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I am a carer and being cared for at the same time

Hi Everyone. I’ve used Patient style forums in the past due to being rather unwell and found them useful.

Today I suddenly wondered if there is such a forum for family members of people suffering from mental illness. Our adult son has a serious long-term mental illness and lives in a supported residential care unit.

Caring for him became emotionally very stressful. We were not all that involved in his physical care but had to deal with many episodes of psychosis as he was very irregular at taking his meds. The medication helps when he takes it but it has not really motivated him to do much with his life or to become independent.

Then a few years ago he began to drink and slide badly. Gave up all forms of hygiene and became a hermit in his bungalow which became unfit for human habitation.

Being his parents he did not allow us to teach him. He is highly intelligent and knows everything best most of the time. When he is stable he is loving and kind and can even show a lot of empathy. However he demands to be treated as an adult, which we fully understand and his wish for independence is something we share as well. A few years ago he had a very good Case Manager when he became unwell, who told us that the best thing we could do for him was to make him homeless but at that time, we couldn’t go through with it. Then sometime after that he became very unwell.

We took in seriously what his Case Manager advised we jumped into action.

We had grown fearful of his verbally abusive behavior, and could feel it getting worse, and feared for our safety. We took advice to get an intervention order taken out so the hospital couldn't simply send him home once he is full of drugs. That was the first extremely traumatic thing we had to do. Next came removing our permission for the bungalow to remain on our property. Hence making our own son, sick as we was, homeless. It is difficult to describe how painful this can be. I always wanted our home to be a haven of refuge for family members if the need arose. Throwing our son into the street, or making him homeless nearly killed me. But it was the only way that we knew of which would force the hospital (against his will) to accept some other type of accommodation. They found him a room in a Residential Care Unit.

All went smoothly at first but the care unit that he was in was a bit rough with many people with dual diagnosis (including drug addiction) and criminal records. He ended up getting involved with risky behavior and he got unwell again. We found him a quieter Residential unit to move into.  This care unit is quite expensive so we are currently subsidizing his rental. Things were going well until he recently became unwell again.

The reason is still a bit unclear and the stories we hear from him vs the Residence are inconsistent. However, he was unable to return there until he received treatment. So we ended up caring for him. The Residence had already said he needed to be in hospital to be stabilised. We were put under enormous pressure to take him in. It was the street, or us so we agreed to take him in temporarily whilst they found somewhere for him to live whilst receiving more intensive treatment. Despite input from us (who have seen his psychotic episodes many times and recognise the symptoms) and the staff at the Residence who have been looking after mentally ill people for ever, the Treatment team and their Psychiatrist diagnosed him as yes being ill, needing treatment but not ill enough for an acute psych ward so treatment in our home was the only option. This was impossible where he was living because he refused to behave there and leave the other residents alone.

Nobody saw any improvements in him but my husband tried to take him back to his home. He was going to continue to be treated there. But things fell apart quickly and he ended up on the streets.

The treatment team asked me to fill in a missing person's form with the local police which I did and the next day he turned up at the clinic for his injection. I had rung the team and said when/if he turns up a) ring the police and b) lock him up this time. The treatment team member I spoke with told me it was not up to me to dictate what to do and they would do their own assessment. I told her I can't cope going through another night like the last one and almost shouted at her when she politely asked could they send him back to our place for treatment in the home. Now I felt like the bitch from hell. I had to say NO WAY I AM TOO ILL TO COPE and passed the phone to my husband who is getting too old to cope. He has an almost fulltime job looking after me. He is my carer and I am our son's carer. What a joke.

Anyway a very nice policewoman interviewed our son at the clinic. Rang me and told me that she could not arrest him under the mental health act as he didn't seem to be mentally ill. They had a nice old chat and he was very much aware of what he was doing and so case dismissed he was no longer missing. I kept my cool sitting here wondering what next. How could this policewoman who had been called in by the treatment team about to inject him with his antipsychotic drug, diagnose him as not mentally ill? After a 5 minute pleasant chat? Our son is highly intelligent and can talk for quite a while, have people around him laughing out loud right in the middle of an episode. You just need to know what questions to ask to get the right picture.

Treatment team rang shortly thereafter and told me he had been committed. I got 2 other calls by the team members. I began to think they committed him to avoid having to commit me.

Ok long post. He is safely locked away for now but the problem is not solved. He can't stay in hospital forever and they have told us he refuses to go back to the Residence and has now opted to stay with them on a voluntary basis. That I find a bit confusing. But at least they are aware he is quite unwell and are talking with us.

Our worry is how do we cope with this. We need to put in place support for a son who doesn't believe he needs it. Feels it is his God given right to preach to anyone who he comes across even if they are not keen to hear him. We managed to get the State Trustees appointment as Administrators. We tried getting a guardian for him but that didn't work. VCAT told us that the Mental Health Act would look after him. Well we have yet to see it. When our son hears the word Guardian he goes totally wild as he has heard from other residents what a nuisance guardians can be. However we are at a loss what to put in place to help him from here on.

Not even sure what my question here is. I called myself mother-in-need as I am too ill to cope with this and watching my husband getting more and more frustrated trying to manage life with a very sick wife and a son who needs constant help and support. In fact when he lived with us we had a lot less worry. The issues were that he was withdrawing more and more from social contact and totally neglecting his personal and living space hygiene. Since moving out we have seen a lot of improvements.

Despite his money being managed by an Administrator our son has discovered that the banks allow debits accounts to go into overdrafts so he is once again running up debts. I am no wondering why call them debit cards when they seem to work like credit cards.

 Anyway I am not even sure now what I am trying to get help with. It's all too hard and confusing. We are seeing his Psychiatrist tomorrow. I too am under Psychiatric treatment due to medication I need to take. My husband and I both have a counselor we see to help us with this. Guess it would be nice to hear if others have managed to get help for relatives suffering from a mental illness who refuse to believe they have one and don't think they require any help and don't believe in living by any community rules but doing whatever they feel "God" instructs them to do.

ok that's enough for one post.

15 REPLIES 15

Re: I am a carer and being cared for at the same time

Hi, I'm so sorry to hear about all you have gone through but am able to empathise. I have read through your post carefully and know that what I am going to say sounds impossible but there is no easy answer. The very best thing that could happen at this moment in time is for him to be 'sectioned' or involuntarily admiited into a psyche ward asap. As you'd already know, you'll need to get both psychiatrist and police on side to do this. It is a 'tough love' thing to do but the only safe thing to do for him right now. At the same time, you and your husband need to hand over all trust to the psyche ward staff and turn away. Only for a while. Just 'hand over' and walk away and focus all your time and energy on getting your strength and health back. You will need help for your own mental state as well. I wish there was more I could offer you but what I have just outlined is the 'bottom line' method of dealing with the situation. You are at rock bottom now. And so is he.But if he is in a lock-up ward. you will be able to do this. Knowing he is safe. While he is out and uncontrollable, you as parents, will only be drained more and more and more and become even more ill yourselves. Wishing you love and support and prayers for a quick answer.......X

Re: I am a carer and being cared for at the same time

Hi - being mother to a child with a mental illness is a tough road, made even more complicated when the child is an adult. I am sorry for your situation it sounds very difficult. I have found some peace by realizing that deep down my child with a mental illness knows that he is loved and that we have done our best (even if the outcomes and what happens is not always clear cut). I think that in the long-run focusing on this in the turmoil surrounding mental illness does make a difference. Regards Adlin

Re: I am a carer and being cared for at the same time

Wow,it sounds like you're in a very difficult place.
Most important thing for a person with Schizophrenia,and for you too,is to not have additional stress as this will exacerbate the situation.
There was mention that your son had a good caseworker,but to me it doesn't sound as if they were good because their suggestion to "kick your son out" would only have caused him greater stress which is very bad for his symptoms.
"Tough love" and "hitting rock bottom" may work for Alcoholics,it should never be applied to people with Schizophrenia and would cause extra stress.
Would it be correct to say that your son has a more Disorganised form of Schizophrenia rather then pure psychotic.
In other words,he has "weird" and delusional beliefs and misunderstandings about God etc,lack of purpose and direction etc,but doesn't have major
paranoia?
Does your son literally hear voices in his head or not?
Paranoid type Schizophrenia and Schizoaffective disorder can be much harder to treat with Antipsychotics then Paranoid type schizophrenia.
In addition,these symptoms can also be caused by physical causes like vitamin B12 deficiency,Thyroid disorders etc.
It's important to communicate with your son WHY he doesn't like taking the antipsychotics and to work WITH him to find something.
What it that he says he gets severe side effects of being "zombie like" or he feels that they are not working or he just feels he doesn't need them ?
What is his reasoning?
It seems like your being failed by the Mental Health system,like so many other people and your probably having to deal with Mental Health workers ego's too and them bouncing your son off to each other.
It's a very broken system and it's often more a prison or "holding cell" for patients with mental illness rather than a place that provides actual kind and effective intense help for people like your son.
Even if/when you convince them he's severe enough to need involuntary inpatient treatment he often will not be better when "released" and will go back on a downward spiral.
It's a revolving door system,often run with a prison like mentality,and with no,or little,focus on improving the patients quality of life.
Part of the problem is that the clinicians have poor understanding of presentations such as your sons which involve cognitive decline or severe "negative symptoms" such as apathy.
They only understand Parinoid type/episodic Schizophrenia.
In addition,your sons place of residence doesn't understand his illness causes these symptoms and takes his negative interactions with other residents as a wilful behavioural issue but your son isn't "bad",it's just that the social areas of his brain are affected.
What is your sons physical health like?
Is he overweight?Or pale?Or anything else or is he healthy?
Can you ask him whether he has any physical symptoms?
Your son needs to live in a place he feels and is safe,but at the same time he needs continual and intense cognitive help to understand "reality" and challenge his belief systems,understand how interactions work between people,understand how certain actions affect others.
Your son needs urgent and intensive Cognitive Remedial therapy.
While this will likely not cure him,it may help make things a bit better for his life and your life.
Your son also needs something to fill his time and exercise is a great solution providing he's reasonably healthy.
A cleaner to come around and help clean his place of residence is another option and if this is too expensive then asking a Christian Church for volunteers to help with cleaning would be a good idea.
Your son likely lacks insight into the unhealthiness of his views about life and extreme views about religion etc and insight likely won't come overnight,but your son needs people who will be patient with this,tolerant,kind and compassionate.
You need a future plan of action which could be something like the below
1.Find a GOOD Psychologist/therapist who has understanding about cognitive remediation in people with Schizophrenia(rare to find in this country) or perhaps someone who works with individuals with Autism may be able to help too
2.If your son likes him/her,then schedule intensive and often appointments.
3.Hire a cleaner or ask a priest to ask for Church members help with cleaning/other household duties.
4.Get your son involved in the gym with treadmill,weights
This could boost his motivation,energy,brain circulation,BDNF...etc and also give him a "purpose" and something to do.
F ind a gym ( and personal trainer if you can afford) that welcomes him and accepts him.
5.Ask your son if he has any physical symptoms.
If he does,find a GOOD doctor to do tests to elucidate the underlying cause for all this.
6.Book some facials and massages at the Beauty Salon for yourself as you need things to keep you healthy and relaxed and reduce your stress

Re: I am a carer and being cared for at the same time

Hi Jo. Thank you for your reply and concern. I was probably a bit long in my post giving the background to what led us to where we are and didn't make it very clear that right now our son is in an acute psychiatric ward for treatment. My problem is the amount of emotional energy it took to get to this point. 

We his parents and the residence where he lives were crying out for help from his treatment team and we all felt the response was inadequate for the situation. We pointed out my illness and inability to cope, my husband's age, the fact that the Residence were not able to cope because he was upsetting the other Residents yet they assessed him as not "ill enough" to be put into acute care and told us the only option seemed to be send him home so they could visit him in our home for 4 days whilst they looked into other options. In the end we had agreed to this but saw no move for other opptions being investigated. He was sent back to his residencd and had another blowup as he was still "psychotic". 

Took for him to run away and roam the streets to finally to get the right action. So for now he is safe and being reassessed and having his meds increased and checked. So far no improvement despite the extra meds. 

The main issue I have is how to prevent this from happening again. We are trying to make him independant. With my illness my future is very uncertain and one day he will stand there without anyone to fight his battles. We were hoping we could set things in action that would give him, a vulnerable member of our society, some ongoing protection.

I was advised by my counselor tonight to contact he office of the Public Advocacy and have them investigate what triggered this episode at his Residence. I was also told to remind his Case Manager that she was still responsible for his ongoing care under the CTO so will ring her tomorrow. 

Thanks again Smiley Happy

Re: I am a carer and being cared for at the same time

Hi Ivana,

Thanks for your very informative reply. I need to clarify a few things so will try to be brief in point format. I really appreciate the time you took to answer me and it has given me a lot of food for thought.

1. His ex Case Manager (some years ago) who suggested he needed to be "kicked out" Had been working with him for quite some time and our son was totally against the idea of "moving out" so he suggested that if he were homeless there were options that they could pursue He was actually right in that the lving situation then was not helping him or us He really needed to be in supported care. Being an adult he was adamant he didn't want his "parents" to advise him so ignored our help and lived more and more like a hermit. Since moving him out however traumatic that was, we have seen a lot of improvements. He is learning to live in community and being a lot more socially active. The owners of the Residence he is living in wrote to me several weeks ago how happy they were with him and how helpful he was being. That was a totally new side of him that had not come ot the forefront whilst living with us. So ... as brutal as it sounded and as traumatic as it was it turned out to be the right way forward at that point in time.

2. Our son has some major paranoias which become much more pronounced when he is going through psychotic episodes. He was first diagnosed many years ago after 3 months of treatment in the home as suffering from Paranoid Schizophrenia. He was hearing voices, having hallucinations and major delusions. Some of the voices at the time were telling him to harm himself. But ongoing when his is medicated even some of the delusional beliefs continue. He has  been getting his meds via injection for over a year so he is now more compliant. On top of that he takes oral meds and like I mentioned we have seen great improvements in him due partially to the stability of the drugs and partially due to living in a place he really liked, which was quiet, with only a few residents who he got on well with until this recent episode erupted apparently out of nowwhere. We still have to get to the bottom of what triggered it but it appears there are some relationship issues which have been triggers in the past. 

3. The reason our son was non-compliant with his meds was mainly due to his unusual sleeping habits. He would spend sometimes 3 days without sleep and he only found it necessary to take the meds before going to bed as he wanted to stay up and not get sleepy. Also he lost track of what was morning and night, being 24 hours around the clock on the internet. So it was not defiantly non-compliant it was just simply the schedule didn't fit his lifestyle.

4. You are right about the bouncing to each other by mental health professionals. We seem to be dragged into internal politics which we are frankly not intereted in getting involved in. Hence we will follow our counselor's advise and try the department of public advocate to investigate what went wrong wiht the residence and potentially the commissioner for Mental Health to find out why it took so long to get someone so unwell committed, considering he was already under a CTO.

5. The owner of his residence was very much convinced that what was wrong with our son was a flareup of his illness. Her frustration came when the Treatment team insisted he was well enough to be treated at their facility despite having upset all the other residents. She is more than happy to have him back there once he is stabalised. What the issue is we can't go through this drawn out drama each time he has an episode. There has to be a way of getting faster action from his treatment team and not waiting until all and sundry who are involved become ill themselves Smiley Sad

6. he has been checked out physically quite regularly. As far as supplements if he had his way he would live on supplements and stop eating. He eats them by the truckload when he can afford them. So in his case there is more danger of having too high levels of viatmins and minerals than too low. However tests were done recently and he seems to be ok.

7. The residence he lives in has cleaning as part of the arrangement. The issue is that he has crammed his room so full of stuff they can hardly get in to do their job but they have been accommodating and he moves his stuff onto his bed for them so they can get in and clean. He seems to like hte meals provided too. And 2 weeks ago he was still raving about how much he liked being there. 

8. Our son definitely lacks inside into a lot of things. But right now he is even too ill to get through to him.

9. I need to get him back to his GP to draw up a mental health care plan so he can see a Psychologist. We tried that late last year at his previous residence but there was a long waiting list and by the time we were ready to follow up we had to move him because the place was really not good for him. Then I became extremely ill and spent 5 weeks in hospital and had to let go of a lot of things conerning our son until I was at least semi functioning again. Glad you brought that up I will follow up once he is discharged and more stable again. 

10. Our son is waiting on another support agency to organise gym membership for him. Again all this will only work once he is stable. 

11. The Beauty Salon is a good idea too. My husband has been on my back even to get my hair done Smiley Happy so i shall try to fit that in between all my medical appointments and the follow up for our son.

 Well this got to be a long message again. Thanks for your commetns Ivana it gave me food for thought and helped me clarify things a bit better both here and in my own mind Smiley Happy

 

Re: I am a carer and being cared for at the same time

Sounds like you need family therapy with the psychiatrist so that you can all understand each other. Your son has his issues and you are struggling to support him in the circumstances. Sounds like he is expecting too much from you especially given your age and health, A good psychiatrist can ask he right questions which will not alienate him just come to,some mutual understanding. I live with my brother who has schizophrenia and I am asthmatic. However he won't stop smoking in His bedroom and when he opens the door all,the smoke comes out into the rest of the house, on top,of that my mother is terminally ill with pulmonary fybrosis but still he won't stop,smoking. Very difficult circumstances. Anyway I would suggest you undertake mediated discussion and get him into, supported accommodation good luck.

Re: I am a carer and being cared for at the same time

Thank you Fatima. You are right. It has to be mediated. He is digging his heals in and getting more dogmatic about what he intends to do. Supported accommodation is definitely what he needs however once he has been stabilised he has to agree. The feeling I get is that he can't be forced to go back to his current Residence against his will.

He sent a message to the family saying that he is moving and was asking a family member to pack this things and put them into storage. The place he intends to move into requires a hefty bond, rental in advance and references neither of which he has but this doesn't appear to bother him because right now he is not being rational at all. Then there is the fee for the storage facility.

I replied to his message and explained that he is putting a lot at risk but even my message didn't get through. He simply said he disagreed with our ideas for his future and doesn't want to discuss it with us any further.

My only hope right now is that when he is more stable on the right meds he may start to listen to reason again. His Case Manager has achieved quite a big breakthrough for him by getting him onto a priority housing list but that is subject to him living in an SRS. Should he move into his own sourced accommodation he will probably lose that priority rating. I tried to explain that his decisions now can affect the rest of his life.

I am in regular touch with his Psychiatrist and treatment team. His Case Manager has agreed to mediate between him and the Residence to try to heal the relationship. They are not in a hurry to move him out of hospital as they are still trying other treatments. 

Not much we can do right now other than hope he becomes more reasonable Smiley Sad

Re: I am a carer and being cared for at the same time

Also I would suggest you don't waste too much time and energy with all these discussions about private rental accommodation. For one thing he is not rational and you need to conserve your energy for more realistic options. It seems he wants to identify as others his age living in his own rented place even thigh he doesn't have the means. He is not accepting his illness which is a shame as that is he first step to leading a well,functioning life. It took my daughter who has suffered schizophrenia since she was 23 , two psychotic episodes and two hospitalisations for her to accept her condition only this year at age 34. Anyway it is good he has a good mental health mentor who. He listens too

Re: I am a carer and being cared for at the same time

Thanks Fatima. We had a long session with his treatment team yesterday and they are slowly bringing him around to accepting temporary accommodation in a none-acute psych facility and still hope to be able to convince him to return to the SRS or to at least try another SRS as they are also convinced he is not ready to be fully living independantly.

He has never accepted his mental illness. Deepdown he refuses to believe it even though in the last year he has admitted the drugs are helping clear his mind. That's been a big step forward. Our son is older than your daughter and was diagnosed 20 years ago but probably ill a few years longer than that. Took us a while to accept it ourselves.

I am toying wiht the idea of going back to VCAT and having a guardian appointment for accommodation decisions. He won't be happy with it but at least it gives him some safety from himself and from others as at the moment he is very vulnerable and we worry who would look after him when we are no longer around. 

Given my own poor health it has hit home to me to start making plans for when that situation happens. 

I am glad your daughter has come to accept her illness. I fully agree that healing can only occur once they are aware and will accept all the help they can get.

 

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