You Can't Do This Alone


#1

My son was diagnosed with schizoaffective disorder at age 19. We struggled to help him. He was a wonderful son. He ended up taking the meds, and that is what killed him at the young age of 46. He took multiple meds and two were prescribed at higher than recommended doses and caused lethal toxicity and sudden cardiac death. His death was over four years ago, and we still mourn his loss and miss him so much. I read these comments and it saddens me to hear how family members struggle with sons/daughters who have similar conditions to my son. The best advice I can give is do not try to do this alone. Get family involvement.

The family should not solely rely on the psychiatrist to properly treat the patient. Instead, the family needs to be fully engaged with the mental health patient’s treatment plan. The family should insist on a multi-disciplinary approach to the patient’s treatment to regularly include communications involving the: patient, family members, psychiatrist, mental health counselor, pharmacist and primary care physician. The family should be aware of the medications, the indications for use and the risks, side effects and warnings associated with the medications. The family should ensure that the health care professionals are regularly questioning the patient’s physical as well as behavioral condition with these concerns in mind. This team approach should be in effect until the patient no longer requires psychiatric medications.

I know from personal experience it is difficult to do this. But instead of fighting this alone, try to get a team approach. There are programs available such a Navigate, Open Dialogue, and the Epic Program. Google, find one that is close to you. If none is available, just start your own team with the health care professionals listed above. In reading all the comments by family members on this thread, I get the impression that many are going alone in coping/dealing with family members having this condition. You will get burn out trying to go this alone. You need a team approach to help you.


#2

I’m so sorry for the loss of your son, Stan, and thank you so much for your contribution.

I think many, if not all of us on this forum, would agree that we cannot do this alone. Fortunately, many of us aren’t. But, the sad and difficult reality is that many of us have ill children/siblings/parents/spouses that don’t even know or believe they’re ill, so they refuse to participate in any treatment at all, never mind multi-disciplinary treatment. As perhaps you know, this symptom called anosognosia effects so many people with Schizophrenia. Then, of course we have the HIPPA laws that virtually prevent family from helping their sick family members over the age of 18, by being part of the treatment team, unless the sick person agrees to a waiver of those laws.

Earlier, our child did agree to participate in one of the first episode psychosis programs you mentioned in your post, but he now refuses any and all psycho-therapy, either individual or family, and he will not contact or see his community psychiatrist. The only reason he is on monthly injections as we speak is because he was recently discharged from the hospital with a multi-month prescription from his in-hospital psychiatrist. That prescription will end soon, so who knows what will happen then.

Again, I’m so sorry for your loss. I wish you could’ve had a better outcome for your child. I wish we all could. Laws need to change.


#3

Sorry for your loss… I do two of them alone, both Med resistant, over 20 years, I am a pro… Everything automated as much as possible and remotely managed… Gated property with no one to help…


#4

GSSP: Have you ever had anyone come in and help? If so, how did it go? Where my son is now, I think he might enjoy seeing someone else. I think of how I can put something together. I know it would take the right person too but I would like to give it a try.
Are you seeing a lot changing with your daughter now? Is she more easily bored now? Or about the same?
I appreciated the video that she made about her experiences with ECT.


#5

Just cleaning crew…

yep, The ECT helped a great deal, she is more up beat and less often depressed but still very paranoid. She had a boy friend that is also SZ. She has less visual hallucinations and reduced auditory hallucinations.


#6

Stan, I’m sorry for your loss. Thank you for sharing and the message. I’ve not heard of any of these programs.

I am finding just taking my son anywhere and getting him out of the house helps this week.
Sometimes he doesn’t even get out of the car. He’s not very social but hopefully with the right meds he might enjoy that more.

His new therapist said she wanted to do a team approach with him. I liked the sound of that. Thanks again and have a good Christmas.


#7

That is fantastic! Is she artistic? Would she enjoy beading or painting?


#8

Dear Stan, I am sorry to hear of the loss of your wonderful son. My heart goes out to you.


#9

Sori for the loss of your son😢


#10

Thanks so much. Our hearts are broken. I just hope my message will help save others. Make sure any loved ones taking these high powered meds are checked regularly for heart, liver, toxicity, and other dangerous side effects. Do not trust your psychiatrist to do this! And beware of the dangerous long term side effects of these psychiatric medications.


#11

His psychiatrist doesn’t even weigh him.


#12

I feel your pain and am very sad to hear of your loss. I agree with the team approach.I initially felt that I would be the hero and save him. Fortunately I eventually realized that approach was not going to work. It was tough to allow myself to admit that, but ultimately it seems to be working much better so far.


#13

Ron,
Thanks for the kind words. I am happy you have a adopted a team approach. Like you, I thought I could handle it myself, But I discovered, too late, that the psychiatrist was recklessly prescribing meds, at high doses, and in combinations that killed my son. She never ordered to have his heart, liver checked, and did not monitor the blood concentration of the meds she was prescribing. If she used a team approach, that would not have happened. Others would have questioned her treatment plan, including the family physician, had he been on the team. I believe my son would be alive today had a team approach been utilized. If I can save one human being by speaking out, I feel the loss of my beautiful son, Mark will not have been in complete vain.


#16

Your comments are offensive, insensitive, and inappropriate. Why don’t you try being more retrospective and review the care and treatment of your brother, i.e., what was done vs. what could have been done perhaps resulting in a better outcome. My sense is that people come to this site with horrific situations and conditions looking for advice and guidance. My son’s situation was completely different than your brother’s. You did not know my son. How dare you say he is better off dead. You are dispicable.


#17

Stan,
I agree with what you said about the above poster. Bizzare and hurtful.

I admire your outreach to others regarding multidisciplinary approach to care. It is so fragmented. And dangerous.

Another thing that upsets me is when my husband was in crisis, we’d call the psych doctor, and the answer was always the same: go to the ER. The doctor never met us at the hospital, which I think would be the decent thing to do. The ER at a general hospital was usually a nightmare. They didn’t know his history, other than what I told them. The quality of his care was dependent on who was on duty. And this was at a hospital designated as a mi “crisis” center. Which, as I said was a general hospital.

There is much that can be improved upon in the care of the mentally ill. Again, I appreciate your advocacy. I’m so sorry about the loss of your son🌹


#20

Thanks Jan. We must continue to speak out, in unison, to hopefully improve our flawed mental health care system…


#21

Mp-there are lots of illnesses that can strike our loved ones. I’m sure that none are better off dead. Think of all the kids who get cancer, or are born w neurological disease. I have MS. You do the best you can to maintain their quality of life, and are still cherished family members. Shame on you for posting such negative comments on this post. May I suggest that you get some counseling.


#22

Speaking of tragedies, E. Fuller Torrey’s “The Insanity Offense: How America’s Failure to Treat the Seriously Mentally Ill Endangers Its Citizens” is a worthwhile read. Not something you want to read before bedtime, but a tough reality for many people.


#23

Hello Stan, am so sorry for your loss. it must be heartbreaking! I have a son, an Ontario scholar who developed pschyzoid disorder and he is in a group home now. I am a single mom, and he has a good psychiatrist who is very caring.

tx for sharing your experience, am an American living up in Canada. take care and happy holidays, Mariana Grinblat.


#25

I agree with this… 100%