Hi @Jo, and thank you so much for your caring and understanding reply. It had me in tears, just to feel your warm sympathy and outreach. For so long I have felt completely alone and ostracised with noone to help or understand. Just judged and helpless.
To answer your questions, first, I think I have tried every avenue of help available, or nearly every avenue. When I contacted my community health centre for support they asked me to put our family's needs in writing, which I did. They asked me to arrange a time for them to come to our home and meet everyone, and I asked for a time after school hours as I am a full-time teacher. They wrote back saying they are not a child minding service. I wrote them a letter they will never forget and they did apologise, but the damage was done, I'm afraid. I could never trust people who have such a mentality as that with something as complex and delicate as my family's mental health situation.
We have had a lot of dealings with psychologists over the years. Son J was required to see psychologists as a condition of hospital admission in the private system. They always wanted him to do things he felt he couldn't do. He could not hack feeling pressured. At one time he was seeing a local psychologist for help with his eating disorder. It didn't help. One of the blessings of his present psychotic state is that his eating disorder seems to have abated.
Son G also saw a psychologist for a couple of years to help with his OCD, and it was helpful. But in the past year he has regressed. He is the son I am most concerned about at the moment, the one who most needs help and who is most unlikely to get it. He has been treated for his ADHD by a psychiatrist but he didn't like him because again, he was pressuring him over school performance and homework. All my sons suffer from extreme anxiety and there seem to be very few people who understand that anxious people cannot stand being pressured.
Son J has a case manager since his recent three month stay in hospital. She sees him on a fortnightly basis and there is a team who now monitors his progress and medications. Most of these people are helpful but some of the doctors have attitudes. One recently demanded to know whether son J actually wants to get well. These kinds of inappropriate remarks are severely debilitating not only for son J but also my husband who is also not well. The comment was elicited by my son's inability to snap out of his psychotic state in spite of having been on every available anti-psychotic and having had ECT.
His case worker does not take care of any practical physical loads. She just asks how he is to guage whether the present med schedule is doing any good.
Son C who has Tourette's also experiences frequent anxiety attacks. He has missed a lot of school because of it. He cannot participate in competitive sport, for example because it brings on anxiety attacks. Since the beginning of this term he has been at a new school as on one income I found it impossible to continue with private school fees. At the enrolment interview I presented his problems and asked for him to be put on an independent education plan. But he was told by one of his teachers that because he has missed so much school he will fail because they have a policy (which I was not aware of) that you must have 80% attendance to pass. This comment made him too ill to be able to come to school. I am currently negotiating a meeting with his teachers and people from welfare. Plus my husband procured a three month medical certificate for him. Everything just seems to be so hard. To put it more clearly, I had to write out word for word on a piece of paper what my husband should say to the doctor, otherwise he could not do it.
One of our biggest problems is that my husband, instead of seeking help and support, whenever he was required to be interviewed by a psychiatrist, always put his best foot forward because he does not want anyone to think he is ill. HOW I WISH it was mandatory for psychiatrists to interview carers as well as the patient! So none of the medical personnel we have dealt with really knows how difficult our family situation is. Each psychiatrist only deals with the individual in front of him. And only with how that individual presents while sitting in his office. The only reason son J finally has a team keeping an eye on him is because he managed to spend two days wondering through a state park escaping his imagined attackers, disinvested himself of all his belongings - his wallet, watch and clothes, punched through glass windows to take things from homes he though were placed there for him to use, scrambled naked over barbed wire fences and finally got spotted by someone, covered in lacerations and badly sunburnt, and thanks be to God that person called an ambulance. Otherwise he would have died out there and believe me, NONE of the people I asked to help me find him did. At least it was now clear, abundantly clear, that my son is capable of harming himself.
My poor son G is declining before my eyes and I know from all my dealings with the system that he is not going to get the help he needs. But I will keep trying. I have made a new appointment for a new psychiatrist as he didn't like the last one. We were advised not to seek a psychologist at this stage because he urgently needs to see a doctor. In the past year I have watched him become increasingly withdrawn and of course I am worried sick. He kept refusing to see professional people. As he is 17, I am only going to be included if he consents. Fingers crossed.
I used to employ a carer (when son J was catatonic) but she is now an invalid and has her own carer. I cannot afford it now anyway.
No, no family or friends who can relieve me of duties for respite. HOW I wish there was some form of respite. The worst times are when my husband is depressed and psychotic. He stays in bed for months on end and those are the times when I come home from work wondering if my family is still alive.
To keep my batteries charged I go out into the bush nearly every day for at least half an hour and do birding. I am able to do this because I live near bush reserves. I also have a book club I go to once a month. But when my husband is depressed and psychotic it is impossible to do anything and I really dread having to go to work.
Thanks again. Because I am a teacher I do not want to say where I live. My husband is very sensitive about anyone knowing his condition. Thanks again for all your understanding and kindness, it is very much appreciated.
