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perseverer
Senior Contributor

I am desperate

Hello, I am so pleased to find this forum. My husband has schizoaffective disorder, our eldest son also has it and has been battling psychosis since April, our next eldest son is autistic and refuses to admit it. He has ADHD and OCD, left school last year having failed everything and has not looked for work. Our youngest son has Tourette's. My husband had to leave work last year - he was a wonderful primary school teacher. He is manic most of the time, gets up at 4:00am and energetically starts cleaning the house. The main problem is his spending sprees. He was borrowing from his mother's account then demanding "we" pay it back. At first it was $2000 a year but the last two years it was $42000. When he left work he withdrew his superannuation and spent the lot on things for the house such as rugs and ornaments. Our stove and oven are broken - I am trying to cook for a family of five on just two hotplates. When he crashes with depression he can spend months in bed, completely helpless. Pschosis comes on without any warning - you can think everything is going ok with him and then he will say something that makes you realise he is not in the land of reality. Our eldest son has a long psychiatric history, beginning as OCD in early childhood, then depression and anxiety, finally catatonia when he went full turkey off his meds, then he had a psychotic episode he was lucky to survive earlier this year. The most recent diagnosis is schizoaffective disorder. I have to work full time to support the family and I feel terrifed and gutted every day going off to work knowing mentally ill children are in the care of my mentally ill husband. Our next eldest son badly needs help but everyone is so needy, there are not enough hours in the day to cope with it all and not enough pairs of hands. He sits in the dark all day, cannot bear the sound of people eating, so he eats alone, distributing food all over the house. He urinates over everything. His bedroom reeks of ammonia. He will not sleep in his bed, he sleeps on the floor and has burned the carpets with urine. He finds it very, very hard to communicate. the demands of my job make it very hard for me to even do such a simple thing as make an appointment to see a psychiatrist. My husband cannot do any of these things. He will not use a plastic transaction card, he will not type anything online, he will not make phone calls. I just feel desperate trying to do everything when everyone is so ill and I have no help.

13 REPLIES 13
Jo
Senior Contributor

Re: I am desperate

Hi Desperate. I'm so sorry to hear all this. It's more than an enormous load. Two things jumped to mind immediately. First, have you applied for help outside of your doctor? Your local community health centre will be able to give you advice on receiving help for the members of your family, such as the services of a psychologist and counsellor and a case manager who visits and can take on some of the practical physical loads. Unfortunately this type of help varies according to where you live. For many years I was unable to receive help because there was no local community health centre anywhere nearby. Right now I am close to one and my son has a team of helpers in the form of counselling, being driven to an appointment when I am unable to do so as well as seeing a doctor and a psychologist.
The second thing that came to mind was the obviously very stong need for you to receive help also. If you keep going at this rate, you could burn out. Then, who would look after your loved ones? Your local community health centre could advise if you have a carers' group who meets regularly near you. It is good to be able to mix with other carers and share your experences freely and easily, just as you can on this forum. Do you have any other family members or friends who could stay in your home for a few hours on a weekend to enable you to do something on your own? Even something as simple as going for a walk or attend a course in a subject you are interested in, going to a gym etc. I feel you are in very real need of help. Where exactly do you live? Don't worry about disclosing this information. You are 100% anonymous here on the forum. I would be happy to make the enquiries for you.

Re: I am desperate

Hi @perseverer

Welcome to the Forums! It sounds like you have the weight of the world on your shoulders caring for your family. In a word, you are superwoman. Some great suggestions by @Jo and I completely agree, it sounds like you need some more support. ARAFMI are a carers organisation devoted to supporting people who care for someone with a mental illness. Have you heard of them? They provide a range of practical support, as well as counselling (even over the phone as you said you are time poor), that you could link in with. 

There are a few members on here that may be able to offer some support around the circumstances you are facing. I know @kenny66 has a diagnosis of schizoaffective disorder. If you're interested, you can read a bit more about his story here. Fellow carer @Sunny has shared about their brothers roller coaster journey with schizoaffective disorder here and a few other members have also jumped in to share their experiences about reaching their limit in supporting their loved one. @Mrscaptargo 's husband has a diagnosis of schizoaffective disorder and she has shared about her experience here.

Also, a while ago @zipper began a discussion about wives caring for husbands, which many people in the carers forums continue to find helpful. Feel free to join in that conversation if you feel moved to.

I hope some of these members and others might be able to share with you a bit more about their experience, and that you are able to get something from hearing their stories as well.

Again welcome to the Forums and look forward to seeing you around the place! Smiley Happy

Re: I am desperate

Hi and welcome to the forum 😊.  I can not even begin to imagine how difficult things must be for you and am suprised that you have not crumbled under the weight of all of this.  I'm at a loss as to even know what to say or suggest but want you to know that you must be one hell of a strong woman and that my heart goes out to you.  My concern however is how long you can continue doing this before you crack, as this sounds unsustainable.  When there are so many things going on, sometimes it helps if you can enlist the help of others, even if it's just to do one small thing.  I'm not sure what supports you have tried, or what help for your children you have had, but I would highly recommend getting in touch with a Social Worker to discuss all your problems in the hope that they will be able to link you to support services and work as an advocate for you.  Your son (that urinates everywhere) sounds as if he is in need of some sort of intervention.  I'm not aware how old your children are, but if they are still under 18 I would highly recommend discussing a possible admission to a Child & Adolescent Mental Health unit so that his behaviour can be observed and potentially stabilised.  Is your husband receiving a disability support pension?  If not, he would certainly qualify.  Additionally, you may want to make an appointment with Centrelink to discuss your situation and the possibility of getting social security support e.g. carer's pension, allowance, rental assistance, community housing, etc, etc.  

I take my hat off to you.  Looking forward to hearing more from you.

Take care

Janna 💛

Re: I am desperate

Big hugs....I understand a lot of what you are going through and I am going to say you are amazing. You are so strong and I admire that.
Out of my 8 children two of my children are autistic and a third suffers ADHD.....it has been such a long road with them and my husband as I can imagine it has been for you. ❤️

Re: I am desperate

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.

Re: I am desperate

Hello @Mosaic and thank you so much for your reply. To be honest, I have never talked to anyone from ARAFMI, although I am aware that MIND helped my sonJ to do a one day course. That was when he was manic, just before the psychosis set in. He couldn't do that now. Time availability is my biggest problem. But I should contact them and see what they can do.

For a time I was seeing a social worker at my community health centre and she gave me some counselling, but really was just as cognizant of the degree of difficulty as I was. The main concern at that stage, while I was recovering from knee surgery, was my inability to sleep due to son J's suicidal ideation. Since son J's psychotic episode and most recent anti-psychotic medication he goes to bed at a decent hour and hs to be woken in the morning. So that is something - I am finally able to get some sleep myself.

I will look up @kenny66@Sunny , @Mrscaptargo and @zipper's posts. Thank you for suggesting them. It really is wonderful to find a place where I am no longer alone but can connect with people who know what it is like. This forum is great!

Re: I am desperate

@Janna, thank you so much for your reply to my post. I am so worried about my son G, the autistic one. If only he could be observed in a child and adolescent mental health facility. Alas, the only way to get admission is if he harms himself or someone else. I have lost count of the number of times we have spent long nights waiting for psyche triage in my family. Son G's brother son J was badly scratched all over his body, and hallucinating the first time he ever got admitted in the public system. In the past he could not get a bed, in spite of catatonia and attempted suicide. I cannot afford private medical fees any more for the whole family. It is all I can do to afford the 7 specialists we employ and the truckload of meds. This is why it has been so hard for my family. All of us are gentle and polite people. We do not rant or swear or physically attack other people, even when severely ill with a psychotic episode. 

I will say this too. The psyche ward is not a nice place to be. It is noisy. Patients and their carers alike are ignored for large portions of the day. I do not want my son G going there.

This is what I wish could happen, Janna. I wish my community had a team of mental health experts including psychiatrists, psychiatric nurses and social workers who would come to my home and take my word for it that I need help. For a time my family lived in New Zealand, and this is how the system worked there. It was community based in the fullest sense. I had only to phone the psychiatrist and say my husband needs to be admitted and he would come straight around and pick him up and take him to the ward. He would even take his tea on a plate and heat it up in the microwave. Nothing like that degree of practicality here. As the carer I am usually shut out and not taken any account of whatsoever.  

My children are aged 27, 24, 17 and 15. Only one is still at school. My daughter is in England, and I don't blame her one bit for wanting to be far away from the rest of us.

My husband receives no pension at all. That is because I am on a good professional wage. He does not qualify. Also, he did not do well in applying for a disability payout from his super company. That is because he did not really want to be considered to be ill. The psychiatrist refused to believe that the smiling, congenial man sitting in his office was incapable of working. But it is a fact that my husband has been unable to face going to work for some years. I even obrtained my husband's medical records from New Zealand - files as long as my arm - and even those records did not make a dent in the doctor's opion. Ah well - such is life.

Janna, I cope because I have to. Not coping just is not an option. 

Re: I am desperate

Thank you, @Lost1. It sounds like we have a lot in common! May I ask how old your children are and are they all still at home? Do you have someone helping you when your husband is ill? Thanks again. (((hugs)))

Re: I am desperate

Our children are 15, 13, 9, 8, 6, 4, 2, 4mths
...... Luckily we live next door to hubbys parents so they can support me but most days it's just me doing all the supporting, hubby isn't always a fan of his parents and he certainly doesn't know all that I discuss with his mother. 🙂

I have no relationship with my mother or her husband and my father is in and out due to his own mental illness.

 

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