MHApps Take Control – Family Front – Perspectives From Family Spouse Children Sibling Parent Carer Partner

• Family Front
• Families need Information
  Most asked questions include: What is happening? What happens next? What about medication?
  Education
  I can’t cope with his/her behaviour. The doctor won’t talk to me. I feel I have lost my child.
  Support
  Knowing I wasn’t alone was a great help. Having a place to talk about my own needs. Sharing the ups and downs.
  “I think there definitely should be something that we should, as a family, go to. We don’t have to be individually seen. Because we’re not sick people, we just want somebody, psychologists or counsellors or whatever, somebody that will talk to us and explain to us what’s happening and which we didn’t get, we didn’t get any of that information till much, much later and a lot of it I asked for myself. And a lot of it I found out about on the Internet and by reading books and seeing movies on television and things like that you know”. (Family Support Study. Health Research Board 2006)
  “So the help was there, but one had to be very much on the ball” (Family Support Study. Health Research Board 2006)
  “Three mothers noted that they had received a lot of written information about schizophrenia and it was too “drastic”, and upset them even more because of the stigma associated with the word schizophrenia. The importance of personal contact and moral support was highlighted by these mothers” (Family Support Study. Health Research Board 2006)
  A group of parents and carers in Waterford undertook a research project into the needs of families caring for a family member with mental health difficulties. They note:
  “Respondents indicated that they required assistance in understanding what the information meant and how it would help them in their caring role. “Knowledge is power” is only true if people know how to interpret and make best use of that knowledge”
  And
  “Respondents sometimes felt their own lives were sometimes “put on hold” due to the demands of their caring role……It also highlights the crucial need for targeted supports to be put in place for carers as part of the development of a comprehensive community model of care”. (Every Mother’s Son. Waterford Parents and Carers Research and Advocacy Project. 2007)
• A father’s view “In starting, I would like to acknowledge the context in which all of us concerned with mental health operate, that is, within a mental health service that is historically underresourced. Now I’d like you to read a few lines, from one of my favourite poems – Milton’s Paradise Lost
  Round he throws his baleful eyes that witness huge affliction and dismay
  At once, as far as angles ken, he views the dismal situation
  Waste and wild.
  Regions of sorrow, doleful shades, where peace and rest can never dwell:
  Hope never comes that comes to all but torture without end.
  This is what being in hell is like. I would suggest that this is what being in the grip of mental illness is like.

• The Unknown
  As we know,
  There are known knowns.
  There are things we know
  we know.
  We also know
  There are known unknowns.
  That is to say
  We know there are some things
  We do not know.
  But there are also
  unknown unknowns,
  The ones we don’t know
  We don’t know.
  Feb. 12, 2002, Donald Rumsfeld, Department of Defense news briefing

• This quote above, while the source of much amusement at the time, puts it quite well. Actually knowing what you need to know is not easy. Families need a wide range of supports. Information plays a big part. There is a lot out there. Sometimes too much.

• Respondents sometimes felt their own lives were sometimes “put on hold” due to the demands of their caring role.

• Our own family journey started with:
• Confusion Throughout his childhood years our son was a happy, loving boy. We could not understand what was happening as things began to change. Between the ages of 12 to 21 our confusion and bewilderment grew. His behaviour changed radically, this led to difficulties in school, disturbed sleep patterns, sleeping all day, awake all night, angry tirades, blame and accusations. We began to believe that drinking and drugs were at the root of the problem. Cars and cheques vanished. Trouble with the law followed, with policemen at our door.
  Our efforts to get help for our son throughout this period saw us travelling the length and breadth of Ireland. We spoke to our GP, brought our son to counselling and attended family counselling over many years. At the same time we were holding down jobs; caring for our other children and trying to hold on to our sensitive and gentle son in what felt like the middle of a hurricane. There were many false dawns during this time.
  He spent his 18th birthday in the Rutland Treatment Centre. We were heart-broken yet hopeful. He completed the treatment. There was no breakthrough - no diagnosis.
  Our son moved out of home. We helped him get a series of rented flats. He tried to work. Looking back now, we can see the fallout for other family members. The cost was high, both financially and emotionally.
  A series of hospitalisations led to a revolving door of treatment followed by discharge - often into homelessness. We got used to waiting for hours on end in busy A and E units. Sometimes our son was loud and angry, sometimes distraught and weeping. At first we were self-conscious and embarrassed both for ourselves and for the other patients waiting to be seen. We tried to engage with medical staff, looking for information around treatment and around care plans. Our son was now over 18, and information was hard to come by.
  This long period of confusion eventually led to:
• Comprehension A final breakthrough came with the diagnosis of the illness. It took ten minutes in a psychiatrist’s office. He told us he had no doubt at all that our son was suffering from schizophrenia. We were shocked. We couldn’t understand how through all the years of seeking medical help - this diagnosis had never been made.
  We were given a bleak prognosis, which we were initially unable to take in. There was no support and little information available to us. We struggled to come to terms with the nature of this life long illness. We began to realise that we were essentially on our own. It dawned on us that we would have to help our son cope with this illness for the rest of our lives. A slow and uneven process began, whereby our son gradually came to accept his illness. We in turn began to have some understanding of the measure of his suffering.
  A major breakthrough occurred when - at our lowest point and in a moment of pure crisis - we contacted Schizophrenia Ireland. We were introduced to a carers’ group. Comprehension about the nature of this illness began to sink in. We were and continue to be - greatly helped by
  the experience and support offered by other carers and parents in the group.
  The relief was immense that after years of searching we found:
  · We were not alone
  · We were not the only ones struggling to understand this devastating illness
  · We were not the only ones going over the past, trying to find out where we went wrong
  At the carers’ group it is possible to say it like it is. We experience acceptance, friendship, discretion, wisdom, shared experience, a wealth of information and sound advice. This contact, we firmly believe, has been central to our recovery as a family.

• Compassion As our understanding of this terrible illness grew - we came to understand the suffering endured by our son and all who struggle with the symptoms of schizophrenia. With this understanding came compassion and acceptance. We embrace the challenge with hope and decide to fight back. Our journey has led us through stages of confusion, comprehension, compassion and finally to commitment.
• Commitment By commitment we accept the responsibility and challenges of supporting our son as he fights his way through the maze of schizophrenia. We accept the setbacks. We are learning at last to distinguish between the illness, it’s cruel symptoms and our own unique and loving son. We are committed to supporting him in every way we can. We continue to campaign for his rights and the rights of all with a diagnosis of mental illness - to proper treatment and best practice - long promised but much delayed.
• Co-operation At all times we as carers are more than willing to share our experience and knowledge of the illness. We seek to work in cooperation with the Mental Health Services, GPs, Voluntary Bodies, Shine, FOCUS, the Gardai, Statutory Services and all others working for change and improved outcomes for service users and their families.
• Conclusion Milton’s vision of hell with which I started, sums up for me the anguish of mental illness. To some extent I live, in my mind, the life that my son lives – social exclusion – in society, but not part of it – with few friends – trying to achieve goals that without professional help – he will not be able to achieve – stumbling from day to day – full of aspirations and hope one day – hitting rock bottom the next. I have come to understand how hopeless and powerless his symptoms leave him. I have come to see how overwhelmed he can be by terror and fear – with little help except from his family and his medication.
  I am saddened that I cannot do more to help him.
  I am full of admiration for his determination to work, his immediate response to the offer of a day’s work, even a Sunday job, his fierce desire is to build a better life for himself, a normal life.
  After 11 years on the housing list our son has at last succeeded in getting a suitable local authority apartment of his own. A miracle! This meeting of the most basic human need for shelter and security has helped his wellbeing and self esteem enormously.
  I am full of admiration for his courage in facing each day. I struggle with my own anger at the shortfalls in the system,
  · the underfunding
  · the neglect
  · the lack of support
  · the absence of structured care and recovery planning
  · the absence of follow up
  · the failure to include carers as active partners in the recovery of their loved ones
  · the failure to deliver joined up services to those whose lives are affected by mental illness.”

• The Mental Health Commission undertook a consultation into what might constitute a quality mental health service in Ireland in 2004. Below is a summary of their findings on the needs of families, parents and carers.

• The Mental Health Commission has established three important themes, which reflect the needs of families. What constitutes a quality service for families, parents and carers?
  Theme 7: Families, parents and carers need to be empowered as team members, receiving information and advice as appropriate
  Families, parents and carers want to be part of a solution-focused approach to treatment, and to play a constructive part in the team, aiding the person who is experiencing mental health problems. There were clear differences of view between families and service users about the level of involvement that families can legitimately expect to have in relation to knowledge about the person’s illness, information about treatment, planning and decision-making.
  Theme 8: Effective family support services need to be in place to reflect the important role that families, parents and carers play in a person’s healing

• “Yeah it was hard, but it was brilliant there. I was in hospital and I felt safe, safe from myself and safe from others. Everybody was so nice, the staff, the other patients. It was comforting to know exactly what time meals, medication and the cups of tea were at. I attended whatever programmes were available on the ward. I had loads of visitors. All in all I was there about six weeks. The other patients used to joke that I was the one who “got away”, that is, I never took up smoking!”

• “We didn’t know where to turn to. We could not get Shelia to see the GP and when we tried to talk to the GP, he said Shelia is over eighteen and she would have to come in of her own free will. On Thursday, May 14th, Shelia was running around the town spending money like water, she couldn’t sit down for two seconds. Every time we tried to speak to her she would become angry and suspicious and accuse me of trying to control her, I don’t know where she got the energy. When she wasn’t out she would pace up and down the floor for hours, all night sometimes. We tried everywhere for help. Eventually things got so bad that on Sunday June 25th Shelia consented to see the GP.”

• It is important to acknowledge the good experiences people have when they access the mental health system. Unfortunately, not all experiences are as good as others.

• “You need the success stories. It keeps you going in this job; I love it when someone comes into hospital, responds to treatment and leaves. You might meet them down the town, they may or may not wave at you, stigma I think is a reason they don’t, but they would always give you that invisible nod of the head or look in their eye, one of gratitude. You know you have made a difference. Sometimes people will be back in a year later or whatever. It’s really tough for them and their families. It is. It’s very hard to stay well sometimes. We all know that, it’s hard for everyone, but for people with big mental health problems they need a whole lot of support. Mostly we can do that. You get to know what helps. A lot of the time it’s really simple stuff. ”

• Families need a range of support services for themselves at various stages in their family member’s illness and recovery process. The main areas of support needed by families in a quality service, in the view of the stakeholders, are:
  · Information, advice and being part of the team
  · The family being empowered as team members
  · Provision of a continuum of support services for families
  Theme 9: As with people who use mental health services, families, parents and carers need to experience understanding, empathy and respect. Families, parents and carers expect understanding and empathy, and a respectful service. They want to be listened to carefully, and have their views respected. They want to be treated as equals with professionals and be shown respect, and be kept up to date with what happens to their relative.
  They go on to comment; families highlighted the provision of information and advice as their most pressing need from a quality service. In the first instance, they need factual information about what services are available, how the services work, and how to access them, especially in a crisis. Information about support groups for carers, workshops about mental illness run by health boards, and peer support groups where people can exchange views were found by families to be particularly helpful to them.
  Families accept the need for client confidentiality, but express a great deal of concern about its impact and about the way providers operate the provision. Essential information, for example in relation to discharge planning, may be withheld from families on grounds of client confidentiality. On the other hand, a skilful professional can help a person to understand the benefits of sharing information with their family.
  Families need support at every stage in the person’s illness and recovery process. In particular they highlighted the need for counselling and therapy to help them to deal with pressures on their own mental health, arising from stress and anxiety. Family therapy is needed to help to rebuild family relationships, and to give support to siblings of the person who is ill.
  As was the case with people using the services, families expect understanding, empathy and “a shoulder to lean on” in a quality service. They want to be listened to carefully, and have their views respected. They want to be treated as equals with the professionals and be shown respect, while being kept up to date with what happens to their relative. (Quality in Mental Health. Your Views. Mental Health Commission 2005. You can view the full document on www.mhcirl.ie)

• If only my husband was alive he would know what to do, maybe Shelia would not be like this, maybe it is my fault she is here. My thoughts were cut short when I heard a porter tell my daughter she can’t smoke there. She told him to f--- off and she could smoke where she liked. Everybody in the waiting area perked up at a bit of entertainment. I rushed over stammered out an apology and caught Shelia by the elbow and steered her outside. When we got out there I lost my cool. I didn’t care who heard me, I called her a selfish little b----, a lazy good for nothing and asked her what her father would say if he could see her now, he would be ashamed I told her. Just then Sheila’s face scrunched up and a large tear appeared at the side of her eye. She cried and said, “I am sorry mam” in a voice so soft I barely heard. My heart broke in two, but all I could say was ”where the hell is the doctor”, I turned around and walked back in.

• Brothers and sisters ‘Sibling relationships… outlast marriages, survive the death of parents, resurface after quarrels that would sink any friendship. They flourish in a thousand incarnations of closeness and distance, warmth, loyalty and distrust’. (Erica E. Goode, “The Secret World of Siblings,” U.S. News and World Report, 10 January 1994)
  Dr Jo Smith, a consultant clinical psychologist in Worcestershire has taken a special interest in the needs of siblings. As part of her presentation at the Recovery and the Family Conference in Wexford in 2009, she outlined some experiences reported by siblings.
  · Alterations in their relationship with the affected sibling and other relatives
  · Adverse impact on emotional wellbeing
  · Neglect of personal needs
  · Difficulties in maintaining friendships
  · Decreased academic performance
  · Increased responsibility at home
  · Ignored by psychiatric services
  · Low awareness of genetic vulnerability
  · High levels of involvement in caring for the affected sibling
• Common Sibling Experiences · Siblings struggle with the changes they observe in their brother or sister or their relationship
  · Siblings lack knowledge and experience and can find it very difficult, distressing and frightening at times when someone in the family is psychotic
  · Siblings may feel their parents are preoccupied and they do not get as much attention as the person who is psychotic
  · Siblings feel for the sibling who is unwell
  · Siblings may have anxieties about their own mental health and risk for psychosis
  · Siblings rarely get information or support from services
• A Sister’s Experience “I was 16 when my brother first became unwell. He came into the house telling us all he had driven his car through some bollards and terrorised a learner driver. We went outside to look at his car and found that this was not the case. Needless to say we were all confused at what he was saying. The first time my brother became ill his behaviour was so bizarre I don’t think any of us knew what was going on. Me and my brother had always had a stupid sense of humour so it took us a few moments to realise he was talking rubbish for no apparent reason.
  I think the hardest thing to come to terms with was how quickly my brother became ill, it literally was overnight. There was no time to get used to the way he was, we had to start managing straight away. We all handled him differently and at times one of us would be more impatient and this would cause conflict amongst us all. I was often shocked with some of the things he would come out with and when he would say something strange we would say “Well that’s what you think at the moment, but we don’t think that.” Often he would leave me speechless and I felt so helpless that I could not wave a magic wand and bring my brother back.
  I think before I fully accepted what my brother was suffering with we were already in the thick of it. I remember one of the worst evenings where I watched my brother literally crawl the wall; it was like a scene out of the exorcist and a side effect of his medication we had not been warned of. The four walls of our house had never seemed so small. I quickly learned how uncomfortable it made people, for me to talk about my brother’s illness, and soon learned it made others more at ease to say he had suffered a break down, rather than mention anything to do with his mental health.
  I didn’t know anyone else that had the same or even a similar situation to me and I remember feeling very alone and resentful to the people around me who were genuinely happy and not just putting on a brave face as I had to.

• No matter how unwell or distressed we are as a person, it is only when we hit our own crisis point that we seek help, regardless of anybody else’s opinion. So remember, crisis points are individual to you. That’s why some of us will endure more than others. We all have our breaking point. The trick is to try to recognise when we are heading for a crisis early enough, so that the crises diminishes or even disappears.

• “Although we were relieved she consented to see the GP, it was Sunday and our family GP was closed. We then called Care Doc, (an out of hours service, for emergencies). After a few brief questions the Care Doc decided they were not familiar with my daughter and they could not see any reason to refer our daughter to the local department of psychiatry. She sat there as polite and pleasant as anything, I felt the Care Doc was looking at me as if I was the one with a problem. But she gave me a letter for the local A+E department anyway. Now I thought, we are going to get help, Sheila was becoming a bit agitated again, and I quickly presented the letter to the receptionist.

• Eventually a man approached us and asked us to follow him. I asked him if he was a doctor. “God no” was the reply “no such luck, I am a psychiatric nurse”. He led us down a corridor, led us into a small room, asked us to sit and told us that Dr Johansson would be with us in a minute. I tried to move my chair back a little but it didn’t move. I looked down and saw it was bolted to the floor. I glanced over at Sheila and could see she was very upset and scared looking. I reached out to her and squeezed her arm; she jumped as if she was shot. Just then the doctor walked in. A good-looking young man in a white coat, he introduced himself. I barely understood what he was saying; his accent was so strong. “How are ye to day” he asked. The funny thing is, I said, “we are fine”, and so did Sheila. Doctoritis, I think.”

• Very few people understood what I was going through and I became less sociable. This was partly to do with the guilt of going out and leaving mom and dad to handle my brother, but also I just did not have the energy and enthusiasm that I used to have for socialising.
  Unfortunately my brother became ill around Christmas and so this usually very happy season was ruined. This was very difficult to deal with and we were very isolated at a time that would usually be crammed with family and friends. We were cautious of my brother being around young cousins because of some of the odd things he used to say. My brother was so unpredictable, very angry one minute, very anxious and frightened the next.
  He experienced very vivid delusions and thought he was our late grandfather, thought he needed a wheelchair and thought he could talk to God. On many occasions when I or my parents had planned to use public transport, my brother would become obsessed that there was a bomb on it. None of us could put the television on as my brother experienced voices and thought that he was being sent messages through the TV. Needleless to say this made trying to live our lives as we had before my brother became ill, an impossibility.
  Unfortunately amongst all of this my pet rabbit died, and my brother in his confused state thought he had killed him, this meant I was unable to grieve for a truly treasured friend. My brother spent two periods of time in hospital, one from which he escaped and we had to receive a very distressing phone call to inform us of this. I never went to see him in hospital; I just could not cope with seeing him there. Now I feel riddled with guilt as he often requested me to visit and it is something I have never forgiven myself for.”
• My Feelings At the time, I felt very neglected by my parents as all their time, energy and thoughts went into my brother. This was not without the understanding that my brother’s needs were greater than my own, but at times important things for me were not acknowledged. At my brother’s worst, he would only sleep in my bed with me, however, this was very fidgety disrupted sleep and he would be up early needing mothering and reassurance. This was extremely physically and emotionally draining. Although my brother was very draining for the majority of his illness, we would laugh at some of the things he did and said, because that was our way of coping. I know that I owe a lot of my coping ability to the fact that I had and still have an extremely supportive boyfriend and I know that things could have been very different without him with regards to finishing my degree for example. I would have greatly appreciated the opportunity to have talked with other siblings in a similar situation, as I know my main struggle was feeling like I was alone.”
• The Sibling ‘No man’s Land’ The UNAFAM study highlighted a ‘no man’s land’ for siblings where they face a number of paradoxes: (Davtian, 2003)
  · They have too little information yet they know too much
  · They are often involved but without a defined role or knowing what is expected of them
  · They experience difficulties but asking for help may risk making themselves more vulnerable
  · They often find themselves in the dilemma of choosing compassion or abandonment

• There are virtually no services available for siblings in Ireland. As noted above, the needs of brothers and sisters simply do not come up for discussion. The “No Man’s Land” above describes very well the often silent and lonely journey that sisters and brothers have to face.
  Useful and appropriate information and knowledge can help family members to improve their navigation of the process. As in all stressful situations, it is very important that everyone gets the chance to talk about how they are feeling. Too frequently emotions are ignored, or buried and then burst out in anger at the worst, or maybe not the best time.
  It is easy to loose sight of the ordinary, everyday things that keep us ticking along. People talk of putting things on hold, feeling that they are walking on eggshells all the time.
  If a family member is very unwell, it may be that everyone has to find a way to re-imagine their role and develop new and different personal responses.

• As a wife “My husband has a diagnosis of bipolar disorder. Maybe! I have good supports. It feels good to be sad and angry and frustrated instead of putting on a bloody happy face all the time, I am ditching that! It has been a long journey. At this point I try to be with my husband when he is withdrawn. Just to sit with him, even if he is saying nothing. I don’t feel angry with him anymore. That may be part of my recovery. There have been many very bad times when I have been afraid and did not know where to turn. I went to our GP to get some answers. He said that psychiatrists did not like to diagnose too quickly.
  My husband has been hospitalised a number of times, some for long periods. I thought he would be ok.
  I was still completely ignorant and did not understand anything that was going on. I was trying to support a loved one experiencing a severe mental illness, yet I knew nothing about mental illness.
  Some time ago I came by some booklets. I shoved them under my coat so no one would see them, and that evening just before I decided to bin them all, as this still was not happening to me, I opened a page of one of the booklets and became engrossed. I read every page of those booklets that evening and cried as I realised that this was happening to us. It was like reading our life in written form. This was the day that I received the information I needed to start my recovery process.
  I have attended a support group for relatives, which was a very hard step as it made everything very real. I had such similar experiences.

• I feel very passionate about information being out there and available to relatives and people with self experience. I think it is unacceptable that I had to come across the information almost by accident.

• Through my experiences I have grown and developed as a human being, I have matured and gained so much confidence. Recovery is not just something that people with self-experience need, even though it is vital, but families need support to recover too. The impact of struggling to support a loved one through their own journey of mental illness is so hard and extremely complicated. Relatives need information, support and education too if they are ever going to be able to support their loved ones and themselves on the road to recovery.
  Struggling to support a loved one experiencing mental illness can in itself cause physical and mental illness in relatives, so it is vital that supports like free counselling, advocacy, support groups, family education courses, a helpline and plenty of information are accessible to relatives also.
  I do not feel that the mental health services provide adequate supports for anyone, I also feel very strongly that people using these services and their relatives must be informed about organisations outside of the H.S.E. and this can be as simple as providing a simple telephone number. It is not rocket science.
  Everyone needs to look outside of our own areas so that everyone involved in mental health in one way or another can come together and join forces. You cannot possibly support anyone if you do not have support yourself. When you are in a crisis you do not always see the things that you should see, sometimes you have to be told that they are there, as your mind is elsewhere.
  So to end, it is my feeling that the only way that families’ needs can be met, is if everyone involved in providing services in the area of mental health, put aside what they feel is right or wrong and concentrate on what families ask for and want, as people with self-experience and their relatives are the real experts on mental health, as they have lived what professionals learn from books. Nothing can compare to lived experience and everyone’s experience, although similar, is an individual experience, so must be treated as such. Individual experiences must be included and listened to. It is about a fundamental human right to information, education, support and most of all choice.”

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