Home, Diag Forum, About, Contact Us, FAQ

What helps Caregivers!?


#22

@thereisalwayshope i guess i’m still new in my recovery. Learning the ropes. I do talk to my parents daily. I call them. Just to touch base. (or they call me) We don’t live together and haven’t for over 20 yrs. I am very independent. I like living on my own. I do like to visit them about once a week. Just to sit and talk. Or they visit me.

My younger brother. He is a “tough” guy. But. I hurt him soo deeply when i was ill. I actually heard him cry once. (just once) …i never forgot. And same with my sister. I once watched her…run out of the house…to the garage. and just…sob. Cry. like a broken hearted child.

When both of them. just broke. (Back then, I didn’t understand why) I didn’t get it. It was a shock. My family isn’t a “cry baby” family. We just aren’t. We are VERY affectionate though. Hugs and “i love you” all the time.

So, something in me. …was, “aware” that something was wrong. So, I didn’t understand. BUT. i knew by their emotional pain. That something wasn’t right.

During that time. My brother was (and is) married with 4 kids. (he was terrified i’d hurt his children) So i was NEVER allowed to be alone with them. I still played with them. BUT. I was always chaperoned. I didn’t understand. I just thought. He hated me.

I didn’t UNDERSTAND. then. Just how ill i was. My brother knew. He was soooo busy juggling his family and children. (and his jobs) He was a Military Intelligence Officer. (and he also…worked for NASA)

My sister. (who i was closest to) played mediator…between my family and me. At that time. She worked for a Biotech Company. (that made the Invega shot) She learned of that drug. She made some waves. Made calls. And got me approved for that Drug. It saved my life. (and my sanity)

I owe much of my healing to my family.

I am FINALLY healed enough. I want to make their lives…BETTER. I don 't want to hurt them…or trigger memories of when i was very ill. I really just …want to know…what i can do now…to make amends. I want to make my family PROUD of me. I haven’t …done much yet…to earn that. I really want to.

So…that’s …where the root of this question has come from!!!

I just want to know…what helps the family!!! (the caregivers)


#23

Husband took this last night.

Older boy was telling us about his day…husband was telling us about his day…I was putzing my way around younger boy’s afghan…and younger boy came into the room for a bit.

THAT’s what helps caregivers.
Dialog with the people you love the most.

YOU are doing this.
Thank you for all that you do, the warmth of your heart and the sincerity of your mind. You are a treasure!

(I really don’t know why Dexter is tired! He didn’t “do” anything all day!!)


#24

While you may think that, I disagree.
You are living with a terrible illness and Have. Not. Given. Up.

Maybe you won’t get a noble prize, but child, you have given your family plenty to be proud of by surviving.


#25

Helping our family members helps us also. Do you think you would want to take Peer to Peer from NAMI to see what they do and maybe take the training to become an instructor who teaches the peers?

Though it wasn’t a part of his job, the man who taught Peer to Peer several rooms over, while we took Family to Family, was amazing. Many of us were not able to get our family members interested in taking the Peer to Peer class. If we asked, Nick would come out and meet our family members at our homes. Lots of people came to Peer to Peer after meeting him. Our son was not one of them, but many others did attend Peer to Peer after Nick reached out to them.

It was a nice day, Nick just came and hung out with Jeb. They played video games together.

We were so touched that Nick tried.


#26

What a thoughtful daughter you are. My son has schizophrenia, and I so appreciate just hearing you express such sentiments. My son is slowly maturing, I hope he can get to where you are now.


#27

I think what you are really trying to get to is what will help your family to heal. This illness is traumatic and people involved will carry wounds and scars within them, some that can only heal but never be erased. Probably one of the best things you can do is to help your family create new, happy memories together with you. That’s not an easy task and is something you would have to work at long term. And honestly, talking about it and letting your family share with you their side of things can really help heal old wounds. Apologizing and asking for forgiveness… Saying you are sorry for the pain your illness caused can unlock things a little. Doing things to bring the family together with food, fun, laughter. Time is important too. Reaching out consistently and keeping your eyes open for opportunities to show love and kindness. Maybe arranging a special dinner for your parents if you are able. But most of all, putting your family first shows how much you care.


#28

You are an awesome person. Your thoughts and feelings about your family made me cry. My daughter, 30, has schizo-affective disorder and is so very sweet to all of us now. She has 2 brothers and 2 sisters.
We went thru HELL trying to save her from self-medication, homelessness, paranoia, and all that goes with it. She has been stable for 1.5 years now. We are her guardians, her dad and I, but she lives on her own (in one of our rental units on our property) with her little dog. We still take her to appts, make sure she takes meds, make sure she has what she needs, but we are able to go places overnight occasionally. Now, the most I worry about is her weight (due to meds and inactivity) and just her general well being, but I SO enjoy her sweet spirit. She has taught me SO much about love. Your expressions of love and appreciation to your family are awesome. Thank you for sharing your sweetness. :hugs:


#29

“Dexter” is …absolutely adorable!!! …and you are VERY talented at your Knitting. WOW. You are able to make designs in your work. Soooo Kewl!!!


#30

I sure hope so …I try to be a better person now. Sometimes i struggle. (rare now) but…its does happen. But I haven’t done much yet. to truly feel like i accomplished much. I am working on that now Trying to change my journey.


#31

Thank you @ Author_Charity_Marie. You are amazing!!!

Do you write books? and if so…what are they about??? I’d be interested in reading your works.


#32

Thank you! Yes, I am a professionally published author with two children’s books out currently. I have five more books in progress. They are on Amazon but are in a state of flux due to our ongoing series of crises. I hope to get back to writing again but am not sure when that will be.


#33

@iamanita007 i completely understand. My family is also…worried about my health. Its been a battle. Weight gain. (i did lose 35 lbs) in the last 6 months. so. I 'm trying my best to get this dang weight off.

I’m 5’8. so i am fortunate. I’m tall. I wear it well. BUT. Its been a battle. I have been very very fortunate. The weight loss is happening much easier than i thought it would. I just learned healthier food choices. Cooking my own lunch and dinners. (Lean and green) I have been really thinking long and hard…about menu planning. Etc. Things of that nature.

My sister signed me up for Optivia. (its a medi fast) plan. Not sure if its gonna work. but I’m willing to try.

I do belong to a Gym. (also own my own car) so i am fortunate…to have what i do. Mobility. (and the luxuries of a gym. So, I am working toward…a healthier lifestyle. Its just i used food for comfort for sooo long. BUT. that was then…and this is now. TIme to change. (no looking back)

I’ll be 50 this year. (i’m 20 yrs ahead of your daughter) …talk to her. About health and fitness. Food Choices. Get her to a dietician. (or YOU sit down with her) …show her you care. Learn with her. It makes the world of difference. She might be overwhelmed…by her own health issues. (i am) so i understand her.

I wish someone had .sat me down…2 x a week…on a health and awareness education plan. Ahh. but its NOT too late to start now. Today.

Lack of motivation…is a real issue. When it comes to …diet and exercise. Its a war that most average people face. (but combined with Schizophrenia? its incomprehensible) BUT…it can be conquered.

Not saying its gonna be easy. BUT. losing one pound at a time…adds up. And then. New Wardrobes…etc. :wink: its a good thing. I’m only 35 lbs…into my journey. Got a lot more to go. BUT. I am doing it. I want to live. I just really WANT to live. (in a healthier and small body) so, here I am.

Hope your daughter is doing well today. My thoughts and prayers…go out to you!!!


#34

WOW!!..you are incredible!! You are where i hope to be …in about a year. I am writing also. Not published yet. (too scared to show my work) plus its not finished yet. LOL…like you…i have about…3-4 books…i’m also writing. UGH> I need to hunker down…and …FOCUS on just ONE book at a time. Ahhh…but i get distracted by how the story should go. Should i change my plot? UGH. pulling my hair out…i feel like…a mad scientist.

Is this where I meet…“DOC” …(from Back to the Future) I feel on the inside…how he looks on the outside :smiley: lol …(oh that HAIR) LOL
image


#35

I realized something today - or at least I reframed something in a way I have never done before. My son is relying on me, expecting, sometimes DEMANDING, to meet all his needs. Not just the physical needs of food/clothing/shelter. But also his emotional needs and social needs. And… I just CAN.NOT.DO.THAT.


#36

@Vallpen

Maybe you can make some calls to Case Management. Your son needs supports (beyond you) Its the way healing happens.

Mama bird has to push the baby bird. ( so it will fly) not saying to “leave” but to “heal”.

he needs supports outside family that will help him. Not only to teach him how to socialize but to also teach him independence. So in time he can transition back into the world. Ultimately being productive. Leading a purpose filled life (however he would define that)

Well, hope you are okay.

God Bless


#37

Oh, I have tried. Since my son doesn’t think he is sick, he also won’t accept case management.


#38

Thanks! Both books were labors of love written for my daughter. All of my writing is dedicated to her now. I just continually try to inspire her and give her hope. Or I try to inspire others with her story. Her having SCZ is so bloody hard. I probably shouldn’t but I live for her and have since I found out I was pregnant. She has taught me so much about love and sacrifice and perseverance. And she’s so proud of being able to show off the books I wrote to her friends and teachers and others. She’s one of my biggest fans, for sure. :slight_smile:

I have learned to give myself flexibility with writing. I don’t always feel like working on one book versus another. Somedays I feel like writing really dark stuff, sometimes something happy and cheerful. But I am always plotting out my stories and tweaking them, writing scenes and bits and pieces as I have time. It’s really easy to trap yourself into making writing a job when writing should be fun. And it’s also okay if sometimes you’re just not in a phase of life where writing can happen. Right now I can’t really write because I’m working, going to school, and taking care of my family. But I try to find time as I’m able to and somehow I end up with a book at the end of it. And believe it or not, it’s usually really darn good. Right now one of my books has 20,542 words in it. I’ve been working on it for about a year now. I’m not sure what my target word count is yet but I’ll probably know once I’m done. I’m just going to write until it feels finished.

So don’t be afraid to just let your creativity find its own way. Creativity is messy - that’s part of what makes it fun! Not to mention, life is hard enough without making a bunch of rules for the things we REALLY want to do.

Write on my friend, write on!

Charity


#39

I am so sorry. I can’t imagine your frustration. I wish there was a way to help him gain insight. That’s something i was missing for many years. I just thought it was everyone else. (not me). Took a heap of living and pain to learn the truth. (and a miracle). I honestly didn’t know something was wrong with me. I didn’t. I thought it was my family, my friends, society I had no idea my mind had shattered.

I accepted the supports i was offered many years ago. I didn’t fully realize it was because of “mental illness” …truth? if I had known? i might not have let them in my home. Its like a feeling of being “attacked” or “judged” …Crazy. so, I also would have fought it had i known.

In my mind, I was sooo scared of being hurt again. (PTSD) so they let me think and feel it was for my “protection” they would be in my life. To keep me safe.

I should admit (there were many a days I wouldn’t open my door) to my case manager. I would hide behind the door. (looking out the peep hole) I was barracading myself in my home. I wouldn’t let anyone in. I just let people think i wasn’t there. When I really was. I lied to a lot of people when i was very ill. I was very scared. Terrorized. I simply wouldn’t leave my home. It was pretty extreme. (i lived alone) And i made it clear, no one was allowed in my home.

so your son? there is hope. He is at least, reaching out to you. (You make him feel “safe”) So its a bit daunting on you. try to get him to accept help. (LIE to him if you must) but try to open that door.

Take Care.


#40

Hello @Author_Charity_Marie

You sound like a wonderful mom. Keep advocating for your little girl. She is still very young. She hasn’t fully grown yet. Her mind and brain is still developing and will for many more years so in her case it isn’t written in stone yet. Yes, she most likely has a mental illness. There is also a lot of hope for the younger generations. There is now soooo much more help available. Back in my 20’s it wasn’t like this. I was simply only given a pill and told to go home. So that’s pretty much all i had to work with. Nothing to teach me coping skills. That would come years later. New med’s also would come into existence. Things that were never available when i was a much younger woman. There is a lot of hope for your daughter. .

i bet you also are a pretty good writer, so you write Children’s books. (what is the age genre) you write for? Have you ever written about Mental Health? Or is your focus on a more fiction oriented works?

I remember a story about a family. I will include the link here. But i thought about you also. (and your daughter)

Well…i look forward to hearing from you again.

God Bless!!!

PS> Here is the YouTube Link.

(((Her name is Jani Schofiled)) she was diagnosed with Schizophrenia at age 6. she is now age 16. She is a handful. (she is sharp as a whip) and she is also playing the teachers in her school. She lies about her capabilities. I have a feeling she is BORED out of her head. she spends a lot of time “coloring” in class. some teachers are soooo dumb

She isn’t retarded. She is however very much bored. School isn’t fun. she is stubborn and has a bit of a “mischief maker” in her. She know the games and the system. And she is one kid that is playing the games.

Her own Mother knows her capabilities. (I am in agreement), The teachers seem to be kinda lazy. They don’t want to “work” with her. So they throw a “coloring book” at a 16 yr old pubescent kid?. And justify it. I am soooo sickened by her school. I’d move. (or contact someone in true authority)

The problem is they are treating her like an adult. (Catering to her) not teaching her there are rules and consequences to her behavior. They act like just because she has “schizophrenia” she can’t think. (or learn)

Self Discipline is a taught behavior. Her current age of 16 is the age to nip this in the bud. The issue is learning and being taught to cope with her illness. IF she is going thru a “break” and she can’t focus. That school should invest in a “College Level” …Anatomy and Physiology coloring book. (i had one in college) I was 18. Its a very wonderful descriptive coloring book. (but with the each and every body system labeled) it was fun. (and I learned Biology) That was my own idea. (back before coloring books would become so popular)

And because she is a young woman. She should be using a more adult coloring tool. Those “coloring pencils” You can shade it dark or light. Crayons are wonderful…for a child. NOT a young woman her age. NO. I am NOT for that. She needs to feel like she is “mature” …and crayons? don’t give that impression to a young woman.

The Biology book I had in college was very intricate. It would teach her to THINK and understand “boundaries” plus crayons could never have fit in the tiny crevices and areas of certain body systems within the coloring book. A color pencil is finer and better to use for coloring.

just food for thought. Hope you like this story!!!

Let me know your thoughts!!!

They “dummy down” instead of challenging her mind and brain capabilities.


#41

YES @Vallpen - isn’t it funny how sometimes we look at something in a different way at different times? Like we have some sort of a breakthrough ourselves.

We cannot do everything all the time, we are human.

When Jeb landed in a situation last week, he left me a detailed message of what he needed me to do for him. Detailed in the parts of what he wanted - important details like his actual location - which I needed to do what he was asking, he did not know. He went from one borrowed phone to the next calling me. Why he would not have his phone, well none of you are asking that question. Of course his dad panicked and asked me like 10 times why Jeb didn’t have his phone with him. Eventually I just replied, “you know honey, sometimes, I feel like Jeb is not quite right.”

How many reminders does his dad need?

I thought later, Jeb sees me like some sort of a fairy godmother on call 24 hours a day. He just has to tell me what he needs, and I will make it happen -I guess through my magical powers? Maybe it does seem like magic to him for me to solve the location problem by talking to the person whose phone he has borrowed and asking them where they are located.

The former FtF instructor took some of my questions to the psychiatrist who specializes in scz. One of my questions was, if it is believed that scz has about a 25 year run before the residual stage, what is onset? Is onset when they first change or is it the active stage when the voices start?

I wondered if Jeb is 16 years into the 25 years, or, just 9 years?

The doctor answered by shrugging at her and saying - “its different for everybody”.

Come on science - its time to figure something out and give us some help here.