Family and Caregiver Schizophrenia Discussion Forum

Cannot come to terms


#21

I have been coping with my son’s mental health for 17 years now. I like to call it mental health not illness for we are all ill in some way or another and I am optimistic after all these years. I have moved my son who is now 32 into an assited living care home with other people his age and it is bittersweet. The fact that I am not his primary caregiver but also that I cannot stop worrying about him and hoping for a “normal life” for him. I don’t know if he or I have accepted this is the face of mental health gone to a dark or different way or if we have somehow given up. I am hoping to look into more treatment from an orthomeculiar point of view and implement that somehow into his life. The results look astounding but it takes perseverance, willingness and participation to fulfill. I think I am more willing than him. I am going through separtion anxiety of not being his caregiver right now and starting therapy this week to separate myself from the illness and being just a mother. So so hard and I pray for all of us that there is an easier road to follow…


#22

my son was diagnosed at 16, he is now 32 some years so good and some so awful. I don’t understand it. He seemed to get some insight into his illness and then would regress. I have come to accept the fact that it never progressively gets better or worse it just is what it is at any given year or moment… So many factors… the meds, the time of year, the age, the mood, the life like all of us. If I am having a good or bad day or month multiply that by 10 for them… our moods if you think we are"normal" can fluctuate pretty quickly but for them they can take days or years to accommodate. There is not certainity to any of it and that is the frustrating part. I am just grateful for the good days or minutes we have together.


#23

“I am just grateful for the good days or minutes we have together.”

Rita, these are the memories I am trying to hold onto as well. I am glad you have found a safe place for him. :heart:️ and prayers.


#24

Where did you find an assisted living with ones that young?


#25

Let yourself be sad. Sometimes as care givers we think we shouldn’t ever be sad. NOONE is that strong.

I find some days are sad, some are exhausting but some are good! It takes time to learn to roll with this–we are a decade into this. In the early days there are more sad days, but that is normal. As you appear to be spiritual, I will share a scripture that gets me through–Philippians 4:6-7. Oh, I still get sad–that will probably always be with me, but it does not paralyze me.
Hang in there. Because somewhere in this illness, your son is still there. You will still see it in unexpected brief moments, but they will bring you great joy. Hopefully you will find the treatment that works to bring you more than brief moments. Best wishes.


#26

This is through our county and local mental health center in Jefferson County CO. It is a home run privately but funded by medicaid and individual funds from residents based on their income.


#27

Will have to look into that here. Would be a good option when needed.


#28

We were on the brink of having a lot of homes like that in Texas. Several companies, already established in other states with similar residences, were going to open up in Texas in 2017. Our state legislature didn’t go far enough when they changed some of the laws that were needed to make it possible. The companies pulled out of their plans when the state didn’t change the laws about how many residents could be in each home. To make the houses viable, the companies needed to be able to house more people in each house than current laws allowed.

Terribly disappointing. I can see that 4 to a bedroom in a 4 bedroom house might have sounded like a lot. One of the companies from Tennessee came to talk to a group of us regarding the amount of people in each home. They went over the pros and cons. Basically they need the numbers to make the houses financially viable. The houses are not lockdown situations, but are staffed with 24 hour awake staff. One person per shift, the other support people, social workers and therapists visit all the houses that one company owns.

Some people found it distasteful that the numbers were needed so the companies could make a profit. I think that unless they can run the houses at a profit, no one will do it.

Which must be the reality, because when the law didn’t change to permit higher occupancy, the companies all disappeared.


#29

Yes, to keep it in perspective, overall my son is doing better than past years.


#30

This gives me hope. My husband and I are really struggling emotionally. It has significantly damaged our relationship because I can’t emotionally or physically be in the relationship right now. Too much stress, exhaustion, and emotions to be able to get there right now. I want to but I just can’t. Hubby thinks we will be forever be stuck there, that our relationship is ruined, and that I can’t recover from this. I keep trying to get him to see that I am somewhat tied to her situation and once she stabilizes I will be able to too. We have been in full blown crisis for 30 days now, and that’s been really tough for him to understand. At one point my daughter was admitted to the hospital via ER, he came home and I was in the hospital all weekend, unable to leave her side. I don’t know that either of us are rolling yet, but I am working to get there. For now I am just maintaining as best as I can, some days better than others. Trying to find the right meds to help. I don’t even want to be touched right now most of the time because my nervous system is so overwhelmed. He, on the other hand, needs physical contact. I am glad that in time it should get better.


#31

I continue to think about what I can plan for my son’s future.

In the state I am in, most group homes have a certain amount of square foot area allocated for personal space. 4 people in a room would require a pretty big room.


#32

I really should write at this present time.
We just came out of a long period of stressors. Serious ones, as you know. Over two years, off and on.
Things have balanced again.

Husband, when under stress shuts down. He feels abandoned, but shuts everyone away too. He keeps his agony deep inside and most seriously protected. It’s as if he’s afraid that if he speaks of his suffering, he will lose the very strength he is depending on.

I want dialog and to be touched. To feel like a young woman again, to be told that he does not regret marrying me…that he loves me still or in spite of, or…(I’m not referring to sexual intimacy…that’s another subject, but involved none the less.) The last two years…wow, there were some days I had to really make the effort to be kind. (I reached a point where I shut down…and would sit alone on the balcony and chain smoke for hours, as I couldn’t sleep.)

Now that we appear to be on a break from the major stress, we started setting aside 3 hours together on Saturday mornings. Just us…we close the bedroom door, and as I’m an early riser, I get him up with coffee long before the boys wake. We just talk. Eventually other things as well. It helped. A quiet corner for just us two.

I NEED the connection.
My happiness spreads to the entire family, and I’m far more tolerant of stuff if I’m happy.
Selfish? No…it’s normal.

Still, husband prefers to be left alone to a degree. He says it’s his way of “dealing”. Okay…I get it more now. I need the Saturday (and now Sundays too) time together without the kids. To talk privately. To laugh. To cuddle. He needs to have some time each day where he’s alone and can let his mind go blank.

It seems like right now we have found a balance.
For us: baby steps.
And for me: to remember that when husband starts to talk…to stop and listen. He might not start on an interesting subject, but let him warm up. He will eventually get to the real issues.

Stay strong…our relationship sits in stasis sometimes. As long as we speak kindly and make a sincere effort to not damage our personal relationship while we are in crisis, we usually can reconnect when the time is right.

It get’s better.
It does.

We’ve had several times over the last 16 years that we’ve reinstated the Saturday morning connect time. Talking over our morning coffee. Other times, we know that we are in…well, “stasis”.

Text messaging helps. A simple note of “thinking of you” made all the difference when we felt the distance growing. During “stasis” we use messenger to reconnect.

This is scary…why do we assume scary stuff happening will not affect a relationship? It will. But…it does pass, and you can catch your breath. Eventually…

don’t give up hope on each other.
Breathe.
Smile.
Repeat.

Sometimes breathing takes all the strength I have left.


#33

Squid - Speaking of driving, my sz son has his learner’s permit and could technically at any time go forward with getting his “real” driver’s license, but I am reluctant to have him do so. I can’t imagine him driving and I fearful of what could happen to him or others on the road. Perhaps I am being overly protective here, but the times we have gone driving together, he has scared me (much more so than my older son did when learning to drive). He doesn’t understand the concepts of driving (slow down to take a turn or a sharp curve in the road, slow down if road conditions are different than normal (i.e., heavy rain, gravel road, etc.). I am right there with you with the same questions from the sz one. My other son wants lots of kids and has never mentioned that he’s worried about the possible mi genetic connection. These are all things that run through my head and I ponder when I can’t sleep at night. Would love to hear from others on here about whether their sz “kids” (some aren’t really kids anymore, I get that, but we seem to call them that even though they’re adults) drive and if so, how successfully? Any input?


#34

I don’t want him to drive.
And…
I feel guilty about that.

He starts shaking when faced with a new challenge.
I can’t imagine him driving in Los Angeles.

I also lose sleep at night over these worries. I try to tell myself that our bed is a “no thinking zone”. It’s not working!

Son told me this morning he is not getting married, he’s okay with that. He just thought he was supposed to. He actually doesn’t want to see anyone, and wanted to know if it’s okay with me that he becomes a “hermit”?

Older boy has expressed clearly (on our morning walks to High School) that he can see himself marrying a woman like me. He asked a lot of questions, which led to my disclosure that husband and I talked about scz while we were dating. He says he’s thinking about adopting, or marrying a woman who might already have kids. Or no kids…and a ferret instead.

His greatest fear is this: having to assume responsibility for his younger brother and aging parents.
He asked if he could have his own life before he has to do this?

Wow!..and I thought that I worried at night. :roll_eyes:


#35

They had a lot of justifiers, we knew that it was really about monetary feasibility.

The parents in our group that were reaching out to attract them, were all pretty much okay with their justifiers. Probably because its better than nothing. Stage one was a jail diversion entry level. Stage 2 houses were for those that had stabilized on meds and were ready for a house with more personal responsibilities. Stage 3 houses supported folks stable on meds trying to get back into the workplace.

They claimed that the numbers in the bedrooms kept people from hiding away in the bedrooms during the daytime. They wanted people out in the communal areas interacting.

None of the houses were lockdowns. There are activities that residents of all three levels can attend. Movies, parties, holiday stuff.

The parents involved in the coalition were more concerned about whether their kids could have cars and pets. The corporate people said no pets, no cars.

One of the parents in our group had visited their Tennessee facilities and was impressed. The company is at the website generationsgaither.com


#36

It probably doesn’t help much but what you and your husband are experiencing is completely normal. Men tend to deal by needing more physical contact and women tend to need less. Even after all these years we still have periods like this. The key is to remember you are in this together. My husband likes to say “it is me and you against the world”…and he usually says it as I am about to shut him out. Sometimes my response is not very nice, but it brings me back into the relationship.

Right now everything is really raw. That is normal. Hang in there.


#37

I think a better model might be tiny houses on a property forming a community. I asked my son once what was the worse thing about being hospitalized and he said lack of privacy. For that reason I think four to a bedroom would be really tough.


#38

And privacy in a personal living space seems to be the lowest stress situation for my son.


#39

For me i started taking St. John’s Wort every day, otherwise I too would be in a state of constant depression.
We were able to find sarcosine, an amino acid sold by brainvitaminz. com that did more for my 28 year old daughter than any thing else ever did.
We still have issues, but the change is night and day.


#40

Oh boy does that ring true. Today was one of those days. I barely left my room or my bed. So overwhelmed by life right now. Hopefully some rest and tomorrow will be better.