I think back to the '60s when I was in elementary school. Kids with cerebral palsy or downs syndrome were called spaz and retard. There was a general lack of understanding about developmental disabilities, that resulted in prejudice and fear. There was just beginning to be services available for those kids and their families. Children with Downs Syndrome were institutionalized, just as some people suggest our loved ones should be now. Nowadays, it is not uncommon to see a handicapped individual in public, in a school classroom, at a workplace, and there are all kinds of accommodations for them.
Now mental illness is the thing that is misunderstood, about which people lack education, and where services are limited or lacking. I hope that 50 years from now things will have improved as much for people with this disability as those with developmental disabilities.
Not really. I donāt think they have a clue. It is just easier for them to say this and then they donāt have to get involved. Theyāve judged us really whether they admit it or not. So much of mental illness is judged as character flaw, I donāt know how long it will take to change that. And since its judged as character flaw, there is even less empathy for them or the loved ones caring for them. This is how I feel today.
Agreed! I just left my sons house which is just next door and my heart is broken! It literally looks like a war zone! Holes in the walls where he has punched ādemonsā Rotting food left out bc he says someone spit in it and he canāt bring himself to move it. Writing on mirrors that I canāt make out! Iām just numb right now. I donāt know what to do to help him. He wants to move back in with me and his stepdad but Iām not so sure his stepdad would approve! But my son is scared and I believe worse off than he was before we bought that house for him. At the time it seemed like a good idea. He would have his own space but still be close and we would have ours. Now, Iām not so sure that was the right move. And putting him in some facility like everyone keeps saying is not the answer either! There is not even one close anyway! And all they want to do is medicate them till they are zombies! As long as I still can, I will care for him and he will not end up there! He is scared! And so am I! Prayers will be greatly appreciated!!
I know how upsetting this is! Iām sure your heart has just sunk into your stomach.
What is your sonās current meds situation? Is he willing to check into the hospital?
I just reviewed your posts and see that your son has been off his meds. So it is probably expected that this deterioration would happen. In my mind, it would be time for a hospital visit.
How about finding a therapist or psychologist who goes to his house weekly? He should still see a psychiatrist if possible, try injections like Haloperidol, Abilify Maintena, or Invega Sustenna for example. They last a month and may be able to stabilize him for awhile until he decides to take the tablets himself. You could bring him food or like other stuff he needs weekly, if you can afford it someone to clean out the house as well. I think that would help him tremendously. He must feel very scared and alone.
Unfortunately we donāt have those services here! He was on the Invega Sustanne shot for several months and was doing well. However, he did gain a lot of weight! So he told the dr he wanted off. Now he is back on the long list of meds that he will not take! As you know that is one of the hardest things to do is get them to take their meds. Lamictal lithium depacot xanax Percocet lunesta and Iām sure thereās more! I canāt remember them all! I just tried to have a discussion with my husband about some possible solutions and he didnāt want to deal with it and went to bed. So thatās how much support I get from him!! Meanwhile my son is alone and scared! And sadly my husband lost his job end of May and still no job and I suffer severe migraines and canāt work. We help him out with what we can but we are really under attack right now and are all stressed to the max! I pray daily for a answer!! There has got to be some good news soon!!
I understand. With the Invega Sustenna, since it makes him gain weight, would he be willing to join a gym if he were to get on it again? Maybe he would be more social and it would be good for him to be active and get out there.
I wrote this, maybe he could try some of these and it may help him out:
You have cephalalgia (cluster headaches/suicidal headaches), right? I have them too. My neurologist is sending me to a pain management specialist, so Iāll see if anything helps or changes. What medications have you tried?
Sheyelo, that was truly a great idea with the house. Your son might need more care now. We have a similar situation but we made our son a nice private space above my office. It has a private bathroom as well. It is a mess now and we were going in once a week and helping him clean. I take a trash can around and he puts the garbage in it. He smokes inside and puts his cigs out on glass. There might be an ash tray right there but he doesnāt use it. No doubt he would be evicted in the real world. Iāve pleaded with him for safety reasons to stop but he says he doesnāt see it. We are now going up every other day just to stay ahead of the mess.
I havenāt seen holes in the walls yet there but last year he did a bit of damage to our home. He wasnāt on meds at the time. Be careful as this was the time when my son went up to a 5 foot window and punched it. He broke the glass and got a puncture. I told him he needed a stitch and got him in the hospital. We had to do a MIW to keep him there. After ten days, He was actually transferred to state hospital where he was court ordered to take meds. We then filed for guardianship, went to court and the judge granted it. They interviewed our son in the hospital. He was in there awhile as a result. They said the longer they are off meds the longer it takes to stabilize.
Today, He really lives at both places. He comes home in the morning when people show up for work but sometimes goes up during the day. We are working with him as often as we can and seeing improvement. He is doing much better now but is seeking street drugs with a vengeance so I donāt know how long it will last. Tomorrow we are going to power wash a house with my brother. I had better get some rest.
Things can improve and I hope I have given you some hope of that happening in your situation as well. Hang in there and keep us posted please. You are doing the best you can.
Iām on 300 mg daily of topamax. Imitrex and relpak during. Maxalt did not help at all. Pain meds make me too sick. Shots I get are toradol phenegren and nubain. Coconut oil pulling helps some. Daith pierced didnāt work. Canāt afford Botox but I know a few friends who it worked for them at first but has since stopped. I have about 4 a week.
Thank you so much and that does give me hope! Now if I can just get my husband on the same page with me! My son needs less ALONE time and not more supervision is how I see it. Just help managing his meds and knowing heās not in this fight alone would mean so much to him! And Iām so thankful for all yāall on this site!! It is such a blessing!
My husband, who is my sonās stepson, is also someone who doesnāt want to deal with him or help out in any way.
My son lives in a house I purchased near where I work. I go over almost daily to bring groceries, make a quick dinner, and clean up the kitchen a bit when Iām done.
Last year, before he started on Clozaril, there were multiple broken things including a chair thru a window, multiple chairs broken, multiple doors kicked in, the glass top stove shattered, kicked and punched kitchen cabinet doors, and a hole in the kitchen wall.
Window was replaced, he has only one dining room chair now, doors were either repaired or removed, I patched the hole and repainted, I found an inexpensive stove on craigslist (and guilted my husband into picking it up and installing it), and the cabinets are now open style.
This year has been better since he started the clozaril. Of course, unless he gets insight into his illness, there will always be the possibility of him deciding he wonāt take it anymore. Iām not sure why he is still taking it, but Iām very grateful that he does. I think he in some part understands that staying on the med and relatively stable is the only way he will be able to keep living on his own. He has lived in group settings in the past and hates it. (I really canāt blame him for that, given the options available.)
The only one of those that Iāve tried is Toradol, combined with Compazine and Benadryl in the hospital, but intravenously. Takes the headache away for three days. Botox doesnāt work without a constant continuation of every 3 months for at least 2 years or for life.
I think for all the reasons you mentioned I would try to check in more often and definitely tell his doctor. I meant to say that I think this illness changes a lot. I used to say every day is different. When they arenāt on meds it is absolutely true. Take care of yourself too!
My husband is 40 and was just recently diagnosed. For the last year I have felt like his babysitter more than his wife watching him so he wouldnāt self medicate. I am relieved they diagnosed him.Some of the things he would say that he believed was true that I couldnāt convince him that those situations were impossible no I can see how he believed it. I feel bad that I get mad at him for saying and coming with crazing ideas that made no sense but to him they did. I love him and will help him be the father he wants to be to his kids. The father he never had. Thank you for having these forums for the caregivers and the people with Schizophrenia. We all have are struggles(demons) we deal with. But theirs seem more vocal sometimes.
And sadly my husband lost his job end of May and still no job and I suffer severe migraines and canāt work. We help him out with what we can but we are really under attack right now and are all stressed to the max! I pray daily for a answer!! There has got to be some good news soon!!