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Averting a Disaster

I am a teacher, and currently home on holidays. What a difference this makes to my MI family! My husband and eldest son are managing their symptoms, but my middle son is out of control and in denial. I had put his behaviour down to extreme OCD, but a friend observing recently commented that what he is doing is "delusional", and the scales fell from my eyes. As his psychiatrist and I had both feared, he is showing signs of onset of schizophrenia. That makes three adults with schizophrenia all trying to get by in the same home with no permanent carer!

I am sick of wringing my hands, crying and being stressed to the point of exhaustion. I am thinking seriously of setting up a charity to help my family. They need a full time carer. They need a larger home with facilities to aid their rehabilitation and recovery. And they need a passive income managed by a trustee. Does that make sense? Thoughts?

53 REPLIES

Re: Averting a Disaster

Hi @perseverer, What happens when you're at work? Do they 'mostly manage'? I understand what you're saying about supported accom and trustees, and that's a long term worry for me, and I'm just dealing with one case of Sz. Your solution might come down to finances and what's affordable. And an alternative is how to make your current place suitable. 

Re: Averting a Disaster

Hi @patientpatient, no, they do not manage. So often I get called at work either by one of my children in crisis or by a psychiatrist at wit's end to know how to manage a crisis with my son in hospital. I come home to a battle zone because the son who has severe OCD has compulsively moved everything and my husband is having a melt down and the other son feels unsafe and wants to go to hospital.

Yesterday is a point of illustration, and compared to days when I am at work, it is not so bad, because I am still home on holidays and I was actually able to manage the situation. The OCD son was invited to go to Sydney to visit a friend. My husband is too drowsy from medication to be able to drive most of the time so I had to take him to the airport about 1 1/2 hours drive away. Knowing this son's need to perform endless rituals I got up very early and asked him to be ready. I had planned to leave at a time three hours before his flight was due to leave and informed him of that as well as the reasons why. When that time came he still wasn't ready. I know we have to be on the road by 5:30am at the very latest to beat the peak hour traffic. But you cannot apply pressure to this lad; he can't handle it. So I told him it was important to beat the traffic and arrive on time for his flight and I would wait for him in the car. Well it was 5:45 am before he got into the car. And we had peak hour traffic and crawled at a snail's pace. To make things worse, there was a crash on the highway and traffic came to a complete standstill. When we got to the drop off point he had 13 minutes to departure and ran for it. Amazingly, he actually did make the flight.

But coming back was a different story. He did not make it. He did not check in on time. They made him re-schedule his flight. This was going to cost $150. I had given him $150 before he left, but that was gone. And I couldn't help; I had just come back from a birding trip which required the hire of a 4 wheel drive, the security deposit for which cost $1000, and I was still waiting for it to be reimbursed. So I had to do a phone around to see who could help. 

Before this, I had actually got as far as the pick up point at the airport before I got his message about missing the flight. So I went to a road nearby to try to relax and work things out. No-one else in the family had any spare cash so I phoned my sister (most reluctantly). She is on a disability pension and her husband cares for her and their two disabled daughters (Asperger's and Gray's Disease). She said her pension does not come in till 2:00am but her eldest daughter got her first paychecque today and she would put it in her account and we could use that. Imagine how I felt, having to avail myself of money from my disabled niece receiving her first paychecque. The transaction went through, the ticket was re-booked, and my husband and I bunkered down for a 2 1/2 hour wait.

Finally it was time to return to the airport and pick up our son. But there was a new fly in the ointment. The road to the airport was closed for roadworks and a detour was in place. This was not at all clear, especially to someone unfamiliar with the route. My husband refused to drive and kept hollering directions that were incorrect. Although he is on an anti-psychotic he still has perception problems. He would tell me to go straight ahead, for example, when in fact I had to turn left. In the end I realised he was having problems and had to completely screen him out and work it out myself. Then he was shouting at me for ignoring his directions. But when he realised in the end that I had got us to where we had to be he quietened down.

The original plan had been to pick up the son and be home by 6:00pm for tea. But now we wouldn't be home till after 11:00pm. So I had to phone my eldest son and ask him if he could cook something for the youngest son and his friend who was staying the night. He refused. He said he didn't feel well enough. So I just said look, there's plenty of food in the house. Get the boys to make themselves something.

When we got home, my husband sat down at the dinner table waiting for a meal that I had to cook from scratch. We ended up eating at close to Midnight. My youngest son and his friend had made themselves bacon and egg sandwiches and they were happily playing a game of Monopoly. It was an unbelievably consoling sight of normality in our insane environment. I left the room for a toilet break and when I came back, the OCD son had rearranged things including the garbage bin, with which he has a particular obsession. It was now sitting in the middle of the dining room floor. He had removed packets and trays of meat and these were sitting out on the kitchen bench. Why? He had been given and had eaten a cooked meal. He had moved the half drunk bottle of diet ginger ale I had been consuming and I spent fifteen minutes looking for it.

And while all this was going on, the eldest son wanted chats. For this we have to go into the main bedroom and he tells me how depressed he is feeling and how hard he finds it to face each day. He wishes he could just wake up in the morning and look forward to the day. We had already, earlier in the day, been to see his case worker and psychiatrist and his depression was discussed, along with his restlessness and continuing episodes of psychosis. So a plan is in place to help him with his depression. It is a juggling act, because the anti-depressant medication undoes the effects of the anti-psychotic medication. He is on 2 anti-psychotics. They thought they would try to reduce the amount of anti-psychotic in order to address the debilitating restlessness. But we have to keep a close eye on things because with less anti-psychotic in his system his psychosis might worsen.

So imagine how I feel about returning to work with this going on in my eldest son's life and my husband's inability to cope with it.

When we first bought our current home it was ideal for us. But that was before my husband and second son became ill. This son, the OCD one, (who is actually showing signs of delusion), suffers from extreme sensory irritation. He wears extreme glare sunglasses even in the darkest rooms. He wears sound blocking headphones but even with this, the noise of his brother and his friend, who are quiet, polite boys, was unbearable to him. We really do need a larger home where the boys can all be well separated. Anything that could help my eldest son to feel a little more joy in the day would be a bonus. 

 

 

 

Re: Averting a Disaster

@perseverer Hi perseverer are you able to build onto your current house. Have seperate levels put on or have a granny flat for at least one of the boys maybe your ocd one out the back where he will have peace and quiet to organise his own things. Would either of those two things be an option to you?

What about organising help through the NDIS, @eth is currently battling away trying to work the system to help her in her day to day activities. That could also be of help to youl. I know it seems bleak but there are carer organisations (again eth can help out here) out there who take people places who could have taken your ocd son to the airport for you. Just less stress on you and the family.

Don't despair there is always hope .... it just sounds to me like you are totally overwhelmed atm and alone in trying to figure this all out. gp

Re: Averting a Disaster

@perseverer @greenpea  I was also going to suggest the granny flat, or a caravan in the back yard or convert the garage. Buying/selling a house can be hugely stressful. Open for inspections, people walking through at inconvenient times, keeping everything tidy... I find that hard with just two in the house. I read your other thread 'if I don't get help...' and there's so much going on.... but it sounds like assisting middle son is the key. Is he getting treatment? I think someone mentioned go/no-go zones, did that work? 

 

Re: Averting a Disaster

Hi @greenpea and @patientpatient, no, building is not an option. Since my husband left work, nothing requiring additional sums of money is an option. At present there are several outstanding maintenance jobs that need to be done and no money to do them. I am hoping to get to them throughout the year, but nothing is happening quickly.

Actually, moving would be a good option for us. I know it is stressful, but it is not as stressful as the painful memories of what has happened in this current house. In particular, my husband withdrawing all his super and going on a gigantic spending spree, inflicting a heap of bling we don't need on the family that drove our middle son crazy. And the war that has raged between them over removing the clutter.  But my middle son is now beyond trying to fix something he found disturbing. He is compulsively interfering in everything, no matter how well-ordered it is and he cannot see the irrationality of his actions. 

The NDIS does not get here until September and I still have no idea as to whether it will make the slightest difference to our circumstances. I suspect it won't, and that is because the whole system is so geared to the individual patient, and not the the whole family. And certainly not to situations where an adult child refuses help and treatment.

Yes, I am overwhelmed and alone and struggling to stay afloat. I started writing a screenplay and am finding that very therapeutic. My anger and frustration do not come through in that genre - it just paints a picture, and there is a superabundance of material to base it on.

Re: Averting a Disaster

 @persevererI think I remember your previous posts on this and yes you have your hands full, particularly with your ocd son and husband. I am hoping that @eth will be able to help a bit with on the carer side and the NDIS (even though as you say the NDIS probably won't help you.). I will brainstorm this for a bit longer and see if I can think up anything that might help.

I am really happy though that you are writing the screenplay and that you are finding it therapeutic. That is a wonderful outlet for you. gp

 

Re: Averting a Disaster

@perseverer perseverer I have just had a thought if you did sell you could have a huge garage sale and sell alot of that 'stuff' that your husband bought both at the sale and online. Would that calm your ocd son down if that was the case? House sales are always good ways to clean up before the move.  I know your husband wouldn't like it but .... you know if it was my husband I would be saying 'To bad!' .... anyways just a thought

Re: Averting a Disaster

Hi @greenpea, I am giving all available options a lot of serious thought. I have seen the house I want, but it is one million dollars too expensive. So I am looking around to see if there are other homes for sale that have the features of this house with less expense. In particular, I need more than one bedroom with an ensuite, and bedrooms that are widely separated within the house. It would also be good to be in an elevated position with a view. A view is very absorbing. Sometimes, all my adult son with schizophrenia can do is move from one location to another because his concentration is non-existant and he is too restless to be able to focus on a particular activity. He likes to just sit outside with someone and have a coffee or a glass of wine. A big billiards table would be good.  An indoor pool (ie no social phobia with going to public places) would be ideal for exercise and relaxation. And a sauna. A bedroom with an ensuite located over a garage would be perfect for my son with OCD and Autism. (And actually, it is looking increasingly likely that he is developing schizophrenia as his behaviour is very deluded). He is so light sensitive that to be able to retreat into the darkness of a garage from his bedroom would be very beneficial. A room with massage chairs would be good for the whole family as would anything that promotes relaxation as the family's anxiety levels are off the radar. And finally it would be great to have at least a couple of acres to grow things. This is my husband's passion. The garden gets him out of the house and away from everyone else's mental health problems. He needs a large expanse to work in that cannot be easily sabotaged by the middle son. This house needs to be close enough to our suburb to enable our youngest son to continue his schooling. It needs to be in a very quiet, green, peaceful location but not anywhere there is a risk of bushfire or snakes. So I am looking. Plus if I find a suitable place, I will hire an interior decorator. The whole family has agreed to abide by the furnishing decisions of an external source. So that is a big step forward in the right direction.

Re: Averting a Disaster


@persevererwrote:

.... He is so light sensitive that to be able to retreat into the darkness of a garage from his bedroom would be very beneficial...


Hi @perseverer, that's a well thought out list, hope you can find somewhere suitable.

Just a note on delusions and sensitivity... as quickly as they appear, they can suddenly disappear. My son (Sz, OCD) had many sensitivities that controlled his life, but now many of them have vanished. I went as far as putting the house on the market, moving interstate to a rented house with no carpet, no TV, no heating, isolated location... and all that fell apart and years later we're now back in the original house. He's now super comfortable in a house that he once could not live in. It's difficult to plan around some of these things. You might find that treatment eventually moderates some of the problems.

 

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