Hi Annie,
Personally, I don’t think the pain ever goes away, I do think we get better at carrying our pain and grieving around with us. I don’t know if that means we become stronger or if it just means we eventually figure out how to cope with it in our lives.
Hello all,
I’m learning to cope with what has happened to my son. I think the hardest thing for me is that Lou is not completely innocent. That makes me sad. I thank you all for your kindness. Your consideration towards my son is greatly appreciated and on that note it makes me happy to be here. Limbo land
AnnieNorCal
Well. I am mystified and irritated.
A family friend and I went to visit my son at the state hospital yesterday. It’s “holiday meal” time and we can bring home cooked food as long as it is in plastic and there are no sharp objects or glass. Usually it is restaurant or grocery store food only and if beverages are in glass they have you pour it into paper cups and then confiscate the glass container.
The security rules involve signing in (after waiting, and going through three locked doors), being “wanded”, and having the contents of the bag of food checked against the request form my son submitted the week before the visit. No purses or any personal things can come in to the unit. No phones, no sharp objects, nothing comes in that hasn’t been written by my son on the visit request form and approved by some higher-up.
This is the standard procedure, cumbersome and inefficient and slightly degrading- I go through it every week, on Friday evening. I understand the need for rules but the process is time consuming and makes me feel like a prisoner or a patient and some of the rules are downright unnecessary on this step down ward. Nevertheless, I follow them without much comment since there isn’t much choice if i want to see my son.
Yesterday, however, was different. No waiting at the gate, quick sign in, NO wanding, NO examination of our bag, fast escort to the ward. The whole process was ten minutes faster than usual.
On the ward, several other families were visiting and eating. I noticed that the group at the table next to us (a woman and her husband and their family member) were looking at pictures on a cell phone that the woman had taken out of a small fanny pack she wore. A staff member was in the room at the time and seemed to notice but said nothing.
AND I had brought bottled coffee for my son in a glass bottle. No one asked us to pour it into cups.
We had a lovely visit with soup and salad and Scrabble, left at the appointed time with other families. As we went down the elevator I asked the woman with the cell phone how she got it and her fanny pack onto the ward. She said no one checked them either and she didn’t know it was forbidden.
All I can say is that I will now be visiting on Sunday when, apparently, the security rules do not apply.
WAmac and all
Really appreciate your response. Hopefully Lou will get back on a treatment plan. We were speaking with him before the transfer. So I’m hopeful. Take care AnnieNorCal
Bureaucracy will always be mystifying and irritating. During the years when my son was having frequent hospitalizations, I saw the rules change from - any food, just have it checked, to packaged and sealed foods only, to no food at all, period.
At first I was able to bring things for my son to the unit, where it would be checked and then I could give it to him. It changed to having everything taken prior to going to the unit and never knowing if he would actually get the things I brought.
@AnnieNorCal - I’m sorry for what you are going through. We do somehow manage to cope as @hope says. We lost my nephew when he was 27 (17 years ago) It was a shock needless to say and totally unexpected. After six months I still couldn’t move through it. Finally, his mother (who had done a lot of therapy) told me that it isn’t something i was going to get over. It is just a part of my heart that remains broken and we learn to live with that. Still missing him.
Im feeling a little better today. I do have alot to be thankful for concerning my son. Lou has been treated with the best of compassion from all the doctors and judicial system.
Take care all, AnnieNorCal
My frustration is that they won’t let me bring him healthy, fresh food. He was raised eating organically from our garden, he doesn’t eat junk food (except for pizza 
), and I believe that persons recovering from psychosis benefit from eating good food. It would seem that they would welcome families who bring in healthful meals and treats, but no. It IS the largest state hospital in the Western United States and the rules are the rules. If only they were consistent and sensible…
I am so very sorry for your loss. He was so young.
I do understand and appreciate the quote from his mother. It is very appropriate to all kinds of grief and the losses we all face. Thank you for those wise words.
Thank you. He was a great kid! It was the worst thing that every happened to me.
I am good and went looking for this thread - how did we let it get so far down the line?
Presents are wrapped - dogs are bathed!
@hope
Thanks for bumping this one!
Hope that you’re all set for a lazy sunday.
I’m keeping up with work. It’s not as complicated as I had feared, which naturally has me starting to think about what’s next.
My girlfriend and I have decided to research different places in the US that we’d like to live and feel out what kind of work opportunities are in those areas. That’s a big adventure to take on, but we are both determined and goal-oriented. I’m positive that this will be the beginning of an exciting new chapter for each of us!
I love the idea of you two exploring living place options. There are so many wonderful and different places to live. What fun this will be as you share the adventure. Big city, small city, country, walk everywhere, drive everywhere, lots of beautiful places to visit nearby- so many choices!
I actually slept for 6 hours last night, and 8 hours the night before. Wow, what a difference to be somewhat rested.
How am I today? Hanging on. The holiday season has been a challenge for a few years now. We (my husband, my daughter, and myself) work hard to reach “acceptance” about our 22 year old son’s illness. Some days are better than others.
My son is currently stable, for the most part, as he’s been on Invega Sustenna for 15 months now. He’s mostly house-bound, in our family’s home, due to our cold New England weather, his paranoia, and his negative symptom of zero motivation. Regardless, I do know we are fortunate, as I know many of you are currently in the trenches, dealing with unmedicated loved ones. I know that everything about that type of existence includes all kinds of fear and worry. I’m sorry for all of you who are dealing with that scenario. We’ve been there.
Thank you to everyone here. None of us ever thought we’d be living this life, but here we are. WE are not alone. Peace.
Today, we are doing alright. My daughter has been stable, thankfully. Our 12 year old dog, who belonged to my late husband has been ill… vet suspects nose cancer. Our daughter loves him, and says he is fine. Actually, thanks to her instincts, and love for him, we did not put him down, and hopefully, he will be with us through the holidays. It will be the three of us for the holidays, and it will be fine since we are together.
May you have peace of mind for the coming days.
Hi. New to forum. Long story short. I’ve been married to my wife for 24 years. She is undiagnosed unmedicated sz. I started to notice her odd behavior shortly before our only daughter was born in 2013.
Our daughter went to live with my wife’s sister and her family when she was three and a half years old, due to my wife’s condition and the fact that my daughter was behind in speech. We thought that having them separated would also help motivate my wife to seek an evaluation and therapy, but so far that hasn’t happened. Now my wife legally can’t have visitation until she seeks evaluation and treatment. I see my daughter twice a week for two to four hours at a time. I drive 50 miles one way to see her and then go to work and then go home.
Our daughter is now a little over five years old, and has lived away from us for over one and a half years. My daughter is well cared for and loved by her Aunt & Uncle and family. My daughter is in developmental preschool and has speech therapy once a week. My sister-in-law is a stay-at-home Mom who has 2 degrees, one of them being in Education.
We tried several things to try to get my wife to see a doctor. Including a sheriff coming over to check on her but to no avail. I’ll check out the book about this is the and look into the NAMI offerings. For now I’m just taking it one day at a time, I’m trying to not stress out my wife while still emphasizing that she needs to do what she needs to do to see our daughter. My wife hasn’t had too many major episodes yet although she did go around our neighborhood calling out some guys name for a while but that has stopped.
My heart goes out to everyone on this forum, especially the parents with affected children particularly the young ones. Seasons greetings to all and may you have a safe Holiday and New year. Best regards.
Welcome to this forum, @Latestart . We all understand the twists and turns of life that must occur when this illness strikes. I am happy that your daughter has good care, and I am glad that you found this forum for support. It is a long road to help someone get onto meds and stable if they don’t believe the meds are needed. I am glad you are reading and will be using NAMI’s help. Reading on this forum was the best support I found and has helped me tremendously. My daughter recently was arrested, hospitalized and forced onto a med that has helped her symptoms almost totally abate. I am hoping she will be forced to continue the meds, but we will see what the system does. I had the courage to talk to the judge due to NAMI and this forum. I hope that somehow your wife can find a way to follow the recommendations for her own eval and treatment with your help. My heart goes out to you and her and your daughter and the aunt and uncle helping. Seasons greetings, be safe, and I hope this year is the best for you.
Today was good in a way that many on this forum understand.
It was good because I worked a full day and got things accomplished at work.
Good because my SzA brother called me and invited me to his place to help him talk through some depression.
Good because he reached out to me before things got desperate.
Good because we were able to talk about it.
It’s all too easy to put a negative spin on those things.
I have the capability and the option to work, rather than wishing I could pay the bills.
My brother is responsible enough to ask for company when he needs it, rather than waiting for a disaster to happen first.
My girlfriend and my family are understanding and suportive enough to know that these are good things, to see the bigger picture.
I had the cashier at the grocery store complain to me about working Christmas eve. Rather than mention my own schedule, or try to change her mind about it, I simply thought to myself about how many people would love to have that “problem”.
When I talked to my girlfriend, she was at first apologetic about my not having time to myself right after work. I told her I’d always prefer that the people I care about ask for help before things turn bad. That I’m grateful to have the perspective and the dependability to be there for people I care about.
So now, as I relax after dinner, I get to reflect on how my choices impact the people I care about. I get to know that goals, hopes and dreams are made of simple day-to-day stuff like sitting down and talking, making a trip to the grocery store together, and reminding each other that we are loved, valuable, decent people who deserve comfort and security.
No better time for it than during the holidays.
Merry Christmas, family forum.
To you and your loved ones.
A bittersweet day. My adult child with sz is doing well with medication and other supports. Family dinner went nicely.
My husband, my child with sz’s father, is divorcing me. This is our last Christmas as a legally married couple.
I feel like we as a family already received the miracle of effective (court-ordered) treatment/ management of this devastating illness. My beloved child is out with friends right now.
Seven years since the illness started. I feel like I can’t remember the person I was in the life before the illness. I am extremely grateful along with a kind of sadness that I don’t even wish was happiness. A sadness that just has to be (for now).