Family and Caregiver Schizophrenia Discussion Forum

Newby, where do I get started


#1

My 19 y/o son has been recently diagnosis with SZ after 2 years of me trying to convince him to get some help. On his released from his 1st and only inpatient stay, his father had agreed to help out with housing for our son. We have been divoiced for over 10years and I had always had primary physical custody of our son during those years . Because I had recently moved my oldest daughter and her 3 minor children into my home, I really had no space in my home for that my son to return there since he had moved into his own place 3 months prior which he was evicted from 1 week prior to his hospitalization. My son’s father found every excuse under the sun to why he will not be able to take our son into his home after allowing him to stay with me for the first 2 weeks after discharge as we agreed. Now my son present in the home is causing all kind of friction and disruption in the home. My daughter is resentful and even the children are bothered by his sometimes irrational behaviors. He doesn’t pose a threat to anyone, but dealing with paranoia, anxiety and fear of being around people. He runs to hide whenever some one approaches an area or room he is occupying, chain smokes cigarettes and always accusing someone of taking about him. He has to sleep on the couch and when the kids are up and moving around the house, he retreats to my bedroom, which give me no break or privacy. I feel guilty because I’m stresses out, he’s stressed out trying to understand his diagnosis and the whole family is stressed and lifestyle and routine has changed. He has not been able to hold down a job for almost 2 years due to his symptoms and behaviors. I was told to apply for SSI and Medicare for him so he could be able get some financial help to obtain his own place, but I don’t know where to started. I’t unfair to ask everyone else in the house to deal with his SZ, but I’m 100% willing to helping and supporting him throughout his care, transport and treatments. Where do I start???.


#2

I know this is a hard situation on all of you…

Where do you start?

Well first, a lot of what you describe… the withdraw from people, the fear that everyone is talking about him, the anxiety… pretty common with us.

So I’d say, first… get to know what part of this is the illness and then it won’t seem so scary and odd…

http://schizophrenia.com/diag.php - symptoms

http://schizophrenia.com/media/ - recomended books

The smoking is pretty common too…

http://www.schizophrenia.com/smoke.htm - smoking and SZ

You will also need some advice and some support as well…

www.nami.org - support groups, education and other help

Also look into the resources that your area might have… you might be surprised by visiting nurses… day hospitals… case workers and a lot of other resources so you don’t have to go through the most confusing illness alone with your son.

http://schizophrenia.com/coping.html - support groups

You know… most of all… please note that there are many of us who do get over this… it’s a major struggle but it does happen with early treatment, meds, not giving up on meds… therapy and all sorts of other ideas…

Don’t give up hope…

http://schizophrenia.com/family.php = recovery tips

http://schizophrenia.com/success.php - success stories.

Good luck and I’m rooting for you… the more you know and understand about this illness the easier it will be for your daughter and her children to help and keep the family together. Again… it’s hard work… but every little bit helps.


#3

Call the social security office and request the application. Applying for ssi is very easy. They will mail the application. They will need to hear from him (phone) that he gives you concent to help with the filing and they will send two applications if he is not able to do it himself. One for him and one for you, i filled out both and he signed his. Let me know if you have any more questions. We were approved in 4 months. They will pull all of his dr and hospital records, that you list on app. It is not a slow process. Prayers to your family.


#4

thought i would say hi.
take care


#5

SurprisedJ gave you a lot of great resources. SSI will open up all kinds of doors and treatment options for him-so I’d make that a big priority. You can also start the application process online. Also day to day coping strategies for him and your family. Also, take care of yourself through this in every way you can-you have a lot on your plate. When you need a break can you take a walk or go to a coffee shop? Maybe a friend’s or neighbor’s house for a little bit?

He can improve-but it’s a process, sometimes so much slower than anyone would like. The good news is now he’s got a diagnosis, it’s often the first step to get the help he needs to improve! Please let me know if there is anything I can do to help! I am so sorry your family is going through this.


#6

He is only 19 and to be honest, I’m getting the feeling no one really wants him (not you, not his father) and that’s rather sad. I would make whatever adjustments necessary to ensure he was at home with me while at this critical juncture - he needs help, the help of family, without focusing on why he’s an inconvenience. It’s not unfair to ask everyone in the house to deal with his SZ - he’s your teenage son. Provided he’s not violent or abusive or overly inappropriate, you need to band together as a family. This condition can get a lot worse when people are left to their own devices. If he was my son, I would insist he stay, not push him out the door.

Access the resources that have been suggested…he’s not just a walking mental illness, he’s the kid you carried around for 9 months and he needs you, even though it’s inconvenient.


#7

It’s a hard situation. He runs into your bed room because he feels safe there. It takes a while for medication to work properly. How long has he been on meds? If several months, you need to talk to his pdoc to up the meds or change it. For me it took about a month to notice a differance in paranoia and delusions disappearing, I could see them as delusions and could ignore them.


#8

http://forum.schizophrenia.com/t/dont-know-where-to-start/12969?u=barbiebf


#9

believe it or not I’m a health care professional and respect and recognizes MH illness no different than a physical illness such a diabetes or hypertension. It’s just a lot different when it hit close to home and the stress, guilt and frustration becomes overwhelming after so many years of trying to manage and properly identify the cause of his behaviors. My son has just recently been diagnosed this past month. I have been his greatest advocate for several years since he was diagnosed with ADHD at the age of 6. For several years of obtaining ongoing counseling, evaluations ,medication management and maintaining a 1:1 relationship with just about everyone in his schools in order to help him with multiple behavioral health issues, I am glad that we have been able to identify what is going and can know address it with the proper medical and counseling management. I came to this forum, not to complain about my son, but as a venue to vent some of the feelings-stress, frustrations and guilt because I was suddenly experiencing a loss of control and feeling like I was failing my child- the one I love and carried around for 9 months. I recognizes he is going to need me more than ever and I plan to do everything in my power to be there for him. I guess I was seeking some advise from other parents who may have had to deal with my similar situation when their child was first diagnosed. As of today, I choose to seek some help for what I recognizes is my own depression- medication management and counseling. It’s sometimes hard to think rational and see things clearly when you are dealing with unresolved emotions, stress, anxiety and fearing the unknown. The unknown for me at this time is understanding the best way to help my son reach his goal of living and managing his SZ so he may have a functional existence. This is not my goal, but his own words to me. I appreciate all the replies to my posting and will take ever suggestion to heart.


#10

Thank you so much for this information. I will be following up on the resources offered. I know this is going to be a hard journey, but I’ll be giving it my 100% effort.


#11

Thanks for this information. He has expressed to me that he wants to feels a sense of independence and live on his own. I’m aware that this does not mean that he will not still need me for emotional and possibly physical support until he is stable enough to manage on his own. I feel if he feels there is a possibility to being independent he may be more compliant with his treatment plan of care with my support.


#12

He has only been on his meds for 3 week. I’ve been able to recognize that he feels safe with me and being in my presents because he understands that I don’t judge him and has always been in his corner. I make sure I keep communications as open and honest as I can with him and try to redirect him when he starts verbalizing delusional thoughts and even encourage him to face some of his fears. I’m careful not to push him, but to slowly redirect him. Thank you for you advise.


#13

A lot of good advice here. The only thing I will add – as someone with SZ who has attained a fair degree of recovery – is not to give up hope. Things can look pretty bad, especially at the beginning right around the time of diagnosis. It takes time for meds to work. It takes time for the person with SZ to get untwisted from delusional thinking, to gain insight, to regain function. Not everyone may make it back to where people want them to be, but I’ve yet to see those who are med compliant and who work towards recovery fail to make significant gains.

It will get better! :smile:

10-96


#14

All these responses and support to my posting have been a great help. I know feel I’m better equipped and informed to where to start. I appreciate the opportunity to have a place where I can share my experiences and in turn hear from others regarding there experiences and knowledge of SZ and resources. To know others have been through living w/ SZ or a family member living w/ SZ, helps to know we are not alone in this journey. Thank you for sharing.


#15

I am glad you are getting help. Caregiving can cause so much stress, depression, anxiety-and yet carries so much responsibility. You are not alone.


#16

thinking of you…


#17

I understand that, should he get ssi, he will also get medical benefits. One thing I had to remember was should he get well enough to work, he could return the ssi. If you file before 22 he will be considered disabled as a child if you are in the u.s. That status will give him your or husbands SSDI when either retire, die or become disabled. My son still can’t work, so it has been a life saver. However the medical is what I am really thankful for. I was keeping him on my insurance, and that doubled. I can breathe a little easier with one less thing. I think my son or anyones will feel better about them selves the more independent they are. Keep up your strength for him. Don’t give up hope for him. That is the only thing that keeps me motivated when I don’t have the strength.


#18

First thing is to apply for disability. They routinely turn you down on your first application. Then you need to get a lawyer. He will take a large portion of the back pay you get. (They give you back pay starting from the date of your first application.) That is the most likely way of applying. It will take a while.