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perseverer
Senior Contributor

My family is deteriorating and I feel completely desperate

For those of you who don't know me, I am caring for a family of guys who all have MI. My eldest son has schizoaffective disorder, my middle son is autistic and has depression, anxiety and OCD and is being closely monitored for psychosis, and my youngest son has Tourette's. My husband has OCD and Bipolar.

Much of the past year has focussed on our eldest son, diagnosing and treating his psychosis. But all that time my husband started hoarding collectibles. Antique furniture, vases and ornaments began cluttering every available space and then some. And books. We have piles and piles of them building up. The clutter was driving our middle son crazy, really upsetting him. Middle son lives with extreme sensory overload which causes all sorts of problems. Like trying to find a place in the house where he can sleep. He was sleeping next door to our eldest son who has sleep apnea and couldn't stand the noise either of him snoring or of the CPAP machine. So he moved out to the garage, but it is cold and gloomy in there. We bought him extreme glare glasses and noise blocking ear muffs but this is not enough. He insisted that we try and deal with my husband's hoarding behaviour.

When I suggested to my husband that we declutter a little he took it as a personal insult and immediately set about removing everything from the house and dumping it in great big piles outside and in the hallways. This has made middle son happier but makes me feel totally miserable. 

I work full time to support this mad house and I have work commitments etc but am being drawn in to try and resolve the war going on between my husband and our middle son. And now I have to move my office into my middle son's old bedroom and convert my old workspace into a new bedroom for him. Not what I envisaged doing these holidays.

My husband refuses to get help and so does middle son. Our eldest son has a network of support but who is there to intervene and help with cases of extreme OCD?

I would be grateful for any advice as at the moment I have had enough and just want to get out of the place.

10 REPLIES 10

Re: My family is deteriorating and I feel completely desperate

living in a similar nightmare between two fires burned whichever way u turn

questions to ask yourself is leaving a valid option for you? if it is then do it are the family members receiving treatment? can you make the best of it somehow??

Re: My family is deteriorating and I feel completely desperate

Hi @perseverer. Just a thought... can hubby's available space be restricted? He can have one whole room in the house (or the whole garage) and the entire collection has to go into that room and nowhere else. And keep the door closed so you don't have to see it.

Re: My family is deteriorating and I feel completely desperate

Hi atpatientpatient, 

A room of his own is what is needed, but we are all out of rooms and it is a five bedroom house. Ideally we would move to bigger and bigger houses until there is enough room for everything he wishes to collect. In order to give my husband a room of his own I would have to reliquish my own room and it is my last bastion of privacy, so I am loathe to consider it. Before, it was the garden, and every week he would buy hundreds of dollars worth of new plants, bulbs etc - a truly spectacular, totally manic garden. But now he is trying to control the house as well. I am scouring the real estate ads to see if there is a suitable place available to accommodate all our needs, especially as none of my sons will every leave home in all likelihood.

Re: My family is deteriorating and I feel completely desperate

Hi madmother13,

The guys are way too ill to make leaving an option. The main one under treatment is our eldest son. My husband was seen a few years ago and treated for his bipolar. Our middle son sees a psychiatrist regularly. And our youngest hasn't been seen in a while. I had a talk with my husband this morning and told him what it looks like from my perspective ie his hoarding was triggered by our eldest son developing schizophrenia. He admitted he has a problem, but as soon as I tried to discuss what we might do about it he got very defensive about the value and need of the things he collects, such as his books. He agreed to try and contain it eg he is going to try to stick to just lustre ware for his ornaments. He is waiting for the boys to leave home so he can take over their rooms. And in this respect, he is in complete denial of the situation, because our boys are invalids too. I would love to see them get well and be independent, and there is hope for our youngest. But I fear we are going to have three invalids at least to care for. 

Re: My family is deteriorating and I feel completely desperate

Hi @perseverer,

It sounds like you have so much on your plate caring for your family -  having an eldest son with schizoaffective disorder; a middle son with autism, depression, anxiety and OCD; a youngest son with Tourette's; and a husband with OCD, Bipolar, and potential Hoarding. It is understandable that sometimes you just want to escape it all! In this vein, I just wanted to ask, what do you do to care for yourself amidst all of this?

It is especially hard that your husband and middle son are refusing to seek help, with the added complication of each seeming to exacerbate each other's experience of mental illness. However, In terms of support and referrals for extreme OCD, it might be helpful giving the OCD and Anxiety Recovery centre a ring. They providing support, information and referrals to people across Australia, although they are based in Victoria. They cater to both carers and people with mental illness. I have listed their details, below:

Anxiety Recovery Centre Victoria (ARCVic)
OCD and Anxiety Helpline - 1300 ANXIETY (1300 269 438) or 03 9830 0533 Australia Wide
Monday to Friday 10.00am - 4.00pm
www.arcvic.org.au 
 ARCVic services include:

 

I hope that you find this information and the forums useful in gaining some of the support you need.

 

Kindest,

Amour_Et_Psyché

Re: My family is deteriorating and I feel completely desperate

@perseverer..firstly good on you for preserving! I can sort of relate to your situation. My dad is mentally ill, but high functioning. He does not seem to have an illness that gets worse so I think it must be personality disorder and some other things. We have always had to put up with his hoarding. There's stuff everywhere. He's also obsessed with books and giant bookshelves. He's a very controlling man so he would throw out our stuff and fill it with his junk, rotting food etc. Now my brother and I are in our 30s at home. My brother has schizophrenia and does not work... He applies for jobs but 'is not there' mentally to work in a normal office. Anyways he hordes too. Same sort of things. Anyways after years of staring down my violence prone father, I've managed to get him to allow my mother to keep her things. Unfortunately, she had serious depression which is not treated adequately and she has started hoarding...mainly cheap garden stuff. Every so often when it gets dangerous I help her throw things out. My mum every so often sneaks into brös room and throws things out to be hygienic. I throw out some of my fathers things, that he's mainly forgotten about, but he has money so he just replaces it. Every home we've had, he's built a giant shed in the backyard, leaving very little yard and fills it with crap. Anyways... My experience has taught me that buying/renting a bigger house with hopes of having some space does not help, it just gets occupied with more crap. Having a small place is best because then the stuff overflows onto street and the issue then becomes open and not hidden, encouraging the patient to face his problem. Somehow separating your sons that are being affected seems the way to go. It gives enough mental peace for them to get better and function better and become independent. Also hoarding needs to be treated by a professional. But maybe if there's stuff he forgotten about, you could throw them out? I've seen shows on TV about hoarders, where a psychologist comes and intervenes. That may provide you with tips on how to broach the topic. Also on those shows, I've seen partners give the hoarder an ultimatum of leaving if they dont get help. Sometimes it works as an impetus for change. However, if you think the hoarding started whilst eldest is sick, perhaps when eldest settles, your husband will be more approachable about the hoarding? It does sound like there is potential for the situation to get better. Stay strong.

Re: My family is deteriorating and I feel completely desperate

Thank you, @amour_et_psyche. To answer your question, to look after myself I escape into the bush for at least an hour every day. I am a keen border. Thank you for the links; I will follow them up.

Re: My family is deteriorating and I feel completely desperate

Thank you for your input, @Jasminej. Wow you are living with MI parents and a MI brother, so you certainly know what it is like trying to navigate order and peace in such an environment. I agree with you totally about bigger and bigger places not being the answer. The place we are in is more than adequate. I have given my husband the garage and he is busily organising it. Soon it will be full of books and bookshelves, but as long as those huge piles are out of the bedroom and in the garage, I’m happy. Psychological intervention would be highly desirable. I would like to have a psychologist living here, or even just another sane adult. It is not the psychosis or the mood swings that affect me so much as the manipulative, interfering, controlling, sabotaging behaviours that have no basis in reality.

Re: My family is deteriorating and I feel completely desperate

Checking in @perseverer think of you often.
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