A Guide for Carers

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CARING FOR SOMEONE WITH A MENTAL ILLNESS

From my own experience

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INTRODUCTION                                        

I have been a carer to a relative suffering from a mental health condition since 1994.

I have experienced quite a few problems along the way. This is why I am writing this leaflet. In the hope I may help another carer. I knew nothing at all about the condition my relative had been diagnosed with. All I knew was what I had heard through the media, which sounded pretty scary to me. I now know through a lot of research I have done and my own experiences, the stories I had heard were more fiction than fact. I am the type of person who, to be able to deal with something I first have to understand it.

I cannot see how anyone can care for someone, without understanding the condition the person they care for has. This can cause a lot of stress to the carer and the family. It can also have a major effect on the person being supported or cared for. 

Who is a Carer?

A carer is a person who cares for somebody with a disability. This could be a relative or friend. The person being cared for could live with the carer or at another address. 

Who is a service user 

You may come across these words on occasion.

A service user is a person, suffering from a mental health condition (or other disabilities). Who use the services provided by the health authority, i.e. psychiatrist, CPN Community Psychiatric Nurse, Social Services. Who may visit the service user at home. This would also include other services such as therapeutic activities. A lot of people do not like the word service user for many reasons. 

Mental Health Conditions and Their Symptoms 

The first thing I would like to point out is no matter who you are; we all have the potential to suffer some form of mental health problem in our lifetime. Nobody is immune. Stress is one of the main factors. The feelings of stress is something we can all relate to, stress in itself is affects our mental health. 

In Devon alone more than 250,000 people have been diagnosed with a mental health condition. This is from mild to the more severe conditions. The main trigger seems to be stress. We are all different and act differently in different situations. 

I do not want to get too technical so I will only refer to one chemical/hormone in the brain, which seems to have a lot to do with all forms of mental distress. Serotonin

This includes stress, depression (even pre-menstrual tension) Bi Polar (manic depression) and schizophrenic type conditions. To me all of these words are just labels. I do not want to single out a specific condition, because a lot of symptoms can be experienced in all of them in some way.

 Not sleeping very well or excessive sleeping. This can also be caused by the sedating effect of medication, over time this can lessen. Nightmares are also common and can be extremely frightening.

Deterioration in personal hygiene.

Not washing or changing clothes, loss of motivation is common. You could prompt or coax the person to do this, sometimes this may work other times the person feels so low  everything is just too much effort.

Social withdrawal, isolation, reclusiveness.

Not wanting to leave the house, not wanting to talk to anyone, spending a lot of time shut in a room on his or her own.

Deterioration of relationships with friends and family, not wanting to mix with people even those he/she is close to. This can be a very lonely existence.  

This can be worrying and distressing for the carer, you can feel utter helplessness. At his worse the only person my relative would speak to was me, anyone else he would totally ignore.

Dropping out of activities or life in general.

This would include work, hobbies, and academic studies, athletics all the things he/she once enjoyed.

Forgetting things

For example forgetting to pull the flush in the toilet, forgetting to turn the water tap off. You could ask him/her to do something and he/she could answer you and still not do it. This could be irritating to the carer and family. It can look as if the person is lazy, I have noticed with my relative it is almost as if he can only focus on one thing at a time. Making a coffee or a sandwich for example he can take all the bits out of the fridge, then not put anything back. It is left where he used it. Easy way around this is to ask or remind he/she to put things away just as they have finished the task in hand.

Clumsiness 

Either being heavy handed, example wasting or spilling things. To dropping things or knocking things over. This is linked to co-ordination which can also be affected.

Inability to concentrate or cope with minor problems.

The affects on concentration  could include not being able to follow a TV program, read, listen to music, even performing a simple task like making a cup of tea. Easily stressed when trying to do something

Paranoia

This could cover a wide area. He/she may be convinced people are talking about them, close family, friends or even people he/she does not know. He/she may even confront the person they think is talking about them.

To another extreme he she could believe somebody is going to kill them or somebody in the family.

He/she may repeatedly check door and window locks, barricade there selves in a room Become very protective towards the family, afraid they are going to be killed.

He/she may think they are being poisoned and refuse to eat or drink.

Through my own experience I came to the conclusion my relative was very well aware something was wrong with him, he said this often enough. He was trying to find an explanation for his symptoms, being poisoned was one explanation.

These sort of symptoms can create extreme fear and anxiety. It is all very real to the sufferer.

Lack of Motivation

He/she could lose the incentive to do anything at all. Just sitting day in day out doing nothing.

To somebody looking in from the outside this could look like he/she is lazy, and create resentment towards them in the family. When in fact this is part of the symptoms of the condition he/she is suffering from.

This could go on for quite a long time

Drug and Alcohol Abuse

It is not unusual for a sufferer to turn to alcohol or drugs. To him or her it can be an escape from their symptoms.

To the carer and family this can look like self-destruction.

Alcohol in excess is not good for anyone and can become an addiction.

Not all illegal drugs are addictive but some are.

The problems with using illegal drugs are, even though they may relieve the symptoms for a short time. The after effects or come down can create the symptoms of the condition the person is suffering from. Then cause a relapse.

Some professionals have suggested drugs can cause mental health conditions others have different opinions.

There are a lot of theories to the causes of mental health conditions, which is all they are theories. At this time nobody really knows what causes these conditions. Though through research findings there is an indication towards genetics in some conditions.

Mental health was around long before illegal drugs were. From my readings I have formed the opinion illegal drugs can cause similar symptoms to specific mental health conditions, when the drugs wears off so does its effects.

Just the same as the medication prescribed to treat these conditions, if you do not stick to the medication its effect wears off and the symptoms return. Note: if the person stops taking medication,  especially if stopped instantly. this can very often trigger a very fast and rapid relapse.

Having said all of this my own feelings on illegal drugs are they are bad news for anyone ill or not.

Hearing Voices

This is usually linked to Schizophrenia but can also happen to somebody suffering from severe depression, not a lot of people are told this. For this reason I am against labels for mental health conditions. Just the mere diagnosis of schizophrenia is enough to affect the persons mental health even further. I have witnessed this first hand.

Not all people are distressed when they hear voices, some are complimentary and pleasant, others can be attacking and threatening to the sufferer. The latter can be very distressing and frightening to the sufferer.

To the sufferer the voices are very real and give the elusion the voices are coming from outside.

The voices may appear to come from the TV, the radio, music centre, outside of the house or in the room or another room in the house. You will have a hard job convincing him or her the voices are not coming from these sources.

Depending on the contents of the voices depends on the effect it has upon the sufferer, some can be so distressing it can lead to thoughts of or attempts of suicide. 

Researchers have used brain-imaging techniques (using a brain scanner)

This technique has shown which part of the brain is active when a person is experiencing psychotic symptoms (voices). It has shown the voices originate from within the brain.

There are all sorts of theories as to how a person with psychosis may hear voices. The Medical Model makes the most sense to me.

This theory involves two parts of the brain working at the same time, instead of independently as in non voice hearers. The Brocas area of the brain is normally activated when somebody makes inner speech. ( Thinking ) Such as when reciting a poem to themselves.

The auditory Cortex is normally activated when we hear sound ( the hearing part of the brain)

When he or she is suffering from paranoia, he or she is thinking about what they are paranoid about. The inner speech part of the brain is then activated and at the same time the hearing part of the brain activates this gives the elusion of a real voice coming from outside. When in reality the sufferer is hearing their own thoughts of what they think somebody else thinks of them.

You could have a problem getting him or her to accept this explanation because the other problem is the voice or voices they hear is not always their own voice. There can also be more than one voice heard at a time.

Try to imagine the turmoil this could cause him or her. Some people could look upon this, as madness there is no such thing as being mad it is just another label. If you heard somebody's voice you would expect it to be coming from a physical person. No different than the person who hears voices. This sounds pretty logical to me, not signs of madness. Very often the person experiencing these symptoms can self stigmatise, look upon their self as they think others view them. Referring to their self as mad etc: as my relative did. My answer to him was if there was such a thing as being mad, you are certainly not it. If you were mad then you would not be questioning your sanity!

To help the person get through this, accept and acknowledge the fact the voices they hear are very real to them. Try to explain how they hear the voices, they are coming from their subconscious thoughts. The more distressed the person gets the worse the voices may become, hence the more agitated the person may become.

Try to remain calm when talking to the person, reassure them you are on their side and would not let any harm come to them, be understanding towards the way they feel, try empathising and reflecting on how you would feel if you were experiencing the same symptoms. Talk to the person as you would any other, treat them as you would a friend, even if you are their parent.

Be constant in your support, most of all give them hope for recovery. Keep telling them they will get through this, the more you say this and believe this the more the person may pick up on your positive attitude. Being positive and encouraging can all go towards helping them to recover.

Other symptoms

A shift in basic personality

Irrational statements

Unexpected hostility

Hyperactivity or inactivity

Extreme preoccupation with religion or the occult

Excessive writing without meaning

Extreme reaction to criticism

Inability to express joy

Inability to cry or excessive crying

Inappropriate laughter

Unusual sensitivity to noise,light,colours,textures

Can smell or taste things which are not there

Attempts to escape through frequent hitch hiking trips

Thoughts or attempts of suicide

Sensitivity or irritability when touched by others

Suspicious and mistrust towards people even in their own family 

These symptoms are a guide and do not mean the person you care for will experience all of them or any of them come to that.

On the other hand if he or she does experience any of these symptoms I hope it will explain this is part of their condition and not your relative being awkward, lazy or rebellious.  

Hints on How To Cope

The most important thing I feel is to gain his/her trust, you could try reassuring them how much you care about them, tell him/her how important they are to the family.

You may find it helpful talking to somebody, this could be a counsellor at your doctors surgery, friends and family. Joining a carers group, you could talk or listen to the group or if you prefer one to one with somebody running the group.

Some people can be put off by the thought of group discussions, in the beginning I was not to sure about it myself. I have found it can be very helpful, even listening to others prompts you to talk. The groups are very informal and friendly, you can be as much or as little involved as you want to be.

You can also access information to help you. Such as respite care, if you need a break or if you would like to go out for the evening. (That one isn't easy as your relative most likely would not want strangers in the home) Carer’s rights, benefits and a lot more information you may need.

Sometimes when you spend time caring for somebody it can be a bit isolating to you, I have found by going to the group I have met a lot of people and made a lot of friends. 

Some times the person you care for could become hostile or angry at times.

If you find yourself in this situation you may feel a bit wary or threatened.

Try to remain calm, if you become agitated he/she may pick up on this and may make him/her more agitated than they already are.

Try to enforce their trust in you, by saying something like you would not let anyone harm them and you are on their side.

It could also help if you could persuade him/her to sit down in a room on their own, leave them to calm down. Just pop in now and again to speak to them, preferably not about their outburst.

When he/she has completely calmed down, if you were upset or felt threatened by the outburst tell them exactly how it made you feel. Choose the right moment when discussing this. I feel it is important to do this. You will find he/she had no intentions of hurting anyone least of all you.

Staying calm is the key factor.

Having said all of this you are only human, nobody can remain calm all of the time. If you feel angry or stressed out and it helps to let off steam then go for it. The better way is for you also to get away from the situation, go off and calm down. I often sit in a room on my own, reading, watching TV, talking to a friend on the phone or go visit them or a family member, spot of gardening or tapping away on my computer.

How it can affect families

Watching somebody you care about going through mental distress can have a wearing effect on the carer and family.

You knew him/her before they became ill, you look at them and outwardly they look the same as before. Inwardly he/she does not seem like the same person, almost like a stranger.

They are the same person, it is the condition he/she is suffering from that has changed him/her.

It could help all of the family if they read about the condition he/she has so they can understand what is happening, and realise it is equally confusing for their brother, sister, son or daughter.  

It is also important the carers are given support from the family, little things like sitting with your relative or going out socially with him/her.

The carers need a break from caring. 

Recovery

Some mental health conditions can go on for months or even years. 

With the right treatment, support and positive thinking recovery is very possible, even with the more serious mental health conditions.

To help with the recovery of the person you care for, encourage them to get involved with outside activities and family activities.

From the earliest stage possible keep telling him/her they will get better; praise them when they do things no matter how small.

A lot of people suffering from a mental health condition can get through it and get their lives back so don’t give up hope.

I am seeing the results of this with my relative. 

You may have noticed I keep referring to a condition rather than an illness.

My reason for this is I think if you keep telling someone they are ill they will be ill. Psychologically it is like programming somebody. Off hand I cannot think of any other condition with a name that ends in illness. 

Hope

I have made reference to my relative and a reference to recovery. When my relative became ill nobody ever told me he could recover, in fact nobody told me anything at all. It was not until I started to research on the internet and joining groups and attending conferences that I found out about these things. I would also like to mention that nobody even told my relative he could recover.

On my travels I started to meet people who had recovered, started taking my relative to conferences on recovery and meeting people who had recovered. Just to show him he could get through this just as other people had. Recovery became almost like a religion to me I kept pushing recovery and encouraging my relative along the way. It has been a long road and it has not been easy. But slowly I could see my relative coming back from the hell he has been going through.

There was a time I felt I had lost my relative forever, this illness had snatched him away. Looking back I think the feelings of loss and sadness was more like a grieving process, only it was constantly in your face. With a loss, we all feel sadness, over time the grief heals and is not so intense. When going through an illness like this, watching someone you care about suffer the horrendous symptoms this illness produces. It feels like the grief you experience when somebody close to you dies, the difference is the intense grief goes on for years. This threw my whole family into turmoil.

Now I am seeing the fruits of my efforts and encouragement I gave to my relative. Three months ago he started back into main stream college, a day I thought I would never see. He plays football at the college and attends the gym to help get himself fit and burn off the weight he has gained. He is starting to be more sociable towards people he does not know and the voices are not so dominant as they have been. So do not give up hope for your loved one, they can recover and regain their life.

Update: Feb 2006: Passed his driving test 6 months ago (while on medication) In his second year at college, this has not gone without it's problems. Mainly the voices he hears, he nearly gave up a few times. (Lots of talking went on then) The longer he has been at college the more he has improved, the voices are less frequent now. Joined another football group for people with disabilities (not just MH) plays in football tournaments and sometimes travels to other towns to play competativly. Things are improving all of the time for him now, at last the light at the end of the tunnel is getting closer.