Family and Caregiver Schizophrenia Discussion Forum

Just a quick question for all the caregivers out there


#1

Hello, I don’t want to waste anyones time but I am a student writing a report on schizophrenia. Schizophrenia is a very interesting topic for me and this website is wonderful with all the use full information on it. however I am looking for what care givers have to take into consideration while providing care for them. I am not looking to offend people and for people to think that this isn’t the place to ask this but I am just not sure where to look for this information. I have googled it and nothing comes up that is to my standard of information. Please help me. I am looking for any information on providing care. Thank you in advance!! you can also directly email me at stacym041755@gmail.com. Thank you so very much for your time. hope to hear from someone:)


#2

I found out my son was schizophrenic two years ago. I begged for infomation and can’t get it. If you find out lete know.i felt it was horrible there is nothing. Mental health professionals look at you like you are a fool when you ask.


#3

that is correct, there is no information really for caregivers with this type of disease. I cared for my ex husband for many years, mentally ill. I searched for help, begged. there is no help, and people shun you, run away from you, if you are trying to care for a mentally ill individual.

the mentally ill individual has to figure out how to care for themselves. it’s not against the law to be crazy. that is the process. there is help for the mentally ill person out there, should they chose to go and find it. however, if you are trying to care for that person, you are upsetting the laws of nature, and it doesn’t work, you have to let them go. that is my advice and the information you perhaps are looking for. The psychiatrists told me that, it’s not against the law to be crazy. The caregiver really has to let go, or the caregiver can become sick due to the extreme stress.


#4

Thats an extremely hard question I think. Generally the issue is just getting good care for people. There are not enough psychiatrists (or psychologists trained in schizophrenia) out there so the long waits for treatment (even if the person wants to get treatment - which is not frequently the case). I’ve read that the typical wait to see a psychiatrist in the USA is 3 months.

So the challenge isn’t "what to consider when providing care’ - its much more basic. How do you get good care?


#5

Are you asking for the day in the life of a caregiver? Because that is as varied as the disease it’s self. For some of us, it’s so heartbreaking and hard and frustrating as a broken system shuffles our loved ones around and treats us like outsiders to our own family.

For some like me, it’s different due to the fact that my brother is a little further ahead on his road to recovery/ remission. My brother has hit a stage of self-preservation. He works, he as his own place, he takes care of himself better. He has been working on self managing his meds, he’s been learning how to cook for himself and he’s been trying to learn how to budget and take care of his day to day well being.

It’s not like that for everyone. Plus, my brother signed a lot of forms so my parents and I can be included in his crisis management. Due to privacy protection laws that do vary from state to state, many care givers find themselves completely shut out of the system at a time when their loved one needs them the most.

Lots of caregivers burn out, get frustrated, mourn for the son, daughter, brother, sister, parent that could have been or once was. My brother was diagnosed when I was still a toddler so the brother I have now, is the one I’ve always had. But he’s changing so much do to, FINALLY having the right combo of meds, the right support, a good therapist, and a new lease on life. I’m one of the very lucky ones.

The biggest ingredient that gets many of us through our day is hope, love and education and support for ourselves as well. Caregiver groups are found through NAMI.

Another thing many caregivers have to navigate is the ever confusing system of SSDI or social assistance. My parents were the ones how had to worry about that and I don’t envy the scary headache that was for them.

If you want more info on caregivers go to the main site here
www.schizophrenia.com
www.nami.org

Hope this gives you a small glimpse into a day in the life. Or were you looking for something more specific?


#6

I have versed in health economics. In health care the return on investment (ROI) is quite high for things like cardiology and cancer.

The ROI is the lowest for mental health care and palliative care, rhumatology.

Health care is a business. So, there’s more profit for the doctors and the hospital with other diseases.

If you were going to go deep into debt for medical school, you would want a good payback for your education.


#7

I just had a thought, I would say caregivers suffer from the issues of codependency. I know I am guilty of enabling my mentally ill family members, rather than allowing the laws of nature to take it’s course.


#8

I’m sorry, but what does that mean?


#9

well, one example would be that my mentally ill ex husband and I ran a business. He would become manic, spend too much money, and I would bail him out.

another example, my mentally ill ex husband had child pornography in our home. instead of reporting it, I covered it up, as I was afraid of losing alot of money , my money, as well as the stigma of having his name on the news as a sex offender and risking having his name on a sex offender registry.

I deeply regret that decision today.


#10

Unfortunately Its not as simple as just ROI in terms of the poor quality of healthcare for mental health and the lack of psychiatrists.

“What specialty do you want to go into?” he asked.

“Psychiatry,” I answered without hesitation.

“Why would you want to do that? You’re too bright to be a psychiatrist.”

At that point I realized I’d clearly given the wrong answer and any confidence I’d felt earlier went out the window. I attempted to recover by telling him that psychiatrists have the opportunity to assess their patients from a biological, psychological and social standpoint, but I could see his attitude toward me changing. After that experience, I was teased unmercifully about wanting to go into psychiatry, even called a “spook,” and I learned that the stigma of mental illness existed within the medical community — directed toward mental health departments, clinicians and unwitting medical students.

Why don’t more doctors choose a career in psychiatry?

In 2011, about one in five UK core training psychiatry posts was unfilled owing to a lack of suitable candidates, and only half of those who did take up posts were UK graduates.

One reason trainees may be reluctant to apply for specialty training in psychiatry is because there are still so many misconceptions about the specialty that create a stigma for those working in it. For instance, a study presented at the Royal College of Psychiatrists’ 2013 congress found that 26% of medical students and 47% of the public said they would be uncomfortable sitting next to a psychiatrist at a party.[1] In addition, 54% of members of the public did not realise that psychiatrists have a medical degree, and about half of medical students and the public thought that psychiatrists “know what you are thinking.”
http://careers.bmj.com/careers/advice/view-article.html?id=20015985


#11

The question ‘what care givers have to take into consideration’ is not really specific about what you are looking for.

Finding services. Finding the right services. Finding affordable services. Getting the loved one to accept services. Knowing when to escalate the level of service, at risk of alienating the loved one who you are trying to help. Balancing care of loved one with maintaining some semblance of a ‘normal’ life. Dealing with the stigma. Dealing with the guilt. Dealing with the exhaustion, and the just plain sadness of seeing at least one life torn apart.

Where can your loved one live? How much independence can s/he handle? How much support can you provide? How much support SHOULD you provide? Again, where can your loved one live that you can afford?

How many days of work can you miss without having problems with an employer? How many days of vacation can you use up without having problems with a (less than understanding) spouse? Is your loved one safe? Are you safe? (Forget about happy for now, safe is the baseline.) Will the current meds cause serious side affects? Does s/he need more? Could s/he manage with less? Is there another med that work work better? Are we missing something?


#12

There are a shortage of psychiatrist,that’s why I suffer as a caregiver. My son was so drugged under one doctor he could not speak. I could not get an answer over tv if he could not talk because of the disease or the medication. I got him to another doctor and he now talks. He showers. He could not help it. I would not leave him with any other disease unable to care for himself. I am not codependent I am with family in sickness or health.i should not have to move my child to my mothers in another state for help. He talks now. I work in another state. I have situational depression. My mom is too old for this. He did not ask to be schizophrenia. No wonder people live under bridges. This should be refoed like nursinghome reform there needs to be group home reform. My son did not get feed in one they admitted it. They did the best they could. I am not codependent because I wanted my son fed. Yes I was upset when he did not talk. I grieved. Now I get the hell of being two hours from him with my feeble mother that does not need this.if this was cancer we would have Ronald McDonald house I have horrible credit card bills from gas commuting with his illness my life is depressing from owing bills. If this was cancer my church would help. I would love to help with reform and we need more doctors


#13

Yes Valleypenne your exactly right!!! Those are the things that go through my head …


#14

My question was: should I be a caregiver again? Or did I hold back his recovery? My son has been recently diagnosed. He is nearly thirty. For the last ten years I have been making sure his rent and all his bills were paid and he had enough for his daily sustenance, etc. In that time, he dropped out of med school, dropped out of two more university courses, worked a couple of part time jobs, etc. I look back now and see that his negative symptoms were developing over that period but by taking care of him as if he was younger I probably delayed his diagnosis and therefore his recovery. So now he has a diagnosis and a treatment team, I actually finally treat him as an adult, and he shows signs of being capable of recovering, dealing with it, having insight, etc. Maybe sometimes the carer’s role doesn’t help the patient. Of course, my son lives in the UK, and i have to say the NHS has come up trumps on this one.


#15

I know I keep saying it, but the analogy would be that a child has to fall down to learn how to ride a bicycle.

if someone else always is there to hold the bicycle up, the child will never learn to ride it himself.

everyone is happy when the child can ride their bike on their own

ok, so map this to what I said earlier, it’s not the parent or the spouse’s job to take care of their loved one… it’s not the caregiver’s job to hold up the bicycle. if the person cannot eventually operate the bicycle on their own, then the caregiver is going to stress themselves out to the point of illness and jeopardizing their own health in trying to hold up the bicycle