Wellness vs Independence (or lack thereof)


#1

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 :slight_smile:

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. :heart:


#2

Catherine, my situation is so much like yours. My new normal is so much better than my old normal. Not perfect, but definitely better. Speaking of PTSD, I have my triggers too. It’s been almost two years since my daughter’s last brush with the law. Back then I was living in total fear because I never knew what was coming concerning her delusions and behavior and the police. I would close my blinds and my heart would race if there was a knock at the door. Going outside in my own front yard to let the dog out brought panic attacks that someone was going to come up and tell me she had done something. She was actually able to convince me that the police department had it in for her. Yep, the fear was was real for me too and I thought I was going crazy. I would so like to find a good therapist for myself. Going through all this I did have a therapist, but she pretty much just stared at me and took notes. No interaction, to feedback. So I stopped going to therapy. I will try a new therapist in the next few weeks and hope for a better one. I know it can get better but it can take a long time. She is improving with medication and therapy. Much love to you and your beautiful son. :heart:


#3

I know you understand. Much love back to you and your daughter as well.


#4

I think I am mostly in about the same place as you are too - out of the war zone, into a fairly stable and predictable routine. I also hope that time will bring my son the ability to develop some new interests. He does enjoy music. He also likes to purchase books, and he plays one on-line game.

The only struggle I have with these activities is that - they all take money! (He won’t be satisfied with the basic skills in the on-line game, he always wants to purchase additional ‘packs’.)

I think I might be a bit further behind you in the ‘acceptance’ category. For example, yesterday, a holiday, I went over and mowed his yard, and then suggested we go out for coffee. All fine, until he then wanted to extend the time to visiting various other shops - which of course would also likely involve spending more money - specifically, my money. I found myself feeling resentful of both the time taken away from things I wanted to do, and also the expectation that I would purchase more for him.

I do provide him what I think is generous spending money, but he always wants more than I provide. Of course that is over and above expenditures on groceries, clothes, personal items, utilities, etc. etc. Guess I am just not at the ‘acceptance’ place you are at yet. Maybe after I retire and HAVE more time…

If any of you have any suggestions on how to handle the expectations for spending money, I would love to hear them. Currently, my son gets regular deposits into a spending account. I struggle with how much of my money to spend on him. I like to be generous, but I don’t like to feel taken advantage of. My son seems to have lost his understanding of money, and he knows I make a decent salary, so tends to say, ‘Aww mom, you know you can afford it.’

He also expects his dad will become a billionaire - any day now! - and so figures he will have that to available to him - very soon. Uh… nope…But as you all understand, logical responses fall on deaf ears when dealing with this illness.


#5

My son has about $45 or $50 a month for spending money, I send it to his paypal card each month, he use to be more presumptuous about what he should have and what he wanted but these days he actually asks for very little. He gets a student rate massage for $30, $10 for Starbucks and $5 or $10 for Taco bell or Smashburger.-for the month… He asks for little else other than an occasional new ball cap. I think it easier to manage since he lives with me and I can budget for the both of us with our 2 incomes. I don’t think I could manage it if we had 2 households. I would just suggest that you make him a budget and stick to it even if it leaves him unhappy for awhile. Give him an option of taking $10 or $20 of his own money and setting it aside over the course of a few months for future shopping trips. Just an idea? I know easier said than done. I play online games and I don’t even allow myself extra packs etc…lol…if it isn’t free I don’t play, only on occasion I might get a game card for Christmas or something. Always good to hear from you and to know things are better overall. :slight_smile:


#6

I am glad you are out of the “war zone”. We are mostly there now too, but not quite.

As far as feeling resentful… I hear you. I try to do as much as I can, but … the expectation of “more” is hard to overcome. It has taken mostly a year of little steps to cut back on my resentment of money and time spent by me on her. Everything is still out-of-pocket expense for me as she will not apply for disability and thinks she will get another job soon.

To cut down, I buy her food instead of taking her shopping with me most weeks now, as she would just pile stuff in the shopping cart that I would never buy, but she expected. If she asks for a new “something” (clothing, make-up, art supplies) I don’t take her shopping right away anymore. I say “maybe I will have time on the weekend” and then when the weekend comes, the request has been forgotten, I don’t push it. Or I buy it myself, and knock on the door to pass it to her before she shuts the door again. I pass her cash once in a while, but never more than $20 or $40. I don’t knock on the door to visit as much, so I have more time for myself. She will ask occasionally for a walk together, or a movie … I wait until she asks. And I no longer feel guilty about waiting for her to want contact. It took a while to not feel guilty as I so badly wanted to see her out of her room. I was always asking for her to come out with me, and then the outings produced antagonism, so what was the point? To upset myself? To upset her?

@Catherine Thank you for your post, it helps me to look as my situation with different eyes. I am glad that you have the time to spend with your son, and that he wants to spend time with you. I wish I could be home with my daughter more, but right now, I don’t see that it would help her, as she doesn’t want anyone to spend time with her but her voices. I am glad that your son is happy in his opinion. That is what is most important, in my opinion, what his opinion of his own life is. I guess my daughter is mostly happy, in her opinion. She doesn’t mind no friends, no job, little to no contact. She told me yesterday, after a rare movie outing (which she asked me for: first time in 3 months), that she just wanted to go home afterwards as “my room is safe”.

She will most likely never medicate (she always was anti-doctor), but we have reached a new normal for us, with very little long lasting public outburst from her anymore. The days of the police at our house weekly have been over for 6 months now. (She used to call them mostly, on us.) And I have learned to leave her alone except for food and walks at night and the occasional outing request from her.


#7

Yes, overall, I keep his budget about the same each week. I add only a small amount, each day or so, as a way to reinforce him to stay on meds and keep his behavior under control. He tried to convince me I should increase it, but I wasn’t swayed!


#8

Sounds familiar! A Whole Foods store recently opened near where my son lives, and I took him shopping there - the things that made it into the cart!
Some things he asks for I do exactly what you say - let it rest for a while and see if it is forgotten.


#9

Yes I went shopping with my son and spent about $200 on food which is about twice more than I intended. I vowed not to bring him grocery shopping with me again for now because he has no sense of being careful.

When will I learn ? Ha!


#10

I understand. I keep making repeat mistakes too, but sometimes I do it to avoid an argument. I hate arguments.

As @Vallpen said about things asked for by our loved ones, “let it rest for a while and see if it is forgotten.”


#11

I’ve let my son start ordering from Thrive market online. A lot of the same foods as Whole Foods, but a little cheaper. He get an autoship every month for $150 but he can go in and change those items as long as it doesn’t exceed the $150. Then, I’ll bring home some of his favorites to supplement in the meantime. He really likes the autonomy of picking out his own food and keeping it under that amount. I think he feels like its his money. We’ve been using it for about two years now. Free shipping for over $49. Been a life saver for us.


#12

Thanks for that Good tip. I will check it out.
Wonder if they deliver to NC. Will see ! Hope so !
Terry.


#13

Wow, what a great idea. My daughter doesn’t like electronics, and barely uses a phone, let along a computer, but maybe there is some way I can work it out so she can order her own food. I think she would like that. The thought never crossed my mind before your post. Thank you.


#14

Sometimes I wish my son would have more say in food shopping. He goes with me and does have a few favorite things he puts in the cart…but when I try to get dinner ideas from him forget it… he would happily eat cheeseburgers and fries every night if it were up to him. He seems to have adopted my eye for sales though, at least sometimes, I’ll hear him say, “too bad that’s not on sale” .


#15

Speaking of independence and choices brings back some good memories. My daughter once told me she worried she was really bad at making decisions especially about spending money. (She was a couple a years ago before medication and therapy). I said I didn’t think she gave herself enough credit. I said she took her food stamps, spent them on some very healthy choices (meat, vegetables, milk, etc…). She has learned to cook for herself and is an excellent sale shopper. I asked her way she didn’t just go to the grocery store and buy a couple hundred candy bars a months, it was her choice wasn’t it? She could have certainly gotten away with it. She said, “Oh yeah, it guess it could have. I think maybe I’m smarter than I thought I was.” That was music to my ears. These things are really big things that are going to benefit her well. I have seen her make some good choices that I’ve seen some “normal people” not do nearly so well at. It makes a parent proud.


#16

I feel that way anytime I see my son reading the ingredients on a package…even if he’s not always reading for the same reasons I do…lol


#17

Because one of my son’s biggest delusions is about his dad’s soon-to-be billionaire status, (lol!) - getting him to budget is very difficult. Also because of what he considers to be his own exalted status he feels he must maintain a certain standard of lifestyle - it has something to do with impressing the spies or the aliens. So frustrating!


#18

I know exactly what you mean. We give thanks for the little things. My son is 32, he’s in the hospital right now, he was rushed by ambulance because he couldn’t speak, muscle rigidity, fever, to find out he had NMS due to his meds. For those of you who don’t know what NMS is, GOOGLE IT. It was the most terrifying 8 days of our lives. Neuroleptic Malignant Syndrome is rare they say but it happens. My son had to be sedated and intubated and put in ICU for 6 days. The first few days he was not breathing on his own and constant fever spikes. They completely washed out his system of anti psychotic drugs, now 3 weeks later he’s on the psych floor with the smallest dosage of meds and he’s alert, bright, more focused. He was way too over medicated. I pray every day and am grateful he’s still on this earth. Even watching him eat a meal is a blessing!! I wish you the best!


#19

This: “Compared to the nightmarish road we began on, this is Nirvana.” I am so with you. And blessed. And thankful.


#20

Catherine- I can understand what you are going through, as I’m facing a lot of the same with my son. I feel that the paranoia is what is at the root of the inability to consider things like jobs and that sort of thing. My son has been on Zyprexa and hated the weight gain side effect, but it did seem to quiet his paranoia enough for him to go on with some kind of life. after a couple of years he felt so confident that he tried to discontinue the meds on his own. It took about a month for the situation to completely deteriorate and he was back in the hospital.
he got out and wanted to try a different psychiatrist so we switched and he also changed to Abilify. So far so good, but the paranoia still remains and he needs to be “peopled up” most of the day. Keep up the struggle. I still believe that there is hope for all of us.