Tell us how you are today?


#162

@Cerium - That book just looks too sad for me to read. idk - I get so frustrated about the food. I offer store bought and food that I make. I’m also trying the gluten free which is somewhat under control.

Going away is going to be interesting (I’m trying not to stress). Do you have anyone that could check on your daughter so you could go away? Maybe try one day at first. What are your concerns about leaving her alone? At this point, I think I’m more concerned he won’t feed the cat. He seems to do ok without seeing me and is happier not to. He no longer has baseball bats at the doors so that is a move forward as well.


#163

Today, I’m just so sick of living with a person who won’t shower, shampoo, brush his teeth, go to the dentist, get off the couch, stop talking about getting “sniped”, stop asking me if the doors are locked, stop asking me if I did something disgusting to his food. I’m tired and sad that my son is no longer.

And this is after 6 months of Invega Sustenna.

My son had a great future. He was robbed. He’s 21.


#164

@diane R. My daughter has never been violent, thankfully. I am worried she will unravel, and I would be unable to forgive myself if anything happened. I did go 2 years ago, and had someone stay her. Paid for it. She hated it. She does not drive. Needs her morning coffee, Starbucks or McDonalds. We have an aging dog, and worry about leaving him as well.

As for the food, sometimes it seems cheaper to buy then to make. Gluten free is great. My daughter developed diabetes from the meds and sugar intake. It is relatively controlled now.

Thanks for sharing. I really appreciate it.


#165

Hi, Alwayshopeful, I bought that book too. Love it so far, so much information, but very sobering about how dangerous this disease can be.


#166

Hey, just needed some feedback about the increasing worrying my son is doing, I guess you would call it paranoia, seems to be getting so much worse everyday. Today he had to pay the rent and I saw him walk accross the street to the office to pay it and he had the receipt, but he kept worrying the office was going to lose it. He had seen someone he went to high school with while he was in office paying rent and now he thinks this person is going to steal from his apartment. He is always worried someone is trying to steal his credit cards and on and on. He just said that he didn’t want anyone in his apt because he thinks they might steal from him. He is soon to be 23 and does take his 20mg zyprexa everyday. Any have any of this increased worry about everything going on?3


#167

Hello day-by-day and all of you,
It does not seem right that our loved ones are robbed of their future, It just doesn’t seem fair. I am sad for you and the many others who are dealing with similar situations.
My son Lou is 31 years old. We love him and miss him.
Take care, annie


#168

Thank you Annie. I’m sitting here, in the middle of the night on the East coast, absorbing tonight’s events. My son is once again hospitalized.

But this time, as opposed to the previous 3 hospitalizations, I don’t have any faith he’ll come home with any semblance of a future.

I wish I didn’t feel this way, but I do.


#169

Today I am anxious. My son has been on clozapine for almost 2 years now, at a very high dose. They have titrated him up to 600mg per day and have left him at that dose for a year and a half. I know the dangers of this med, especially at this high dose but, he has come around more to himself. No more self harm, damaging my home etc but he still smokes pot, still has some rants with no one. Still writes notes about the people in his head. Anyways, when first diagnosed they said he would be on a therapeutic dose until stable, then lowered to a maintenance dose. This has never happened, nor discussed with me and I have taken the step of contacting the p doc to see what the plan is. I am terrified as you can imagine that the symptoms will step up more strongly, but also terrified to leave him at this dose for much longer. Will see what the Dr. has to say and go from there. Feeling scared today.


#170

Hope all goes well Leiann and he can get on lower dose. My son has been on highest dose of Zyprexa for 3 years and I would like him to get it lowered, but he never wants to. My prayers are with you.


#171

@day to Day and everyone here. First, day to Day. I am sorry to hear your son is hospitalized again. I know how difficult that can be. Our children sadly have a debilitating illness, that impacts their minds and bodies. My daughter will not be who she was before her illness. However, she is still there, and when I allow myself, I can see her in that bright light. The funny, brilliant , kind young woman. I doubt she will ever work, she is too ill. As for the medications, it is a trade off, her new psychiatrist claims. Some medications are so powerful, they can leave the person with bad side effects, liar tartive dis sp, or catotonia sp. my daughter gets up, showers, every so often, goes to the store. This is as good as it will be for today. It took me a long time to accept third. Frankly, I had to hurt bad enough, I was willing to let go. I am relatively peaceful today, even though I cry and have bouts of sadness. We all do.

Have a peaceful day.
Always hopeful


#172

It sucks so much. While he handled time out of town okay, I think we are seeing the decompression now. He was banging things yesterday, I can see the side of the oven has been kicked multiple times. And he sent me a text this morning, ‘I need you to come by this morning for emotional support.’ I can tell he is struggling, but he REFUSES to consider increasing his dose, which is quite low.


#173

My son’s dose has been at 250 for 2.5 years now, and it isnt really doing the trick, but he won’t increase. I think many people tolerate 600mg okay.


#174

I put packing tape on all of the food containers that I left for my son, so that he would feel more protected against tampering. It seemed to do the trick.


#175

I understand how you feel, it can be very hopless at times. I have had many nights without sleep and many tears. All of us here know the feelings you are having. We are all suffering. I hope you can find some comfort here with all of us.
If you would like to read my son’s accident and my sons assualt, you can go to my logs, there is a few post at the beginning about Lou.
Even though we do not know each other, i send you my love. Take care, Annie


#176

Today was a decent day, my brother is currently at a new facility and we had family therapy and it went well. I just miss him and want him to get better. Its hard seeing my mom cry! it breaks my heart because I don’t know what to do…


#177

My brother is currently on 500mg of clozapine, he used to be down to 50mg at one point and was doing so well. We’re currently trying to get the doctors to reduce medicine because as one of the side effects is seizures which has happened 3 times now


#178

Hi everyone, It sounds like everyone had typical sz days, which always seem to have worry about our loved ones. My day with my son was decent,we ran errands and took the dog to vet, and he took a shower and played video games and watched UTube videos. I was with him for the afternoon, but when I leave I always feel so sad that he spends so much of his time alone, but am grateful he has his sweet dog.Even after a “good” sz day, there is always the lingering worry about the next shoe dropping.


#179

Dear @Day-by-Day I’m in the same boat with my son hospitalized again. He’s not well enough to visit but I hope to see him by Friday. He had been doing alright, then the other shoe dropped. To paraphrase @Hope from a different thread, hereabouts it sometimes feels like it rains shoes!

I’m determined to do something nice for myself this weekend.


#180

Hi Amysfo. I’m sorry to hear of your son’s continued troubles. While he’s in the hospital, I hope your son can get the help he needs, and he can learn to better manage his illness. It’s such an ongoing challenge.

Do take some time for yourself. Rest. Enjoy the spring air.


#181

Amy’s for,
Hi,
While our children are hospitalized m they are being treated, and getting the help they need. When my daughter was hospitalized, initially she did not want us there, so we kept the visit brief. Eventually, she caved.

It is good to take time for self care whenever you can. Our time is precious.

Have a peaceful day,
Always Hopeful