster ride…enjoy the good time and know there is always hope!

[Lilies]

@caregiver1 - From memory I think my son started on risperidone, then later aripiprazole. He was on something else as well but I can’t remember. If you like I can ask him when I speak to him next? I’m not sure how long he was on each, but it has been 3 years since he started the first one, and he’s been drug-free for about 10 months now.

A short history which may help: His first psychotic episode/break was 3 years ago. Just over a year later he went off his meds almost cold turkey and had another episode and had to take drugs again. 10 months ago he took himself off his drugs again but this time much more slowly (over a few weeks).

I really believe that each case should be considered individually. There are people after all who recover completely and we all hope our loved one will be one of those. My son has always fought for his “right” to manage his illness in his own way and he is very much against using drugs for himself; he believes (rightly or wrongly) that they will do more damage long term than the illness and shorten his life span.

He has had some weird moments during the past 10 months - some delusional thinking, paranoia, disordered thoughts - yet is managing himself adequately (I think). At first we were very worried. He moved into student accommodation, grew a scraggly beard, had trouble holding conversations, but kept studying (online and part time at his own pace). We visited him in January and he was hard to talk to, slow to answer, acting a bit strangely. Just over the past few weeks in our Skype sessions we’ve seen a major change - clear speech, very quick witted, happy, easy to talk to, almost the man he was before his first psychosis. And so we have hope! But … I’m not naive, I know there’s no guarantee that this will work long term.

Did your son stop taking his meds under the care of a doctor or by himself? My son’s doctor said “no” he wouldn’t support that decision. I sincerely hope your son is able to manage it okay. For us it’s early days so I don’t know which way the wind will blow!

[caregiver1]

@Elsa

FYI each time my son stopped his antipsychotic medication he did relatively ok for 6-8 months then he gradually decline and ended in full blown psychosis around 10 months of no medication. Periods of no medication is part of the journey. Most every person tries to go off medication at one time or another or several times or out right refuse it from the start. Its a journey, a marathon, a rollercoaster ride…enjoy the good time and know there is always hope!

Wow! Such good information. Thanks! It all sounds right. I’ve been thinking about that lately: "Periods of no medication is part of the journey. " He’s the one who has to learn what’s right for him. I’ll soon be 70. He’ll live for 30 years at least after I’m gone and my attempts at managing him are over with. He has to learn what works.

[caregiver1]

@Lilies Your reply is very helpful. Thank you! My son has always (10 years) been compliant with whatever his doctor prescribed. Now, like your son, he is trying to manage his meds himself. It’s completely against his doctor’s orders. In fact, he’s stopped seeing his doctor.

I’m not so naive as to believe this has any more than a 10% chance of not ending badly as SZA is a neurobiological disease. But like you said, there is that chance he will recover without meds. If his brain can adapt to Seroquel (I’ve taken a small dose to see what it’s like and I don’t see how anyone adapts to 100’s of mgs of it!) then maybe it can adapt to stopping it.

Anyway, no doubt like with your son’s relapse and @Elsa’s son’s experience with a predicable relapse 10 months later, that’s what most likely will happen. If it does, he’ll learn.

[Lilies]

@caregiver1 , just thought I should update as you had asked me about my son and his meds.
After going about 10-11 months without medication he realised that he wasn’t “quite himself” and took himself to a doctor. He’s now taking a small dose of risperidone again. I’m so glad he came to that decision on his own!
How is your son doing? Is he still trying to go med-free?

[caregiver1]

@Lilies He relapsed shortly (a week or two) after attempting a cold-turkey withdrawal from lithium and quetiapine. He’s on the maximum dose of quetiapine, 800 mg, in the hospital. I’m pretty sure that’s not going to motivate him to stay on meds when he gets out.

[skyler.hayden]

I’m a little late with this one, but we adopted this beautiful pup, Ollie Rose in 2020 and she provides more mental health stability than anything else! I too, celebrate how far we’ve come, how far he’s come with his new limitations and love your tribute! Xo

@Elsa

[Lilies]

@caregiver1 - I’m sorry to hear your son has relapsed. I do hope he will be able to find the right balance when he’s out of hospital. What we really need is for someone to come up with a cure. Until then, we must stay hopeful. Well … try anyway …