For those of you that have followed my posts over the years. Things are still pretty good with my sz son. He is 34. Hasn’t had a seizure in 4 years and hasn’t had a notable break with reality in about as long. I am blessed in that regard.
On the surface anyone not close to us might think, “oh great, well, now why is he still living with his mom, still unable to work, still basically friendless, still unable to manage all of his money, still unable to manage productive days all on is own without some suggestions or directions on how to fill his waking hours with anything besides TV and cigarettes?.”
The truth is I have tried many many times to bring up these topics with my son and see if I can get any genuine interest or even a slight hint that he might want to make even a small effort. Each effort is met either with nothing, a blank stare and no answer OR a sudden flurry of confusion resembling a mild panic attack.
To live without me as a roommate would mean someone would have to take my place. If there was no one then his quality of life would drastically decline. Lack of ability to self motivate and “plan” and carry out plans without a partner would be a big issue. His lifelong excessive sleeping patterns which literally started at birth would make possible employment of any kind really really difficult to sustain.
As for friends-- without the desire there is no effort and by all accounts and in his own words he has no desire to interact with anyone other than me and on rare occasions his brother.
I resign myself to these facts and give thanks that he is based pretty firmly in reality when it comes to simple day to day activities. I give thanks that he has no desire or opportunity to ignite or cater to his addictive behaviors of days gone by. He has been clean and sober at least 7 years. Compared to the nightmarish road we began on, this is Nirvana.
In a sense I have moved on while still living with and caring for him. I am still on disability myself, still working on bettering my health and wellness every chance I get. I get up early, go swimming, make a healthy breakfast, take care of my personal errands, work on my patio garden, watch a favorite show or listen to my music, and make phone calls.
By the time my son awakes I am ready to focus on him. His appointments, his activities, meals, exercise, etc…He does help, he helps with household chores every day, he is very good about that, his bedroom is as neat as a pin. We do laundry Tuesday or Wednesday together, he folds his own and puts it away. He can cook limitedly but cooking frustrates him. He is not good with details.
Some of you might remember that time a couple years ago when he virtually quit eating or began eating a teaspoon of this and a teaspoon of that for a week or so. It threw me for a minute. BUT you’d all be proud of me because he went through that phase again this past week and I let it be. I just joked it off, and let it go the way it was to go. It was a little frustrating throwing off my meal plans, (how much to make etc) BUT I made a pretty good turkey meatloaf and stuffed it with grated veggies in stead of bread, (btw it was delicious) and then I made a macaroni salad also with a lot of chopped veggies in it, and there was a tub of cottage cheese in the fridge, SO i noticed he would get a tiny piece of meatloaf, a spoon of macaroni and a spoon of cottage cheese each time. Enough to feed an infant if an infant ate those things. Still I said nothing, in about 5 days he was back to normal. Less attention, less drama, less duration.
As for exercise he makes a valid attempt to walk an hour a day. Personally I would rather swim but I often accompany him, he is getting better at going alone some days. When he first started clozapine he ballooned up to about 305 from 215. Today he is down to 253, and seems to lose about a pound or 2 a month most months. He won’t discuss it but he is very self conscious and I do think his self esteem is pretty low. No amount of praise or positivity from me counts as he clearly stated to me once “That is what mom’s say. you won’t say bad things about me” I tried to argue that but he had a point. I don’t see the negatives he sees with his body.
He and I get along really well --like well matched room mates I guess. That is a long way from the chaotic, emotionally charged and dangerous war zone we came from. I often want to tell people on this forum that there is hope but I fear doing that sometimes because so many countless factors play into any sz patients’ road to wellness or inability to reach that road. I can’t honestly say to anyone that the cards will fall in place or that parent and child will react and interact in a way that eventually works out with any reliability. I can say it’s worth every effort to try.
If I hadn’t been forced onto disability through a series of serious health scares, I do not think my son’s wellness would have gone the same way it did. He got notably better when I was with him every waking moment. It was emotionally difficult for me not to work a regular job, so making my son my full time job helped me to acclimate to being on disability. Eventually when my son was much better I turned my focus back onto myself and really improving my health as much as possible.
If we hadn’t lucked into getting a place to live away from the bad elements that lured my son toward drugs and alcohol, safe and more isolated but in a good neighborhood where you could safely walk the streets without worry…I don’t think his wellness would have gone the same way.
If clozapine had not eventually eliminated his “voices” I don’t think he would have become so 100% med compliant as he is now. I recall the day he looked at me and said, “If I knew a medicine like this could get rid of the voices then I wouldn’t have had to use street drugs” I knew he would be compliant so long as the voices were gone. To date that is still the case. He still will never discuss his illness, he gets angry if I try so I am not sure it is insight as much as it is liking the results of the med itself and wanting that result to continue.
I write all of this to share my world a little, for what it’s worth. I don’t see my son son living completely alone unless it is an unplanned result of an unforeseen tragedy…(fingers crossed) I don’t see him employed, I don’t see him with a bunch of friends ever. Still, I hope for one friend one day, if it’s meant to be. I hope for more hobbies as time goes by. Today he intently collects coins and music and dream catchers. He still recycles aluminum and plastic and he loves football and reality TV.
I think he is happy, he proclaims he is happy, (who am I to argue that?) it is still often hard to tell. I am a happier mom, more content to care for myself often more than I feel I care for him. The care I give to him is always in the form of reassurance, reorganization and redirection—encouragement and companionship…it is as taxing to me as brushing my teeth is— so not at all. I have done this for well over a decade, going on 2 actually. so comparatively the stress is negligible to me now although my therapist would argue it is still there but I am just really comfortable with it…
I still see the same therapist for PTSD, I still have triggers, I have to watch my surroundings, loud chaos and screaming can really set me back. Fortunately I don’t run into that often these days.If I didn’t have the 6-8 hours a day all to myself while my son sleeps I may not be as peace filled as I feel I am, so like I said there are so many mitigating factors, so many things that happened to fall into place over the years. I think my son is doing very well and he as independent as I think he can be and maintain his current quality of life. I think we are okay knock wood
I wish everybody (going forward) the best of circumstances with their loved ones that leads to the best path for wellness and peace for all. Thanks for being there all the times I needed you.