Am I Right or wrong?


#1

My son doesn’t do anything all day. He’s doing ok on his meds. My issue is the withdrawal and isolation. I want to try to force him to go to CBT, job training for the disabled, or get a job. It can’t be good for him to sit in the house all day. Any suggestions?


#2

when you ask to get a job what does he say.
does your son takes medicine daily?

My son has been telling in the past 5 months that I caused him to be disabled since I did the Guardianship.
he would say: you disabled me and now you want me to work.
he keeps saying that he has a headache and he thinks there is something in his head. he did MRI and I also took him to ER couple times and did not find anything.
gave up asking him to get a job.


#3

My son says you know I can’t work because of my condition. He says he feels funny inside. I think it’s some type of anxiety.


#5

I use to feel the same way that you do but after trying many different times and in many different ways to “force” my son into some kind of activity. I found that each time he was forced to do something he didn’t readily want to do he would have a lot of anxiety that would build and he would eventually lose stability, sometimes a delusion would re-appear or some voices would return or some other kind of unhealthy behavior. I realized he had to lead the way with this…on what he could do and what he could not do.

Lack of motivation, self direction and ambition are hallmarks of this illness. My son gets the most done when I do things with him. We shop together, exercise together, walk in the parks together and other activities, if I don’t want to do something, I don’t— but then often he won’t either. In rare cases if it is something we have done together a lot like walk or go to the gym, and I am home unable to go he might go on his own then. I leave it up to him, I would rather have him calm and stable and relatively at peace than have him productive by societies standards.

Productive to me (now) is when he is compliant on his meds, showers, makes his own meal, cleans up after himself, takes out the trash and helps with the laundry and still goes for a walk with me and maybe watches a movie with me in the evening and washes the dishes after dinner. I count that as a very productive day.


#6

Thanks Catherine, that helps.


#7

I have the exact same issues with my son s social isolation and staying in his room and withdrawing from most activities. It has been 2 years now and I am getting sort of used to this, but it still greatly bothers me. I run errands with my son and we go to lunch 2 or 3 days a week. Lately I have found he is most comfortable talking only with me and not other family members. Sometimes he talks a lot about a new video game or something he wants to buy or whatever. but then the next day he can be very quiet and does not want to talk at all. A good day is running a few errands and getting lunch. We used to go to the dog park to walk almost everyday, but last week he said the dog park gives him anxiety so we haven t gone since. I am very concerned about his lack of exercise but nothing I can do about it. I guess all you can do is change your expectations and be happy for the good days and moments.I pray for a new med that will be the miracle cure!


#8

Thanks Catherine for all your helpful input. I do find pressuring and nagging him only causes bad anxiety and even if I can convince him to go somewhere that he isn’t that comfortable with , we usually have to leave because he gets bad anxiety.


#9

I know the sons mentioned here have a much more severe form of the illness than I do, but I will say this, that I would withdraw and isolate myself as much as I was allowed to. And yes, when my family forced me into socializing and made go places with them out in public, I felt extremely uncomfortable and I felt a lot of stress, anxiety, outright fear and terror, but it ended up being good for me in the end, because I became desensitized to it over time and built up a tolerance to it. And I re-learned how to act in public, what to do, what not to do, what to say, what not to say, through lots of experiences out in public. Getting out of that bedroom and out of my comfort zone did me a lot of good. As for work, they made it clear that not working was not an option. They made it clear that if I stayed home all day, I would still be working all day long, but I wouldn’t get paid for it. My Mom had me constantly cleaning the house, dusting furniture, sweeping and mopping the floor, cleaning the windows (inside and out), washing dishes, doing laundry, mowing the yard (with a non-motorized push mower, really got me in shape), sweeping the porches, raking leaves, etc.


#10

Dreaming of the day when this could happen with my son. Thank you for giving hope.


#11

Never stop dreaming my friend. It takes time but it happens. :slight_smile:


#12

My son has tried working and failed and each time he fails he becomes very depressed. He still mentions getting a job but then also states he knows it won’t last long. The last period of working (almost 3 months full time) he became very delusional and kept finding signs of danger in everyday conversation. However, he does work around his home and while it takes a while to get chores done, for the most part, he gets them done. I think we need to relearn how to measure success with our family members who have this illness. I also care for an elderly parent who has mild dementia and have learned to change expectations to what she can do not what I want done. Am I always patient…nope. But that is what I have to work on. :slight_smile:


#13

Reading the heading of the post: Am I right or wrong?

I try to ask myself: Is this working for our family or is it not working?

All families are different and everyone has unique needs.


#14

I agree with that statement that “we have to relearn how to measure success…” In the very beginning of this journey with my son and for maybe the next 4 or 5 years afterward, I was always looking for a sign that I could get him into classes, or get him into a part time job, or a group activity thing, anything really that seemed “normal” (whatever normal is) and seemed like more progress or growth (as we learn it through our lives) each time I pushed something, he might try it as best he could and then it would go wrong or he might just devolve and become unstable again…depending on the severity of the stress he was feeling…he wanted to work and wanted his own independence but eventually I think even he had to admit that it wasn’t going to work out.

I think the hardest thing for me and him was realizing we needed to get real comfortable with being a “team” he couldn’t change as much as I could so I scrutinized myself and became a lot less controlling in areas that weren’t going to end up in total disaster (very little does these days-thankfully) - but maybe things will be just a mild nuisance…I decided mild nuisance is workable…and I relaxed and I found my sense of humor again, even though it can be a bit dark at times it’s still funny and my son and I share that kind of humor…

After more than 12 years on this roller coaster ride I am STILL seeing improvements in him --little ones. He is more mindful of what he eats now, and getting his exercise in (so long as I go too) and he has lost a good bit of weight which I am excited about, he at one time was almost 310 and now he is about 270 and still losing, I told him when he hits 250 he gets a new mountain bike (250 is the weight limit on most all of them)

Discovering his responsibility with a bicycle will be a new adventure and a bit scary because sometimes he doesn’t pay as close attention as I think he should but we will cross that bridge when it comes. He also has become very empathetic at times towards my health, asking me about my diabetes and such which is really something, and really makes me feel loved back. He still won’t shower more than twice a week or brush his teeth more than once a day, but he is stable most all the time and we get along like loving roommates with a lot of mutual respect. I know that this is all a gift and to not take it for granted as I read so many stories of medicines stopping their effectiveness suddenly and without warning. I pray that never happens.

Today I am just truly grateful and so glad I fought as hard as I did to turn things around when I was told that everything was hopeless. I love that your screen name is “thereisalwayshope” because I couldn’t agree more. :sunflower:


#15

I totally agree with you! Our ill loved ones are individuals first with similar symptoms but with their own personality mixed in at times - which demands different things from us from one day to the next. On good days for my son I can see glimpses of his old self but I keep reassuring him that when he’s stable and his meds are figured out he maybe can try working again- as he really wants to at times because I think he feels guilty not paying his own way in life. Thank goodness he just got his SSI approved and received some of his back payment deposited so he’s feeling less pressure and stressed about not having his own money. But now he’s talking about buying a car - which makes me very nervous!


#16

Thanks! Sometimes it is the only thing we have to hold onto…


#17

My granddaughter’s psychologist and psychiatrist keep saying we need to move towards employment, but it’s so much easier said than done. We went the vocational rehab route, got her evaluated. She went to a company that observed her before placement. She tried, after 2 hours at the job, she totally came apart. Anxiety completely overwhelmed her. She went mentally downhill from there for a while. She is better now and willing to be re-evaluated for possibly working with a job coach. As you all said, the closer she gets to a job, the higher the anxiety level. Motivation is always lacking. She will do things with me and I think she would do better if I did things with her all the time. Unfortunately, I still work full-time (or as full-time as I can with her appointments and other needs). I could retire but I am hesitant to give up the job I love. It’s a difficult decision.


#18

@Catherine - I just thought about your technique last night. My son just got home after 6 weeks (hospital and transition home). He’s been applying and getting some interviews. Yesterday, he was working on his room. I’m pretty sure he stayed home all day. I tried to get him to walk to the clubhouse with me to see if it’s changed (we just moved back to our condo). I just put it out there and he said he wasn’t interested. I said ok. But I think I will just keep offering and telling him it would be nice to have company. Hopefully, some day he will join. I believe it was you who said you kept offering and eventually he started going to the gym with you.


#19

Indeed! that is just what I do and whether it takes weeks- months or years…I see enough small successes along the way that I believe it is worth my while to keep at the ‘broken record’ as I call it…so long as I do it calmly and maybe with some love and humor and not too too often it doesn’t phase him that I’ve said it so many times…then one day I get a yes! Good luck to you! (wishing you many yes’s to come! ) :slight_smile: PS: currently I am determined to get him to the pool with me even just once this summer! wish me luck!


#20

I’m using this strategy as well. I just keep putting the ideas out there: going to the Clubhouse, taking a walk in the neighborhood, or visiting the dog park. Trust is building. Calmness is increasing. It takes ongoing effort. It takes so much patience. I hope I can sustain this. I guess I have to. What choice do I have? There isn’t one. This is what a caregiver does.

Again, I hope I can sustain this. The broken record.

It’s not the life I thought I would have. I’m still grieving that loss. I guess in time the disappointment will lessen.


#21

Every so often for three years, I asked my family member whether or not they wanted to join me on a walk in the neighborhood. Yes, three years until they joined me.