Other kids who lead normal lives


#21

You are not a bad person…you just a great Mom! That has happened to me many times, lunch time with my co-workers,talking about their kids achieving many good things, marriages, travel, some of them talked about great news of becoming grandparents and it breaks my heart. Sometimes, I end up crying a little bit in the restroom and pray for my son and also for their kids, so they can continue having a good life, and do the best I can for my son, I have to believe that somehow this is good for right now.
God bless you !


#22

My son was diagnosed with schizoaffective disorder fourteen years ago. For a while, I felt life was not fair when I saw young people beginning their careers, enjoying life with friends, and having girlfriends/boyfriends. Life is not fair. This is out of my control. Now I focus on what my son’s capacities are. I ask him to contribute by helping take care of our house. This seems to give him some purpose. I have accepted that my son has social and career limitations. Of course, this makes me feel sad for him. However, I can offer my support, and “detach” in order that I recognize that I need to take care of myself so that I can help my son.


#23

No, you are not a bad person. Likely, most of us with a Schizophrenic child feel the same. I do, and am not jealous by nature. So, nice to have this group who understands. The general public csn’t possibly understand our daily challenges. Hugs to you and your children!


#24

I know what you mean and I think we all feel that way at times. We all want our children to be happy with life and sometimes we can’t help but look at others and think their children live normal lives . My deceased husband said it once that he was more proud of our daughter’s travel through life with the hardships she faces than he would if she had graduated from college without those challenges. He would always encourage her and compliment on her accomplishments. I am not gifted in that way and we miss him. But I am doing better at seeing my daughter (and me!) in a more positive light. I get support from many on Facebook. So many people have problems that they are working through and when they share happy news, I rejoice with them. Then I see my daughter’s best friend from high school (also 1st cousin who lived next door) ignore her after her illness began and go on to college, a job and is now engaged. It hurts me sometimes, but it always hurts my daughter. It makes me sad that my daughter misses out on so much. But you nor I am a bad person because we sometimes feel this way. It’s a constant struggle to make our lives as normal as possible. You are a compassionate mother and that is a good thing.


#25

@igarcia thank you, we are all doing the best that we can. You’re a great mom too! There are many times I felt like just giving up, but how can I? I look @ my son, and how can I possibly leave him? So so sad


#26

I can totally empathize with you, it is so painful and yes hard to hear when others are doing better or living a so called “normal life”. I am not sure we will ever understand WHY people are afflicted with this illness. As some of you may have already read, I unofficially adopted a young man 6 years ago who had no family, history of trauma and abandonment and I was his worker in a transitional housing program for former foster youth, we connected, he trusted me and I seen how he had HOPE when he knew I was there for him unconditionally. He did pretty good for about 4 years, since then, he has declined in last year to full blown what we think is schizoaffective, refuses meds as he clearly has Anosognosia (lack of awareness of being sick), insists all that he believes is true and full blown paranoia. The weight of his illness is overwhelming and at times so frustrating. I scream to God… WHY would someone have to live their lives like that, it is cruel and so unfair. What I can say is that I have learned and continue to educate myself about mental illness and although it does not change the facts, it helps me to deal and understand with more compassion and empathy for everyone dealing with this situation. I have had so many of my friends and others tell me I need to kick him out of our homes and let it go which would make him homeless, that is something I struggle with every day and refuse to give up on him. I daily visualize him healthy and happy, it is all I can do besides be there for him when he allows. It is not their fault they are sick and I certainly don’t think they would chose to live like this if they had a choice. I have so much respect for all of you dealing with this in the best way we know how. It has been so helpful to me to read your stories and have someone understand mine. Blessings to ALL.!


#27

Its worth remembering that everyone has or will have life problems to deal with. Seeing someone elses child going to college when yours cant is not a sign of failure. They will face their own difficulties too.

However, this illness is definitely one of the most difficult to live with. Both for the sufferer and the carers. Carers do need extremely well organised regular respite to live well and give their best. That alone will allow them to continue. Please make that your priority next to caring for your loved one.


#28

Mbheart,
they say bad things happens to good people. Do you take it very hard. try to ignore social media pictures, images, advertisements. Sometimes I feel the same way that I want to deactivate FB acount but I control when to check my FB Account. when I feel down I pray and ask God for Guidance. Also, I heard that Meditation help.
you still should be blessed that your son is alive and well and you have the opportunity to serve him. Do not look down at your life. everyone has a Cross to bear.
even the people that you think have everything going for them, they probably have challenging in their lifes but they do not talk about it.
Pray and meditate and accept your life whatever it is. be Thankful and God will lead on…


#29

I do cry at times and ask God for help then I tell myself that I am alive and I am strong and I am here to Serve my son and make his life as Comfortable as I can possibly can.
I have been angry because many relatives stopped calling me after knowing that my son is ill. I have been keeping a low profile and working 2 jobs to provide to a family friend in California who visits my son like 2 to 3 times a week. My son is currently is a Rehabilitation facility an I visit him like every 3 months.
All my life is being planning around him. I am trying to sell a property and get my share of another property and consolidate all my assets and in couple years, I will be moving to be close to my Son and I want to serve him and love him every day as long I live. He does not deserve this destiny but I want believe he will get better as he gets older. Prayers and hope is what keep us alive !


#30

Even our son, in his extreme thought disorder, recently said “I haven’t been doing much this semester. I should be doing more.” Note that he has not been in school for two years (he actually managed to graduate from college), but he realizes that things are not right and he senses that there should be something more. Bad things happen to everyone at some point or another. We have hope for a better future but recognize that life is not free from pain and trauma. We have this underlying strength in relying on God IN the middle of the storm even though the storm is still raging. There are so many other tragedies and illnesses and things that can “go wrong”. In this world there is no such thing as a “perfect” life. But it is still hard.


#31

I would like to get my son interested in vocational rehab services. The roadblock I have with that is that his delusions and illusions of grandeur make it difficult for him to consider a basic job.


#32

Here are more “reminders” from NAMI’s Family to Family. I am rereading Family to Family information for another family member. I keep finding this stuff and wanting to post it somewhere for folks who haven’t been able to attend the classes.

First in regards to their lives moving forward…

  1. It is important to encourage independent behavior. Ask your ill family member what they feel like they are ready to do. Plans for progress in small steps have a better chance of success. Make short-term plans and goals and be prepared for a changes in directions and retreats. Progress in brain disorders requires flexibility. It means giving up our zeal for progress measured by normal standards. There is lots more danger in pushing than there is in waiting. When they are ready, they move.

(I thought the last sentence was the most important - “when they are ready, they move”) Our co-leader said if they state their goal would be to have a job/ go back to school, step one would be showering and getting dressed in clothes suitable each day. Actually looking for a job or a class to take comes much later. For our co-leader’s son, step one was showering, but it was all towards his goal of going back to school. And each small step accomplished creates a mindset of success. She said we really do have to break the steps down into increments.

Second - to get our lives moving forward as well…

It doesn’t help to cling to the past, or dwell on “what might have been”. The best gift we can offer is to accept that the brain disorder is a fact of life of someone we love, and look ahead with hope to the future. It is important to tell our family members that brain disorders make life difficult, but not impossible. This is only the way it is now; things can be better. People come out of these disorders, people get better. Family members can help keep the future alive; most people with brain disorders do struggle on and rebuild their lives.

Having posted that I think its important to point out the NAMI does recognize our grief.

“The course is predicated on a primary assumption: Families need help coming to terms with the tragic losses in human interaction, communication, and relationship that brain disorders impose.”

NAMI always recognizes that our grief for the loss of our children to a brain disorder is often our greatest struggle - our grief is a challenging and often overwhelming burden.


#33

On FB my life looks pretty good- just sayin’. Most of you know these past 8 years have been very difficult with my son. I also find out that several people on FB are going through very difficult times, but in FB they look like things are great.


#34

I like the way you worded this… I hadn’t looked at it that way.


#35

Any opportunity to talk about real world, personal goals and desires can be cherished moments for family. I suspect the DX’d person doesn’t feel the gravity of these realizations at the time that they occur more often than not, but they matter nonetheless.
I very recently used to struggle to be patient when my brother had trouble maintaining a single concept in conversation. I had to remind myself that his world was much more distracted and chaotic than mine almost all the time.
But I think the effort is very much worth it.
To not ask for anything of him outside trying to be a good roommate. To instead spend that time asking what he wants, how he might get it and reminding him that he does deserve those good things. Over time, mostly due to my brother’s own work toward making sense of this thoughts, we began to talk about these things more often and for longer.
In our personal circumstances, I think it took time for my brother to stop comparing himself to me. It was a negative habit, but a natural one among siblings. I tried to help him set more reasonable goals so that he wouldn’t have to feel like any effort might be futile.
Eventually, realizing he wanted to be able to buy some things like a new TV and similar as well as start dating and make friends, he decided he needed to get help with pulling himself out of a slump.
These were the first early signs that he wanted to work toward recovery, but it was still a good 6 months or so before the idea really became a motivating factor for him to ask for more help and a better treatment plan.
Patience and understanding went a long way for him and for myself. Rather than press the issue, I began to simply state that his desires were reasonable and that he had every right to try to get those things. If I oressed at all, it was to ask questions about how he might get what he wants and what he might be concerned could hold him back. All in an effort to restate that I thought he deserves those things and that I felt like he could get them.

No matter what specific methods you adopt, I totally agree that patience and reassurance are key.


#36

ye, yes, yes! My son’s depression stemmed a lot from the comparisons he made to his sister who has succeeded in more things that I could have ever imagined. I always tell him that sometimes his intelligence (mechanical thinking, brilliant associations) can be a barrier because he isn’t able to communicate in ways that make sense to others. But I understand, -only after I’ve had a chance to process what he has said. His mind goes a hundred miles an minute but he’s only able to verbalize the associations and its up to me to connect the dots.


#37

Hi I can relate. I have asked my self that a million times over. My son is struggling so bad with this bad illness of schizophrenia and it seem like none of the meds are working. If you would like to talk you can email me at cassandracurry69@gmail.com stay encouraged!


#38

I have felt the same way you do and will probably feel like that on and off. It is the cards we were dealt.We can only do the best we can wirh it.
Hang in there.!


#39

@JARCA2016 alive yes, but well? Far from well, I’ve lost my son, sometimes I don’t recognize him. Someone mentioned it’s almost like they are dead, but they’re really not. What I wouldn’t give to just see glimpse of the boy he was, I always picture him playing a lot of sports and being happy. This did not begin to manifest itself until he was 17-18. He sat in his room for hours, in the same position, very scary. I never saw anything like it in my life.


#40

@Cassandra_Curry - Hi, I will email you. The only comfort I feel is from this group and people who are going thru the same thing. If only my struggles were dealing with “normal” stuff that kids in their teens and young adulthood go thru.
This is a totally different animal. Very, very difficult, even for the extremely strong