Family and Caregiver Schizophrenia Discussion Forum

Is anyone happy anymore?


#1

I joined a couple of suppprt groups on FB including caregivers of sz and also depression/anxiety group. It appears the world is filled with angry, sad, lonely, depressed people. I go out to eat, go grocery shopping, everyone looks in a hurry, not happy, worried, lonely or just plain sad.

I’ve been a people watcher forever and I’m not sure of the reason, but I’ve become more observant and perceptive lately. Perhaps it has to do with what I’ve been dealt (my sons diagnosis), or perhaps with age comes more wisdom. I’m not sure, but I do feel myself connecting more with these types of people. I’ve always felt I was an empathetic person, but I think more so now. Perhaps they are going thru something far worse than I am, they say everyone is fighting a battle of some sort.

I do know that when life hits you hard, with it’s twists and turns, it can either make you cold and bitter or make you appreciate more of the small simple things. And yes some days I do feel angry and ask why my son? Why me? Why our family?

I just want more days with less turmoil and anxiety and more peace. Just little increments of peaceful simple things, to help me get thru. I’ve stopped asking for things that I know will never materialize. I’ve reached a point where if my son has a quiet, peaceful, uneventful day, I’m beyond ecstatic.

How my expectations, perceptions, and viewpoints have changed!


#2

I think that as I get older, I get more pessimistic. Youth seems to have the happiness I long for. The people my age are sad, depressed, lonely, struggling. The people 20 years younger are wrapped up in life’s struggles in caring for young children. The people 40 years younger seem happy, despite struggles. They have hope.

I believe it is me, my views of myself, that have changed. Not so much the world…


#3

Happy ? since this heartbreaking disease took over our lives almost 2 years now , i forgot the meaning of happy , i feel I’m grieving and it hurts like hell but like you said when my son has a peaceful day I’m at peace but with this brain disease its one hour at a time for me .


#4

@oldladyblue, I’m not sure of your age but I’m 50. 40 years younger would mean we would be talking about 10 year olds, and I would certainly hope they are happy! I know my kids were very happy @ that age.

I honestly don’t think it’s all me. I think it’s how the world is developing into a selfish, self-entitled place, and everyone is about themselves, perhaps myself included. After all, when we are all immersed in worry and misery, how can we even think about giving? I sometimes feel like I have nothing left to give. Just trying to be honest here, this life we lead is extremely draining, to say the very least. I sometimes wonder, one of these days, that I would end up with a bad mental breakdown and I would end up with sz? Go into a psychotic episode? Start saying/doing strange things?? I mean if my mind is constantly being put thru hell on a daily basis, what’s to stop me from slipping into the other side? How much can one take before reaching the breaking point. This would mean going way beyond depression. My son did. Why not me? Am I just mentally stronger than my son? Some days, I’m not so sure. As I mentioned prior, we have zero history of any type of mental illness in our family, that anyone is aware of, and we have discussed over and over. So now, I’m left to feel as if my son just wasn’t strong enough to handle life and the trauma that life can undoubtedly inflict? I do not have the answers to these questions. But I often wonder why isn’t this happening to me???
Why didn’t it happen to me?? When I was 19, 20, 21? My childhood was not the greatest, and that’s putting it mildly.

I see a lot of young people in their 20’s and 30’s struggling, depression, drugs, alcohol, little babies, no job, no home, no money, no moral compass, etc. all about instant gratification, it appears, and of course rapid advancement of technology certainly didn’t help. Being able to go on a date in 1 hour with 1 swipe on a dating site. I feel bad for the younger generation, no direction and entitled, sad.

Then you have the people in their 40’s and 50’s, either married but most likely divorced, most of them going thru a second childhood by hanging out in bars every weekend getting trashed. This is what I see in my area. Perhaps hiding the sadness or trying to escape, partying to feel young again. I don’t know, but they don’t look happy either.

Then I see 60 and older. This group breaks my heart. I see a lot of them @ the grocery stores early in the morning, sitting alone eating or drinking coffee @ the cafe section of the store. Most likely spouse passed or just divorced. I sometimes sit with them in the morning and say hello before going into work. I’m sure I will be in this category.

We all have SOMETHING we are dealing with, I just never expected this with my son. I would have gladly given my arm or leg or whatever, as long as it happened to me, and not him.


#5

@Linda, yes it hurts like hell x1000 and yes it most certainly is 1 hour @ a time. Constantly walking on pins and needles as caregivers, just waiting for the next catastrophe.

Yesterday was a good day for me. My son called me and wanted to go get a tv. He stopped watching tv for over a year, he claimed they were evil and saying awful things to him, so he ended up smashing a 46” tv along with his router.

So I was shocked and asked him if he was sure that he wanted to do this. He said “I’m sure mom, it’s only a tv and I miss watching movies and playing video games”. I was ecstatic! Because for over a year I had no idea what he was doing all day to occupy himself and was worried constantly. He claimed he read a lot, and went for long walks, and these things are wonderful, but I’m always trying to help him see there are many other options of things to do to make his day just alittle bit more “normal”. Sometimes he comes into the office with me, and I give him simple tasks to do, but he doesn’t want to leave his apt often. And it’s like pulling teeth to get him to walk over to my house even just for dinner. (His apt is only 4 blocks away-which was intentional).

But like I said, him just asking for a tv made me feel so wonderful. I’m sure for people who are not dealing with this, their son asking for a tv would be something uneventful, but for me, it was a major positive event. How my perspectives have changed!


#6

I know the feeling , last week he asked for his iwatch back and I was so happy inside … I don’t believe he is wearing it now … so one hour at a time . He has his camera on his phone covered , the vent and light switches covered , his room is an absolute mess and worse of all he has no friends and isolated himself in his room at a student apartment. He refuses to go back to college . His medication has elevated his cholesterol and messed up lots of other vitals . He now has ED due to meds and is distraught and constantly wants to see a urologist to fix his problem and is becoming obsessed … too stressful for words . He will be 21 in January, how old is your son ?


#7

@Linda, my son is 24. He was diagnosed @ 19, but he has not been “right” since about 14. I hear you about them isolating, having no friends, and his hygiene! He lets himself go often until I can’t take it anymore then his brother has to tell him he stinks! Then he will shower. He cut his own hair, what can I say about that? It’s not very becoming but he seems happy with it.

This is exactly what I mean about theses meds, the long term use and its side effects to internal organs, one just never knows ! It’s damned if you do, and damned if you don’t. I wish there was another healthier way. The AP meds relieve symptoms but doesn’t cure it. Like taking a Advil for body aches or a headache.

AP meds are pure poison as far as I’m concerned, and our ill loved ones will eventually feel the repercussions of these strong drugs. They will develop something whether it be diabetes, heart disease, liver/kidney failure, not to mention immediate side effects such as inability to think clearly, putting them in a zombie-like state, and just a general numbness. I’m against them, but I had to choose the lesser of the 2 evils.

I will pray for you and your son. The emotional toll it takes on us as caregivers is just unspeakable!


#8

Hi , im so sorry your going through this and trust me i know exactly what Hell we are in , I feel the AP meds are slowly killing him and if he stops them his paranoia hits the roof . There must be something that can be done . he is borderline diabetes and his liver is not good . I am constantly doing research on how to help him but the problem is even if i buy him natural vitamins to lower his cholesterol he won’t take them . He just doesn’t listen to what’s good and right for him and he’s over the age that i have no control of . On Monday he will be seeing a new psychiatrist and i pray he can help in some sort of way . I have no quality life as my mind is constantly working and I’m psychically and mentally exhausted . Its like looking after a 2 year old all over again but worse . He’s on Abilify , he has good days and bad days , but he is always alone and that kills me . Even when he asks to stay with me for a night or two , he comes to me and after 2 hours and he wants to leave , he is not comfortable in his own skin . He doesn’t work he doesn’t drive as he licence got taken away from him and he doesn’t want to go to college . I bribed him to do an online course real estate so at least he’s doing that in his room along with his xbox and music .We have no family here which makes it more difficult and i have a husband that just doesnt get it and puts more fuel in the fire . i just found a nutritionist that may be able to help with his diet and we need to return to his doctor so he could talk about his results and maybe then he might take it seriously . I pray for your son also .The AP like you said is like advil and its not a solution , we must keep doing research to see how to help them . I read about Niacin and how amazing it suppose to be but like i said he won’t take it . i feel blocked from every corner . Does your son have a dog ? I’m thinking of getting one for mine , i believe it will be good for them . What do you think ?


#9

@Linda, omg you are telling my life story! So many similarities, my son wants to come visit and see me, but after an hour he gets fidgety and wants to leave, he will NOT take vitamins or supplements I tried to get for him, he’s always alone, with his music and PS4. It is so heartbreaking, I truly believe I’m more phased by this than he is. I also wanted to get him a pet, like a cat or a dog, (he loves animals), but he refuses. I just want him to have something “alive” that is with him 24/7, and I ask him periodically about the pet, he continually says no. He also lives close so I can help him with the dog, he still says no.

Is this how his life is going to be? No college, no job, no girlfriend, no friends, possibly no family? I just feel lost and hopeless.

We also agree on the AP meds. There is no way that there wouldn’t be residual side effects from them. When I hear people say that their loved one is doing great on clozapine or Invega or whatever, im like “doing great”? Are you kidding? Do you know what these meds are doing to their insides? I guess they mean great as in staying out of hospitals, jails, and not having psychotic episodes. I guess if view it like that, then your loved is doing “great”. But this “phase” they’re in will not come without a price. If I hear one more time about the right “cocktail” of meds, I’m going to scream. There are people who actually take 4-5 different types of meds per day (the right cocktail). Very tragic in the sense that caregivers are lead to believe theses meds are “working”. Yes, they’re working all right. They’re working on disturbing normal functioning of the organs, including your brain, and sooner or later, the side affects will rear its ugly head and manifest itself.

My son is on Zyprexa, I’m hearing/reading horror stories about it. Like some have died from this, trying to come off of it. This medicine makes him zombie-like, and he sleeps 16–18 hours a day, with zero motivation! I guess he’s “doing great”, since he’s not in the hospital or jail or in an episode. (Being sarcastic here). Not to mention what it’s doing to him internally.

Its truly a no win situation. I will say again I consider my self to be anti-Med, but someone who is doing it unwillingly, sadly, and with much protest.

I guess the term “doing great” would depend on what the individual circumstances were. Like I said, my son reaching out to me, wanting a tv again, that was a major milestone for me.

Linda, please reach out to me privately if you’d like to talk more. We share so much in common, most importantly the belief the these meds are killing our loved ones slowly. I found I was the minority in this group with this belief.


#10

Inability to think straight …is why my son unmedicated has had no life and doing and saying odd things . After only one week of AP he is starting to think clearer I thank god for the people who have spent time to develop these medications and pray they keep on developing them so my son can benefit . This has took five years of trying to think of a logically solution to this problem but now I understand his brain chemistry is upside down and needs a medication to put it right again .The side effects are nothing compared to the illness


#11

Hate the meds HATE this condition more and yes that’s exactly what’s it doing , keeping them out of hospital but you might as well call their home a hospital with a life like this . my email is quchiwow@gmail.com … please get in touch and we can exchange phone numbers .


#12

The side effects can get serious , my sons vitals are upside down and borderline diabetic .


#13

@Faith1, we are going to have to disagree. I don’t thank god for any of these doctors who are so quick to put poisons into my sons body. These people are not Gods, a lot of times it’s about the big PHARMA corps. I’m up against a wall, I realize I have no choice, but I certainly don’t sleep better at nite because my son is on meds. With 1 relief comes another tragedy. May your son never experience any type of bodily malfunction as a result of long term use


#14

I totally understand about side effect but one month ago my son unmedicated was taking so many risks to himself wandering late at night not understanding how to dress in extreme cold eating and drinking extremely out of date foods being arrested by police …aggression . This was not his personality it is his brain disorder which is ravishing his mind . I’m so sorry these meds have these side effects and until they work on more reasearch to find a medication that has less we have little choice at present .Anyone who has a chronic illness and has to take medication has the downside of side effects . The good thing is we have choices and we all respect the choice to not take medication . We will of course review my sons meds and any risk to his physical health I will be the first to change his approach to this illness . I wish you strength to deal with all this illness brings


#15

I totally understand you and I wish you strength too , its not easy either way , Gd bless !


#16

My son has had extreme body misfuction when forced to take haloperidol he stopped breathing he was resuscitated as they sedated him so much !!! Also on clozapine he drooled choked to the point of me having to run to him in the night to stop him choking . Believe me I’m not naive I understand it is the mental health system who have at times let my son down with me watching heartbroken . I know there is no fixing this and some kind of medication is going to work for him . The big pharma yes get the money promoting AP but the cleaver biomedics are passionate to get a breakthrough …


#17

Thankyou Linda we all want the same for our family member and the effects it has on us is life changing .


#18

@Faith1, my son also had horrific side effects from Haldol. He could not sit still, jerky, pacing, up for 3 days straight. It turned his face yellow, with just a blank stare in his eyes. It was hard to watch. No Haldol, ever again.

All I’m saying is that before we are lead like sheep by the doctors, and the healthcare system( most of them do not honestly care, it is just a paycheck to them), we need to understand the entire potential possibility of what may happen. I don’t think sometimes we are told everything. Yes we got rid of 1 symptom, now what? What’s next? How many meds must a person be on? And the interaction between them? The poor organs!

I have no choice right now, my son NEEDS to be on something, and it makes me sick everyday.


#19

Totally are with you but we are smarter by far than the doctors when knowing what is working for our loved ones .I would not want more than one medication at a time so work to get just one AP at lowest dose regardless of what doc says researchers are showing this is the best way forward . When as carers we are so distressed we let the medics take over but now I’m in charge and will try my best as my son advocate to get the best treatment . Keep at it until you find the best approach . Please look after you too as we are needed long after all the docs have gone home to there nice little life’s


#20

@Faith1 thank you, and I think everyone’s goal should be ONE Med, @ the LOWEST dosage possible, and hope to God it does the trick!

Remember the doctors will prescribe anything and everything, they have no vested interest, other than possible kickbacks from PHARMA. I’m sorry but I will always question the dosage as well as the variety, if I feel it’s just too much, and I will always ask to start on the lowest dose of any medicine. I notice some doctors don’t do that, they start high right away. I just cannot turn a blind eye.

Wishing you & your son well on this long heartbreaking journey