On with Life Here and Now

How motivated is your loved one with SZ,
to do things “out- in- the -world”?

Numerous times I have offered my 50-year-old son support for continuing his education.

He has improved greatly since first being diagnosed with clinical depression then paranoid SZ over 20 years ago.

After much trial- and-error with meds, he seems like his " old self".

I try to offer activities, courses etc. but he refuses saying he’s “doing his own thing”.

I am concerned he is bored a lot.

What are your experiences like with loved one’s activity level?

Greetings from Vermont
:maple_leaf::maple_leaf::maple_leaf:

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On with Life Here and Now,
My son is not motivated at all! He acts like a teenager, he’s 49, thinks his job is out there on the streets, going to game rooms and spend his money as if there’s nothing else more important than that and he gets bored of course but I stopped suggesting anything to him because in the past he registered a few times on the same class 3-4 times and he barely started it and quit, it was a waste of money; he’s going to do what he’s going to do, he doesn’t take any advice as is the case when unmedicated which is happening right now; medicated makes him seem even more bored.

MI has tried our patience big time!
Take care.

Hi VermontWoman1,

My experience is like @rosyd 's. My son does the same things he has done since the symptoms started. Video games and selling and buying on ebay are his biggest interests. He will collect something, sell it, and start a new collection of something else.

@Maggotbrane has often said social interactions are important, my son resists those most of all.

Maybe it would be different if mine was medicated, but he remains unmedicated.

Same here. The meds are doing their job – i.e. no delusions and hearing voices – but no socializing outside the house.

For most people that means a job, I think. In my case, it was get up → get dressed → go to work → come home → have a couple of drinks, and then (much) later exercise to relax → go to bed → lather, rinse, repeat.

So, if it hadn’t been for working I don’t know that I’d been all that social either.

So is the job the missing part? Does it mean that vocational counseling and job support with counseling is what’s needed?

I don’t have a problem with being a sole proprietor. If you can do it, it’s the best way to earn a living. Problem is you have to be very good at something to make a living that way and most people don’t know how to do it where they make an income of at least $50K.

After thinking about this, the issue is not really socialization outside the house. The issue is can you make enough money to live independently. For most people that means a job, and a job requires some amount of social confidence.

Often what’s missing is a sense of pragmatism, making practical beneficial choices and putting matters in proportional context, regardless of vocation, avocation, socialization or lack thereof.

My brother with a bipolar DX overemphasizes social contact, concerning himself with social status and stratification because he once worked as a bartender in a country club—among other jobs. It rarely pays off for him, and often leaves people perplexed and/or feeling sorry for him when he compensates for his lack of status and achievement with puffery, ingratiation or inappropriate gift-giving. He achieved a Master’s Degree and had several relationships since his diagnosis, yet these have debatably served more as a reminder to his lack of success than indicators of it.

So no, I wouldn’t say socialization, a relationship, a hobby or even a job is necessarily THE answer in and of themselves. But under the right circumstances, all in concert can certainly help.

In recovery, while struggling with paranoia and doubt in social situations, I came to a helpful realization: the world was largely indifferent to me—people were too focused on their own concerns to even notice or care much about me. (Stuck in the @caregiver1 rinse-repeat cycle) That is unless I could develop, articulate and demonstrate my value to others. So that’s what I set out to do.

These are universal problems, mental illness or no, and balancing them forms the bulk of adulthood. The challenge for people with SMI is the diseases strike in young adulthood, often before you get a chance to complete foundational steps of building your value. And COVID lockdowns taught us all that sole proprietorhood in all aspects of life is a tempting lure away from the stresses of work and social situations, but in most circumstances it’s not a practical or ideal long-term way of life.

So what’s a caregiver to do? Keep trying, and see if you can coach the person under your care to build their value in small incremental steps.

My first thought when @VermontWoman1 said her son was “doing his own thing” was “which is ???” What I’m getting at is: can “his thing” be developed either as a hobby or a vocation that improves his life? For example a person interested in video games might review them online, or set up a stream playing them, or work in a store selling them, or go to tournaments as a spectator or participant, or Cosplay as a character or other creative pursuits which can lead to other things. My experience is rarely does your career or social life travel in straight lines, unexpected twists and turns seem the norm rather than the exception. I’ve elaborated in detail the twists and turns of my path of recovery in the previous posts, so you may search my post history if interested.

Another lesson of COVID lockdowns I feel we can all relate to is: do I bother to mask up and go to the store, or do I order online and have it delivered or pick it up? With SZ it’s as if you’re in perpetual lockdown, so it’s just easier to stay home and avoid the hassles of dealing with the world. But as we’ve learned, that’s half a life. So what I’m advocating is coaching of similar gradual small steps we took into the world in larger and larger groups and maybe even dropping our masks at a point where we feel safe.

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My son (30 yo, Schizoaffective bipolar type diagnosis) tells me that he doesn’t get bored. He is doing remarkably well right now, although his life is very solitary. He spends his time listening and practicing his music, writing poetry, watching tv/movies and playing video games. He is about to try to work for the first time in about 5 years. We are both really nervous about it. He is not comfortable driving but will need to drive about 20-30 minutes each way and more importantly, he has a great deal of difficulty waking up for anything during daylight hours. He currently takes his pills in the early morning (5 or 6 am) and wakes for his “day” at 5 or 6 pm.I guess my response to "VermontWoman1’s post is that stability/ relatively good health is such a blessing for those living with sz/sza that if your son says that he is contented and seems contented then perhaps he is(?) As human beings we all want to feel like we have value and the respect of others but perhaps even more critical for someone with sz/sza (given the paranoid delusions) is to feel safe. I think that may be why so many of our loved ones isolate themselves at home. Perhaps if the suggestion for outside activities comes from someone else your son will consider them? Perhaps if you asked him to think of 2 or 3 activities that would take him out of the house each week that you could help him participate in?

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Great thread and very insightful points Maggotbrane. Our son’s DX was only a few months after Covid shut-downs occurred. The forced isolation only served to prove to him his delusional thoughts on the New World Order, forced vaccines, end-of-times perspective. Frankly it was pretty hard to argue.

Not that Biden has declared the Pandemic is Over, my son has new fears that tend to keep him isolated. His default setting is to stay at home, play video games, eat.

Our arrangement for him to continue living with us is to add (1) 20 hours of work per week, (2) med compliance, (3) safe behavior, and (4) exercise 3 x a week.

He’s been very safe, and stayed med compliant, but he routinely skips his volunteer job and workouts. His fear, paranoia, and anxiety are so real and sad. And I constantly battle with whether I’m letting him play me or if I’m letting him live his best life.

Very challenging where to attempt drawing a line at enforced socialization (volunteer work) vs understanding.

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My problem with urging my son to socialize is that he was never very social before he was diagnosed with SMI starting in his late teens. It’s not in his nature. I do agree that work is important, since if our loved ones are going to have a chance of living independently they need to figure out how to make $30-$50K a year.

Maybe vocational counseling to set an objective in line with their tropisms followed by a plan to achieve it. A book I really like, which I think I’m going to urge my son to read is Designing Your Life. A Meetup group that goes through this book would be the ideal thing.

The question was settled for me after the truly horrific things I saw during his 4 psychotic episodes and hospitalizations. Schizophrenia is a brain disease, so being an illness I can’t hold him responsible.

Totally understand the dilemma we are in between tough love and not doing anything. I just hope he will see the way forward to live his best life.

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We were fortunate, our son wanted to work, working was what made him feel good about himself. He was always proud to tell people he had a job. He tried full-time work over and over and it always ended badly.

We realized that that our son would never have a chance of living independently based on his own earnings. The pattern repeated itself, get job, get apartment, lose or quite job due to paranoia, move back in with parents.

At his psychiatrist’s suggestion, we applied for disability and he was granted ssdi and ssi, SNAP, Medicare and Medicaid This gave him enough money to live in a tiny apartment. He worked as an Uber driver (with a high rating) until his physical health eroded. We told him that he was limited to earning $200 a month (his psychiatrist’s suggestion when she talked us into it). He could handle the hours to make $200. and that money was his to spend. Uber didn’t cause paranoia issues as he drove different people around each outing. Regular work had caused severe paranoia/psychosis issues towards coworkers he saw on a regular basis.

Those Uber years have been the best, most successful years of his life since diagnosis. He loved having a job and only stopped working this spring when his physical health deteriorated and made driving impossible.

Are the physical health problems related to the drugs? My son has been on lithium for maybe 15 years and is now in Stage 2 chronic kidney disease. It’s just barely in Stage 2, so I’m hoping that stopping lithium will reverse the damage.

My son was diagnosed with cancer a couple of years ago. The chemotherapy has damaged his vision.

I’m sorry. Your profile says your son is just 34.

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What puzzles me is, my son doesn’t have a purpose in life.

His activities are very similar to what others have described;. T.V., movies, rides his bike, avoids social contacts.

Doesn’t remember his violent actions.

I’ m not sure he’s " content", but he is safe.
And repeatedly says he hates the group home he lives in. Doesn’t want me to visit, either.
Messages daily and an occasional phone video chat are all he can handle.

I respect his wishes, and am relieved he’s not in the street or living in his van.

Greetings from Vermont
:maple_leaf::maple_leaf::maple_leaf:

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Thank you @caregiver1 - it does mean a lot to hear it. He was 34 when I joined this forum six years ago. Its been a lonely 2.5 year since his diagnosis. This forum doesn’t deal much with serious physical illness and brain disorders. You can imagine, our struggles to get through surgeries and chemotherapy are a little different from most folks. Oh my (!) - but we did make it. I found a cancer forum that was active and full of helpful information. As we have gone further along his current path, it turns out that many of the EOL people are suffering from high levels of anxiety - of course- right?

On one hand, he fits the classic "our family members don’t live as long because medical things aren’t caught early. On the other hand, he was seen regularly by doctors throughout and they all missed it. Unfortunately, colorectal cancer is often discovered way too late in younger people.

I am grateful to everyone on this forum, their patience and sharing gave us the knowledge we needed to get through this difficult time.

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I hope your son is doing well @hope. 30s would be before regular colonoscopies are done, which I think is all we’ve got to detect colorectal cancer early.

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As far as I know, colonoscopies aren’t usually recommended until age 50. There is the new test cologuard or something like that, it’s more affordable.

Thanks for the kind thoughts.

I used to spend much time searching for activities and encouraging my son to do more, but he would give me excuses or just ignore me. I thought maybe it was what I would like to see him do. He has told me that he is comfortable the way his life is. Now, I very seldom make any suggestions to him. I communicate with my son regarding his doctors’ visits, his well-being, and disability benefits. I am bothered at times by his lack of activities, but I make an effort to stay detached. He sometimes seems bored and agitated. I believe this is due to his mental illness.

My son lives in a small, independent living facility and engages with the other residents. He likes living there. He also visits me daily and we usually have lunch together. Coming to visit me and having lunch together is my son’s activity. We share some time together and have time away from each other. This arrangement seems to work best for both of us.

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My son is still fairly unmotivated in terms of most interactions with the outside world. I’ve mentioned before the transactional nature of some of his progress, e.g., a few years back in order to buy cigs I said he needed to earn money doing chores, cooking dinner.

Over the past several months I’ve been encouraging him to go to the gym or out to play tennis with his brother. Always “maybe sometime.” Then there was something around the house he agreed to do (I can’t even remember what it was) and he didn’t do it, twice, and I finally said if you don’t do it by the end of the week you’re going to the gym and play tennis with your brother, deal? He took the deal. He didn’t do the thing I asked. And he played a tennis game with his brother. And they’ve been playing three times a week for a month. He was the captain of his high school tennis team and hadn’t played since scz found him.

I have mixed feelings about this because I feel I manipulated him into doing something. Or maybe I was just a frazzled working mom trying my best. I’m proud that he followed through on the deal.

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Merci beaucoup pour votre réponse.

Thank- you for your response.

Your feed- back was very useful and supportive.

Greetings from Vermont
:maple_leaf::maple_leaf::maple_leaf::cookie: