I can relate to this… since my daughter opened up to us about what she has been struggling with, I feel that my daughter and I have a closer relationship now.
2 Likes
@Windyhill63, yes! This kind of situation can bring 2 people closer because it’s not the norm. It takes a great amount of trust between the MI & the caregiver, more so than before. I can honestly say I realize more now who he is. There’s no room for much else other than love and support
3 Likes
You also wrote, “There’s no room for much else other than love and support.”
I agree 100%. Once everyone’s safe and basic needs can be met (huge accomplishments that have to be re-accomplished again and again), the other stuff kind of falls away. And I’m thinking my Christmas letter would only make sense to people who live lives like ours: We all ate food and drank water every day this year! We have all slept at least a few hours each night! etc etc I know where my family member is and that they are safe—Thank you God Thank you God Thank you God—so Merry Christmas to everyone who understands and everyone who doesn’t.
3 Likes
@Hereandhere, I understand everything you’re saying.
What would I tell people? Maybe something like this: “ Hello everyone, My son is finally back to watching tv and YouTube videos after he smashed his tv and took a year off from it because he thought it was controlling him. And also, he’s managed to stay out of hospitals for the last 3 months and is working on showering once a week! Merry Christmas, Everyone!”
No, you are correct, no one would understand, nor would they care to. It’s a situation where someone really has to go thru it themselves to truly feel the heartbreak, the loss, the shame, anger, and the unconditional love.
Peace to you and everyone on here 
2 Likes
On one part of my Christmas update letter I wrote about what a great brother my older son has been for his brother. After the discussion here, I added “Let me tell you how it is, 99% of people turn their backs on people with severe brain disorders and their families. My son is a rare brother indeed.”
@mbheart - I could have a lot of fun with the sort of letter you suggest. One of the Christmas letters I opened today actually has this sentence - “Our youngest earned his MBA this year even while he was CFO of his company. Not easy!”
I guess mine would go something like “My youngest had to move out this year because he tried to hit me with a rock the size of my head. Not easy!”
5 Likes
.I sincerely hope they are keeping a close eye on their youngest …as stress affects people is so many ways ! Would be interesting to get honesty letters from the kids of these parents who live variciously through them . In the mean time we carers have nothing left to lose as we learn to love our loved ones unconditionally such a freedom for us all …painful yes but so freeing when your out of the race !!!
3 Likes
@hope, I feel like I’m slowly slipping into a world the majority do not and will not understand. I almost feel alien. How tough it must have been to earn an MBA while working! And here I am, struggling with my son about his hygiene, just trying to ensure that he brushes his teeth daily and puts on clean clothes!
It’s too late, I’ve already crossed over. I’m now in the category of people who normal people may think as strange or “crazy”. I’m tainted for life, as far as society is concerned. Now there is no way I could possibly understand what the “normal” people struggle with everyday. For me, it would seem like child’s play and I fear I may even laugh or chuckle.
“Hope”, I hope your holiday is a peaceful one
2 Likes
Sure, you’re here in our world - their world is easy in comparison.
As @Faith1 said it is freeing to be us.
Thanks mbheart, I hope the same for you and all of us and our family members.
1 Like
@Faith1, so true. No more pretense, no more keeping up with the Joneses, no more competition, no more trying to outdo someone, no more sugar coating anything. We are just exactly what we say we are.
1 Like
Who even writes that kind of shit. They are only bragging. Maybe next year she’ll write - my sons company went bankrupt and now he has a huge debt of student loans. I’ve started a go-fund me site! lol.
2 Likes
@mbheart this is just amazing because before this year when we had no clue what she has been going through, my daughter and I fought a lot… many times because we are so much alike in our personalities and often butted heads…
1 Like
I wonder if their world really is as “easy” as they make it out to be…
I believe they think their struggles are quite difficult.
@Windyhill63, I remember being frustrated with my son a lot BEFORE his diagnosis. He would not shower, he would just sit in his room for hours in his chair, just staring…I knew there was something definitely wrong. But I wasn’t sure if he was just being lazy and difficult (the difficult ages between 15-19), and because I thought this, I expressed my frustration often and we argued a lot as well. Then things escalated to another level where he would call me to tell me to stop having him followed, he was leaving our apt door wide open when he left to go anywhere (which wasn’t often), he gave away all of his money in his savings account ($2,000) and said the homeless people needed it, smashed his tv, his phone, and started putting holes in the drywall of apt saying that he needed an escape route just in case “they got him”. He always kept his bedroom door locked, I would talk to him thru the door to come out and have dinner with us, no answer. He kept his room dark 24/7, no lights ever! His paranoia and delusion were out of control.
Everything makes sense now as far as his diagnosis, what doesn’t make sense is how unfair and cruel this illness is and how it makes the caregiver feel as if they can never quite relax or be @ peace. I struggle daily with not knowing what’s around the corner for me. I’m tormented daily and my anxiety is off the charts not knowing what will happen next.
And add to that fear the accompanying sadness that comes with struggling to accept this, that this is my son now. Add the stigma, the cruelty of human nature this illness exposes, and very little understanding from friends and family members.
I sometimes wonder how I’m doing it…
1 Like
All those feelings that you mentioned… I can totally identify with! My daughter doesn’t have a specific diagnosis yet… but this past summer my daughter opened up about the things that she has been dealing with… we had no idea that this kind of things have been going on for at least two years! I mean we had some idea that something was up… but had no idea of the extent of it all. She had been afraid to say anything for a long time because of the fear of the stigma. We got her together with a wonderful therapist to get her started with getting her help. Then the therapist suggested her to have tests done to rule out any physical reasons. Then the doctor who did the tests suggested seeing a psychiatrist for a possible diagnosis of schizophrenia and/or bipolar disorder… we are in the process of looking for a psychiatrist now. It’s been a challenge for the whole family… my oldest brother has been a great support… my parents aren’t sure what to think and all they can say is “give her lots of love”
1 Like
“Who even writes this kind of shit”…the reason social media websites like Facebook and Instagram are so successful. Many people have a burning need/desire to brag or keep up with xy and z.
1 Like
Isn’t that such a blessing I understand what you are saying Also I think we really get to know motherhood at its best. All a blessing xx
2 Likes
I congratulate you on your successful helping with your loved one, and greatly admire what you have helped accomplish in their life. Wow. So awesome.
Your statement that:
“they (the relatives) don’t want the sadness to impact them…”
is in my opinion **exactly**the reason why friends and relatives ignore us as caregivers and afflicted.
Awwww so difficult for them, we might make them sad - how inconvenient of us!
1 Like
mbheart - My son also has schizophrenia… diagnosed in 2010. Love him more today than yesterday. He is my heart and I too could not believe he wound up with this chronic brain disease. He gets an injection of Invega Trinza 4x a year and he does very well on it… he’s not working, but he has his own apartment, drives and has friends that he can hang out with. Occasionally he will come stay with me for a couple of weeks or a month, as I live 650 miles away. He’s awesome. Good days he tells me he loves me and misses me… bad days I can’t get in touch with him. He’s on disability, gets food stamps and has Medicare and supplemental insurance. It would be nice if he could meet other people with schizophrenia just to know that he is not alone. Thanks for posting and sharing. Val
3 Likes